Posts Tagged ‘Chronic Pain’

Fresh spoor


I follow as closely as I can the tracks of my silkee as she wends her way along the strand.  The call of the sea has been strong of late, as she is suffering most grievously here on the shore.

Shortly after the previous post, some nine months ago, she began to have painful spasms in her throat.  Soon she could not eat normal gluten-free food.  She had to go to a soft food diet.  I took her for an EGD.  A few days before the procedure, she began having a different kind of chest pain.  We told the anesthesiologist, and he demanded a cardiac workup.

Off to find a cardiologist, who found low to moderate blockage of one cardiac artery, and prescribed a vasodialator that kicked off abdominal migraines (twelve to eighteen hours of non-stop, uncontrollable vomiting).  Then another med, and a third, all triggering abdominal migraines, before she dropped her as a patient.  The GP refused to prescribe her abdominal migraine meds, because of the heart condition.   She was having ten  to twenty episodes of cardiac pain a day, sometimes passing out, popping nitroglycerine pills and enduring the resultant headaches.  Off to find a second heart doc.  Insurance refused to pay for an arteriogram, we waited to get one done as part of a research project.

By this time she was barely holding on, the cardiac pain and fatigue were so severe, she was unable to do anything:  write, read, watch TV.  Her depression worsened.  Her FTD was getting worse.  Before, she had a wall up to keep out the unwanted thoughts generated by the dying neurons in her brain.  She has practiced for fifteen years a Theravada Buddhist mental culture, anna-panna-sati, mindfulness of in-and-out breathing, the Burmese Forest School version, brought to the United States by G. V. Desani.  She has also her japam, and ishta as a bhakti yogini.  These kept up the wall for years.  Now the wall came crashing down.  Nightmares happened while awake as well as in sleep.  Hallucinations occurred, quickly recognized as such, but disturbing, nonetheless.  She sometimes feels abandoned by God, and has to fight through her own dark night of the soul.

She began falling, and re-injured her knee, repeatedly.  This kicked off pain crises involving her RSD.  Her pain  has been out of control for months.  She now must use a chair-side toilet, as the bathroom is too far away for her to walk.  Other, new pains appeared.  Intense, sharp, deep joint and bone pain; greatly worsened fibromyalgia-like pain.

Cardiologist number two had no clue about how to treat cardiac angiospasms.  I did the research and recommended a treatment plan for him, which he prescribed.  At least he finally gave the approval for the EGD.

The EGD found no pathology other than mild irritation of the lining of the esophagus and stomach.  Smooth muscle spasms again.  Again, GI had no clue of how to treat it.  Referred her to other, useless specialists (we could do some tests, but we couldn’t do anything to treat you, regardless of the outcome of the tests).  Twenty minutes on the internet yielded therapies apparently beyond their ken.  Now off to find a doctor smart enough to prescribe them.

Her heart pain is now fairly well controlled, using the beta-blocker, metoprolol.  This med also eased the nightmares that she has suffered for years.

Her throat spasms are worse, she cannot have even soft food.  She’s on a liquid diet, and sometimes has problems even with that.  Cooking was a way to show her love, now that is gone, too.

Typing is more difficult for her, neurologically.  So we adapt.  She will tell me what she wants to write.  I draft, she comments, and we repeat until she’s ready.  This is the first product.

The Light and the Tree


A  few nights ago, I was looking out of a window and saw a street light that was next to a tree casting an eerie artificial light on the tree’s leaves.

For a few minutes, I was transported back to a night when my 16-year-old self was staring at a light shining on a tree outside of the window of my great Aunt Jewel’s house which was located in a small town in Texas

I had just received my driver’s license a few weeks before.  Ever since the movie, American Graffiti, many fad’s had been revived from the 50’s, one of them being “cruising.”  Early in the evening, I had been cruising down main street in my yellow Maverick with my younger brother who was a reluctant passenger.  We had been going to visit my grandparents at least one weekend a month ever since I could remember.  My cousins were much older than we were and there wasn’t much “treasure” left up in the old closet upstairs at our grandparent’s house  for us to discover.   I was thrilled to be able for the first time to  drive up and down Main street, windows down, radio playing “We Are the Champions” and local boys honking their horns and shouting, “Baby come take a ride with me.”

When I was looking at that light many years ago, I remembered at that moment feeling excited that a new world of possibilities was opening up for me and also secure in an environment of extended family that wrapped their  loving arms around me.

Then I came back to myself as I am now  looking at the light next to the tree.  I thought about my grandparents, my great-aunt who passed out of this world years ago.  I began sinking into constant pain and and dwelling in disappointment that my grandchildren will never be coming to “Grandma’s house for the weekend.  I  lived in a world where I had lost much.  Before I feel  down any further in the well of despair, I stretched my back and lifted up my head and whispered a short prayer.

My mind flooded with many life  lessons  that have resulted in strength,understanding and compassion.  I realized I do have in front of me a world of possibilities and ahead lies the preparation for shedding this broken shell. I will continue my journey  with my true identity, that part of us that always will be  Imagine those possibilities  and as Captain James T. Kirk, Starship Enterprise, once said, “To infinity and beyond.

Updates on Pain


Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

Now I am going to give you some updates on pain.  I’ve been meeting many people in the last few months who have other illnesses and also have developed chronic pain disorders.  Many of them are suffering greatly because their doctors do not know how to treat their pain.  I encourage all of them to see a pain management specialist.  Unfortunately, as many of us know, even seeing a specialist is no guarantee that your pain will be controlled.

There is some new information in the American Pain Foundation’s Spring Newsletter.  For those of you who are interested in Occupational Therapy there is an article written by an Occupational Therapist.

In “Health Decision Putting Your Best Foot Forward,” the author talks about challenging the decision that the doctor knows best.  Most of us who have chronic pain disorders have found ourselves in the difficult position, should I listen to this doctor and go quietly out of his or her office without adequate support for pain control or should I speak up for ourselves and try to get the medication and therapies I deserve?

Getting adequate pain relief unfortunately often  means seeing several doctors until you find one that will really listen to you and agree to be part of your team in helping you achieve good pain control.

I have found that bringing Selch to my appointments has been a really big help.  Having someone go with you to your doctor’s appointment who is knowledgable about your condition and is willing to stand up for your rights goes along way in helping you to find  health care professionals that will help you with your pain.

If you don’t have a friend or a relative who can fill this role, I suggest that you check out local pain support groups in your area and see if you can find someone in the group who is willing to be a “patient advocate” for you.  If you can’t find someone locally search for support services available in pain foundations and also visit different pain support groups on the Internet.  Post that you are in need of someone in your are to act as a “pain advocate” for you.  You may not find someone right away but I’ve found that when I am looking for support, persistance matters.  If you are in too much pain, ask a relative or friend to do this for you.

I cannot stress how important it is for anyone with a chronic pain disorder to get the help they need to achieve good pain control.  Any of you that have other ideas and experience to share regarding finding help for pain control, feel free to reply to this blog post.

Karen Richards writes some interesting articles on pain.  See “Growing Pains, a Predictor of Fibromyalgia,” She refers to an article in Reuters and talks about misconceptions about growing pains and how growing pains may be an early indicator of fibromyalgia.

Another very interesting article by Karen is “War on Drugs Has Ended – What Does This Mean for Pain Patients?” If you have read my blog, you know that I have posted more than once about the “War on Drugs.” Karen writes, ” In May 2009, nearly four decades later, Gil Kerlikowske, the new director of the White House Office of National Drug Control Policy (ONDCP), declared the war on drugs to be over.”  This guy must not be living on the same planet as those of us with chronic pain disorders.

Health care providers and even pain management specialists in growing numbers are refusing to give people who have chronic pain the narcotics they need to function day-to-day in their lives because of past DEA actions, pending regulations and the constant media exposure of the continuing War on Drugs.  Totemism regarding narcotics is still prevalent.  There are still so many people saying that we need to get rid of these evil narcotics that are destroying so many lives.  Eliminating prescription narcotics will do nothing to stop people from recreationally using narcotics.  They will just go to another readily available source to get their drugs.  Pain patients are left without adequate pain control.  When will the media and the government start caring about the millions of people in the world who are suffering from chronic pain?

About the ONDCP’s educational efforts regarding the needs of chronic pain patients, I am afraid it is too little too late.

The Pain Monitor from the APF has some interesting info for people with chronic pain. It has news information about different pain topics as well as resources for chronic pain patients.

These are some pain updates for April.  As always, I hope to be your faithful correspondent.

Living with FTD-suffering


I recently read an article “You will call, I Will Answer.

Anyone who is going through suffering will be able to relate in some ways to William Stunz’s account of his life.  I don’t totally agree with everything that he says.  It has helped me over the years  to read accounts of other people’s suffering and also talk to other people who are suffering.  Each person who is suffering  needs to find tools to cope.

A book that I hold close to my heart is “The Revelation of Divine Love” by Julian of Norwich.  I can give you no better explanation of the connection I feel with the Anchoress than Selch describes in his recent post.

Stunz talks about how he felt when people inadvertently blamed him for his pain due to lack of faith.  Many of us who have an illness or who are  caregivers have  experienced well wishers who tell us we need to have more faith or things would be better if we prayed more often.

I was raised in a family who went to a fundamentalist Christian church.   Now I practice  Bhakti Yoga and Theravada Buddhism.  I do not judge anyone’s faith or religion.  All paths  lead to God. We are all a part of God, brothers and sisters, connected by our souls.

Why does God let bad things happen to good people?  There have been countless books written on this subject and for many, this question has no answer.

Dr. Stunz says, ” I do not think that my suffering is God’s discipline.”  I agree that suffering is not literally “God’s discipline”, but I do believe in  karma good and bad.  We make our own karma, some life experiences are decided before we come into this life and in other matters we have free choice.  We are also affected by other people’s karma. Karma has helped me personally to  understand suffering.  What is good for spiritual growth may not seem like a good thing for us while we are living in our physical bodies.   The reality we perceive as humans is only a small part of  “The Truth.”

This does not make suffering less painful or less real for us.

Stanz recounts about whether or not suffering has made him a better person. We have heard many times that suffering will make us stronger and that is the last thing we want to hear.  My own experience parallels the experience of Dr.  Stanz.  At first, when I developed chronic pain I was overwhelmed by sadness, depression (anger turned towards myself) and despair.  I came to realize that I did have a choice, give up or go on with my life one day at a time.  If I dwell on the past too long , it does nothing to change my current life and it wastes the limited energy that I have that could be used in a positive way to make myself and others feel better.

For those of us who suffer and those of us who are caregivers, we must realize that life changes for everyone.  Chronic illness, FTD in particular, changes our lives, behaviors of the caregiver and of the loved one, in  particularly difficult and often incomprehensible ways  While the illness robs us of many things, the part of us that is real and true, the being who cares, loves and wants to reach out to others is still there.

When a woman is grabbing the arms of her husband  because he is trying to take the car keys in a boorish and childish manner because he has FTD and doesn’t believe or remember he can’t drive, doesn’t she think of the many times those arms around her made her feel safe and warm?  She has reminded him so  many times lately that he cannot drive and she thinks about when she may have handed him keys with no thought of peril for his well being.  When you can’t manage not wetting your pants do you ever think about the time not too long ago when you put your pants on one leg at a time without any thought and managed an entire department of people?

We must not forget who we are, our true selves and understand that the disease is causing these troubles and behaviors and the disease is not who we or our loved ones are.  We should hold tightly to this life rope that connects us to who we really are.  It will help us hold on to our dignity and compassion for ourselves and our loved ones during the most trying times.

I agree with  Dr.  Stanz that accepting that I had a terminal illness was easier than I thought it would be. Once I accepted that everyone dies,  I am understanding there are blessings  that come with  a shorter span of  interaction time with the world  so I should try to enjoy things while I can

I had an eating disorder when I was young and I have never liked food.  Now I really enjoy eating.  Selch is cooking dinner right now and preparing fruit salad.  Who would have thought that fruit salad could be downright delightful?  I appreciate small things like chocolate pudding, looking out the window and watching the birds,  and talking to an old friend.  It is a struggle for me to go out anywhere, but I still find activities that make me feel good.  Like  Stenz said, he was able to feel more physical pleasure.

I often go to Second Life which is a virtual world on the Internet.  I have an avatar there who can fly, swim, sail, see many beautiful places and visit many interesting people.  I think allowing fantasy and creativity in to your life when you are suffering is a good thing.   We have forgotten how to play as we did when we were children.  Yes we have responsibilties but  all of us who are suffering could use some play therapy.

Last year was the roughest year of my life.  What helped me get through that bad time was definitely my relationship with Selch,  my partner.  During that time, Selch often teased me that I was Jobette.  One bad thing after another kept happening until I got to the point that I felt like I only had a few things left to lose.

Many things and relationships I thought had to be there for me to ever be happy again didn’t need to be there and were actually impeding progress in my life.

Progress in life has a lot to do with knowing, loving, accepting and protecting yourself as you would your dearest friend.  I can only change what I do.  I cannot change anyone else just by insisting that they be the way I want them to be.

It may feel like we are not in control of our lives because of the circumstances that we are in.  But, we make choices all of the time about how we will react to the situations where we find ourselves.

There is something to be learned from everything that I experience.

I practiced mindfulness exercises before it became “fashionable,” and  these practices have greatly helped me with my struggle with difficult and unwanted thoughts.    To be able to quiet the mind of all its busy thoughts for even a short period of time is very helpful.  Like any exercise the more you do it, the easier it is to do and the benefits are greater.

I am learning  to stop caring about what people think of my situation. Selch and I have to focus our energy on living our lives the best way that we can.  It is so true that real friends will be supportive and if they aren’t, then they are not a “true friend.”  This also applies to family members.

If you are sick or you are a caregiver , it is you who are in the trenches.  You don’t need a lot of well wishers who don’t want to get their hands dirty.

I am in constant pain and FTD is keeping me from “controlling” many areas of my life but I constantly remind myself that the illness cannot control who I am.  Eventually it will disrupt my interface with the world to the point that I will not be able to communicate or understand what anyone is saying to me.  I have spent years in this life continuing the journey towards self-awareness.  What will happen as  I  watch the disease that is causing my physical body to do things I would never do?

Maybe, my weird sense of humor will remain.  I hope I will be able to be tolerant and understanding of that physical body that is the shell of me.

Mr. Stenz spoke of one of his fears of death was the fear of be disappointed that he didn’t live a better life.  I can relate to his feelings.  Sometimes I still do ask my self why I am  here but now  less and less I feel like my life is not useful so why don’t I just die?  I know I have  been given blessings of a well stream of creativity, the dam of writer’s block has burst.  I have so many characters telling me their stories, I often wonder who should I tell what and when in this limited time that I have.

Why do I live? Why is there suffering?  Perhaps, like children we ask many questions but as we grow in time, life (the continuing journey and existence of our being) we will no longer need to ask the question.

Brain Scan-I Feel Your Pain


I just read an article about a brain scanner that may be able to help assess pain.

“The definition of pain is that it is subjective, and until now an objective measurement has remained elusive,” says Morten Kringelbach of the University of Oxford.”

As I have read before, the author points out that functional MRI scans have been used before to identify brain areas that “light up” when someone is in pain.  I was excited about this news when I first read it until I found out results varied from patient to patient.

I have never read about  analysing arterial spin labelling that  measures how much oxygenated blood is flowing through particular areas of the brain.

The procedure seems interesting but their participants for the study were 16 young men who had just  had their wisdom teeth removed not chronic pain patients.

Perhaps it will provide an additional way to assess pain in addition to the well-known “pain scale” which I agree with the author is an ” inadequate measure of pain”.

I’m not sure that identifying which areas of the brain are involved in a person’s brain will lead to personalized treatments that target those areas until we have drugs that are better able to target specific areas of the brain for treatment. Of  course physicians are learning more and more about which drugs work in certain areas.  For instance, methadone works better for central pain.

As the article points out, there are challenges because responses to pain do vary throughout the day and there will be differences in the level of brain activation in one person to the other.  Pain is still a complex issue and there is still much to be learned about pain syndromes.  Emotions affect pain and now physicians are learning that chronic pain can spread like a cancer and “glob on” to various emotional responses.

Jeffrey Mogil brings up the possibility of the brain scan being used to measure pain in people who are locked in and who are in a vegetative state.  I’ve been doing some research about this phenomena of being “locked in” because of my frontotemporal dementia.  I wonder what I will be able to feel once I am no longer able to communicate and no one is able communicate with me.

This is a picture of New Scientist Magazine.  I have found some really interesting articles in this publication.

In the article, “Coghill warns against disregarding someone’s description of pain in favour of an objective measure. In the US, insurance companies would jump on an objective method of measuring pain, but this could mean that certain people with different patterns of activation lose out,” he says. “We need to ensure that patients are never in a position where they are denied treatment.”

The idea that insurance companies might want to jump on the band wagon to use this tool to deny chronic pain patients treatments and meds is a real possibility as those of us with chronic pain know all too well.

The last part of the article discusses whether pain is a symptom or a disease.  After much research and many discussions with a very intelligent pain management doctor who is always “up” on the latest research, I have concluded that pain is not just a symptom but a disease.  Remember about the finding I discussed earlier how in chronic pain, these pain signals latch on to all sorts of neurological responses?

The researchers mentioned in the article agree that  chronic pain is associated with functional, structural and chemical changes in the brain which redefines pain as a disease.

Let’s hope that further research continues to validate that chronic pain in reality is a complex disease that needs to be treated.  It affects the lives of millions of people all over the world.

Chronic pain- Recent Updates


Hi everyone,

Recently, I’ve been having a difficult time with various illnesses  so I am a little behind on posting.  I have found multiple articles that may be helpful to those of you with chronic pain.

First let’s discuss slow breathing might help pain.  I first learned about this practice in prenatal classes prior to the birth of my first-born.  Imagine the scene on of Alien when Sigourney Weaver’s guts were being ripped apart by the alien.  Slow breathing did little to help 13 hours of Pitocin induced hard labor.

Fortunately, I have found tha slow breathing can be affective for chronic pain as well as anxiety attacks related to my FTD.  The author also mentions mindfulness exercises which I do incorporate with slow breathing.

Try to sit in a relaxed position.  Breathe slowly and concentrate on each breath and how it feels as it goes in and out .

Regarding mindfulness exercises, the mind is a wild horse and it takes awhile to “break it in.”  If you continue practicing mindfulness exercises which can be something as simple as repeating one syllable phrases over and over again, the results you will gain in helping to control your pain will be well worth the time.

The next article is Tattletale Pills Remind You to Take Your Medication.  Two topics are discussed.

Companies are using wireless technology to develop devices that monitor whether you take your pills.  One way people may be doing this in the future is swallowing a microchip about as thin as a few human hairs.

Over a two-year period, it became increasingly difficult for me to remember to take my medicines and take the correct dosage.  Fortunately, Selch has worked out a system that makes it easier to make sure I receive correct dosages at the correct times.  He bought a large square pillbox that has little boxes for each day of the week and boxes for morning, lunch, afternoon and bedtime.

He or my aide have to pour my meds which also include pouring  liquid pain medicine  into small plastic bottles for each time I need to take a dose.  Even though we have an organized system, someone still has to remind me to take my meds.

The author of the article writes about  a pill that, once ingested, wirelessly transmits information about side effects and how well it’s working. 

Information is sent it back in a readable form to a cell phone or e-mail account.

I wonder if it also tracks any information about side effects that may occur?  The author writes it might be available as soon as the end of 2011 but I imagine that it will be first  for the kind of medication that gets the most attention and research funding such as cardiac meds.  Still, if it works, it may be able to benefit those of us who take medication for chronic pain and FTD within the next five years.

The other invention discussed in the article is the GlowCap that helps people remember to take their medication.

If I was still taking my meds from a bottle,  I don’t think I would see the glowing orange light.  Also what “melody” are they talking about?  Have you ever seen the movei, “Little Shop Around the Corner?”  Jimmy Stewart plays the head clerk.  The manager bought a large amount of cigar or cigarette boxes that play a melody when the person opens the box.  No one wants to buy them and Margaret Sullivan ends up getting a job as a clerk in the store because she convinces a woman to buy the box by telling her that it is a candy box.  When you open the box to take a piece of candy, the melody plays so it reminds you not to eat too much chocolate.

The next article is New Extended Hydromorphone approved.  Hydromorphone is also known is Dilaudid which is one of the medications I take in liquid form for breakthrough pain.

Dilaudid, in past research, is known to be a short acting medication so an extended release version I think is definitely a plus for chronic pain sufferers because Dilaudid can be very affective in helping pain.  It works by making the person feel like the pain is not as bad as it is.

As Karen says, Exaglo is being released under the REMS program which we in the chronic pain have been welcoming like the plague.

The company that developed Exaglo is CombinatoRx, Incorporated (CRXX) which develops novel drug candidates with a focus on the treatment of pain and inflammation.

An article in Bioworld says Exalgo’s REMS  includes “safe-use tools” for prescribers, patients and pharmacists to ensure the “right patients” get the drug and at the appropriate dosages, he said.

Neuman noted that Exalgo’s REMS is less restrictive than the one Covidien initially had recommended to the FDA, which currently is working on developing a classwide opioid REMS.

As I have explained in previous articles, REMS for other specific long acting narcotics as they stand now are very restrictive and will certainly cause many physicians to stop prescribing these narcotics and many pharmacies to stop dispensing these narcotics.

In Pain, they outline the REM requirements for Exalgo.  They sound much like the REM plans for other narcotics.  I am concerned that even if a doctor agrees to enroll in the Alliance program and patients agree to enroll in the program that pharmacists will not enroll in the program.

Let me give you a personal example.

We have recently moved and Sech went to the local CVS to get my pain meds. filled.  We had no problem in obtaining the medication at the pharmacy in the previous state  where we lived . All CVS stores order from the same distributors.  Selch spent three weeks getting the run around from our new local CVS pharmacist before he finally agreed to order my medication.  When Selch brought the meds home, he opened the sack up to discover that the pharmacist had given me the Mylan Fentanyl patches although Selch had specifically ordered the Sandoz patches.  Mylan do not work as well for me.  I am not putting them down, to each his/her own and I bless what ever works for you.

The pharmacists said that Sandoz patches were not available.  CVS stores nationwide order from same distributor.  This does not compute.  If this is the attitude of pharmacists now will they be willing to enroll in this Alliance Program?

Notice in the Pain Topics commentary that” FDA Briefing Material for the meeting  provides no data indicating exceptional abuse liability for hydromorphone and  a clinical study conducted in only 9 subjects that found hydromorphone was no different in abuse potential than hydrocodone or oxycodone.”

Also, “hydromorphone products accounted for less than 1% of nonmedical use of all pharmaceuticals, less than 3% of such cases involving opioid agents, and it was implicated in less than 1% of all drug-related suicide attempts.”

I agree that data does not call for such a restrictive program for this new drug.  Lack of data has never stopped the feds from involving themselves in the practice of medicine and trying to persuade physicians not to prescribe narcotics.  Remember the  DEA practice ofraiding of doctor’s offices a few years ago?

The author of Pain Topics asks, “Will there eventually be separate REMS programs for every opioid analgesic, each with its own registration requirements and prescribing procedures?”

Unfortunately, I say yes there will be if they have their way about things.  I don’t know what drives the DEA and the FDA to practices that are and will keep more and more chronic pain patients from receiving their pain medications.

They consider those of us who need narcotics to have any quality of life an acceptable sacrifice for their stated agenda which is  to keep people from abusing prescribed pain medication.  Even their own studies and data do not show that there is significant abuse in people who take prescribed pain medication.

Taking pain medication away from people who need in it in hopes that it will keep people from abusing drugs(who are taking their relative’s and friend’s pain meds)  is not realistic.  When you cut off one source, people who abuse narcotics will just find another source for their habit. Despite the “War on Drugs,” narcotics are plentiful.  So what have they accomplished?

Are these agencies that naive or is this a power agenda?

I have no idea, but we as chronic pain patients need to tell everyone we know what is going onand  we or our loved ones who understand what is going on need to write our congressmen.  I understand that we are all victims.  We are victims of our illness and victims of the medical and governmental system.  But, the only way I  see that we can make a difference is if we ban together and tell anyone who might be able to help us in our cause for the right to have adequate pain relief.

There are some rays of hope in this darkness of denial such as the MayDay Pain Project.  John Stossel recently did a program about the plight of chronic pain patients, War on Pain.  It was on the Fox Business Channel so most of us were unable to see it.   To watch the program go here.

One of the physicians in the practice where I go for pain management is involved in the MayDay project.

Let’s all pray that someday soon this world will WAKE UP.  Until then, remember we are all brothers and sisters united by our souls.  Whether you believe it or not the thoughts that we think may affect our reality so try to think positive thoughts.  I’ll be thinking positive thoughts for all of you and know that you are always in my prayers.

Promising treatment for CRPS/RSD


I just read a post on Chronic Pain Connection about Promising treatment for CRPS/RSD.

I have suspected for a long time that my CRPS and other illnesses might be linked to an immune disorder.  Another interesting thing for me is that I was treated with IVIG which is discussed in the study during my childhood because I had severe asthma and recurrent pneumonia.  Another layer of the onion is peeling.

Also see Researchers Discover new treatment for Complex Regional Pain Syndrome.

Anti-depressants may not work


I just read an article in Newsweek that says antidepressants may be no more effective than placebos. I have been on several antidepressants.  My relationship with antidepressants started when I was having moderate situational depression.  The doctor tried putting me on three or four antidepressants but none of them helped and I had the additional burden of side effects along with depression.

The only thing that helped my depression was getting out of the situation.  But, I have talked to many people who swear that antidepressants help them so I’ve always thought if they work for them and they suffer no side effects then I wish them the best of luck.

After I developed symptoms that could not be explained, physicians that I saw always pushed antidepressants.  They told me they weren’t saying that everything was in my head and that anti-depressants actually had been shown to help my symptoms.

I gave them another go round.  Again, nothing but side effects.  So, I started refusing antidepressants.

Then, my doctor diagnosed me with complex regional pain syndrome.  He has a very scientific way of thinking and explained to me in a scientific manner why antidepressants work.  So once again I hopped on the horse.  This time my companion was Cymbalta.  For the first two weeks, I actually felt better.  I happened to be on vacation in No Where’s Ville, Pennsylvania when I had a severe anxiety reaction due to Cymbalta.  My physician advised that I immediately stopped taking it.

After that, I started doing some research of my own regarding side effects of antidepressants, reading some studies and reading  lots of testimony from other patients that  made me realize that antidepressants can have some major side effects, even suicidal ideation.

Since then, the only thing I have let my doctor prescribe in the anti-depressant category is Trazadone in a very small dose to help me sleep at bedtime.

I have been mostly focused on side effects of anti-depressants in recent years and haven’t paid that much attention as to whether they worked or not.  Many people said that they really work for them and who am I to judge?

I do remember reading a study that said the body adjusts quickly to change in serotonin levels.  I also read recently that serotonin levels are not the hallmark for depression that everyone has been thinking they are.

The article in Newsweek says that studies show that anti-depressants are no better than placebos.  I believe we all have the ability for self healing if we are able to have faith.  Perhaps there is something to the placebo effect and no one should be concerned or ashamed if it truly is a placebo effect.

I am  concerned  that when everyone starts reading this article , they might discount the placebo affect and perhaps not feel as well.  I suggest reading the writings of Edgar Cayce if you are open minded.  His abilities are an example of how the mind does have the power to heal.

I grew up in church where they told us that healing only came through Jesus.  Now I do believe that healing does come from God but the power to heal has been given to all of us.

Remember the passage in the Bible that said if you have the faith of a mustard seed you could move mountains.  I think so.

I once knew a man who had the “gift” of healing.  He knew this gift came from God and everyone has the potential ability to “heal.”  It is one of God’s gifts to humanity.

I cannot say whether antidepressants work for others or not.  In the article someone asked why would the FDA would approve antidepressants if they didn’t work?  The FDA has a huge political agenda and they are not always looking out for the best interest of the people.  See FDA REMS and the fact that they have blocked two new pain medications that might help chronic pain patients.

Please if you are on an anti-depressant, talk to your doctor before you decide to stop taking your medication.  If you get off antidepressants suddenly it can cause serious withdrawal symptoms that could be life threatening.

Long Term use of Opioids in people with chronic pain


As you are aware if you have read about me and my posts, I have been taking narcotics for many years.  After much research and several discussions with my pain management specialist I am convinced that it is safe to use opioids in long term treatment for chronic pain.  An article in Medscape  says there is little risk of addiction from long term use in “select” chronic pain patients. Only (0.27%) of 2613 patients in the studies reviewed who received opioids for CNCP for at least 6 months reportedly developed an addiction to the medication.

The author also mentioned that many people withdrew from the study because lack of pain control and various side effects caused by the pain medication.  This is always a problem when treating chronic pain patients.  Multiple medications and combinations of medications and different dosages as well as route of administration may have to be considered before the patient starts receiving ongoing adequate relief.  Finding the right medication may be difficult in the beginning .  I know it was for me, but because I had exhausted all other avenues of treatment, I stuck with taking prescribed narcotics for pain management and my doctor and worked as a team to find the correct medications for me.

One concern for patients on long term opioid treatment is drug monitoring being done by many physicians. Relying on urine drug screening and testing for managing opioid-analgesic therapy in patients with chronic  pain causes unrecognized problems and challenges.

At least two small studies have found that physicians ordering urine drug screens to monitor patients on long-term opioid therapy typically are not proficient in interpreting the results according to the article about pitfalls of using urine screening tests.

While those who are for urine drug screening have a list of justifiable reasons for doing the tests,  testing results can be complicated and often misleading, leading to delays in patients receiving medications as well as problems in doctor/ patient relationships.  In a previous post I described my frustration about having to wait for a urine screening the entire afternoon in the doctor’s waiting room and I was only “discovered” to be still there when a nurse came to lock the front door at the end of the day.

The article explains many reasons why results of urine tests can be misinterpreted.  This may cause physicians to wrongly label a patient as a drug abuser and punish them by even closer monitoring or worse dismissal of the patient from the doctor’s care.  If the doctor receives positive test results all factors should be considered by reviewing the patient’s history and having a discussion with the patient before any drastic action is taken.  Remember a discharge of a patient by a pain management doctor is a black mark on the patient’s record which makes it difficult for the patient to find anyone else willing to treat their pain.

I read an article in Reuters that even legitimate usage of opioids can cause an overdose in patients. A study, published in the Annals of Internal Medicine was done by  researchers  who followed nearly 10,000 adults who had received at least three opioid prescriptions within 90 days to treat chronic pain.

Of these, 51 experienced at least one overdose, and six died as a result.  Reported studies such as  this one rarely discuss the specific circumstances of these overdoses, what other medications were taken and the co-morbid conditions that the patients might have.

The article states that “several million Americans now use opioids to relieve disabling chronic pain, and so even relatively small overdose rates could amount to thousands of overdoses every year.”  But in fact this does not happen.  Most patients who use opioids to relieve ongoing chronic pain are opioid tolerant which means their risk of overdosing on the narcotics is slim to none.

In the study, overdoses were particularly common among people who had a history of depression or substance abuse.  Remember the people who overdosed were a only a small number of people  in the study who took prescribed opioids.  A history of drug abuse or depression should be documented in the medical record and a physician should take this into an account when prescribing opioids.  This opens up another problem of lack of good historical information by the physician in the patient’s medical record.  I won’t further discuss that in this post as I have discussed the matter in other posts and probably will again in the future.

In “A Review Shows Opioids Relieve Chronic Pain With Little Addiction Risk,”  Meredith Noble, a senior research analyst at ECRI Institute, one of 14 evidence-based Practice Centers in the country under the U.S. Agency for Healthcare Research and Quality, and her colleagues reviewed the findings of 26 clinical studies comprising 4,893 participants of people who take prescribed narcotics on a long term basis.

They  wanted to look at studies  in which people who had chronic pain were treated  for six months or longer, given that chronic pain can go on for years. The review included studies of individuals on opioids for as long as 48 months.

In studies reporting abuse or addiction, only 7 out of 2613 patients reported that they took their medicine incorrectly or that they became addicted.

I agree with the results of the study, if patients are properly screened by history of problems of drug abuse or other complicating factors there is little risk of abuse or addiction.

In conclusion,  long term opioid treatment in chronic pain patients is safe with very little risk of overdose or abuse.

Writing a comment to FDA about proposed REMS


I received a response from a post I submitted on Chronic Pain Connection:

FDA REMS Proposal
Karen Lee Richards
Monday, January 18, 2010 at 09:55 PM

I would also encourage you and everyone concerned to write to the FDA.  They are taking comments from the public regarding these proposed REMS until Oct. 10, 2010.  Here’s a link to the FDA announcement.  Toward the bottom of the page of the FDA announcement is a link to their form if you’d like to submit it online and their address if you’d prefer to mail it.

Risk Evaluation and Mitigation Strategies for Certain Opioid Drugs

This will take you to another page where it asks you to choose which document you want to reply to.

Choose FDA and choose public announcements.  There will be several items to choose from.  Select  Risk Evaluation and Mitigation Stategies for Certain Opioid Drugs and then you will be taken to a page where you can place a comment.

Article on FDA REMS


I just read an article titled ” When Elephants Dance , Ants take a Pounding”.

“On December 4, 2009, the U.S. Food and Drug Administration (FDA) called upon pharmaceutical company representatives to report on their progress in developing a REMS (Risk Evaluation and Mitigation Strategy) for extended-release or long-acting opioid analgesic products containing oxycodone, morphine, methadone, and other agents. Concerned about what are perceived as high rates of misuse, abuse, addiction, and overdose with these powerful pain relievers, this is the first time the FDA has demanded a REMS program for an entire class of drugs.”

Many of the drug companies manufacturing the above mentioned narcotics have formed a  Industry Working Group (IWG) to try to deal with the problems of drug abuse  while still trying to assure that people such as chronic pain sufferers will still be able to get the medication they need to function in their every day lives.

The FDA gave these IWG’s little information to form a base to construct a plan even though the IWG members have spent many hours putting together a plan. You can read in the article about the proposed phased in plan

As the article points out, the problems are not with the people who take the prescribed drug but it is a community problem.  No matter what the FDA regulates there is still going to be abuse of “prescription” drugs.  The FDA thinks by keeping doctors from prescribing narcotics with abuse potential that it will stop people who abuse prescription drugs.

Some of these drugs may still be available on the street because of prescription narcotics prescribed overseas.

It is obvious to any thinking person, that people who abuse drugs if they do not have prescription narcotics available will obtain drugs from the “street.”

Some FDA officials have admitted that it is their goal to get doctors to stop prescribing these narcotics period.  They obviously do not care about the thousands of people like me who need narcotics to make their pain manageable so they can live day to day.

These officials have also admitted that it is their plan to put all of us who are prescribed these narcotics into a register and ration the amount of narcotics we receive.

Why, why, why do they want to do this? They have to know that we who responsiblity take narcotics under a doctor’s supervision are not drug abusers.  Or do they?  Have they bought in to the totemism of the “evil’ narcotic so far  that they believe even legitimate narcotic use should be stamped out?

Is it to prove that they have done “something” to address the war on drugs so their funding will be continued?

I have seen so much violation of constitutional individual rights in the past few years, I’m starting to not recognize this country as America, Land of the Free.

What can we do? We can do what our founding fathers afforded us the right to do.  We need to spread the word about what is going on as much as possible and join the consumer movement for health care reform.

We can write to all our congressmen and women and tell them our stories.  Also we can vote people out of office who will not stand up for our constitutional rights.

Even though I have a terminal illness, I for one will not roll over and give up.  Fortunately, there are physician practices and other foundations with strong political backing who are prepared to fight these proposed changes.

I’ve already read so many sad stories about people being undermedicated due to physician fears of governmental retribution.  I understand their fears and concerns, but to stop giving people medication that they need to survive before any action has been taken against their practice is inexcusable.

The DEA did raid doctor’s offices but the numbers were few and most cases were settled out of court.  It was enough to send many doctors rushing away like herd animals.  They should look at what actually going on now, not what they fear may happen.  While they can help people who are in horrible pain they should remember their oath and not turn people away who are in agonizing pain.

I believe physicians should stand by their patients and face what is coming together.  I still see humanity in some physician’s practices and I am old enough to remember when caring for the patient was the primary focus of the physician.

We need strong minded compassionate people in the medical field.  This is another reason why I believe that the best model for health care reform in a consumer based movement.  We have a right to good quality of care.

I let myself for a minute imagine the post apocalyptic world for chronic pain patients that would exist if the FDA is allowed to intact their plans.

Thousands of  people who suffer from chronic pain and chronic illnesses will be having to make life and death decisions.  Such actions would force those of us who chose to live and carry on with their responsibilities to seek our narcotics from an illegal market who would be more than willing to welcome us into its clutches.

Those without money to pay for these narcotics might be forced to do things that actual junkies do not because we wanted to get high but to survive.

Is that what the government wants, to send thousands more consumers into the illegal drug market?

Hopefully, it won’t come to this.  As I said, I do see promising signs that physicians and organizations are joining force to keep this legislation from being acted upon.

If you want to read more information on guidelines that the FDA is using to define chronic pain and treatment of chronic pain with narcotics see  The National Clearinghouse Guidelines, Managing chronic non-terminal pain including prescribing controlled substances.

I also want to remind readers that I do have another blog that I am starting.  It is called The Professional Patient.

Fibromyalgia, latest news


I don’t have Fibromyalgia  but I do have FM symptoms.  I just read the following articles and I thought they might be helpful to some of you:

See the following information from the American Pain Foundation about a webinar on  Fibro Treatment and Management.

Also see, Fibromyalgia:  Five things you need to know and Spotlight on Fibromyalgia.

Take care,


American Values and Health Care Reform


I just read an article about American Values and Health Care Reform and it inspired me to express my views about topics mentioned in this article.

The article is written by Thomas H. Murray, Ph.D.

He says “Most thoughtful Americans would have something meaningful to say about the values we should choose for the foundation of our system of health care. And by focusing on these fundamental considerations, perhaps we can deepen and broaden the discussion of values and public policy.”

First he discusses “liberty,” which I agree should be a value and a right we have regarding health care reform.  He mentions that this  includes” the freedom to choose a physician and the freedom for physicians to choose their practice setting and patients.”  I would go further to say that physicians should have the freedom to practice medicine in the best way possible to assure quality of care.  So many physicians are constrained now by insurance companies and governmental regulations that affect the way they practice medicine.

Examples of this are physicians who feel  like they have to practice defensive medicine because they are worried about liability.  This has lead to some group physicians practices looking at each patient as whether they might be a liability to their practice.  I experienced the outcome of this practice myself.  I found a young female physician who promised she would stick by me as long as it took to find out what was wrong with me.

I came to a follow-up appointment to find that she had already discharged me from her care.  She told me that she did not know what I was doing there because she had made it clear to me on the last visit that I should go to Johns Hopkins and she was discharging me from care.  I was very ill and I burst into tears and told her I knew that had not happened.  She confided in me that she had presented my case in a weekly case discussion, hoping to get feedback from other more experienced doctors.  She was told to “get rid of me,” and that I was too much of a liability to the practice.

Others such as doctors who treat people with chronic pain are wrapped in bureaucratic tape due to previous actions by the DEA and REM’s instituted by the FDA for narcotics that take away the freedom to prescribe medications for the maximum benefit of the patient.  Any chronic pain patient can tell you about the infamous “pain contract” with doctors and the hoops we are forced to jump through to obtain our medicine.

Dr. Murray discusses, ” Under our current system, a young entrepreneur with a brilliant idea for a new business, a creative vision that can create jobs and wealth, can’t necessarily follow that vision: if this person has a job at a large firm that provides good health insurance and has a child or a spouse with a chronic illness, the aspiring entrepreneur’s freedom to pursue his or her dream is severely limited by the “job lock” imposed by our current patchwork of health insurance.”

I’ve had personal experience regarding this situation when I was younger.  My former husband was self-employed.  I  had a few opportunities to get in on the ground floor of a start up coding consultant companies that began to flourish in the late 80’s, but I couldn’t even consider it because I had pre-existing health conditions that would have made it impossible for us to buy individual health insurance at a reasonable price.

Mycurrent  husband and I have constantly had to worry about insurance coverage since I have become ill. Due to the contract nature of his work at times, the actual company he has worked for sometimes hasn’t provided insurance. There was a stretch of time in which we were paying over $2000 dollars a month just for prescriptions.

Despite the fact that I have a terminal illness, I still haven’t been able to qualify for disability.  I’m about to talk to another attorney  about the possibility but due to SSI’s policy of giving strong consideration for disability regarding evidence of disability in my medical records for the first three years after I became unemployed, I have not been able to qualify because  I was first disabled due to a complex regional pain syndrome and we saw many physicians until 2003 when it was fianlly diagnosed.  This is an example of governmental involvement in health care benefits.

Dr. Murray also discusses values such as  justice and fairness, responsibility, medical progress, privacy, and physician integrity.    Should every American be required to participate in health insurance?  I have a problem when lower middle class and middle class people are going to be forced to buy health care insurance when they are already being taxed for Medicare and Medicaid.  Where is the extra money for premiums supposed to come from?  Many families have at least one spouse who is out of work.  The poverty line is around $11,000.  There is no significant special funded provided in this bill for middle class families.

Dr. Murray writes, “What are our obligations to ensure that the resources devoted to health care will be used wisely? Will a universal health care system provide for appropriate utilization of services while ensuring quality of care of all patients.?”  If you look at most universal health care plans adopted by other countries, quality of care has suffered dramatically.  Patients have to wait months to see specialists or to have surgery.

Two years ago, I had a large deep venous thrombosis and was in the hospital for a month.  I read posts by people in the U.K.  and other countries that were still having complications from their DVT after two years.  Some of them were still waiting to have surgery.

Dr. Murray discusses The Emergency Medical Treatment Act  which requires that emergency rooms provide treatment without regard to ability to pay. Have we done enough with our health care system to provide for human decency when as Dr. Murray states, ” According to the Institute of Medicine,20,000 people a year die for want of health insurance. Thus, one of the key challenges of health care reform is to make certain that appropriate care is available to every member of our community when needed.”

What is the definition of appropriate care?  With the current health care system many people do not receive appropriate care.  The problem with Universal Health Care is that “appropriate care” only means that everyone has access to care.  This country already has a shortage of doctors and with the initiation of Universal Health Care many doctors will abandon ship.  This will leave physician assistants and nurse practitioners to provide for much of primary health care given to patients.  They will be overworked  and underpaid.  There will also be a shortage of people who want to work in a system where there are long lines of sick patients to take care of and low wages for their efforts.

Also, specialists will be more scarce and to try to save money, the healthcare system will prevent patients from seeing specialists as much as possible.

If you don’t believe me, read stories of chronically ill patients who have tried to receive good health care through HMO’s.  If you are a healthy person, HMO’s work wonderfully.  You only need to see a primary care physician and there is little out of cost expense for preventative medicine.  Chronically ill patients and patients who are seriously ill cost the system more money.

I use to review records for quality of care in HMO’s and I saw many cases of primary care physicians or usually a physician assistant or nurse practitioner putting off appointments for patients to get in to see a specialist.  Also, abnormal test results were often overlooked and not discovered until two or three visits later.  You will see with any program of universal health care that health care must be rationed so expense procedures and tests will often be delayed.

Dr Murray states, “But if everyone is to receive care when it is needed, fairness and responsibility also require that everyone participate in financing it. In its 1993 report, “Genetic Information and Health Insurance,”4 a task force of the Human Genome Project’s Ethical, Legal, and Social Issues Working Group proposed the concept of universal participation. Insurers who recoiled at the idea of universal access accepted universal participation as a legitimate goal. To them, universal access meant that healthy people could skate along without paying any premiums — until they got sick, at which point insurers would have a legal obligation to enroll them and pay their medical bills.”

Everyone can see the obvious problems that arise with that system.  Dr. Murray continues, ” Only people who expect to file insurance claims would voluntarily buy policies. A policy of universal participation eliminates adverse selection. And “universal participation” is a more accurate and inclusive term than “universal mandate,” which addresses only the individual’s obligation, not the national commitment to assuring that care will be available when and where it is needed.”

Len Nichols, director of the Health Policy Program at the New America Foundation, recently invoked the Old Testament in discussing stewardship. ” When food is more than sufficient to feed all, allowing some people to starve is indecent and represents a failure to live up to universal moral duties.Dr. Murray writes “To Nichols, the principle concerning the availability of food in Leviticus should be applied to health care today: just as the gleaners of Leviticus should not starve, so people in need of basic, effective health care should not be allowed to suffer and die. Stewardship requires us to be mindful of the basic needs of others and of the power and responsibility we have to use the resources in our control to meet those needs.”

He says “Stewardship therefore requires that we pay scrupulous attention to quality, efficiency, and cost-effectiveness — or value, to use the market’s sense of the term. The evidence that we do not get good value for our money — that our health outcomes fall far short of those in many other countries, that regional variations in expenses do not track variations in quality, that our hospitals too often fail to ensure consistent adherence to practices known to enhance quality (such as hand washing) — is overwhelming. Everyone entrusted with the leadership of our health care institutions and with the allocation of our health care dollars has an obligation to be a thoughtful steward of those scarce resources.”

Will the government be able to initiate such programs to ensure quality of care? As I have stated before, there was  a program the government initiated through the Health Care Financing Administration that contracted a company that I worked for to do “peer review” screening of Medicare, Medicaid patients  by reviewing their medical records for proper utilization of services, proper coding of diagnoses to insure accurate billing and most importantly screening for quality of care issues.

I pre-screened these records for physicians and then the physician would review the records with potential problems.  In many ways the program fell short. Within the 10 year period that records were reviewed, fewer and fewer records were selected due to budget constraints and pressure from lobbyists.  I believe the fact that the program  existed did improve over all utilization of services and quality of care in hospitals.  Unfortunately, the government abandoned the program.

Also, very few physicians or hospitals were actual sanctioned at the state level even though some major patterns of poor quality of care were found.  Also, results of these studies as well as any quality review that hospitals and physicians do within their hospitals and practices are “protected” from public viewing.

The rationale behind this practice is that physicians or hospitals would unfairly be targeted due to unavoidable mistakes and that if results were given to the public, doctors and allied health care personnel would be less likely to participate in quality review.

First of all, I think participation in quality review should be mandatory.  The patient is being provided a service.  Therefore they are the true customer and deserve to receive information regarding performance standards.  Too many doctors and hospitals mistakenly think that the insurance company is their customer because that is who pays them.

Physicians say that practicing medicine is different from any other service such as providing tax information, car repair, etc. but the fact that they do provide a service to their customer, the patient, should allow for patients to be given information about quality of services so they know who may be able to best serve them.

I don’t think physicians should be penalized for every mistake they make but as baby boomers are getting older, I believe they would demand the same kind of service that they have come to expect in other areas.

I think that it will take a long time to  enact universal health care.  The government is trying to plan it so the entire universal health care program is not actually enacted until after the election of 2012.  But, I think people are already being fed up  by governmenal interferance and will not welcome even by preliminary actions because the country is in such a difficult mess as it is.

Dr. Murray states, “The bill likely to emerge from Congress will probably do a better job of moving us toward universal participation than of ensuring proper stewardship of our health care resources.”    Perhaps, repitition of services can be eliminated.  That contributes in a major way to cost of health care.  “Proper stewradship of health care resources?  I seriously doubt that will happen with a federally governmentally run health care system for reasons I have explained above.  Also, consider all the bureaucracy that comes with governemental intervention, constitutional issues and the program being able to work with state laws regarding health care.

It will be a very interesting endevor.

About Dying


Today has not been a good day.  I’ve been having problems with pain and  I am lingering in depression.  I was telling Selch that my medication helps treat many of my symptoms but it can’t take away my disease.  My illness is like a dark invader who is always with me.  I feel him behind me.  Sometimes his dark hands rest on my shoulders.

There are times when I feel more freedom my illness  such as when I am praying.  My prayers are like a shield that guards against unwelcome thoughts.  In the best of times, I am with my Ishta (the desired form, the aspect of God that was given to me by my spiritual teacher.)  Listen to  Loreena McKennitt’s  Dark Night of the Soul.  It is a good description of the feelings I sometimes have.  The poem was originally written by St. John of The Cross, On a Dark Night.

Sometimes in the midst of a wonderful day-dream, I gradually see a small dark thread.  As I get closer, it becomes a long dark ribbon.  I know that it is my connection to death. I’ve considered touching it or perhaps even grasping it with a gentle tuggle.  Perhaps, I will do that someday.

Even though I have a terminal illness, no one can tell me how long I have to live.  It isn’t like some forms of cancer in which the doctor can make a determination based on survival rates.  This dark spider lays her “eggs” (sometime tau bodies) in various places within the frontal and temporal lobe.  No one can predict which neurons will die.

When I received a letter from my doctor’s office and Selch read those words Pick’s disease (FTD) , it altered my sense of physical self for the rest of the time I have left on Earth.

My life  has been filled with good times and bad.  There have been times when I was up to my neck in the mud of Earth immersed in life.  Experiences such as motherhood, marriage and career have drawn me into the same world as everyone else but at strange unexpected times I  have this sense of being on the outside looking in.

We all have to die and to find out that I will be living on the Earth a shorter amount of time than many of those I love dearly does make me feel sad.  Yet, now I have a sense that I may be going back to the place that I belong.

So, I do not fear death itself.  I call the dark presence an invader because I did not invite him to come and he draws physical life force from me pressing on my back forcing me to painfully exhale life energy.

We are not only our physical bodies.  I think what I fear more than death is the continuing experience of a faulty interface that will gradually  keep me from communicating that those that I love.  I’ve asked Selch if I will be able to find a way to tell him I am still here.  He says he will always know that I am here until I have departed from this life.

I have lost many things over 13 years of having a chronic pain syndrome and then five years of having symtpoms from my degenerative brain disorder.  I do not have  what people call their personal freedoms.  I’m not able to drive, I can’t do activities of daily living.  I have apathy about doing the most simple things  so I have to be constantly reminded even to drink water.  Yet, I am able to still read articles and stories on the computer and type on the computer.

As I mentioned before, the disease  has its own special design of destruction for everyone that it touches.  So, it is hard for me to explain to people  how disabled I actually am because I am still able to write.

In the last month, a few people who I know who have FTD have fallen several steps down the stairs of functionality.  It is hard to find anyone with FTD who can communicate.  I feel like there are a few of us are clinging to a lifeboat and when one of us slips down, it is a major loss.

Selch reminds me that this does not mean that the same thing  will happen to me but for me each time one of the members that falls off the raft,  is  a ray of hope has disappeared.

Before I started this post ,I read an article,  Hard Choices for a Comfortable Death: Sedation. The author of the article writes about his discussion about intraveneous “terminal sedation” with different doctors who are taking care of patients who are dying  in various hospitals.  The process of  IV “Terminal sedation”  involves bringing people with a terminal illness into the hospital, some who have been receiving home hospice care, because they are have extreme discomfort that can’t be managed by home hospice.

The doctor has a lot to consider in these situations including how the family feels and  previous wishes of patients to die at home with their loved ones that were made before they started having intolerable pain.

I’m not sure about how I feel about IV terminal sedation.  Many doctors argue that it is the disease itself  at the end that kills the patient, not the pain medication ,that they become tolerant off  in a short period of time.  For instance, how would that work for people like me who are already considered “opioid tolerant” meaning that I have been treated with narcotics by a physician over a long period of time so it requires a higher dosage to treat my pain.  Then I wondered if once people who are opioid tolerant are undergoing  IV sedation, are they still feeling pain at some level?

Many times during terminal IV sedation, the patient is not given any fluid or nourishment.  The physician explains that it helps the patient to rest more peacefully because the body isn’t stressed having to process liquid and food.  But, are they actually being “starved to death?”  These are questions I can’t answer.

I have been under IV sedation many times for many procedures.  Several times IV sedation was considered necessary for the doctor to give injections that contained pain relieving medication into my spinal nerves.  I received 8 course of IV sedation when I was in the hospital two years ago  for a month due to an enormous  deep vein thrombosis.  Those  attempts at IV sedation were not very successful in treating the pain caused by the procedure because the doctor wanted to give me less IV sedation because I was on a high dosage of pain medication.  I wish sometimes that chronic pain patient’s could carry a pocket pain management doctor around with them when they needed to undergo any treatment or procedure.

It would be nice to see the cheery young face of my nice Polish doctor explaining in a very scientific yet simple to understand manner to the no nothing about pain doctor why I actually require more IV sedation.

I have noticed from my personal experience and after reading multiple  articles about children and people who are chronically ill that have to undergo multiple procedures under general or IV sedation. They  are more prone to nightmares which involve removal of body parts, horrible creatures performing procedures, etc.  I have several dreams that would rate closely whith some of the most horrific movies ever made.  Perhaps that is why I don’t bother to watch the movies, I can see something much more grueosme and life like for no money in my dreams.   Perhaps the pain that we do not supposedly feel during procedures, sedation, altered states such as comas  is stored is displayed in other mediums  such as our dreams.

To sum it up, I am not totally sure that IV terminal sedation is a total painless, uncomfortable way to spend your last days or weeks on Earth.

Obviously, it has benefits for the family because they don’t have to see their loved ones suffering but on the other hand they are unable to talk to them before they die.

That brings one other thing to mind.  When we appear to be not there are we really still there?  It is something I’ve discussed before and I’m sure I will discuss again.

Bye for now

Giving your symptoms names


Any one with chronic pain or chronic illnesses knows that to get by it is best to maintain some sense of humor, no matter if anyone else “gets” it, you know what you mean, that is all that matters.

I saw this cute post today:

Have you named your illness symptoms? That may sound like an odd question, but there are some very good reasons for giving your symptoms names. One of them is this: when you give one of your symptoms a name, such as Gertrude or Elmer, you separate yourself from it. When you do that, you are much less likely to identify with it, which makes it possible to step back and see ways for dealing with it and managing its effects on your life that you otherwise couldn’t.

Here’s an example of what I mean: if you have a severe migraine, you may say to a friend or to yourself that you’ve been having awful migraine pain. But when you do this, you can easily feel like a victim. If instead, you tell your friend or yourself that “Sylvester” has been acting up and making himself felt, you don’t make it personal, so you are much less likely to feel like a victim.

A related benefit of naming your symptoms is that it allows you to communicate with them. You can write to them and tell them how they’ve affected your life, and you can tell them how you have felt, and continue to feel, with them. When you do that, you will probably find that you feel a sense of relief and even freedom.

You can also talk to and even have a conversation with “Sherlock” or “Agnes” (or whatever you’ve named your symptoms). When you do, besides telling them how you feel about them, you can ask them if there is anything they want you to know. You can ask them what are the things you do and the situations that make them worse and you can ask them what changes you can make to lessen their severity and minimize their impact on your life.

End of Post.

If people with multiple personality disorders can do it, we should be able to be as equally creative or more.   Illness may narrow your abilities to do certain things but it gives you an opportunity (when you are not trapped in a whirlwind of pain and unwanted thoughts) of time to reflect and open your mind to possibilities like when you were a child looking at the stars or the clouds.

I read recently that physicians are finding some people who have FTD while they lose their ability to process numbers etc. are becoming more creative and are more able to express  themselves artistically.  There are many ways to be artistic: painting, drawing, writing, collaging, making jewelry, etc.  I participate in something I call creative television watching.

I love to watch Turner Classic Movies.  Sometimes when I am watching a movie for the second, third, fourth time, I imagine what it would be like if they re-arranged the furniture, if the guy hadn’t gotten on the train, or if he had gotten on the wrong train or maybe the train didn’t show up at all.  After a good movie often I think about the movie and the characters, imagining what might have happened  after the end of the story, an entirely different story perhaps.

I think about possible future inventions and one gadget I would really like would be something that connects to your brain patterns and to my favorite movie so that I am able to take the characters and create additional scenes and plotlines.

You might think I have too much time, but my time like everyone else’s time is limited.  I just know that my curtain call for this life character is sooner than I use to believe.  I wonder when you  leave off stage does someone direct you to the right or the left or do you just stumble out into the audience?

Back to the naming illnesses.  I think I’ll give the name game a try.  My father use to call me Myrtlerayleenajane.  There’s a few names to start.

Visit with FTD Research Specialist


Monday, at 8 a.m. sharp I arrived at the office of a physician who does research in FTD.  Selchietracker as always my faithful companion accompanied me.  The physician’s office is affiliated with a local medical school.  I had been to other clinics in this medical school for various reasons and not been satisfied with the physician’s diagnosis and/or treatment.

I was willing to give this physician a chance.  He had been recommended by a person at National Conference for FTD which Selchietracker attended a few months ago.

After we were escorted to his office and we met the doctor, the first thing I realized was that I had met him before.  I had worked in the local medical community for several years dealing with many physicians so I assume that I have met him somehow in that capacity.

Unfortunately, because we are in transition and about to move again, Selchietracker could not locate the disc which contained my MRI film at the last-minute when we were walking out the door.  He did bring documentation from a doctor who diagnosed me at Johns Hopkins as well as the results of the MRI and other tests as well as her conclusion and findings.

He asked us what we wanted from him, confirmation of diagnosis? Did we seek  treatment options-he quickly answered there was no treatment, or  he asked, did we need further information?

Selch explained that we would like to identify what strain of FTD I might have and find out further information about research trials, etc.

First the doctor bragged about  their extensive collection of autopsy slides for FTD patients.  Apparently they have the largest number of autopsy slides for FTD in the country.  Well that was okay but not very helpful to me since I am still the walking wounded.

Next, he put me through a battery of neuropsychiatric evaluations.  Any of you who have had to do these tests or watch your loved one with FTD complete these tests know that it is no fun to not remember simple words.  I especially fear the dreaded count back in 7’s from 100.  I can never get past the first few, major mental block.  Or the pictures you are required to draw of the connecting shapes and a three dimensional square.  My pathetic attempt looked like the work of a three-year old and to add insult to injury, he told me he was labeling my work with my name.  Come on, enough of kindergarten.

Then he did the usual neuro exam.  I know the drill well.  I could probably perform the exam blindfolded without the assistance of the doctor.  Of course, nothing wrong there except his breath.  I do wish doctors would check their breath before approaching a patient.  There is nothing like being poked and prodded and having to hold your nose.

After the exam, we discussed my history of symptoms.  He asked a few appropriate questions.  Then came the true test. What about my behavior?  Selch proudly proclaimed that despite my other symptoms commonly associated with FTD including apathy towards activities of daily living , that I was still a compassionate person who understood the affects of my illness.

Despite the fact that the physician had not reviewed my MRI and did have ample evidence from a doctor from Johns Hopkins who specializes in FTD that I did have FTD,  he proclaimed I did not have FTD because my behavior was not appropriate.

Because of my problems and reactions to nightmares, he conceded that I did probably have Lewy bodies.

For a brief description about Lewy bodies see:

For more information about Lewy bodies and FTD see:

Selch explained to the doctor that there is a variant of FTD that has Lewy bodies.

The doctor stubbornly remarked that he had seen thousands of FTD patients (FTD is supposed to be still considered rare and it isn’t as if he is attached to a major FTD clinic, so did he mean thousands of live people or thousands of autopsy slides that he mentioned previously) and every single one of them male and female had a history of acting out and not understanding anything about their illness.

I told him that I could produce six people diagnosed with FTD who are able to attend a weekly chat and discuss their disease process.

He gave no response.

So, he wished us luck and suggested we send  him a copy of my MRI.  I think we will be heading to greener pastures.  We are moving closer to a well-known clinic for FTD patients so I think we will continue down the yellow brick road to meet Oz.

Because, because of the wonderful things a good physician does, like PET scans, etc.

I realize the best way to get a functional MRI,more complex scans  or trial treatment is to be enrolled in a study.  Am I willing to be a guinea pig?  I’ve been poked, prodded, scanned, panned, scoped, doped and have never lost hope since I was a small child.

I still firmly believe that there are many others like me that are out there but they haven’t been diagnosed.  Most neurologists don’t know much about FTD.  If depression and anxiety are the first features, then the patient is likely to do a lot of couch time.  I went to many doctors for many years before a doctor discovered that I had a complex regional pain syndrome, with a domino effect other diagnoses fell into line .

I was diagnosed with FTD because of Selch’s practice of smoothly prodding doctors to order tests needed to evaluate my condition.  Also, we have learned when presented with an abnormal lab result or other abnormal finding that cannot quickly be explained away, we will seek multiple consultations until we are satisfied with a diagnosis or have reached a temporary point where we have to stop until other doors open up in the future.

I love when we go to Manhattan to see one of my doctors.  While we are on the streets and Selch is rolling my wheelchair down the uneven sidewalks ,I always see someone with a poster that proclaims one thing or another.  I also think of those comedians who say, “Here’s Your Sign” and “You might be a redneck if…”.  I imagine rolling around holding a poster that says IF YOU HAVE THE FOLLOWING SYMPTOMS YOU MIGHT HAVE FTD SO GET HELP NOW WHILE YOU STILL HAVE A LIFE TO LIVE.

Instead I remain in my “sick” recliner, preaching to the choir.  Maybe, someday, somewhere, someone will find me.

Opioid Treatment and the Chronic Pain Patient


Today I read the following post

Long-Term Opioid Therapy – What Are the Effects?

Most people who need to take opioids on a long-term basis for chronic non-cancer pain are understandably concerned about what kind of effect it will have on them.  Many have mistakenly believed that opioids destroy both the body and the brain – and possibly even shorten lives.  Although pain management experts have long contended that opioid therapy is not dangerous when properly administered, until now there has been no actual research on long-term opioid use (10 years or more) to back them up.

Enter Forest Tennant, MD, who undertook a first-of-its-kind research study evaluating chronic pain patients who had been receiving opioid therapy for 10 to 35 years.  The results of his study should be extremely encouraging for patients who need long-term opioid therapy as well as their doctors, some of whom may have been hesitant about it.  Tennant concluded that the significant improvements in quality of life and physical functioning from opioid therapy are so positive they outweigh any negative complications, which can be easily managed.

Research Methods

Tennant’s study looked at 16 female and 8 male chronic pain patients between 30 and 79 years of age.  Their chronic pain conditions were:

Neuropathies and Arthropathies – 29.2%
Spinal Degeneration – 25%
Abdominal Adhesions or nNeuropathies – 20.8%
Fibromyalgia – 12.5%
Headache – 8.3%
Hip Necrosis –4.2%

The subjects had all been receiving continuous opioid therapy for 10 to 35 years.  All were taking a long-acting form of morphine, oxycodone, fentanyl or methadone and one or more short-acting opioids for breakthrough pain or pain flares.  They all also took additional medications such as muscle relaxants, sleep aids, hormone replacements and dietary supplements.

Study Results

Almost all of the patients (22 of 24) said their pain had permanently decreased over time.  And the vast majority (20 of 24) felt their opioids still provided the same relief as when they started treatment.  All of the patients  reported one or more functions or activities they can do now that they couldn’t do prior to beginning opioid therapy (i.e., get out of bed everyday, take walks, shop or visit friends).

Several new medical conditions developed in the group over the 10+ year period, such as hormone abnormalities, weight gain, tooth decay, tachycardia, hypertension, osteoporosis, hyperlipidemia, and diabetes.  There was no clear way to determine whether these conditions were caused by the pain, the opioid therapy, the natural aging process, or were just inherent in the patients; however, all of the conditions could easily be medically managed.

All but one of the males in the study experienced lowered serum testosterone, a known complication of opioid therapy, which can be controlled by hormone replacement therapy.

Notably, there were no neurologic complications including dementia, hyperalgesia, tremor or seizures.  Nor were there any liver, kidney, or gastrointestinal complications, except for minor constipation.

Rather than causing serious health problems, Tennant suggests that because of the decrease in pain, opioids may actually allow or even promote neurologic healing.  He goes on to suppose that opioid therapy may prevent a number of medical complications of pain and also may prevent early death due to the over-stimulation of the pituitary-adrenal-axis or possibly electrical stimulation produced by damaged nerves.  Tennant acknowledges that this is a small study and states that much additional study is needed to determine cause and effect of medical conditions in opioid-maintained patients.

Finally, Tennant concludes, “Even though the number of patients evaluated here is relatively small, the great improvement in their quality of life and physical functioning is so positive and the complications of the therapy so easily managed that long-term opioid therapy should continue to be provided and evaluated.”  End of article

I wish this information was more readily available to patients who are considering pursuing opiate treatment for their pain as well as to provide correct information about narcotics to the general public.  Physicians are using many different types of medications to treat chronic pain disorders and some of them have shown promise in treating chronic pain.  What many people don’t realize is that many of these other medications have more side effects and medication interactions than narcotics.

Opiates are still a main stay of treatment for chronic pain patients and there are good reasons for this.  Although opiates have become a totum of evil due to a  massive media push claiming that opiates  by their very existence have caused a rise in prescription drug abuse.  Opiates of themselves are not evil and it is more of a reflection of the culture, change in family dynamics etc. that are the cause for a “rise” in drug abuse involving prescription narcotics.  This phenoma is not because of sudden lax rules in prescribing narcotics by physicians or not the fact that narcotic prescriptions are on the rise.

When I think about when I was growing up in the 70’s, doctors were more lax about prescribing narcotics then and narcotics were available.  There is a rise of availability of narcotics strictly due to their illegal status because the illegal drug business is profitable.  Perhaps because of the constant portrayal of street drugs as “evil” more people have taken to “abusing” prescription pain medication because it seems more socially acceptable and the product received in deemed to be safer.  Narcotics are not harmful to patients who take them as prescribed under a doctor’s supervision. There has been no study that proves that long-term narcotic use is harmful to the patient’s internal organs.  Studies actually show more damage to patient organs from continuation of chronic pain.  New studies involving chronic pain show that it is different from acute pain and the result of continuing chronic pain can have a devastating effect on the mental and physical well-being of a person.

The truth is that thousands of people suffer from chronic pain and bad media press, increased governmental regulation and shift of  the War on Drugs to prescription medication  has made it more difficult for patients who suffer from chronic pain to receive the treatment they need to deal with their illness.

Insulin is not with held from diabetics and so in the same way opiates should not be with held from patients who suffer from chronic pain.

Because narcotics have received such a bad rap, it is hard for people who do not have chronic pain or are an advocate for a loved one or person that has chronic pain to understand that receiving narcotics under a doctor’s supervision does not equal drug abuse.  Any person who has chronic pain and takes narcotics will eventually become physically dependent on the medication.  It may surprise people to know that many other drugs cause dependency such as anti depressants.  That is why doctors are careful to wean their patients off of anti depressants.  If you do not believe that withdrawal occurs for these patients, then talk to a few people who have been on a certain antidepressant for a long time and went off of the medication cold turkey.

Drug dependency does not equal addiction.  Addiction requires a psychological craving for the drug and most people who take opioids as prescribed do not develop a psychological dependence.  Many doctors have confused a patient’s request for a higher level of pain medication as drug seeking behavior when it is actually a sign that the patient’s pain is not under control.

The War On Drugs for all its good intentions has not reduced the amount of illegal drug traffic.  It has created many jobs for people in law enforcement, courts and the prison system.  But, the government still has the same problem that they had when they tried to prohibit alcohol.  People want to be able to use these substances as they do alcohol and nothing the government can do will decrease that desire. I am not saying that making all drug use legal will solve all problems regarding drug abuse.  I do not know if that would be possible in our society.  By criminalizing drug use  criminal industries will naturally look to drugs as a way to obtain profit just as they did when there was a prohibition on alcohol.

For the War on Drugs to work, people would have to change their minds about the way they feel about their personal right to use what substances they desire in their daily life.  The media wants everyone to believe that if the government did not “control” drug use that there would be a massive apocalyptic  like wave of drugged out zombies who would destroy everything near and dear to the law-abiding citizen’s heart.  The problem with this is that there just isn’t any proof that this would be so.

I’ve seen recent so called documentaries about the plight of opium addicted women and children flooding the plains of the U.S. as pioneers progressed towards unclaimed country in the 19th and early 20th century.  Yes people did become physically addicted to opium and cocaine.  Also, snake oil salesmen sold products to people that could harm or even kill them.  It was the original intent of the FDA to protect people from falling prey to these snake oil salesmen. The truth is when almost anyone who likes to do genealogy  searches for information about ancestors such as Great Uncle Grover or Great Grandmother Pearl, they usually find brief accounts of  people struggling to survive on the farm or ranch mixed with amusing anecdotes.  Rarely, does anyone find personal accounts recalling tales of long-suffering drug addiction and family interventions among the common folks.

Those heart breaking accounts of families being torn apart by drug abuse and painful intervention are recent occurrences are certainly real ,but they  have been mined by the media to feed the habit of the general population for reality based television.

I’m not saying that substance abuse isn’t a problem.  I am saying that things shouldn’t have gotten  to the point that the government has become so involved the Drug War that regulations and red tape are surrounding chronic pain patients and their doctors, causing doctors to practice defensive medicine and keep many chronic pain patients from having a decent quality of life.

How has it happened that there is much more government interference in the way that physicians practice medicine in regard to prescribing narcotics?  The DEA, not having much success in winning the War on Drugs, in my opinion  has switched to softer targets.  Because when it comes down to it in any law enforcement situation be it convictions by the district attorney or tickets written by the police, numbers count.  High numbers of convictions or in the case of the DEA, documentation that they are making a difference in decreasing the business of “illegal drug use”  means success and more funding.

The following is a policy statement issued by the DEA regarding the wonderful ways they are changing regulations to protect against drug abuse of prescription pain medications and how their new regulations actually make it easier for the doctor to prescribe schedule II narcotics to the patient.  Also, they mention according to their statistics they really haven’t reprimanded very many doctors and so their impact of pursuing doctor’s in their medical practices is small.  It is explained at the following site

Many physicians and advisors in the health care industry are concerned these acts by the DEA may only be window dressing in light of  tougher regulations  proposed by the FDA.

The real story is that new FDA regulations include the possibility of requiring doctors and allied health personnel to take special training classes for each scheduled narcotic  they provide that is on the government’s list.  See regarding the possible future and scope of this training.   News about further requirements from the FDA on this matter are supposed to be published today, December 4, 2009.  I have also read in various blogs that the DEA has a future proposal in which they would take the list of patients who receive schedule II narcotics and ration the amount of medication that they may receive.  The very thought horrifies me.

Now I will talk about doctors doing “business as usual” with the DEA.  The DEA since the 90’s has taken the bold step of raiding doctor’s offices where they suspect illegal drug trafficking. There were some actual “pill mills” but those were disposed of quickly and easily. It is true that the DEA has not raided “many” physician’s offices but they took pains to raid doctor’s offices in a way to make an example to other physicians.  They first selected small and rural physician practices in which physicians prescribed “a more than average” amount of pain medications.  I am not just talking about time released scheduled narcotics but narcotics such as Lortab and Percocet as well.

A family practice doctor in a rural community may look like he or she is prescribing “more” narcotics but actually he or she is seeing the same patients more often over a life time so if the doctor had several elderly patients with chronic pain conditions, it would appear he or she was prescribing more narcotics than the average physician.

The tactics of the DEA actually would appear silly in their draconian nature if the results of their actions were not so sad.  They have targeted certain physician practices as described above.  They are already provided with lists of patients who have narcotic prescriptions filled, as well as what pharmacy the prescriptions were filled,  by what physician and when the prescriptions were filled.  With this information, they were able to do routine background checks on patients as well as find patterns of any patient who had narcotics filled at different pharmacies, by different doctors within a certain period of time.

Any patients of the doctor’s practice that the feds intended to review who  had a history of drug related violations or had patterns indicating “doctor shopping” for narcotics were contacted by the feds.  The feds threatened prosecution of various drug offenses and offered “deals” to these patients if they would “rat” on their physicians.  Ratting met anything from simple statements that the doctors provided them a prescription for narcotics to confessions that the doctor had actually known about their drug history and “drug shopping” activities an chose to ignore it when giving them a narcotic prescription.

A doctor can be very prudent in his practice and still not know about a patient’s drug history, recreational drug abuse or “doctor shopping” involving other doctors because they only know what patients are willing to tell them.  Most doctors if they suspect a history of drug abuse or “doctor shopping” will take appropriate measures in dealing with these type of patient.  There is no reason to think that any prudent businessman wouldn’t do so and especially doctors who have taken an oath to practice medicine.   Yes, the primary focus of many doctors has leaned towards  financial advancement.  With Medicare fraud, regulations by insurance companies and new Joint Commission requirements, doctors are not going to risk their practice by prescribing narcotics to people who they know would abuse them.

After the DEA obtained information about certain patients and “confessions”, they would approce the doctors with the evidence and ask them if they would prefer to settle out of court or face a public jury trial.

Most doctor’s settled out of court and were given reprimands.  Those brave courageous doctors who chose to fight the good fight and bring their case to court found themselves confronted with over eager district attorneys who were willing to prosecute to the fullest extent of the law and beyond.  Most of these doctors lost their medical practices and their licenses.  Many chronic pain patients who lived in small communities were stranded without a way to obtain more pain medication.  Other doctors in the area were certainly not going to run the risk of their fellow fallen physician.

Word soon spread to other physicians across the country.  This caused a wide spread panic among physicians.  Some general practitioners and even pain specialists decided to get out of the business of prescribing opioids.  Other pain management doctors consulted their lawyers and started enforcing strict guidelines for their patients to follow if the patient wanted to continue opioid treatment.  The first things to arrive were physician patient pain contracts.  Patients had to sign lengthy documents in which they promised to be willing to undergo random drug testing, not to engage in any recreational drug use, to inform the doctor if they received any pain medications by any other physicians.  Any means all pain medicines down to a lortab given to you by your dentist after a dental procedure.

These rules were up to interpretations by the doctor.  Some doctors did as a paper exercise but some doctors used the pain contract to engage on some kind of power trip.  I don’t know if they were seduced by power or extremely paranoid but I have read multiple cases of patients being discharged because they did not inform the physician before they took a pain pill prescribed to them by their dentists and when they mentioned it off handedly to the nurse during the next appointment, they were discharged from the doctor’s care.  Once, I waited four hours in the doctor’s waiting room for a urine drug screen test.  The receptionist kept telling me to be a good patient and sit down.  Finally, I was discovered by a nurse as they were locking up for the day.

If a patient is discharged by a pain management physician for any reason, it is definitely a black mark on their record and it makes it more difficult for a patient to find another pain management physicians because the pm doctors do not want to take on the liability of someone who has been discharged from care.

New regulations to be enforced by the DEA  and FDA provide more red tape to gag the physician from providing proper opiate treatment to their chronic pain patients.  For information regarding requirements regarding classes that physicians must take see the following

Flupirtine: New Help for Fibromyalgia, FTD?


As I mentioned in an earlier post, I bought a small quantity of flupirtine tablets from Germany. I wanted to see if it would help some of my pain that my usual opiates (fentanyl, methadone, hydromorphone) do not touch.  One type of intractable pain resembles Fibromyalgia (FM), an all-over achy pain, particularly deep in the joints, that comes and goes.  When it comes, it stays for hours or sometimes days.  It never just starts and then goes away.  I don’t know if it’s actually FM, or just another facet of my RSD.

Flupirtine maleate is a centrally acting, non-opioid analgesic that has been available in Europe for years.  It was used for lower back pain and post-surgical pain, and then for pain, generally.

Here’s the really important thing.  It also has CNS neuroprotective properties.   This is leading to its possible use for treating CNS neurodegenerative syndromes such as Alzheimer’s Disease, Multiple Sclerosis, Parkinson’s, Huntington’s and Creutzfeldt-Jakob disease, including cognition in CJD.  It might be useful for FTD treatment, too.  Flupirtine is currently undergoing FDA trials for treating Fibromyalgia.  It is also known in Europe as Katadolon and Trancolong.  It is not available in the USA, as it is not FDA approved.

Typical dosage for adults is 100mg three or four times a day, half that for children.  I’m not sure about long-term use or side-effects, yet.  Most of the information is hidden behind registration walls, and I haven’t had time to do all the registrations.

Here is what happened with my first dose:

  • 3:00 pm — fibromyalgia-like pain starts
  • 3:25 pm — took 100mg flupirtine by mouth
  • 4:45 pm — I realize the fibromyalgia-like pain is gone
  • 4:55 pm — bad headache in upper right forehead
  • 5:30 pm — took 1500mg acetaminophen and a short nap, and the headache’s gone

I think the headache is a side-effect of the flupirtine.  The location is exactly where I get a headache and feel electric sensations when I have flare-ups of FTD symptoms.  I doubt that’s a coincidence.  And headaches were reported as side-effects in a good article on flupirtine’s half-life for young, elderly, and renally-impaired patients.


I got the flupirtine from, an internet pharmacy in Germany.  You have to fill out a brief medical history for a doctor to review to get the prescription.  The process was very fast, it only took a few minutes from submitting the history to get the prescription, and they shipped it the next day.  We got it in about a week.  The flupirtine came in 400mg tablets, so Selchietracker got a pill cutter, cut the tablets in half and then cut those halves in half to get the 100mg individual doses.  He thought it was kind of neat that the box of “Trancolong” also had the name in braille.  Geek.

Visit with the Manhattan Pain Specialist


Blogging has been on hold while I went to see my pain management specialist in Manhattan.  He’s part of the team at Dr. Portenoy‘s Department of Pain Management and Palliative Care at Beth Israel Medical Center across from Union Square.

I am going to try out a couple of new medicines.  One is well known, baclofen.  It’s a GABA-B agonist, that will, hopefully, do some good via effects on endocrine levels.  We’ll see. I haven’t started it yet, as Selchietracker wants to get a handle on how exactly to manage it.  It has a lot of side effects, and many of those signs and symptoms of adverse reactions, I have already as part of my illnesses.  As one doctor said, I am a complex lady.

The other is flupirtine,  a non-opioid analgesic that works on different receptors in the brain.  It should also have some neuroprotective effect.  That may help with the effects of FTD killing off my brain neurons.  It’s not normally available in this country, although it has been available for many years in Europe.   It’s now going through the FDA’s obstacle course as a treatment for Fibromyalgia.  Selchietracker got a prescription from Germany, and bought it from an internet pharmacy,

After we got back from the trip, I got an alert from the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).  Dr. Portenoy is helping to lead a major push to improve the medical community’s education and understanding of chronic pain, so that we pain suffers will be able to get better treatment.  The launch of this effort is a report, A Call to Revolutionize Chronic Pain Care in America, by a private NYC group, the Mayday Fund.  According to the report, chronic pain is a greater burden on the health care system “than that of diabetes, heart disease and cancer combined.”

The trip was great.  We love Manhattan.  We even found a newly reopened gluten-free Greek restaurant, Gus’s, on Bleeker St just a block east of 6th Ave.  The food is good and the seats are more comfortable than our old standby for GF, Rissotteria, which is a few blocks up Bleeker toward 7th.