I intended to write this follow-up post on my experience with Dr. Whitcomb and his Neurologic Relief Centers Technique last Monday, but have been sidelined by a bad flare-up. Yes, I do attribute my flare to the workshop and testing technique, but even so, I intend to give you a fair account of the workshop, although as with everything on my blog, it will be full of my opinions. It may be a lot to follow, so I hope I have managed to present a readable review.

The logistics of the day went like this:

I was initially invited to the workshop by a local acupuncturist who I will call “Dr. J.” The workshop began at 1PM on Friday, July 24. The local acupuncturist as well as several other local chiropractors actually paid for a training session with Whitcomb. They spent all of Thursday and Friday morning training to learn his technique. Then at 1PM on Friday, myself and the other patients whom each practitioner invited arrived for a lecture by Whitcomb. After the hour long presentation, we broke off with the practitioner who invited us to be tested to see if the technique would benefit us.

So What is This Technique?

The technique involves several minutes of firm pressure to either the anterior or posterior neck trigger points. The pressure is intended to release the tension on the nerves that travel through the meninges, and relive the pain and symptoms this tension causes. Whitcomb attributes most symptoms of FM to this compression. His name for this is meningeal compression, which he uses interchangeably with Fibromyalgia.

I brought three of my support group members with me. As you can imagine, given my impression of Paul Whitcomb and his clinic, I approached this event with a healthy amount of skepticism. Adding to my skepticism was the information one of my resourceful members shared with me about Whitcomb. He is still under investigation by the California Board of Chiropractic Examiners. There is still a possibility that he may lose his license for charges of administering “excessive treatment” and making “sensational statements which are intended to deceive the public.” He has recently closed his practice in South Lake Tahoe and is traveling nationwide to teach his technique. The reason he gave during the presentation for this move is to eliminate the need for patients to travel to him.

Whitcomb’s Presentation

The presentation Whitcomb gave was full of dramatizations: “Fibromyalgia patients are closest to prisoners of war.” “The Fibromyalgia patients who came to my clinic did not want to continue living.” “Eighteen percent of Fibromyalgia patients commit suicide.” I am really curious to know where he got that number, but unfortunately he did not allow for Q & A. He never once described Fibromyalgia patients as type A, as givers, or as overachievers, which in my experience is closer to the truth. Instead he painted a very bleak and desperate picture of us. Most of his claims were dramatic and over-the-top. He did not share anything about FM that I did not already know, but he did supply us with many statistics about his practice and the tremendous results he gets; such as 85% of his patients remain symptom free, only 6% lost the benefit of his correction and treatment after leaving his clinic. It makes me wonder why he would choose to close up shop.

As we moved on to the testing part of the workshop, we were all required to sign a waiver agreeing to let our test be recorded on video and used at their discretion. I refused, as did the other members of my group. I attended this workshop to research and share as much information as I could about Whitcomb’s technique. I would not agree to have my image shown in support of it and without my knowledge. Dr. J expressed our concern and they agreed to let him test us without being filmed.

I think because we were not being filmed, Whitcomb basically left Dr. J on his own, while paying closer attention to the chiropractors he trained and their patients who were being filmed. Also, Whitcomb unfairly sold Dr. J on training with him. He told Dr. J that “the test is the technique,” but then during the presentation he said just the opposite, because the chiros learning the technique also learned a particular adjustment that an acupuncturist like Dr. J is not legally qualified to perform. When I questioned Dr. J about this he said, “Yeah, I guess he kind of fooled me there.” So the “technique” that Dr. J paid to learn and implement into his practice is not complete. I really feel like Whitcomb snowballed Dr. J and any other non-chiro who paid to learn his technique.

And Now I Share Why I Have Been in a Flare

My first instinct was to not be tested, and I wish I had followed it. Instead I sat and watched many patients receive the technique and seemingly have instant improvements. One older gentleman with Parkinson’s had a noticeable reduction in his tremors. Another man was able to lift his arm above his head for the first time in months. I should note that we were not all fibromyalgia patients in the room, although the presentation was geared specifically to FM. After observing for some time, I was just too curious to opt out, so I hopped up on the table and let Dr. J proceed. After a short palpation he concluded I was sorest and tightest at the trigger points on the side of my neck below my ears. I concurred with this assessment.

He used metal rods with soft ends to place steady, firm pressure on my neck for five minutes. It did not take long for me to begin to feel nauseous. I tried to breath through it. Dr. J frequently check with me to see if I had a reduction in pain. I had rated my pain a 6 on the 1-10 scale, with 10 being worst. That day my neck, head, shoulders, upper back and hips were painful. I did not feel any change as I laid there. He asked me to focus on my hips. Laying still I felt no difference, but when I moved my hips, I eventually felt a reduction in pain. After the test, upon standing, my right hip was free from pain, and my left was improved. There was no improvement to my neck, head, shoulders or upper back.

I remained nauseous for sometime after the test. I had driven my members, and did not feel well enough to drive right away, so it gave us an opportunity to stay and talk about the workshop. The test had zero effect on two of my members, and two of us had a slight decrease in our symptoms. For one member the pressure was too painful to bear. Her pain level had been very low to start the day, and after her reaction to the test, Whitcomb remarked he wasn’t sure why she was even being tested if she had no pain. He told the second member who did not experience any relief that she was just being difficult. When I remarked to him that I did not experience any relief in my upper body he said I just needed to have the test performed longer. We all felt underwhelmed by the experience. It did nothing to change my opinion of him that his care for FM patients is motivated most heavily by his bottom line.

Conclusion

The proposed follow-up with Dr. J was to involve an initial consultation, and then three consecutive days of treatment, which would require three visits each day. After the three days of visits he would reevaluate and propose further treatment. It is expected to take weeks or months for complete healing, and then there is likely to be maintenance to assure the meningeal release holds. Given that I have been in a flare since receiving the test at the workshop, and that the improvement I felt in my hips lasted only an hour or two, I called Dr. J and told him I was not interested in pursuing this treatment. He then told me hed decided not to implement the technique into his practice, and that he too was underwhelmed by the experience. I have to say I think he made a very wise decision.

So there you have my experience and my opinion on the matter. I feel like a little guinea pig, but I am happy to have had this experience to share. When Whitcomb had his Web site up, there were a lot of testimonials of people who swear by his technique. One of my members who attended the workshop has personally spoken with several of his former patients who claim to be symptoms free. She was considering attending his clinic and did a tremendous amount of research. She was the most hopeful of us last Friday that his technique would benefit her, but unfortunately she was one of the two it did not.

If Whitcomb comes to your community to teach his technique, I cannot recommend that you attend his workshop, but as we all know, what works for one will not for the other. Even after this particularly bad flare, I still plan to keep an open mind about treatment options available and useful to us. But I most certainly will not be having my meninges released anytime soon!

NOTE: On Tuesday October 27, FibroHaven was moved from a WordPress domain to its own URL. In doing so the comments of each and every post have been affected. They are no longer chronological or nested (if they were a direct reply to a previous comment). It happened on each post, but because this particular post has been so active it is especially troublesome to try and follow the comments logically. I apologize for this confusion and we are trying to fix it, but it appears it may not be possible.

I can assure you no censoring or editing of comments has occurred. If you are interested and brave enough, feel free to read the comments and try to piece them together. I do warn you against taking things out of context as that has already happened. To avoid any more confusion, I am turning off comments on this post until the issue is resolved. If you have something you absolutely must say in response to this, feel free to email me at fibrohaven@gmail.com.

Cheers,

Dannette

10/28/09

From Acupuncture Today. This quote picks up in the middle of an article written by Kaleb Montgomery, DTCM. He is expressing his frustrations over patients he has treated who stop coming, even though they are experiencing benefits. There might be a good message in there if he wasn’t so short sited. I am leaving my own comments and opinions bolded and in parenthesis throughout the article because it is fun and makes me feel good. Feel free to join me!

In another case, a woman with fibromyalgia and chronic fatigue was referred to me because she was not progressing. This woman had so much pain in her jaw and teeth that she was unable to eat solid food. For the last six years, she had only eaten steamed vegetables and tofu pureed in a blender and slurped through a straw. I am not sure why she limited herself to just steamed veggies and tofu, I know that if pain limited my diet to liquid, those two foods would not be my first choice of sustenance (First judgmental comment here. He has charmed me already). As we will see, more likely her outrageously limited food choice was probably a reflection of the mental/emotional root of her illness (Of course she has mental and emotional problems, she has Fibromyalgia after all. What other explaination could there be for her food choice? She is crazy!).

Like the first example, we got great results in just a few treatments. After one treatment, her teeth felt so much better that she was able to eat fresh crispy lettuce for the first time in six years. In our next treatment, she told me that she asked her dentist if acupuncture could help tooth pain and he said no, so she was going to stop treatment even though she had continued to improve this week as well (Okay so the patient is a little short sited as well. Probably what made her an easy target for Mr. Montgomery). Needless to say, I was frustrated and tried to convince my patient that the dentist was wrong because she actually had improved. However she would not change her mind and I did not see her again.

Again, the story would have ended there except that I spoke to the health care provider that referred her to me in the first place. This time the health care provider called me because he was mystified by our patient’s behavior. This patient had come back to them for continued treatment. When he asked why she had stopped seeing me even though it was the only thing that worked, she insisted that she did not want to talk about it. Every treatment she came in and asked, “What can I do to get better,” and he would say “Why don’t you go back to see Kaleb?” She would refuse to talk about it and of course did not call me for more treatment (She sounds more scared and confused to me than mentally and/or emotionally unstable. Maybe they could have gotten further with her with compassion rather than frustration and labels).

For me the most interesting part of this story is not that she stopped coming for a treatment that was working. I eventually came to the conclusion that she was not ready to heal yet (This is a very really possibility and problem. Sometimes an illness becomes so much a part of who we are, it is hard to imagine our life without it. What if she was receiving disability and could not survive without it? Frightening to think of having to start over and redefine your life when you have been conditioned to live with and expect pain. If I was told tomorrow I was cured of FM, I am not sure I would trust it. It would take time to make the mental adjustment – time and compassion from my health practitioners. That does not make me mentally and emotionally unstable, that makes me human.). We all have gotten advice from friends, maybe about a bad relationship, that we dismiss to the eye-rolling dismay of our friends or family. Later on, when the situation plays out exactly as predicted by our friends, we say “Why didn’t you tell me!”

This patient could not yet let go of her disease. The fascinating bit for me is that she continued to spend her time and money to get a treatment that was not working and that she knew would probably not work. If she had just discontinued treatment and not gone back for more, then I would have still been frustrated but could have chalked it up to tight finances or her not being ready to heal thus far. However, the baffling part was that she still spent good money on ineffectual treatment. Why?

My guess is that like many fibromyalgia/chronic-fatigue patients, she used her illness to get attention, love and support from friends and family(OMG! What an idiot! Seriously! What can I say here? He is so clearly detached from the reality. Please, someone, say something intelligent for me here, because I got nothing but OMG!). She had forgotten how to get attention in a normal healthy way. I hypothesized that her support network would quickly get fed up with her if she stopped seeking treatment all together, so to keep up appearances and be able to play the “I am doing everything I can” card, she had to keep “trying” to get better (Really! Again, excellent hypothesis by a clearly compassionate and in-tuned healthcare provider – she says with extreme sarcasm. When can I get an appointment?) .

Nothing is quite as irritating as someone who is sick but is unwilling to try to help themselves (Unwilling? Confused maybe. Scared maybe. But unwilling? Never!). People stuck in that rut quickly find themselves alone and friendless. Being alone and friendless is not what my patient wanted. She wanted the attention, but needed to get/stay sick because it provider her an excuse for something (Without mentioning the obvious typo in this sentence, I am again just going to reply – Idiot!). I did not find out what this something was for her, but I have found it out in other patients. I find this pattern very common in fibromyalgia/chronic-fatigue patients. So common in fact that I will cut this off now and continue this train of thought in my next article by exploring fibromyalgia/chronic-fatigue more. (Ohhh! Can’t wait for the next article, in which you perpetuate every negative and inaccurate assumption about Fibromyalgia and chronic fatigue. Do you have a newsletter? Sign me up!)

Initially I did not plan to share this article with you, but I hope that by shining a light on what is so grossly wrong about Mr. Montgomery’s way of thinking, less people will think like him. People with Fibromyalgia need compassion, support and understanding, not judgments and labels.

22/30

1. I think I have that too.

2. My sister-in-law has fibromyalgia and she’s still working. She says it helps to take her mind off the pain.

3. But you look okay.

4. Is that a real disease.

5. Maybe you just need some B vitamins.

6. Do you have any percocet? I could sure use one right now.

7. Well, we all start to ache when we get older.

8. Can you hold this box for me? I can’t find my keys.

9. Does this mean you won’t live as long.

10. Well, just try to look on the bright side.

Linda Meilink goes on to qualify each thing on her list, and these clearly come from her own personal experience. But it got me to thinking. What has been said to me over the years that has just made me cringe? So here is my list.

1. Did you see that commercial for the new drug that cures Fibromyalgia? – Now this drives me nuts because, A) It does not CURE Fibromyalgia. It is an anti-seizure medicine which has proven to reduce pain in FM patients. B) Pain is just one of the symptoms of FM and it does nothing to address the others – fatigue, fibrofog, dizziness, sleep disorders, etc. C) It has its own list of side affects that some of us would rather not expose ourselves to, and D) I chose not to take prescription drugs to treat my FM.

2. Fibromyalgia is what they diagnose you with when they are not sure what is wrong with you. - ARGH!!! I heard this most recently from someone who was quoting his friend – AND HIS FRIEND IS A DOCTOR! FM is still under-researched and misunderstood, but it is real, and recent testing is going a long way to prove that. Now if everyone in the medical field would just open their mind to the possibility, great progress could be made.

3. If you would just exercise you would feel better. - It is not that simple. Yes, gentle exercise can be beneficial for fibromyalgia, but it can and does cause flare-ups. It is a matter of slowly building up your tolerance, but forgive us if we do not go out of our way to deliberately cause ourselves more pain. It really is a vicious circle. If you knew something you ate would make you healthier, but that you were going to throw up violently each time you ate it, could you?

4. You can’t be here by 10AM, how about 11:30AM? - Uh, no. When I am down, I am down. I will not magically get better in an hour and a half. But thanks for being flexible!

5. Well it is really common. - Okay, so does that mean it should be easier to deal with? Are you equating it to acne or ingrown toenails? I just don’t understand this comment. Pain may be common, but it is still painful. Common does not equal easy to live with. And part of what makes it seem so common is that it is currently being over-diagnosed, but that is for another post.

6. A lot of people are much worse off than you are. - First off, this is absolutely true. I have a lot of fortune in my life – friends, family, etc. But everything is contextual. This is my life, and this is what I struggle to live with everyday. Somedays I manage well, but others I am a total and complete mess. Does that mean that I am being insensitive to my neighbor who has terminal cancer? No, I don’t think so. It simply means I am struggling and could use a little empathy. So reminding me that it could be worse does not make me feel better, it simply makes me feel guilty for indulging in a little self pity.

7. How is your back? - I got this one a lot after I was first diagnosed 11 years ago. The original injury which brought on my FM was to my neck. I had never had issues with my back, and yet numerous people asked me this. Often the same person more than once. Pretty ungrateful of me to not appreciate their interest in my health, but it always confused and frustrated me. This is a much more appropriate question since the accident two years ago. My back is killing me right now!

8. Have you tried acupuncture? - I would love to try acupuncture, but who can afford it? It is not something you can do one time and reap the benefits of it. It is something you need to do repeatedly, and it is costly. I have not always had insurance, and when I have acupuncture/massage is not covered. It is too bad that holistic medicine is for the most part not covered and that it is so expensive.

9. Maybe you are just depressed. - For a lot of patients Fibromyalgia and depression do go hand in hand, and until recently many doctors believed that FM came out of depression, but that is not the case. Many women with FM have never suffered from depression. I have had some pretty low days, but I can honestly say that I have never been clinically depressed. FM has changed my life so dramatically I have had a lot of trouble adjusting and adapting. I have been mad, sad, angry, unreasonable, and a few times I felt close to losing my mind – but tell me, could you be physically tortured and never respond dramatically to it?

10. Silence. - No response is sometimes the worst response. I have had new doctors sit and smile condescendingly at me while I explained to them I have Fibromyalgia. They never say it, but I know they are thinking that it is not real, that what I am experiencing can be explained away, that I am weak, and a hypochondriac. They say a lot by sitting there saying nothing at all and I hate them for it. I hate their close-mindedness and their pre-judgement of me. I can never get past their silence.

So that is my list. What is on your list?

NOTE: My husband thought this was a little edgy and he could tell I was clearly not feeling well when I wrote it. The very nature of the subject tends toward negativity. I hope this is not too abrupt to read but I am choosing not to edit myself.