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Posted 9/2/2009 10:23 PM (GMT 0)
There's a new acupressure technique in trial. There's more information at


(Jeannie has removed this link because the site is advertising.)



I've just had the "test" treatment and begin the first nine treatments tomorrow.



I'm sure someone here is keeping track of things like that, but I wanted to enroll here and make a statement about the initial resdponse I've had.



First, it was a huge relief for a medical doctor to actually tell me I have fibromyalgia 10 years after I'd made that diagnoses myself. Then I begtan to have "panic" increases in the pains until I got the first treatment. Within five minutes with my acupuncturist my pain level went form 9 out of 10 to 5 out of 10. Though we all know such immediate relief is temporary, here I am two hours later with pain levels at about 6 and not all the pain "centers" have reactivated, yet.



From what I understand there are a very limited number of acupuncturists authorized to use this technique (Neurologic Relief Centers Technique) and there is a permit fee, on top of the session charges, which the acupuncturist must pay to the study for each use of the technique -- sort of a royalty payment.



If you can, check out the situation with this treatment. I have high hopes for extended relief, using my experience today as a barometer.



Blessed be.

Post Edited By Moderator (Jeannie143) : 9/13/2009 6:36:54 PM (GMT-6)

Posted 9/2/2009 11:08 PM (GMT 0)
I wouldn't suggest this.  You might want to reconsider.  Paul Whitcomb, the founder of this, has been under investigation and the investigation was just completed July 31.  Here is their conclusion.

The California Board of Chiropractic Examiners completed its investigation of Dr. Whitcomb on May 26, 2009 and reached a final decision on July 31, 2009.  Whitcomb was disciplined for "Repeated Acts of Clearly Excessive Treatment, Gross Negligence, Incompetence, Deficient Charting, and Deceptive/Sensational Statements" . The board revoked Dr. Paul Whitcomb's license for two years effective August 31, 2009 and fined him $23,502.50 for the cost of its investigation. In its conclusions the chiropractic board stated the following:

    It may be considered a factor in mitigation that respondent appears dedicated to relieving the     suffering of fibromyalgia patients and feels that he holds the key to their recovery. Any     mitigation from these noble feelings, though, is tempered by respondent's raging     entrepreneurial spirit. He engaged in extensive and hyperbolic efforts to market his     "discoveries;" he paid commissions to employees and former patients who brought in patients;     he insisted that patients pay for treatments in advance and in cash; he charged patients $62.50     for each of multiple daily adjustments; he was reluctant and slow to return monies when     patients left before completing their treatment; and he charged patients approximately $1,000     for a week of monitoring their conditions once he determined they were well. On balance,     respondent's devotion to relieving the suffering fibromyalgia patients does not mitigate his     conduct.

Sherrine

Posted 9/3/2009 12:58 AM (GMT 0)
Okay. Thank you. I'll do some more research. With the relief I've experienced today, I'm disappointed to hear the Relief Centers legal standing is iffy.
Posted 9/3/2009 1:24 AM (GMT 0)
After finding that the principle complaint was that Dr. Whitcomb didn't warn patients that the beneficial effects would be temporary, I don't feel the current operation is a scam.  My local acupuncturist, approved by the V.A.H. system, made the transient nature of the effects very clear.  Like chiropractic adjustments, the hiatus of pain severity is expected to be cumulative, resulting, after a long series of treatments, in a "balance" that can be maintained with monthly or bi-monthly therapy.  He's also making arrangements with me for a sliding scale due to my very low income.  After I discuss it with the practitioner I'll make up my mind.
Posted 9/3/2009 2:00 AM (GMT 0)
CyYentz,

    I'm glad to hear of relief from another alternative. I've heard of accupressure and accupunture bringing

some less pain. A friend of mine did accupuncture for her pain with great success until she fell and damaged

herself even worse. She is now thinking about knee replacement. I told her about my relief from herbals and

she might try them first. When we are in so much pain sometimes anything sounds good.

   I hope you have continued relief......

                Godspeed

                    Nana Monster

Posted 9/3/2009 2:32 AM (GMT 0)
Cy, I chose a poor choice of words when I said it was a scam and I have corrected that in my original post.  But, I still would be mighty careful.  When I was doing my searches there were stories of people getting relief at first and then ended up worse than when they started.  You can do the searches.  Just google Whitcomb Neurologic Relief Centers Technique and you will see what I mean.

Fibromyalgia is a miserable illness but we just might be able to help  you live a full and enjoyable life in spite of fibromyalgia.  There are too many people out to make a buck on people's pain.  We see it all of the time on this forum.  So, keep your eyes open and continue to research this.  Whitcomb and this practice wasn't investigated on a whim.  The email address you gave belongs to him, from what I was reading.

Sherrine 

Posted 9/3/2009 4:52 AM (GMT 0)
I will support Sherrine's findings A well known consumer advocate, Clark Howard, shared on his radio show one day that one tip off to scam artists is that their advertising is mostly testimonials. Did you notice the home page? That's pretty much all he has on there. Plus lots of blogging around the internet from the people treated there state that even if their pain was reduced most everyone went back to their original pain level or worse once treatment was stopped.

BTW, he has lost his license to practice as of last month but still appears to stay active through a fellow doctor/personal friend. I would stay far away and keep my money in MY pocket instead of his and his friends. Plus, there are several university hospital/research medical facilities working very hard on researching the cause of fibromyalgia. They feel they are getting closer but still do not know the exact mechanism that causes fibro. When the cause isn't known it's pretty hard to treat it.


For anyone interested in this man's case, here's the site with the BOARD OF CHIROPRACTIC EXAMINERS STATE OF CALIFORNIA, DEPARTMENT OF CONSUMER AFFAIRS.

http://www.casewatch.org/board/chiro/whitcomb/decision.shtml

I'm a believer in hard science and facts and when the researchers find what they consider the 'cure' I'll be first in line. Until then..... we learn to live~
Chutz
Posted 9/3/2009 1:56 PM (GMT 0)
Nana Monster, I still have some hope because my practitioner has been much more up-front and informative than described in the statements entered against Paul Whitcomb and he has not planned as many, or as frequent, treatments as are described.  I'm taking all this data with me to see him today.  Were I you, however, I'd listen to the other posters who have looked more deeply into this particular treatment than have I.

 

I'll risk beginning the process because it's worth it to me personally.  After 20 years of increasing pain and with my newly won neurologist's diagnosis of fibromyalgia I just want some relief.  I do not use pain killers because I was once a heroin addict, have lost the ability to exercise appropriately and can no longer even meditate effectively due to the pain.  The levels have reached the point that I can't even use the most basic yoga routines and techniques.  Last night I had the first decent six hours of sleep I've enjoyed in more than three years.

 

I also feel that my individual practitioner is very honest and he's been careful to emphasize that the treatment is not 100% effective and is not a "cure," but a maintenance program which will diminish in frequency to once every month or every two months.  And my initial treatments are paid for by the V.A. Hospital.  Since my present income is less than $12,000 per year, my acupuncture practitioner is figuring out what my lowest possible payment program would be.

 

I will continue to post as to my personal experiences, for whatever informative value those reports may have.  I'll also try very hard to remember to include a reference to the questionability of the efficacy of the program.

 

Thank you, Sherrine and Chutz, for the information and encouragement.  At 68 I'm a little set in my ways, so I have a tendency to compile all the data and then go on my headstrong way in hopes of being the exception to the rule.  Still, I'm not highly suggestible and have a record of trying anything that seems sensible until I'm sure whether I benefit enough to continue or not.  None of the treatments I've tried so far has been efficacious for more than a few weeks.  This may turn out the same way.  But I gotta shoot for the gold ring before the crippling pain drives me the rest of the way out of my mind.

Post Edited (CyYentz) : 9/3/2009 7:59:30 AM (GMT-6)

Posted 9/3/2009 5:45 PM (GMT 0)

I wish you a lot of luck.  I know the search to find something to control the pain can be difficult.  I use ibuprofen with food, extra strength Tylenol, Malic acid/magnesium supplements, and vitamin D3 to help with pain and fatigue.  This doesn't make me pain-free but it does take the edge off the pain so I can live my life.  I'm not willing to take narcotics. 

If you get so you can walk, that is wonderful and will help with the pain.  It has helped me a lot.  Also, if you have access to a pool, that is great exercise for people with fibro.

I've had fibro for 22 years and I'm 62.  You sure do get sick and tired of being sick and tired!  Have you checked out the Fibro 101 thread...the first thread on the forum?  There are links to good information about fibromyalgia, including information about malic acid/magnesium supplements and vitamin D3 and how they work in your body.  Many with fibro are deficient in these and that can cause some pain and fatigue, too. 

Don't hesitate to ask questions because we are here to help you.  I do hope you get some relief from your pain.  I hope to hear more from you soon.

Sherrine

Posted 9/3/2009 7:25 PM (GMT 0)
Thank you, Sherrine and all.  I've been trying this, that and the other for nearly 12 years -- since I became aware of fibtomyalgia.  The main reason I'm following up on the treatment is to report back with actual patient results.  I thinjk a lot of it has to do with the integrity of the individual practitioner, and mine is very open about all the information.  I also think Paul Whitcomb overstated things by claiming ALL fibromyalgia is caused by meningial interference or the neural binding in the neck.  It so happens that I suffered damage in those two areas on two occasions, so it may well be that my problems are rooted in such.  That would make me a very lucky person, but I'll wait and see.  Also, as I mentioned, the charges are being paid by the V.A. Hospital, so it's well worth my while to try -- so long as I get the data you gave me before building my hopes too high.

 

I'll be around.   Blessed be.

Posted 9/13/2009 2:39 AM (GMT 0)
Well, I've continued with the treatment and with my research. There are various bits of information I've received but not yet verified that I will not publish. I do, however, want to share my own experiences.

On Labor Day my practitioner made a special trip into San Francisco by ferry (the Bay Bridge was closed for work) to get my 3rd set of treatments done within the prescribed period of time. He has regularly fit this treatment into the billing Veterans Administration Hospital Services accepts. While doing so he has also begun actions to get me treated on a scholarship due to my financial situation. After the 2nd set of treatments I went through a 67 hour period without followup. The pain -- at 8 to 9 on a scale of 1-10 for years -- went down, on Friday, to about a 2. Saturday evening, 28 hours after the last treatment, some pain sites went up to around a 5, but many didn't increase significantly fromn the 2 level. I then had three treatments each day Monday (Labor Day), Wednesday, Thursday and Friday. Right now, 27 hours after the latest treatment and despite my going food shopping today on my cane instead of my wheeled walker, my pain levels are so low in every respect that I have to concentrate really hard to figure out they're about at a 2 or 3 level. I've been so
happy about being able to stand up STRAIGHT for the first time in more than 15 years that it's been tempting to jump right into mild exercise in an attempt to rush the improvement. I have, however, adhered almost slavishly to the cautionary instructions Peter lectured me with.


I understand that Dr. Whitcomb, perhaps in an excess of zeal, used the word "cure" in reference to this procedure. He also, I believe from what I've heard and read, failed to stress strongly enough that fibro-myalgia sufferers probably will need a treatment every month or two for life in order to maintain the feelings of well being the concentrated sessions bring to most sufferers. All of that seemed very obvious to me, but then, I've been care giver to victims of more severely disabling conditions over the past 20 years. I understand quite well that there has never been a chiropractic or acupuncture treatment that did NOT require regular reinforcing "tune-ups." Unless the great relief and increased pleasure in life either disappears despite continued treatments or is eliminated through some unforseeable damage from the process, I am well pleased with my experiences.

If I fail to find strong corroborative evidence for the information I've heard and read in support of Dr. Whitcomb soon I may well post the data as hearsay. I want to try my best to find such evidence before repeating hearsay, though.

Post Edited By Moderator (Sherrine) : 9/13/2009 3:57:44 AM (GMT-6)

Posted 9/13/2009 4:32 AM (GMT 0)
Whoever is interested, see if you can find peer reviewed scientific journal articles about double blind studies and the use of this technique. It would be hard to do double blind, but maybe blind studies (that is where the patient does not know if the treatment is being done correctly). Never rely on testimonials. Scientists call this anecdotal evidence and it is not considered valid. There are a lot of reasons for this. One is that feeling better is subjective. We usually do not remember how bad the pain was after it is gone. We tend to minimize it. Two is if you expect to feel better, you usually will (at least for awhile) because you expect to feel better. Three, we all respond to attentive care, at least partially. The only way to truly know if a treatment works is to use proven research methods and to do more than one study.

Sue
Posted 9/13/2009 4:15 PM (GMT 0)
That is precisely why I'm still trying to find confirmation of the hearsay evidence.  So far as I know, the first controlled study is just now being set up but is still in the "data gathering" stage preparatory to the blind control setup.  I understand the importance of double blind controlled studies.  Such studies are easy to institute and run with pharmaceuticals, but the very fact that physical manipulation techniques depend on subjective judgment of pain levels makes it more difficult in my opinion.  That's why I am hoping to be able to post a record of my very subjective experiences over a period of time.  I, too, realize that the euphoria related to minor relief of extreme pain can strike the sufferer (like me) as glorious and near total relief.  Thus, the extended period of study and reporting may expose a personal tendency to exult in relief less total than it seems or even a temporary relief treatment that loses its efficacy over time.

 

Another great problem, it seems to me, is that we are being so conditioned to depend upon chemical alteration of our systems by pharmaceutical distribution that natural treatments that show promise may be pushed aside.  Chiropractic methods have labored under that weight and still do.  Acupuncture and acupressure have only been recognized in the United States for a very short period of time.  In my childhood, chiro was a running joke and acupuncture was almost never even mentioned. 

 

So I'm trying hard to keep an open mind and report factually.  Today, I hope because I over-extended myself yesterday by doing heavy grocery shopping (rolling cart and public transport, but stressful) with no assistance, I have slightly increased (from 3 of 10 to near 6) pain and sensitivity in my left scapula, both elbows and both the middle back and the small of my back.  Tomorrow I'll receive three treatments again, and I hope the levels of pain will recede again.  And I hope I'll be able to avoid stress better in the future.

 

Blessed be.

Posted 9/13/2009 7:10 PM (GMT 0)
Please believe me, I'm not interested in the least in convincing anyone that this treatment is the best we'll ever see or the answer to everyone's problems. Nor do I want to seem challenging in my posts toward others who know at least as much as do I -- in most cases more -- about fibromyalgia and the research process around the disease. But there are a couple of things that I don't quite understand, so I'd like to pose some questions in my search for understanding.

1) Since fibromyalgia is a "diagnoses of last resort" and the "tests" that have been administered to me by physicians are strictly subjective, how does the objection to "subjective evidence," testimonials and individual perception of pain in reference to an as yet untested treatment carry so much weight? Isn't subjective evidence appropriate when dealing with a subjective disorder identified through subjective testing?

2) If there has not, as yet, been a clinical study -- admittedly because of the improper handling of the introduction of the technique -- what evidence CAN be offered and accepted other than testimonials? And aren't the five persons who actually appeared as witnesses against the doctor judging in just as subjective manner as those who still support the use of the technique?

3) Unless some of us are willing to risk early treatment in untested procedures, how will any clinically accepted data be obtained?

Again, I am, truly, just trying to understand.
Posted 9/13/2009 7:25 PM (GMT 0)
As an addendum to my earlier post in re: relief and the resurgence of pain, yesterday I deserted my wheeled walker and walked with my cane while using a wheeled cart to do my grocery shopping. Lately I've had help with heavy shopping, but the man who has helped me has been under the weather for over a week. By the time I'd loaded my cart, I was pushing more than 80 lbs. in the cart. In San Francisco, returning to the public transport to get home required that I push the cart uphill for a block on a crowded sidewalk, maneuver the carts over numerous rutted out trolly tracks, and push 15 yards up a steep incline to reach the disabled boarding site. That process had to be mimiced, after riding standing up during the ride to block the cart from rolling away from me, over two intersections with rutted out rails and up a 32% grade for 2/3 of a city block. There's no reason to complain about the difficulty -- it certainly beats not having food.

Today, as a result of the physical exertion coupled with the stress of agoraphobic reaction to the trip, I do have more "resurgent" pain. My upper arms are up to about a 4, my lower spine is close to 5, and my mid back pain (primarily muscular) is about that level, too. This information is offered strictly in a desire to make my responses to the technique fully understood. I still feel a lot better than I did 10 days ago and I'm still gtetting better sleep for longer periods than I've experienced without sedatives in more than 10 years. Time will tell whether this is to be an ongoing improvement or whether I'm reacting to the euphoria of seeming to have found a partial remedy.
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