Archive for the ‘pain management specialist’ Category

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.

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.

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.

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.