Archive for the ‘Treatment’ Category

For Those Who Are Not Heard, Part 2


Doctors often do not listen to patients who have FTD, and will tell them that they do not have FTD.  They know so little about the wide variety of symptoms associated with FTD disorders, and how these symptoms and underlying diseases overlap.  This same phenomenon extends to the rest of the medical community:  those of us with illnesses, and even our caregivers, are not heard.

There is still much unknown about FTD and related disorders.  It is only this year that the leading researchers are starting to agree on which signs to look at and the basic measurements that they need to take, to enable them to start sharing and comparing the knowledge and data that they have each been collecting separately.

Further down the research food chain, doctors grab the more common stereotypes, and apply those typical symptoms as inflexible requirements for a diagnosis.  Many people who have FTD do not show “typical symptoms”, and so these doctors refuse to order MRI’s and PET scans, or the neuropsychological testing, that could confirm these presenile neurodegenative diseases in the early stages.  I was told by one self-proclaimed expert that if you don’t have emotional blunting, you can’t have FTD, despite physical evidence on an MRI of unilateral frontotemporal atrophy.

There is no cure for FTD and related disorders but neuroprotective medications do help to slow the damage from these diseases.  There are certain medications that people with these disorders that should not be on, certain medications that make their symptoms worse.

I understand that doctors are taught to sound confident and authoritative in talking to patients.  The idea is that the patient will be comforted to feel that the doctor knows his stuff.  The problem is that a doctor’s confidence in his knowledge needs to be based on fact, not fancy.  Missing a diagnosis of FTD adds years of uncertainty and unnecessary misery to patients and their families, over and above the depredations of the diseases.  And there are few things as disheartening to me as the aggressive ignorance of a doctor confidently and authoritatively asserting falsehoods.

Would it really be so hard just to listen?  To preserve some modicum of scientific humility?

Or maybe this humility is the means by which we can distinguish between the truly knowledgeable researchers and the lesser lights.

My words about this disease that is taking my life — robbing me of my grandchildren, and the world of the art that I want to create — come straight from my heart.  But there are so few who have the heart to listen.

A long time ago in December, I went to a bar, to listen to the words of a poet who was blind and hard of hearing.  He had another poet recite his poems.  All of his friends had promised to be there to listen to him.  This was a major event in his life.  He had never before revealed his poetry, what was in his heart, to anyone.

So the lights were dimmed and a blue light enveloped an attractive woman who sat next to the poet.  Her voice was like velvet and his simple poems about love flowed out of her mouth.   I was drawn into the poetry, my heart beating with the rhythm of his verse.

Then I felt a cold breeze periodically slip past my shoulders.  I looked around the room.  People were quietly getting up from their seats, stealing out like thieves into the night, slowing robbing the room of its humanity.  Then I remembered that another friend of ours, a poet who read his poetry every week at this time was reading his work  just down the street.  This section of town was known for the bars where poets read and people listened to live music.

After fifteen minutes, there were only five people there, the audience was the manager of the bar, a new female friend of the poet’s and me.  The female poet kept reading his poems and occasionally, she would address “the crowd.”  My poet friend continued to grin from ear to ear.  I wondered if he had known that anyone had left.  Then I thought perhaps he was better off not knowing.

I knew that if I walked down the street, most of the missing audience would be there.  I imagined myself chiding them for their transgression.  But, I decided, why waste my time in a verbal attack on fools, when a man was sharing his soul with us here.

About ten minutes before the session ended, his “friends” began to file back in as quietly as they had left.  Then she of the velvet voice said, “Before I read a final poem, I want to thank all of Bill’s friends for coming here tonight to listen to Bill’s poetry.  She rattled off their names one by one and they each squirmed a little in their seats or made some facial gesture, to acknowledged in a social way that they had been caught.

Then the poem was over and they all gathered around him to tell him how his poetry had touched their hearts.  I parted quickly not wanting to hear their gushing lies.

Alas for us who suffer these deadly diseases, there is no narrator in this life to name the names of those who will not hear.

LIVING WITH FTD: People spreading the word about FTD.


In this post, I want to talk about people and groups who are spreading the word about FTD.  FTD is still a relatively unknown disease and it is people on the front lines and in the trenches who are doing good work to spread the word about FTD.  Many people believe FTD patients have little insight into their disease.  I am here to tell you there are a growing number of people with FTD who are well aware of their disease and going to great efforts to spread the word about FTD.

For those of you who don’t know, there is a wonderful chat group at The FTD Support Forum. We meet on Tuesdays and Fridays at 2:00 p.m. central.  My user name on the support forum is Mermaid.  Any of you who have FTD and are able to communicate or have a loved one who can help you communicate, I encourage you to join the FTD Forum.  There is a lot of support and good information at the forum.  Our chat group has many friendly folks who are waiting to welcome you with “open arms.”

If you want more information about the chat group, join the FTD Forum and send a private message to Mermaid.

Also, many people who have FTD  are doing wonderful things to spread the word about FTD.  John who has FTD   is very involved with the Alzheimer’s Organization.  He has been working with his local chapter and has recently been to Washington to speak to Congress about pre- senile dementia and FTD.

Tracy Mobley  has written an article as a guest blogger this month on about what it is like to live with FTD.

Susan Grant has finished her film Planning for Hope.  I really encourage everyone to go to her website, FTD-The Other Dementia.  She needs volunteers in all areas to help her with film distribution.

In addition, there are several people with FTD who have blogs and websites.   If anyone has an FTD/Neurodengerative Brain Diseases blog or website and I haven’t put you on my blogroll, please let me know.

In the next six months, I am planning to have a place on the virtual world, Second Life, for people with FTD, other Neurodegenerative diseases, chronic pain and those who are terminally ill.  More news on that later.

There is a Webinar on Thursday, April 29th.  It is Free Webinar Cognitive and Behavioral Issues in PSP. CBD and FTD with Dr. Brad Boeve. It is from 8 to 10 pm EDT and you can register at this link.  Some of the members of our chat group are patients of Dr. Boeve’s and I’m sure he has some valuable information to share.

Anyone who is doing projects to let people know what it is like to live with FTD or focusing on the lives of FTD patients please contact me.

I will keep you posted with updates about what is going on in the FTD world.

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.

New Marker for Cell Death might someday be used in neurogenerative disease


I just read an article called Monitoring Cell Death Could Help Cancer Treatment.  While now they are studying these monitors for cells that have been attacked by tumors there is a potential that it may be able to be used in neurology to target cells that have been damaged by stroke and neurogenerative diseases.

An Israeli company called Aposense has developed an imaging marker that, when used with PET scans, indicates the presence of dying cells.

“Apoptosis, the process by which cells commit suicide, is a vital mechanism in the body that weeds out damaged, infected, or otherwise unhealthy cells. No matter what the disease or the tissue, cells undergoing apoptosis have very distinct characteristics–the electrical profile of their membrane changes, the cells become more acidic, and lipids in the membrane lose their rigid order and become jumbled. Aposense believes it has found a way to target a trace marker to this combination of traits, which would let doctors image cell death.”

They  have designed small molecules with very high specificity for the apoptotic cell.  A small molecule recognizes the set of alterations in the apoptotic membrane of a cell and it binds to the cell, goes through the cell membrane, and accumulates.

The reason that this tracer might be able to be used to target cells damaged by storke and neurogenerative diseases is because the characteristics of apoptotic cells are universal.

Perhaps someday it may be used to detect dying neurons in someone who is in the very early stages of FTD.

Patient Medical Centered Home Demo


I just read a post titled Patient Medical Centered Home Demo.  This is about redesigning health care groups  with improvements that included same-day appointment scheduling, direct access to some specialists, primary care redesign to enhance care efficiency, variable physician compensation, and an electronic medical record with a patient Web portal to enable patient e-mail, online medication refills, and record review.

It appears that there was some  increased patient and physician satisfaction with this model.

It sounds promising and many services in the model move towards patient centered health care.

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,


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.

Should Physicians tell Patients about Medical Mistakes?


Today I read an article in Medscape regarding the issue of whether or not a physician should tell their patients if they make a mistake in the medical care of the patient.  You can read the article here.

I have suffered greatly because of physicians’ medical errors.

The first time, was in 1991. I had a D&C for a miscarriage.  After the procedure I continued to have bleeding and began to develop severe abdominal pain.  I informed my physician and the office said to make a follow up appointment.  I had the D&C where I lived and it was far away from my work place, so a secretary at my office got me in to see her doctor at the medical school clinic.  Over a course of three weeks, I saw five physicians.  None of them could figure out what was wrong with me. One of the doctors, did a pregnancy test.  She asked me if my stools were dark and I told her they were.  My pregnancy test was still highly positive.  She brought up the possibility of a tubal pregnancy but after consulting with the head of surgery she told me that wasn’t a possibility.

My last clinic appointment was with the head of surgery.  He examined me and reviewed my case and concluded that I was a post-partum neurotic.  He gave me a Demerol shot and advised me to go home.  Fortunately, a urologist I had seen was there and he said he thought something was wrong with me.  He said he was going to admit me to the hospital and he sent me down to GYN for a sonogram.

After they performed the sono, the doctor pulled out a huge, long needle.  I asked what they were going to do.  I was informed that they saw pus on my sono so they were going to extract it via my vaginal canal.

After they began the procedure, the physician turned towards the intern and told him to page the surgeon stat for emergency surgery.  He told me I had massive bleeding in my abdominal cavity.

They rushed me into emergency surgery.  I remember the doctors running down the halls pushing my gurney to the OR, all in slow motion.  A nurse told me I might not survive.  Fortunately, a top specialist in fallopian tube repair was on call.  I had a ruptured tubal pregnancy, not post-partum neurosis.  The specialist successfully repaired the tube.

After surgery, the urologist came in to apologize to me.  He told me that I had a tubal pregnancy.  All the doctors assumed because I had a D&C that I couldn’t have a tubal pregnancy.  The surgeon who repaired my tube had been a professor of the doctor who did my D&C.  He called the doctor and asked him the results of the D&C pathology report.  It showed no fetal cells.  Physicians are routinely supposed to read pathology reports after surgery, but the physician said it had been misfiled.  The doctor who repaired my fallopian tube told my original physician to call me immediately and apologize to me, which he did.

Fortunately, everything turned out okay.  I had a baby boy two years later.  Obviously this happened because of slightly unusual circumstances, tubal pregnancy, but there was gross physician error involved.

Did I feel better that the physician apologized.  Yes I did.  I still was angry that none of the other physicians, especially the head of surgery, did not come to see me after surgery and apologize.  Did I consider suing?  It crossed my mind but since I was in the medical profession I knew that there was no case because there was no loss of organs.

The second incident occurred in 1997.  I was having right sided abdominal pain.  I consulted a GYN and she told she would do surgery to remove abdominal adhesions.  She did a laprascopy but found massive adhesions. Without informing me or my husband or obtaining a surgical consult, she converted the surgery to a laparotomy. When she was trying to remove adhesions, she accidentally injured three nerves in my abdominal area.

After surgery I had trouble walking and severe abdominal pain.  She told me both symptoms would pass and sent me home.  For two weeks I difficulty walking and severe pain.  I saw her for a follow up visit.  She told me the surgery went well and that she thought I had a psychosomatic disorder that caused my pain.  She explained to me stress can do things to the body and put me on antidepressants.

I tried to see her again but she refused to see me.

I suffered with this pain for years and over the years it got much worse.  No one could figure out what was wrong with me.  I ended up seeing a pain management doctor for treatment of my symptoms.

In 2003, we moved and I saw a pain specialist who was a neurologist. He did some testing and told me I had reflex sympathetic dystrophy which is a chronic pain syndrome. He said after reviewing my records, my disorder had likely developed after a complication in the abdominal adhesion surgery.  I obtained my medical records. We discovered what she had done. Did I file a lawsuit? It was too late to pursue any legal recourse.  Was I upset?  Tremendously so.  It has affected my whole life.  I am tortured every day by severe pain.

Do I think that physicians should tell patients when they made an error in their treatment?  Of course. When you as a customer pay for services you expect to be informed if any errors occurred in the performance of your service.  What do you do when your accountant makes an error in your tax return, your mechanic doesn’t fix your car as he or see promised, or an appliance you were sold doesn’t work?  You complain to the appropriate people and expect an apology and an assurance that the problem with be fixed if possible.  If the service provider is unable to fix the problem, you expect some compensation.

So why do so many physicians not tell their patient about medical mistakes?  I think because as medical students, physicians come to understand that telling patients about your mistakes just isn’t the thing that doctors should do.  They should be seen by their patients as a person with superior knowledge in the medical field so the patient will be able to trust them.   Also, their medical malpractice insurance is ridiculously high and they are afraid that they will be taken to the cleaners in court.

First of all, almost all medical malpractice claims are settled out of court.  I have done quality peer review of patient cases with physicians.  Most people who find out that a medical mistake in their care end up not suing.  They may threaten to sue but often change their mind when they find out how difficult the process to recover any damages may be.

The attitude of the physician as the great healer, keeper of medical knowledge, and the condescending “protective” relationship of the doctor to the patient should have been thrown out years ago.  Today’s medical consumer is much more likely to want to know what is going on with their care and they also have more tools to research their illness via the Internet.  Doctors say that medical information on the Internet is incomplete and full of errors.  That is true, but a large part of the population of people are educated, especially the baby boomer generation.  They are use to obtaining and receiving information where and when they want it.  And half of the doctors look up medical information on Wikipedia!

So, as the baby boomers mature into their elder years, I believe the consumer movement in health care will explode with thousands of people seeking information about their medical histories and care.  It will probably change the practice of medicine.

I think the role of the doctor today should be that of patient advocate.  The doctor should be a team member in providing good medical care for the patient. He or she should encourage their patients to become informed and welcome their efforts to find out information regarding their condition.  If the doctor is able to communicate with the patient about their knowledge and continues to encourage good communication between the patient and the doctor, it is reasonable to assume that misunderstandings that lead to threats of lawsuits will decrease tremendously.

Many physicians say that they will not tell their patient about any mistakes they may have made in their patients medical care.  Consumer trends and new governmental reform may force them to reveal more information. They should get used to providing information to their patients.

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.