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Old 06-08-2007, 03:16 PM   #1
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Helpful FM/CFS/MFPS Books

The following are some of the books I have personally found helpful in learning about Fibromyalgia Syndrome, Myofascial Pain Syndrome, and/or Chronic Fatigue Syndrome. Most of them I bought used, but in excellent condition, online. In many cases the $3 shipping was more than the book. All of these books were rated 4/5 Stars by many FM patients...reader reviews are available online.

Many of these authors have written abbreviated papers available online through various FM support groups.

Fibromyalgia & Chronic Myofascial Pain Syndrome
Devin Starlanyl, M.D. (1st Edition 1996-blue cover; 2nd Edition 2001-green cover) This doctor from Brattleboro, Vermont specializes in research & treatment. She has FM/MFPS. Anything by this doctor is excellent in my opinion.

The Fibromyalgia Advocate Devin Starlanyl, M.D.

Taking Charge of Fibromyalgia (both authors have FM)
Julie Kelly M.S., R.N.
Rosalie Devonshire, M.S.W., L.C.S.W.

Fibromyalgia For Dummies Roland Staud, M.D, Rheumatologist & Associate Professor of Medicine University of Florida, Gainesville.

From Fatigued to Fantastic (has FM)
Jacob Teitelbaum, M.D.
Internist in Anapolis, Maryland

What Your Doctor May Not Tell You About Fibromyalgia
R. Paul St. Amand, M.D.
Endocrinologist & UCLA Asst. Clinical Professor
This book promotes what some medical professionals have called a controversial treatment plan called the Guaifensin Protocol. However, many FM patients state they found relief. Important to know is that it is a very restrictive and life-long protocol that restricts salicylates. Salicylates are naturally found in many foods and are ingredients added to cosmetic and hygiene products, etc. Salicylates block the effectiveness of guaifensin so trying guaifensin w/o restricting salicylates would render it mostly useless. Guaifensin is an ingredient commonly found in OTC cough syrup, but is also RX'd at higher levels which is usually the level required to be effective. Treatment involves body mapping and calibrating pain levels, then individualizing dosing levels based on each individual so it would seem that self-treatment with this method would be challenging and not likely useful.

What Your Doctor May Not Tell You About FM Fatigue
R. Paul St. Amand, M.D.
Endocrinologist & UCLA Asst. Clinical Professor

Chronic Fatigue, Fibromyalgia, & Environmental Illness
Burton Goldberg, Editor of Alternative Medicine Digest
(The author presents a compilation of 26 doctor alternative therapies)

The Trigger Point Therapy WorkbookClair Davies, NCTMB
The book introduction written by Dr. David Simons (Travell & Simons Myofascial Pain & Dysfunction: The Trigger Point Manual by Drs. Janet Travell and David Simons---a two volume medical manual written in scientific narrative for medical professionals. Dr. Janet Travell was personal physician to President John F. Kennedy who lived with chronic back pain all his life. Dr. Travell and Dr. David Simons pioneered medical science in the area of body pain and published their wor in the afore-mentioned book. However, that particular book is in medical jargon not well understood by the layperson. Fortunately it included fabulous body illustrations by Barbara *******s, and those illustrations have helped other authors like Clair Davies produce more public-friendly books such as this one. Excellent self help book illustrating body trigger points and self-release methods using different small (tennis-size and smaller) balls and body weight. Includes great body muscle illustrations w/ trigger reference points.

Pain Erasure The Bonnie PRuden Way
Bonnie Pruden (1980s)
While this is a really old book, it remains relevant today and is excellent. Bonnie Pruden personally consulted with Dr. Janet Travell in developing her techniques and this book. Includes great body muscle illustrations w/ trigger reference points.

Pain Free 1-2-3
Jacob Teitelbaum, M.D.
Narrative---no illustrations; but, includes natural & RX remedy options.


While all of the above-listed books are good and very helpful, if I absolutely had to choose 2 books from among them, they would be:


B]Fibromyalgia & Chronic Myofascial Pain Syndrome[/B]
Devin Starlanyl, M.D. (1st Edition 1996-blue cover; 2nd Edition 2001-green cover)

B]The Trigger Point Therapy Workbook[/B]Clair Davies, NCTMB
[).[/I]Hope this helps.

Last edited by jam338; 06-09-2007 at 10:07 AM.

 
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Old 06-09-2007, 04:56 AM   #2
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Re: Helpful FM/CFS/MFPS Books

Thank you so much for posting these.

 
Old 06-09-2007, 01:37 PM   #3
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Re: Helpful FM/CFS/MFPS Books

I am a patient of Dr. St. Amand's. He has saved my life and brought me to a place of almost total relief. All the hassles are worth it, because the protocol becomes second nature to those who apply it. To say that the method is challenging and therefore not useful (I do place a BIG emphasis on NOT USEFUL - last sentence in the St. Amand section) is wrong. FMS sufferers who read these posts should not be discouraged by such statements as this, but seek out truth for themselves.

Regarding salicylates being in foods - this does not apply the same way as applying skin creams to your skin. The acid in the stomach destroys any of the salicylates before it can negate the medication, so therefore is not a problem. Skin creams, or anything applied to the external body, which contain organic compounds such as aloe, castor, etc., are another matter and must be avoided. There are many options to purchase, however.

Kirstee

What Your Doctor May Not Tell You About Fibromyalgia
R. Paul St. Amand, M.D.
Endocrinologist & UCLA Asst. Clinical Professor
This book promotes what some medical professionals have called a controversial treatment plan called the Guaifensin Protocol. However, many FM patients state they found relief. Important to know is that it is a very restrictive and life-long protocol that restricts salicylates. Salicylates are naturally found in many foods and are ingredients added to cosmetic and hygiene products, etc. Salicylates block the effectiveness of guaifensin so trying guaifensin w/o restricting salicylates would render it mostly useless. Guaifensin is an ingredient commonly found in OTC cough syrup, but is also RX'd at higher levels which is usually the level required to be effective. Treatment involves body mapping and calibrating pain levels, then individualizing dosing levels based on each individual so it would seem that self-treatment with this method would be challenging and not likely useful.

 
Old 06-09-2007, 02:35 PM   #4
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Re: Helpful FM/CFS/MFPS Books

Sorry for the confusion, please let me clarify my post. I am not in any way saying that Guaifensin treatment is not useful. I have never tried it, but have considered it. I can not find a doctor in my area who is trained in administering it; none have even heard of it. What I was trying to say in my post is that "self-treatment with this method would be challenging and not likely useful" -----the key word here is "self-treatment"----meaning without treatment guidance by a doctor trained in the Guaifensin protocol. I have read on this Board and others where other individuals have posted they tried it and it didn't work. My guess is those folks were not following the Protocol, but just taking OTC Guaifensin. All I am saying is that just buying cough syrup OTC with Guaifensin in it won't likely produce effective results because salicylates will block it for one and for another the Guaifensin dosing level might need to be higher than that found in OTC cough syrup. From everything I have read, Guaifensin Protocol dosing levels must be determined and continually evaluated by a doctor trained in the protocol and body mapping pain points.

I am sure there may be some who have just bought Dr. Amand's book and self-administered with some success. All I am saying that after reading the book, for me, it all sounds quite challenging. I was especially concerned to read the part that said symptoms will get worse for a period of time and then start to improve. For me, I am scared about making myself worse....I can barely function as it now.

Kirstee I am very happy for you that it has worked for you and hope that you will write more about it so that we can learn from you about it. Did you find a doctor to help you with it or are you just administering it from Dr. Amand's book? I have a friend who knows someone who actually relocated to Southern California in order to get the treatment through Dr. Amand's clinic there, and the feedback is that she is doing great now and back to work, but that it took about 3 years or so to improve. I read online that for every year of FM it takes 3 months of the Guaifensin treatment....what was your experience with it? Thanks

Last edited by jam338; 06-09-2007 at 03:15 PM.

 
Old 06-10-2007, 01:47 PM   #5
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Re: Helpful FM/CFS/MFPS Books

Dear Jam:

My FMS doctor is Dr. St. Amand, the author of the book. I used to live in Southern California, and Dr. St. Amand was a 45-minute drive from where I lived. I was very blest to have him so close. I have relatives who live in Utah who fly into LAX twice a year to see him (they fly in in the AM, go to the appointment, then fly back home the same day). The expense and time for my folks have been well worth it. Now that I live in Colorado, I will still take time to go see him once a year.

I have been on the protocol for four years. At the time of my first appointment, I had a horrendous body mapping. There were deposits all over my body, and in huge chunks. My rib cage was so tender from costochondritis that I couldn't wear a bra. Dr. St. Amand titrated my dose over the period of a month, finally settling at one 600MG tablet 2 x per day. As you know, other FMS sufferers may need less or more, depending on their own body tolerance. I began to be very encouraged when the costochondritis lifted and my ribcage was pain free, so at that point I was became committed to the protocol. I did so very well on the protocol, that I believe it took about 5 months of medication to clear a year's worth of FM, rather than the usual 3 months of medication to a year. After about 3 years on the meds, Dr. St. Amand also added a 600MG fast-acting guafenesin tablet 2 X per day to help clear the sludge that was stuck in different parts of my body. The additional fast-acting tablet helped a great deal. I am now doing great. From crippled to healthy in 4 years has been well worth the trouble I have been through on the protocol. I swim, ride my bike, ride ATV's go camping, fishing, and hiking. The active life style I now have was not even approachable when I was at my worst. In fact, my biggest sport during those years was sleeping and laying down on the couch with a heating pad.

I remember gulping very hard when Dr. St. Amand told me I would become worse on this medication before I ever got better. I remember how close to death I felt at that time, and began to pull up something from way down inside myself that gave me the courage to proceed. It was a hard process during the first year, but then the symptoms became less painful, and farther apart. I was working full time during all of this and managed to keep going (an absolute miracle). I am symptomless, except for a bit of fatigue (which may be from running around like a crazy women - just don't know for sure).

The other difficulties that many FMS sufferers have is hypoglycemia (about 40% of all FMS patients will have this condition). If a low-carb, sugar-free diet is not adhered to, chronic fatigue and panic attacks will continue to be a problem. Guafenesin protocol cannot be blamed for lingering fatigue if the diet is not followed.

I do understand your concern about FMS sufferers taking the St. Amand book and interpreting it their own way. Taking cough syrup, or taking OTC guafenesin at their own dosing will cause dissapointment. However! More and more physicians and chiropractors are beginning to catch onto the protocol and are utilizing it, along with the body mapping process.

Not to pry, but I'm wondering what city and state do you live in. There may be a local doctor for you to consult about the guafenesin protocol. I have a reference of physicians for the United States and Canada.

Blessings,
Kirstee

 
Old 06-11-2007, 08:54 AM   #6
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Re: Helpful FM/CFS/MFPS Books

Quote:
Originally Posted by kirstee View Post
Not to pry, but I'm wondering what city and state do you live in. There may be a local doctor for you to consult about the guafenesin protocol. I have a reference of physicians for the United States and Canada. Blessings, Kirstee
Kirstee, thanks for the additional info on the Guafenesin Protocol. I live in Vacaville, California---a relatively small city that is about half way between San Francisco and Sacramento, both are about an hour away if travel is in non-peak commute time. In peak commute SF can take 2 hours or more. Kirstee could you kindly check your reference book to see if there is anything in there for Dr. Kenneth Sack, UCSF Medical Center, San Francisco; or, Dr. Carol Jessop, private practice in Oakland. Also, could you please share information about the cost of treatment w/Guafenesin Protocol.Thanks.

My primary care doctor just did an approved referral for me to UCSF Rheumy Dept, and I have been trying research doctors there to find one that is good with FM. As we all know, it is hard finding a really good one. The last one I had was horrible so I quit seeing him after 2 visits and just stuck with care with my primary doc, who is wonderful, but knows little about FM. Although my referral is not specifically to him, but rather to the Rheumy Dept., I found information about a UCSF Rheumy that sounds encouraging, Dr. Kenneth Sack. He was listed online as having been a featured UCSF speaker/trainer on FM at two medical conferences in the early '90s. He is still at UCSF, but I have not yet found anything more recent involving his work/activity with FM....so, not sure what, if anything, that might suggest. And, I don't even yet know if he still accepts patients---the UCSF directory states he is the Director of Rheumatology Clinical Services, so he may now hold a purely administrative position. I found an email for him, so I think I will write first before trying to navigate the UCSF voicemail h*ll trying to find him---The Rheumatology Dept there appears to have addresses in several different physical locations. The other doctor I mentioned is Dr. Carol Jessop, now in private practice. I found information on her online as well, but again nothing after the early '90s---but have learned she is still in private practice in Oakland. Back in the mid '80s she was at UCSF in their Internal Medicine and then went on to become Director of Alta Bates Hospital's Internal Medicine Dept., then left for private practice. In 1989 the first ever conference on Chronic Fatigue was held in SF, she was a featured presenter and her data was so impressive she was asked to present nationally the next year at the first national Chronic Fatigue Conference in Charlotte, NC, the headquarters of the national assn. She presented data based on her own UCSF client case profiles, 1,324 patients, 75% female. At that time the data she presented was the largest single CFS/FM data base available----that data, presented below, is still quoted/referenced by many doctors in attendance at that conference, some who went on to write books, papers, etc. However, Dr. Jessop has not written any books that I am aware of, probably because her research was conducted when she was an Associate Clinical Professor with the University of California at San Francisco----so it is all public domain educational information.

Since the '90s of course many other doctors have furthered and expanded FM research work, but Dr. Jessop's UCSF data is still quoted in several books by other authors and online resources; therefore, the data seems to be deemed to remain relevant.

Again, the following list is from the mid 80's/early 90's when hardly anyone had heard of Chronic Fatigue or FM. The background on how this list came to be appears to be as follows. In the mid 80's there was a suddent outbreak of Chronic Fatigue in the U.S. In order to keep public health risks in the U.S. to a minimum the Center for Disease Control in Atlanta is assigned the national protocol responsibility to collect and study data on any sudden outbreaks of any new disease. Therefore, in response, the CDC established 4 surveillance cities across the U.S. where doctors were required to collect and report data to the CDC regarding patients with chronic fatigue complaints. As far as I can tell S.F. does not seem to have been one of the four national surveillance cities. The underlying concern at that time in SF seems to have been whether there might be any type of connection of CFS/FM/HIV, an area where SF had a great interest. Remember, this was in the mid-80's when both CFS and HIV were erupting in similar parts of the country....likely in major population areas. Therefore, it was quite likely that was a consideration in UCSF/Dr. Jessop's decision to stay involved and collect the data, independent of SF not actually yet being designated as part of the CDC surveillance requirements. However, there is an equal if not more signficiant element as to how Dr. Jessop became involved. There was an article in the '80s in the SF Chronicle about a female patient of Dr. Jessop's. She was in her 40s, very active women.... high achiever professional.... who could suddenly no longer work....not the type of individuals who would dodge work....she THRIVED on work....so Dr. Jessop KNEW something had to be seriously wrong. That is THE case that started her pursuit to find out WHAT happened. That SF Chronicle article brought in hundreds of other patients to see her....all in the same situation. At that time CFS was being called the "Yuppie Disease" because it seemed to be happening to a thriving affluent, high achiever, population. I am guessing that it wasn't actually occurring more in that population group, but rather that population group was the one with the financial means to seek treatment. In those days even fewer people that I knew had medical insurance than they do today. But, apparently that media exposure is what created Dr. Jessop's 1,324 patient files, and lead to her becoming known, at least for awhile, as the national expert. Other doctors from around the nation flocked to SF....its a popular place of professional conferencing<smile> ....and they actually learned she had DATA files. In collecting the Chronic Fatigue patient data, Dr. Jessop learned there was a correlation among her patients to FM......most of them had it. She subsequently left UCSF, and while she remains in private practice today in Oakland, I have no idea if she continues to practice or has an interest in this area. My HMO health insurance will not authorize a referral to her since she is in private practice and not a part of their referral network...too bad she left UCSF as they are part of the referral network. However, I am considering seeing her and just paying for it myself, but first I will see the UCSF Rheumy since my HMO as approved that. As a strange twist of fate, I recently learned that my acupuncturist [a licensed medical doctor, internist, trained in both western and eastern medicine (she is Chinese)] was first hired by Dr. Carol Jessop. How strange is that twist??? She says that when she worked for her back in the '90s that Dr. Jessop was a driven high achieving professional who was a real stickler for intricate data files, and that all the subordinate doctors hated the record keeping requirements. When I showed her the body of work, she finally understands how the data was ultimately used. She had transferred over to pain management and had apparently never been aware of the CFS/FM work....and yet now today she is treating me for pain management related to FM and chronic back pain.

There are FM Symptom/Findings Lists today that include more symptoms than those listed below, but it is a good short list of symptoms for those wondering if they might have FM. You can have FM and not have all the symptoms and/or clinical findings listed below.

CFS/FMS SYMPTOMS FROM 1,324 PATIENT PROFILES
Percentage
Chronic Fatigue 100
Cold Extremities 100
Impaired Memory 100
Frequent Urination 95
Depression 94
Dr. Jessop stated that this was a ’reactive depression’ not a ‘clinical depression’ and that only 8% of her depressed patients had required prior medical attention for this before the symptoms of CFS or FMS emerged.
Sleep Disorder 94
Balance Problems 89
Irritable Bowel Syndrome-FMS only 89
Muscle Twitching 80
Dry Mouth 68
Muscle Aches 68
Headache 68
Sore Throats 20

CFS/FMS CLINCAL FINDINGS
Percentage
Tender neck muscles 91
Yeast infections 87 (usually tongue or mouth)
Tender FMS points -FMS only 86
Low blood pressure 86
White spots on nails 85
Thought to relate to zinc deficiency 85
Abdominal tenderness 80
Subnormal temperature 65
Possibly indicating under active thyroid function
Tender thyroid 40
Normal temperature 25
Swollen lymph nodes 18
Elevated temperature 10

Last edited by jam338; 06-11-2007 at 10:15 AM.

 
Old 06-13-2007, 09:29 PM   #7
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Re: Helpful FM/CFS/MFPS Books

you have to be careful with certain medications and make sure that it dont and wont interact with other medications you take daily . and my protocol is whats good for one person mite not be soo good for you! everybody with fibromyalgia cant take all the same medications and our bodies are not all equal even though we are diagnose with the same syndrome.

 
Old 07-06-2007, 03:58 PM   #8
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Re: Helpful FM/CFS/MFPS Books

I just got done reading "Women Living with FM' by Mari Skelley. It was a wonderful book. It helped me to realize I am not alone and gave really great examples of how other ppl deal with their FM. I highly recommend this book as well. I'm going to go get the FM for Dummies I think.
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