Sunday, August 31, 2008

ILAP 2008 - The Pledge to Care

I don't really know where to start with writing about the International Leaders Against Pain program that I attended this month. So I'm just going to jump in there and start with the "Leader's Pledge to Care".

We made this pledge on the last night of the program. It is a blueprint, if you will, of what I need to do, the directions I need to take, in leading the push for awareness and treatment of Fibromyalgia.

Leader's Pledge to Care

We pledge to partner with the NFA to:

* BE THE VOICE of millions of people suffering with fibromyalgia, and to actively advocate on their behalf for an improved quality of life.

* PROVIDE PERSONAL SUPPORT to offer hope and real solutions to the life-altering challenges faced by people with fibromyalgia, and their caregivers.

* CREATE AN ONGOING MEDIA PRESENCE that raises awareness, communicates facts, and changes perceptions about fibromyalgia.

* PROMOTE PROGRAMS that will result in continuing medical education to help health care providers diagnose and treat fibromyalgia patients.

* REPRESENT AND HELP EMPOWER INDIVIDUALS with fibromyalgia in order to improve the quality of health care and access to treatment options, no matter the patients' circumstances.

There are also three other parts of the NFA's Pledge to Care:

Family and Friends’ Pledge to Care

Healthcare Providers’ Pledge to Care

NFA’s Pledge to Care. The entire staff of the NFA stood in front of us that night and read this. I was quite moved.

How about taking your part of the pledge now?

Those who fill out the pledge form will have their first initial, last name, state and country listed on the NFA's online “We Care” page, along with name(s) of the individual(s) they are honoring.

Click below:

To complete the Pledge to Care form.

To view the “We Care” page.

Saturday, August 23, 2008

Tuesday, August 19, 2008

Guest Post: " Paul Whitcomb - Friend or Foe"

For a list of other blog posts on The ICIE about Paul Whitcomb, D.C., go here.

The following is a great article by the author of the Fibro Friends website, who is also a former patient of Paul Whitcomb's. Got 'cher first hand experience right here:

Anyone who has met Paul Whitcomb will attest to his charismatic personality. A big bear of a guy with a warm and friendly manner he comes across as very sincere. Fibromyalgia patients travel from all over the country and the world to be treated by Whitcomb at his chiropractic clinic in South Lake Tahoe, California attracted by the compelling stories of the success of his method described in his traveling seminar, the website stopfibro.com and in his book “Fibromyalgia; Finally Solving the Mystery”. At the clinic Dr. Whitcomb makes each of his patients feel special and cared for. He is an attentive listener, exudes compassion and has a good understanding of the symptoms and suffering of those with fibromyalgia. This coupled with the dramatic improvements in health experienced by the majority of the patients at Whitcomb’s clinic and the close friendships formed with other patients make the experience at Tahoe a very positive one. As reflected in the personal testimonies on Dr. Whitcomb’s website most patients leave Tahoe elated by the progress they have made in their health and glowing with praise for their savior Paul Whitcomb. But this is only part one of the story.

Part two is what happens to patients after they leave Tahoe and return home. The truth is that for the majority of patients who are treated by the “Whitcomb method” the cure or relief of symptoms is temporary. Gradually most or all the symptoms of fibromyalgia return. The time frame of relapse and degree varies from patient to patient, the average being six weeks. Initially patients suspect that their relapse was brought on by overdoing it physically or by stress in their personal lives. Not realizing that this experience is common to most of Whitcomb patients they tend to blame themselves or think they are somehow unique. In my case I blamed it on my sympathetic nervous system that never really settled down at Tahoe despite improvement in other fibromyalgia symptoms.

When I was a patient in Tahoe I had no idea that the effects of the treatment were not lasting for most patients however in retrospect I had a few clues. I communicated via email with Carol Hammett a friend I made at the beginning of my stay who completed her treatment a couple weeks thereafter. Her symptoms began to return after a month. She told me she wished she could have stayed in Tahoe longer because that might have helped her. This encouraged me to stay an extra month in Tahoe but to no avail, my symptoms returned as well. A year later Carol is as sick as when she first went to Tahoe. In an email she wrote: “If anyone asked me if his treatment helped I would say ‘yes, it helped relieve me of $20,000’. I think it is unfair to post only positive testimonials on his website”. Another clue was Bebe Garza, a patient at the clinic during my stay who was at there for her third time. Bebe’s symptoms returned after her first two extended visits (she had personal reasons she attributed this to) but she was so determined to stay well that during her last visit she stayed for four months only to relapse again.

One by one I heard about the disappointing relapse of many wonderful friends I made in Tahoe. Some of the “miracle” cases were most distressing. People who after years of suffering claimed they were 100% better and had gotten off multiple medications only to have their fibromyalgia come crashing back when they returned home. Their glowing testimonies remained on Dr. Whitcomb’s website for weeks until they asked to have them removed. (I know of other former Whitcomb patients who did not stay well but still have their testimony on the website). Here is a pretty typical report written by Sharon Niedzinski the wife of a patient that describes what happened to her husband Ron after returning home.

“Ron came home from Tahoe last March feeling pretty wonderful. Within a few weeks he forgot and threw one of our 78 lb granddaughters up in the air (in the pool) and spent several bad days in bed. I called Dr. W. and arranged a phone call with him and a chiropractor here. The doctor here put Ron's neck back in place and he seemed good for a few days. Then it went out again. He's had to go back to this doctor as it continued to go out for no reason that we know of. He saw this chiropractor weekly then twice a month all of 2007 and now into 2008. The doctor here insists he's doing exactly what Dr. W. told him to do but we seriously wonder as Ron is exactly as he was before Tahoe! This is not good! Ron started taking Lyrica a month ago. It has dramatically eliminated his pain but for two weeks all he wanted to do was sleep. That stopped but now he is slightly spacey and forgetful. He's trying to decide if he should continue taking it. So where is Ron at? Back to where he was before being treated by Dr. W.”

Patients are devastated emotionally by the return of their fibro symptoms. As former Whitcomb patient Mary-Lynne Shank wrote “There is nothing worse than having a taste of what it feels to be healthy, only to have all of our former symptoms return with a vengeance”. To add to this disappointment patients are also often in debt financially. The average patient stay at the Fibromyalgia Relief Center is ten weeks, which costs $8750 for treatment plus lodging, meals and airfare to Tahoe. Many patients put the costs on a credit card and are told not to worry because after they complete treatment they will be well enough to go back to work. I think about some of the friends that I made at Tahoe who are now as sick as they have ever been and unable to work. One in particular whose spouse is working two jobs just to make ends meet and pay off the credit card debt. Another whose spouse is going back to work after being retired and one who had to move out of her home. Those who are single are struggling even more to make ends meet. I also know several patients whose marriages suffered considerable strains as a result of being separated for several months and then having to readjust to life at home with their spouse, the disappointment of their fibromyalgia symptoms returning and their money wasted. These stories are heart breakers on every level.

In the fall of 2007 Dr. Whitcomb claimed that he had a new technique that he was teaching his patients to use and that it was helping them stay well after they returned home. Several people from my patient group including myself went back to Tahoe to learn this technique and to see if some further adjustments might be helpful. It turns out that the technique is a basic hold that involves pressing on the back of the head at top of the spine - a procedure that is known and practiced by every cranial sacral practitioner and rolfer to stimulate the parasympathetic nervous system. It was not helpful for me or the other patients I know who tried it. Around this time several of us began to confront Dr. Whitcomb about the high level of relapse in patients we knew. As a result of this Dr. Whitcomb hired Susan Uribe, a former patient to do follow up research. She contacted around 75 patients and told me that 95% of them reported they had relapsed. The few who reported they were doing well were not physically active and did not work. When she reported her findings to Whitcomb he simply said “they did not call me when their symptoms returned”, which was a blatant lie because many of these patients had. After two weeks of disturbing phone calls with ex-patients and irate spouses Susan became disillusioned and quit her job. She posted a comment in my blog www.fibrofriends.typepad.com that concludes: “It is my opinion that Whitcomb is a master at charming very sick people out of their funds and does not look back.”

Dr. Whitcomb recruits individual patients using patient care representatives who make a commission on every person they get to come to the clinic. His latest method of recruitment is through radio stations where he airs advertisements and through Christian television where he was a guest on the Laura Schlinger show called “God Answers Prayers”.

Due to the high level of relapse in Whitcomb patients it is clear that the Whitcomb Method does not address the underlying cause of fibromyalgia for most people nor does it facilitate any permanent changes in the spinal structure. Dr. Whitcomb’s theory that fibromyalgia is caused by upper spinal cervical stenosis is in my opinion flawed. Whitcomb does not rely on x-rays because by his own admission he cannot see the displacement of the atlas or first vertebrae that supposedly causes a pulling on the meninges. There are many chiropractors who address misalignment of the atlas most notably members of the large professional association called National Upper Cervical Chiropractic Association or NUCCA. This organization has over 40 years of research and development in the treatments of C-1 or atlas subluxations. There is also an alternative method of realigning the atlas called Atlas Profilax, which was developed in Switzerland and in most cases requires only one treatment. Addressing a misaligned atlas by these other methods is helpful for a variety of conditions however it is not specific to fibromyalgia.

There is no questions that fibromyalgia patients suffer from an over activated sympathetic nervous system. I suspect that Whitcomb is able to achieve a relief of symptoms by interrupting or dampening the nervous system at the top of the spine with frequent adjustments (2-3 per day over a period of weeks). One of the side effects of this method is that patients usually develop strained ligaments and muscles in the neck and develop neck pain. Since Whitcomb advises his patients not to have anyone touch or massage the neck so the neck pain often persists for months.

Recently I corresponded with Sara Sharpsteen a very intelligent Structural Integrator using the Rolfing method whom I met in Tahoe. She reached a similar conclusion about the Whitcomb method, which she summarizes well in the following quote.

“The fact is, fibromyalgia is a diagnosis of a condition. It is a diagnosis of a set of symptoms, and medically speaking there is no clear cause for those symptoms. In my experience, every person with fibro has a different, changing, set of symptoms. Any time that a doctor cannot find a cause for chronic, systemic pain, they diagnose fibro. I have seen so many different variations on this that I can't imagine that there is one single cause for this disease. I do believe that it is a disease of the fascia and of set off by a severe shock to the system. That shock might be different for every patient. And there might be some underlying medical predisposition to the disease. I don't know. Somehow the neuromuscular system gets all confused and the fascia is constantly getting the message to scar and harden. This is why Dr. Whitcomb's method "works". If you are interrupting the nervous system three times a day you are going to have some kind of effect. It's like you are short circuiting one step in the process. But as soon as you stop interrupting that message, things go wrong again. As I understand it, many chiropractors have seen this result and it has been discussed at length in their professional community. This was NOT discovered by Dr. Whitcomb. He's just the guy who touts it as the "cure", when everybody else admits that it is not. I have real faith that the answer will come through better understanding of the myofascial system, which is poorly understood at this point.”

In his book “Fibromyalgia, Finally Solving the Mystery Whitcomb says:

“Follow-up care is not needed in most cases. We do have two different modalities we have you use at home. These devises have proved satisfactory and almost never is any other follow up by a practitioner needed. In the event you get home and find that you start having any return in symptoms that cannot be resolved with your home treatment contact a local chiropractor immediately and have him or her call our office. We will make sure your doctor has adequate information to follow up on your care and keep your symptoms to a minimum. The most difficult part of your treatment will be taken care of while you are here and any follow-up should be easy for your local doctor to perform.”

Whitcomb makes similar statements in his lectures on his website. And at his clinic he told patients that they should expect to experience continued improvement in their health after they left his care. As reported by the 25 Whitcomb patients I personally have kept in touch with this is simply not true.

I believe that Dr. Paul Whitcomb is performing a grave disservice to claim that he has solved the mystery of fibromyalgia and is successfully treating fibromyalgia. It is impossible to substantiate the long term efficacy of his method unless follow up research is done. Whitcomb cannot or does not want to do this because it would force him to reevaluate his claims. He is reaping large financial benefits from his clinic and also thrives on the emotional attachment of his current patients. There is no doubt that Whitcomb is able to provide temporary relief of fibromyalgia symptoms however it is unlikely that many people would pursue treatment if they knew about the high level of relapse. In this way Whitcomb’s actions are unethical and deceptive. Yes, the jury is out my friends and a verdict has been reached. Dr. Paul Whitcomb is not a friend for fibromyalgia patients. He is a Foe.

Wednesday, August 13, 2008

NFA's International Leaders Against Pain: Priceless!!!

Just a note to tell you it's all been worth it many times over. Today is the last day of ILAP 2008. As soon as I get home I'll tell you more about it and I've got bunches of pictures of the fantastic conference facility where it was held. So, to be continued...

Sunday, August 10, 2008

Blogging from the Atlanta International Airport

Well, I'm sitting here by the gate waiting for my 4 p.m flight to Dulles International in Washington, D.C. where I will then be whisked away by van (hopefully - if I miss the van and have to take a taxi it will cost @ $120) to the Airlie Center for the NFA's International Leaders Against Pain media and advocacy training.

My connecting flight to Atlanta was HORRIBLE. There was a sour smell to the air coming from overhead, I'm pretty sure the man next to me was passing gas, it was hot and it was cramped. The only good thing was that it was only a 38 minute flight.

I don't really have anything to say - I just wanted to put a post up from the airport because I CAN - except that my suitcase weighted 10.5 pounds over the 50 pound limit so I had to pay $80 because there's nothing in there that I can't do without!!! Three days of business casual attire plus a couple of comfortable outfits and the absolute necessities of my life for a four day and four night stay and one sixty pound bag is doing really good for me. I did forget to pack my thing that I have to wear in my mouth at night because of the TMJD/grinding, and I'm going to be paying for that for awhile with tooth pain.

You are only allowed to check one bag for free with Delta now. If I had brought two smaller bags it would only have cost me $50 to check the second one. I'll have to let you know when this is all over if it was worth not having to hassle with two bags, for $60 total. I've been dreaming about this whole sequence of events since the beginning of last week, and not in a good way. I've dragged these bags all over the world in my subconscious, and I've been through the whole event and only gave one business card away even though I printed up a hundred. Anyway, this scholarship deal is getting pretty expensive already... monetarily as well as physically/emotionally. Hope it's worth it.

My neck and shoulder are giving me a lot of grief already and I forgot to bring my wonderful squishy neck pillow that I always use at home when sitting and lying down so I bought one here at the airport. They're everywhere. They work.

I wish I could send a picture with my cell phone like Dr. Happy has been doing, but I haven't figured that out yet. I'm going to take another look at it while I'm sitting here people-watching.


Saturday, August 9, 2008

First details about National Invisible Chronic Illness Awareness Week now available

National Invisible Chronic Illness Awareness Week is held annually in September, and is a worldwide effort to bring together people who live with invisible chronic illness, and those who love them. This year it's September 8-14, 2008.

Planning of four telephone seminars Sept 8-12 (M-F) where you can call in to listen and talk to the presenter are currently in the process.

Last year I was a presenter. My topic was "Blogging About Your Illness." It was a great experience, and there was a whole lot of worthwhile information available at the other presentations. I'll keep you posted on updates for this year's events as they develop.

Love the new logo, Lisa!

Monday, August 4, 2008

FINALLY - Sleep Study Results!

Here it is, the much awaited Sleep Study. Sorry to take SOOOO long, Aviva. Some technical difficulties way too boring to go into, but mostly my own procrastination.

First, in case anyone wants or needs a refresher on the first two parts of this post -

Part One: Sleep Study Last Night

Part Two: Chronic Monday: Sleep (Not!) - Some practical help in overcoming sleep disorders

And without further ado...

Click on the picture for the jumbo view.

First, for the sake of comparison, this is a nice chart of how the sleep cycle is supposed to go:

In Stage 1 sleep the brain transitions from alpha waves (waking) to theta waves (drowsy) and conscious awareness lowers. During Stage 2 or light sleep, muscular tone/activity lowers and conscious awareness disappears. It normally accounts for 45% to 55% of total sleep and is followed by delta waves, stage 3 slow-wave sleep and stage 4 deepest slow wave sleep.

Go here for another good description of the stages.

My sleep study showed that I never EVER went into delta/stage 3 & 4 sleep. This is not good. I'd go so far as to say this is very bad. And I had what is a good night's sleep, for me.

They didn't see fit to comment on the lack of delta sleep, but did suggest looking into family history of narcolepsy because I went into REM sleep after only 45 minutes. No history of narcolepsy in my family, but I seem to have a lot of the symptoms of narcolepsy, except for one major one: excessive daytime sleepiness. I do get some sleep, just not at the right time of day (night). And as long as I'm not working and can sleep whenever I'm able to, I don't feel too tired when I'm up. Seems like that might be a deal breaker on the whole narcolepsy theory to me, but what do I know?

When I talked to the P.A. at the rheumy's office about these test results, he said we should do the suggested Multi Sleep Latency Test (MSLT). Who am I to argue? I let them go ahead and schedule the test for me. Then I went home and did my internet research on the MSLT, then I called the Sleep Lab. I talked with the tech about my sleep problems and habits and she agreed that the MSLT would probably be useless for me, as I frequently don't go to sleep until 4:30 a.m. and if I went to the lab at 8:00 a.m. and they set me up to take naps all day, I WOULD take naps. We decided that that wouldn't be of much use, and that what I really needed to do was to talk with an actual sleep specialist type of doctor. Considering that, I'm unsure why I am still paying off the neurologist's $750 bill for reading the sleep study. Except that I don't want to have my credit record screwed up by him, of course.

THIS lady has narcolepsy: Open Your Eyes to Narcolepsy. I do not.

Fibromyalgia and Insomnia: Cause or Effect? from My Disability Blog (Emphasis added by me):
Patients with fibromyalgia usually have sleep disturbances during their most restful stage of sleep – the delta sleep stage. These disturbances keep them from feeling well-rested and psychologically healthy, in addition to interrupting critical tissue repair during the night. Studies have shown that insomnia in the night leads to more pain during the day and even less restful sleep the next night; a vicious cycle for fibromyalgia sufferers that is hard to end without pain medication and sleeping pills. Other studies have shown that when people without fibromyalgia were disrupted during their delta sleep stage, they developed symptoms such as achy joints and muscle pain, fatigue and sensitivities often associated with fibromyalgia. This information as left researchers wondering if insomnia is an effect or an actual cause of the disorder.
No mention of my Fibromyalgia by the $750 sleep-study-reading doctor.

From the Wikipedia definition of narcolepsy:
Four other "classic" symptoms of narcolepsy, which may not occur in all patients, are cataplexy, sleep paralysis, hypnogogic hallucinations, and automatic behavior. Cataplexy is an episodic condition featuring loss of muscle function, ranging from slight weakness (such as limpness at the neck or knees, sagging facial muscles, or inability to speak clearly) to complete body collapse. Episodes may be triggered by sudden emotional reactions such as laughter, anger, surprise, or fear, and may last from a few seconds to several minutes. The person remains conscious throughout the episode. Sleep paralysis is the temporary inability to talk or move when waking (or less often, falling asleep). It may last a few seconds to minutes. This is often frightening but is not dangerous. Hypnagogic hallucinations are vivid, often frightening, dreamlike experiences that occur while dozing, falling asleep and/or while awakening. Automatic behavior means that a person continues to function (talking, putting things away, etc.) during sleep episodes, but awakens with no memory of performing such activities. It is estimated that up to 40 percent of people with narcolepsy experience automatic behavior during sleep episodes. Daytime sleepiness, sleep paralysis, and hypnagogic hallucinations also occur in people who do not have narcolepsy, more frequently in people who are suffering from extreme lack of sleep. Cataplexy is generally considered to be unique to narcolepsy and is analogous to sleep paralysis in that the usually protective paralysis mechanism occurring during sleep is inappropriately activated. The opposite of this situation (failure to activate this protective paralysis) occurs in rapid eye movement behavior disorder.
I have experienced sleep paralysis and hypnagogic hallucination (phosphenes, the Tetris Effect and sounds). Sleep paralysis is actually a form of hypnagogic hallucination. It is by far the most disturbing form, to me. I have only had one episode in the last several years. I used to have them more often; I talked with a friend who was taking Psyc 101 at the time and she looked it up in her big book. I would really have thought they have at least mentioned the scientific explanation given on Wiki of sleep paralysis. But no, all they said was some people think the person is experiencing an out of body experience. If that idea wasn't already whizzing around in my little brain it started then, that something purely evil was trying to pull me away from my life, that if I did not wake up immediately, I would never wake up again. I guess that would be the "terrifying hallucinations" part that often accompanies sleep paralysis.

My experience with sleep paralysis was that I knew where my body was and who, if anyone, was around me, but I could not move or speak no matter how hard I tried. This compounded the terror.

This painting, "The Nightmare" by Henri Fuseli, is totally what I thought was happening to me: demonic visitation! I promise I've never consciously seen this work of art before.

The Nightmare, by Henry Fuseli (1781) is thought to be one of the classic depictions of sleep paralysis perceived as a demonic visitation.

A couple of other notes:

It seems like Tachycardia while sleeping might be something to be concerned about, too. It was also noted in my sleep study results.




©2014 The ICI Experience, Owner: Sherril Johnson All rights reserved.