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Daniel J. Clauw, MD, on the Effective Treatment of Fibromyalgia – An Update

  [ 3164 votes ]   [ 32 Comments ]
www.ProHealth.com • September 27, 2007


Dr. Daniel J. Clauw, MD, explains his approach to treatment of Fibromyalgia patients, and offers a vision of the future.

Healthcare professionals may also wish to review Dr. Clauw's course for CME/CE credit, launched May 29, 2008 - "Fibromyalgia: A Label for Chronic, Widespread Pain."

Daniel Clauw, MD, is a physician dedicated clinical care and research on the mechanisms and most effective treatments of patients with FM, CFS, and related conditions such as Gulf War Illnesses and multiple chemical sensitivities. At the University of Michigan, Dr. Clauw is Professor of Medicine in the Division of Rheumatology, and Director of the Chronic Pain and Fatigue Research Center and Michigan Center for the Advancement of Clinical Research. He leads a national team in the study of these illnesses at U-Mich, Georgetown University, the NIH, DoD, VA, and other academic medical centers.

_______________________

Question: Dr. Clauw, when did you first become aware of Fibromyalgia as a valid illness with real symptoms?

Dr. Clauw: While in training as a rheumatology fellow [at Georgetown University. Most of my mentors believed that Fibromyalgia was a real illness and taught me that. I was lucky in that regard, because many rheumatologists of that era (and some of the present era) did not believe that Fibromyalgia was a “real” problem, and certainly would not recommend that their junior faculty do research on this condition.

* * * *

Q: Do you have a standardized treatment protocol for your FM patients?

Dr. Clauw: I use a combination of low-impact aerobic exercise, symptom-based pharmacologic therapy, and cognitive behavioral therapy. Not all patients need all three.

n I usually begin by prescribing medications to target the two or three most prominent symptoms that a patient has. In most cases pain is one, but poor sleep, fatigue, memory problems, or other symptoms sometimes interfere more with function than pain.

n I only use one treatment at a time, and see if it works before deciding whether to continue with the treatment, or discard it. One of the biggest problems I see in practice is that doctors and patients try too many things at once, and then they have limited ability to tell if something is working, or whether a new symptom is a side effect of a treatment.

n After I find the correct one or two medications to reasonably control many of the symptoms, then I will add aerobic exercise, and sometimes cognitive behavioral therapy (CBT). Both exercise and CBT can either be done simply (with simple instructions for exercise or a workbook or Arthritis Foundation course for CBT) or with more professional guidance (e.g., with a physical therapist, personal trainer, social worker, or psychologist).

These treatments take many months to work (in contrast to medications, which usually work within a month or so if they are going to work at all), but the benefits are more durable than the benefits obtained from medications.

n If this combination of treatments doesn’t work, I will sometimes add complementary and alternative therapies at this point.

* * * *

Q: What are your recommendations for the following important issues for FM patients (as applicable)?

Dr. Clauw:

n Sleep (unrestful sleep; insomnia) - Sleep hygiene (avoiding caffeine/alcohol, exercising near bedtime, etc.), followed by tricyclic medications (e.g., FlexerilR, ElavilR in very low doses given a few hours before bedtime), or sedatives (e.g., zolpidem [AmbienR]). LyricaR and NeurontinR can also help this symptom. When using the tricyclic drugs or any medications, Fibromyalgia patients should “start low, go slow.” I usually begin at 5 to 10 mg of Flexeril or Elavil taken two hours before bedtime, and increase the dose by 5 to 10 mg per week.

n Pain - Tricyclics, duloxetine (CymbaltaR), pregabalin (Lyrica), gabapentin (Neurontin), venlafaxine (EffexorR), tramadol (UltramR)

n Low energy (combating fatigue) - Buproprion (WellbutrinR), duloxetine (Cymbalta) venlafaxine (Effexor)

n Depression (drugs prescribed, etc.) - See above recommendations, plus selective serotonin re-uptake inhibitors (e.g., ProzacR, ZoloftR, PaxilR, often in higher doses that work for depression).

n Brain fog (inability to concentrate, memory problems, etc.) - Same as for low energy, plus occasional use of Central Nervous System (CNS) stimulants.

n Diet- I don’t think there is any diet than can be recommended except a sensible, healthy diet.

n Supplementation (how to address any deficiencies) - There are a few supplements that may be helpful for FM such as magnesium supplements, or SAM-e, but patients should understand that these are drugs when taken in this way. I am always somewhat amused when a patient comes in to me taking eight different nutritional supplements, and says that he/she doesn’t want to take any drugs. A drug is anything that is ingested to change the body’s physiology - nutritional supplements are drugs.

* * * *

Q: What is your recommendation regarding exercise for FM patients?

Dr. Clauw: Just as with medications, a “start low, go slow” approach is most effective. Focus on low-impact exercises, begin at a very low level (5 minutes 3 to 4 times per week) and slowly increase by a minute or two per week.

In some patients who are very intolerant of exercise because it worsens their symptoms, warm water aquatic therapy can be a good way of starting an exercise program. I try to eventually get patients to do 20 minutes per day of aerobic exercise, and tell them it will typically take 3 to 4 months to reach this point.

* * * *

Q: Are you currently involved in any research studies?

Dr. Clauw: Yes, many. We are doing research into both the mechanisms, and most effective treatments, for Fibromyalgia and related conditions. With respect to mechanisms, our group is particularly interested in the pain amplification mechanisms in Fibromyalgia. We and others have uncovered clear evidence that there is some process causing normal pain signals to be amplified in Fibromyalgia, almost like the volume control is set too high in the nervous system. We also study other components of the nervous system, such as the hypothalamus, and autonomic nervous system.

With respect to treatment, we are very interested in whether and how non-drug treatments work in FM. We have ongoing trials of cognitive behavioral therapy, exercise, and acupuncture in FM. We are also working on trials of drugs being developed especially for FM.

I feel that all of the above areas are very promising.

* * * *

Q: What do you think the future looks like for FM patients? Are we moving forward in dealing with this debilitating disease - as patients, practitioners, and as a society?

Dr. Clauw: Perhaps the most promising thing for patients is that the pharmaceutical industry is getting much more interested in FM than in the past. The pharmaceutical industry ultimately will be responsible for putting Fibromyalgia “on the map,” both with respect to the “legitimization” of this illness, and to finding more effective treatments. That is how validation has happened with other illnesses like irritable bowel syndrome, and migraine headaches.

__
For more information about the diagnosis and management of Fibromyalgia offered by the Chronic Pain & Fatigue Research Center at the University of Michigan – and to read about the Center’s current pain research studies – go to http://www.med.umich.edu/painresearch/pro/over.htm

Note: This information has not been evaluated by the FDA. It is generic and is not meant to diagnose, prevent, treat, or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.



Please Discuss This Article:   Post a Comment 

update?
Posted by: moineau
Oct 10, 2007
absolutely nothing new from this doctor. even though i use zoloft, i decry the use of so many antidepressants which dry up the body. how do these guys wind up getting promoted on this website? after ten years of diagnosis this month, first for fms and then for cfs, i am missing the dr. jay goldsteins of this world. i was treated by him successfully six years ago using an off-label approach, but he was forced to retire soon afterward. back to square one with dr. clauw...?
Reply Reply

 
treatment
Posted by: marbat
Oct 11, 2007
The best things for me because I am so sensitive to medication has been Magnesium, exercise, but most effective of all, the correct application of Guaifenesin, which has no side effects. I disagree with Dr Clauw about diet: It is very important to find out if you are hypoglycaemic as the symptoms overlap with fibromyalgia. I can work again after nearly twenty years! I now teach four hours a day, then there's teaching preparation, running a household for three adults, and once a week I also volunteer three hours' proofreading. I have one or two visitors for dinner three or four times a week, on a regular, ongoing basis. I recently had a strenuous 8 day journey and had a one-hour and a two-hour bush walk. I rarely have a headache and can cope as long as I pace myself. This is a total reversal of my lifestyle only five years ago.

 

 
Trigger point Therapy
Posted by: ecflag
Oct 10, 2007
I take effexor and it works wonderfully. However, recently, I have begun taking trigger point therapy for myofascial pain. If you are not getting assistance with your present methods, I highly recommend that you find someone who does this kind of therapy.I has helped me tremendously.

 

 
Dr Jay Goldstein
Posted by: wentworth228
Oct 11, 2007
He was brilliant, but I think that the treatments he did were dangerous. First, do no harm. I wonder if he ever got sued.

 


FIBROMYALGIA IS A HIT.
Posted by: happyy
Oct 10, 2007
I REALY ENJOYED READING THIS ARTICLE FOR ME HAVE A EXCELLENT INFORMATION, I KNOW HOW IMPORTANT IS FOR ALL THE FIBROMYALGIA SUFFERS PERSON TO FIND OUT SO MUCH GOOD INFORMATION IN ALL THESE ARTICLES, AND ALSO IS GOOD TO KNOW THAT SOME OTHER PEOPLE FINALLY UNDERSTAND THAT THE FIBROMYALGIA IS A REAL ISSUE. SO MANY TIMES IS BEING VERY DIFFICULT FOR ME, AND I KNOW THAT UPTHERE ARE SO MANY OTHERS LIKE ME. HAVE A GOOD DAY EVERYONE EVEN THAT TODAY IS A REAL ONE DIFFICULT FOR ME IS RAINING DOWN HERE IN MASSACHUSETTS, AND ALSO VERY COOL DAY.
Reply Reply

over medication
Posted by: ahso
Oct 10, 2007
Hello fellow sufferers, Personally have not found the combination of drugs that can maintain "all systems go". I've had adverse reactions to many of the drugs and when I do get one that I'm not too sensitive to, it works for awhile but causes me other problems. It feels like an emotional seesaw. Currently taking small amounts of flexeril. Then Xanax and ambien at night. Was taking Wellbutrin xl (that can really get you squirrely) and Paxil (love those extra pounds). Cymbalta, Lexapro, neurontin, had trouble taking. Dr. just gave me Provigil(have not tried it yet) Can't take effexor because you can't break it into smaller pieces. I hear Lyrica helps some people. Would love if other people would share with me what has worked for them, especially if they are chemically challenged as I seem to be. Feel like I'm trying to fill the holes a dyke. Thank you for reading this.
Reply Reply

 
Too many meds
Posted by: WHITEMUSTANG
Oct 14, 2007
Ahso- Flexiral is antinflammatory and this is not an inflammatory disease after a while it will mess up your stomach. Your taking too many antidepressents and Lurica is for nerve pain and it may help. See a pain management Dr. and make him your primary care Dr. for the duration of this syndrome/disease. I don't think your chemically challenged its another thing we go through. I ended up in ER with rashes all over me from the meds. Was up all night taking Benedryl nothing helped except the shot of adrenelyn I received in the ER. You might find out that you have allergies now cause that is another thing we go through. I take Allegra D and allergy injections. Its a never ending battle. Try the pain management and see if that helps you. Denise from Michigan

 

 
Treatments
Posted by: wentworth228
Oct 11, 2007
Try going to the online support groups. Altho everyone reacts differently. Each person has different problems and reactions to meds and combinations of meds.. But individuals will often tell you what their experience with a drug was, such as lyrica or neurontin. Try subscribing to the affter group.... one of the yahoo groups.

 


Dr. Clauw - comment
Posted by: JaneSmith
Oct 10, 2007
Just having the drug companies and the public recognize this illness is a step in the right direction. It's been a long time for me.
Reply Reply

Pain control
Posted by: Mickie378
Oct 11, 2007
Hi Everyone. Just diagnosed 2 years ago..I am a active 46 year old in the cleaning business 20 years.. My cronic pain started 3 years ago but have been suffering 10 or more years..I was told not to stay idell for 2 long, my work is very exausting I have been told to quit or cut down, (I am a single mom of 2 boys) unfortunatlly I am into this business til i die..The money is great. On the other hand i ws told not to quit but to stay active..For me my morning pain is soo bad i cant move for at least an hour..I am on Paxil and seriquil for sleep and anxiety,I soak in a warm tub and strech daily. I have lots of streesses in my live but with the right attitude i am ok..I also take MS Contin daily 2 times and dilodid 3 times a day for break threw.Most of the time i have a handle on it but lately i stiil have bone wrenching pain.. any feed back will be greatly appreacied. at tis point i cannot quit work, I also try to eat a ggod diet.Kathie from Mass.
Reply Reply

 
FM
Posted by: mberardi
Oct 21, 2007
Hi dear,

In a way your lucky it started only two years a go. I suffer from this for 17 years, and still desperate, since now I am walking with a cane and someday needs a wheelchair. I had a very good response with the antiepileptic drug Lamotrigine (Lamictal in France) and could live almost a normal life for 16 months over 17 years, it is already something good to take.For any reason, the effectiveness is over and I had to quit my job again (I am a medical doctor, a job I love so much) However, may I advise you to avoid at any cost any morphine like drug such as Dilaudid or demerol which are quite efficient in the beginning, but will lead you toward the zombie state pretty soon and will worsen your pain. My best bet if you do not any response to the antiepileptic drugs (Neurotnin or Lyrica) or antidepressive drugs (such as Effexor), is Tramadol in low releasing formula. Have you asked your doctor about that? Paracetamol or Acetaminophen in combination is good too acts synergistically, be careful with your daily doses. Depen,ding on the types of pain you have,(bone, muscular, arthritic, burning pain, migraines), codeine is also very good. That you should discuss with your doctor. But definitively the best of the best is aquagym in warm water 20 min a day every two day; it regenerates you so well!!! My Best wishes from Paris (France)

 


Most will get better.
Posted by: wentworth228
Oct 11, 2007
How does this tie in with the research Dr Robert Bennett did in 1997 that showed that most people with FMS don't get better over time?. Especially, if you are can barely exercise or have other problems and are ultra-sensitive to medications and types of treatment.?
Reply Reply

Daniel J. Clauw, MD, on the Effective Treatment of Fibromyalgia
Posted by: WHITEMUSTANG
Oct 14, 2007
I am a fibromyalgia/CFS person for almost 20 years and Dr. Clauw please erase the psychologist from your list of Drs you use in the care of your patients. This is not a thing of psychology nature. Every visit with a FM/CFS patient there will be a new complaint. Fibrofog (How many Dr's know what that means and can explain it?)one week, the next a stiff neck the next, (numbness)tingling in the face area the next, jaw pain and so on and so on. Just because you have these complaints once dosen't mean they won't return. Primary Care/Pain Management is what these people need. Am I a doctor-NO But someone who definately has experience in this disease and I do believe I have the right ideas on who and what we may need. Psychologists just make more money off the patient or insurance companies. Ane the more these patients have to run to this Dr. and that one makes us sicker. Sometimes we can't go. Has anyone ever thought of that. Just cause there is a scheduled appt. for 9 AM dosen't mean we can make it. It takes us a long time to get going in the morning. Alot of these Dr's need to go back to school to learn about this disease and quit the quess work. I don't mean to sound forward or rude just someone who has had enough and finally have the Dr's I need. I guess I just needed to vent. Denise from Michigan
Reply Reply

 
To Denise from Michigan
Posted by: fsnyder
Mar 5, 2010
Denise,

I too suffer from severe FMS and CFS. I am a physician and have treated many patients. I am currently under the care of a Pain Medicine Specialist and a Rheumatologist. I have tried EVERY drug there is including potent narcotics. They all have side bad effects. I am presently reviewing articles by Dr. Daniel Clauw at the University of Michigan. He has studied this disease since 1994. He has published many articles on the use of medical marijuana and it's significant benefits. Both of my doctors approve of my efforts. You are lucky in that your state has passed legislation for the medical use of this natural plant's ability to resolve many of the problems with fibromyalgia. If I were you I would go see him.

Dr. Frank MD

 

 
Psychologist
Posted by: MSRnlds
May 13, 2014
It is my personal experience with Dr Clauw that he does not consider FMS a somatic illness. In fact quite the opposite is true. It could be detrimental to rule out using a psychologist in the course of treatment of FMS, for one, because it is so incapacitating, and also because most of us have encountered family, friends and even physicians who dismiss our symptoms as psychological and the disregard and disrespect added to the physical suffering has injured us psychologically. For me, there was a period of time when I needed time with my own psychologist to work through the results of that kind of bias toward the suffering I was enduring. Its important to find one who understands this is a very real illness.

 


Back to the dark ages
Posted by: cfspete
Oct 14, 2007
I cannot believe that someone on this "good" website is being promoted that still thinks exercise, drugs and CBT is good for Fibromyalgia. Does Dr Clauw not read Dr Cheney and many others, the latest Canadian Guidelines or see what a hoo haa CBT is having in England. Would the good doctor exercise if he had the flu? Would he talk himself out of this condition? Lets all just take drugs and suffer the side effects instead! Sorry but a no vote for this "antiquated therapy"
Reply Reply

 
What is recommended?
Posted by: wentworth228
Oct 15, 2007
Or is it now a dead-end or waiting game?

 


Daniel Clauw - I am no shocked
Posted by: fibrotime
Oct 16, 2007
I am in my 50s with FMS for the last 15 years. I live in the DC area and tried many times in the past to get to see Dr. Clauw to no avail--even when he was here. Now, I'm kind of relieved that I did not. His answers are no different than all the doctors I've seen. The ones who understand FM shock you the most including my existing doctor who is also greatly respected for IDing FMS candidates. It's my belief that such highly regarded doctors in the FM/CF community are only using us as research subjects only and mostly interested in financial gains. Every time I called such a super doctors, I found that either they don't accept any insurance or charge an excessive amount of $$$s to continue their research. My current doctor for example is a nice one, believes there's a drug for each patient, tried many with me including all the ones Dr. Clauw talks about and none worked. After10 years, he's back to the same routine of prescribing the same drugs. He does not accept any insurance now (he used to) and when you go to see him you are met at the desk with "you must pay in advance the whole visit or can't see the doctor" --usually those visits can amount to $500-700 a pop. Go figure! Somtimes, I get extreme fibro pain and fog when dealing with doctors. I'm soooo tired and frustrated.
Reply Reply

FM treatment
Posted by: mberardi
Oct 21, 2007
Dear readers, I have a 17 years experience living in this hell, including going through the non-recognition of thi disease, going from flare to flares, then depression, job loss, friend loss, do not talk a bout the family, and finally you loose your self confidence, but need to go on. I am french and there, the social security takes you in charge at a 100%; fine! However, there is no network at all, showing you what to do, how to navigate to the right doctors. I am lucky enough to be a doctor and have connections to know who to contact,still it is not easy. But for the vast majority of doctors, this disease is still stigmated as a hysterical women disease. Until now, all I have seen is that every doctor offers its own recipe, but at last there should be an internationalized standardized protocols for treatments and procedures to be installed automatically such as the elements aside the medications, exercise, psychotherapy etc... For instance, a patient is diagnozed with cancer, then there is a standard procedure that is installed: surgery, radiotherapy, chemotherapy, hormonotherapy, psychotherapy etc...long term follow up. This is what we really need instead of stagnating in our pain and despair.What do you think?
Reply Reply

 
No standardized treatment approach possible.
Posted by: Katy47
Oct 29, 2007
It would be great if there were an international protocol, but this disease is too unique for that. Maybe one day we'll get it under control; until then there's going to be a lot of experimentation.

Bon courage a nous tous.

Katherine

 

 
Doctors with recipes
Posted by: annavirgil
Oct 24, 2007
I HAVE HAD THIS DISEASE FOR 22 YEARS AND I AGREE THAT DOCTORS SHOULD COME TO SOME AGREEMENT AS TO WHAT THE PROTOCOL IS FOR TREATING THIS DISEASE. THE PROBLEM IS THAT EACH PERSON'S BODY REACTS DIFFERENTLY TO THE DISEASE. THE ONE THING THAT EVERYONE HAS IN COMMON SEEMS TO BE EXTREME STRESS. I DESCRIBE THIS DISEASE AS A MIND/BODY DISCONNECT. INTELECTUALLY BEING STRESSED OVER MINOR THINGS HAS NEVER BEEN MY WAY OF LIFE. UNFORTUNATELY, NO MATTER HOW LAYED BACK I AM MENTALLY, MY BODY BECOMES CHARGED AND RIGID. I THINK IF DOCTOR'S COULD COME TO THE AGREEMENT THAT WE ARE INTELLIGENT, NORMALLY MENTALLY CALM AND POSITIVE THINKERS IN MANY CASES, THEY COULD GET OVER THEIR HYSTERIA THAT WE ARE ALL VICTIMS OF OUR MENSTRAL CYCLES.

I KNOW THAT I BECAME ILL DURING A TIME OF UNBELIEVABLE STRESS AND MY BODY LOST THE ABILITY TO COMBAT PAIN. I THINK THE KEY WORD HERE IS "LOST." OUR BODIES ALL STOPPED PRODUCING SOMETHING, IT IS JUST MANIFESTING IN DIFFERENT SYMPTOM FOR PEOPLE OF DIFFERENT GENETIC MAKEUP.

MY BODY STOPPED PRODUCING SOMETHING THAT MOST PEOPLE'S BODY PRODUCES. I HAVE HAD MANY SURGERIES AND THERE IS ONE THING THAT WORKS FOR ME, OXYGEN AND SLOW BREATHING. I HAVE YET TO SEE THIS AS PROMISING THERAPY ANYWHERE. I HAVE BEEN THROUGH EVERY POSSIBLE DRUG, EXERCISE THERAPY, PT BIOFEEDBACK, YOU NAME IT I'VE DONE IT. OF COURSE TRY TO GET A DOCTOR TO PUT YOU ON OXYGEN THERAPY FOR CF/FIBRO. NOT A CHANCE. NO ONE WILL LISTEN.

 


Step Outside the Allopathic Box
Posted by: wutexit
Feb 1, 2008
I concur with the majority of the comments here regarding "same old stuff." The drugs mentioned: been there, tried most of them, intolerent of a lot of them. Didn't see the off-label use of the muscle relaxant Zanaflex mentioned, but that's the newest one I'm going to try (picked it up today), to see if my sleep gets a tad refreshing after all these years. It's expensive so even with insurance I probably will have to stop it. Pill doc prescribed this specific brand as opposed to generics because of the delivery mechanism of the brand. Of course, if I get up and can make my bed without wishing I could crawl right back in, I may have to re-budget for it.

The FM/CF attention and research is great, but while the researchers research, we all must do our best at life. It took 3.5 years for me to get disability through my work insurance (yes, 3.5 years with NO income, thank God for a squeaky clean credit history from my working years because I was fully outstretched on it plus $30k on my mother's credit cards before I got the settlement). Social Security took 6 years. I'm in Northern Virginia and was blessed to be referred to excellent lawyers, both in Maryland.

As the medical community continues its debate of a link between FM/CFS and Lyme disease, my Lyme tests came back more positive than negative. I spent a year on mega-antibiotics (and antimalarials for a positive test for a common co-infection of Lyme called Babesia, or Babesiosis). Doc said I'd be better after a year if the antibiotics were going to work, so we stopped them all. My system was wrecked and it took months to regroup, and I probably still am in detox from them after 5 months. Amazingly and thankfully, he suggested I try an herbal protocal developed by Dr. Lee Cowden. It's called the Lyme Protocol, but the protocol has benefitted those with FM/CFS diagnoses. The herbs are antimicrobials, detoxifiers, relaxers, and support the adrenals and the brain. The jury is still out as to whether the protocol is helping me. (Some have experienced relief in weeks.) It's surely not hurting, though. I will continue the protocol (about $300 a month for 6 months) beyond 6 months because there's not much else to try and it's recommended that the protocol be extended for chronic situations.

I truly believe that I have been able to FORCE myself to do a reasonable amount of activity (after having gained 40 pounds then losing it) because of both my chiropractor and my massage therapist. (But don't ask the insurance companies to take what a chiropractor has to say as meaningful evidence.) It was actually my chiro that added the CFS/FM diagnosis to the adrenal exhaustion I initally presented with. He's no ordinary chiropractor, that's for sure. He brings to the "table" many disciplines of study far beyond his bone crunching doctorate: homeopathy, acupunture, applied kinesiology, Acu Graph meridian measurement, nutrition, Bach flower, Total Body Modification, etc. He is not anti-pharmaceuticals but can't prescribe them. He has a huge arsenal of treatment options at his disposal for his patients' benefit. I'm wasted for a day and a half after he clears things out, but then I'm at least more functional than I was. Indeed, the incredible brain fog still exists, I get lost in my home town of 26 years, I can't remember jack squat, and tasks of daily living remain overwhelming. I can only imagine how much worse off I'd be without him. If I wait too long between treatments, my body and brain harshly remind me.

Likewise, my massage therapist has studied beyond his basic massage school certification. Of particular benefit for me has been the Bowen Therapy Technique, developed by the late Thomas Bowen of Geelong, Australia. I'm not cured, but I am *firmly* convinced that these sessions have kept me above the bedridden line. I'm also wiped out in kind of an "energy healing fog" for at least day after a treatment, but then am strong enough to continue with the exercise program. (Sadly, my therapist has just been diagosed with FM. :-( Don't know if he'll be able to continue his practice.)

I'm not happy that every step or pedal stroke or lifted weight or yoga stretch is so full of effort and drag, but I will NOT return to the extra 40 pounds of weight. When my mother asked my chiropractor if my workouts were doing me more harm than good (and they're minimal in comparison to my former marathoning and ultramarathoning days), what he said was, "You CAN'T get deconditioned with FM." Which I surely did in the first years of not working: sleeping 16-20 hourse a day, channel surfing, eating Price Club muffins, and drinking Frappucinos.

Lastly, I wanted to comment on the posts that suggest that a psychologist isn't a useful doctor in treating FM/CFS. Again it depends on the doctor's background; not just any psychologist will do. I am grateful to have been referred to my "shrink" (by my medical doc. It is also this psychologist that referred me to my lawyers for claims with my work insurance company and Social Security). He has been an invaluable champion for me in the insurance battles. More importantly, he VALIDATES that what I'm experiencing is NOT in my head. He acknowledges that the depression is a side effect of the FM/CFS/Lyme, or, as I put it, "If you felt this lousy for so long, you'd be depressed, too." He can describe how I feel and the struggles I endure better than I'm able to put into words. When all I'm inclined to do is beat up on myself for not being able to get out of my own way most days, he offers encouragement for me to slow down and take good care of myself. He knows the Type A results I've acheived in my life and fully understands that no one with my (and I'd assume the collective "our" in this forum) background just ducks out of society because of laziness or "faking it."

Maintaining a sense of humor (sick, some would say) has also been a huge plus for me. All things South Park liven me up, both the show and the movie. Howard Stern's movie Private Parts has been excellent medicine, as is his show on Sirius Satellite radio. Same with things like The Osbournes and most Britcoms. They all really take you out of your "stuff."

Blessings all,
Wutexit, aka Debbie
Reply Reply

Fibromyalgia and Heavy Metal Poisoning
Posted by: HelenET
Jul 9, 2008
Hello, I am reading the comments and see that it's a very heavy possibility that most of you have heavy metal poisoning. I am pleased to serve you in any way I can. I suggest you all go read up on it by googling "heavy metal poisoning" and reading a good handful of the sites that come up. I am not a complete expert on it but have been healing it for a good number of years, and you can to. I also suggest that any doctors or other practitioners treating fibroyalgia, chronic fatigue, depression, anxiety, even possiblysome hallucinations,and similiar symptoms with medications expand their research far beyond this and also go look at heavy metals, which often DO NOT show up in the heavy metals tests. If the test are negative, still large possibility that's that cause of your symptoms. Dr. Imoto has some interesting things to say about heavy metals. Quick immediate help for emotional states- flower remedies, such as Bach Flower Remedies, that are currently enormously helpful to me, I got trained in the bach Flower remedy system, reiki, and Donna Eden's Energy Work system. I have too get off the computer now, feel free to leave me a message here. Peace, Love helen
Reply Reply

Dr. Clauw is SPOT ON!
Posted by: Darlene from Michigan
Jun 4, 2011
I agree with his practice and have followed his advice. He is a regular speaker at the Detroit Metro Fibro Group, here in Michigan, at which I attend. So many of us are hurt (including me) when first referred to a psychiatrist and/or psychologist. But that may be because we don't fully understand what suffering for sooo long has gradually done to us mentally. Personally, I benefitted magnificantly from cognitive therapy and an anti-depressant. Therapy also helped me accept my limitations. FM being genetic and modified by environment, we will probably NEVER gain back 100% of the function we once had. However, we can be our OWN 'best' by practicing healthier habits... whatever works for YOU; stretching, walking, resting, networking, medications and yes, even psychotherapy. There is one more thing I'd like to see more of from Dr. Clauw. MORE RESEARCH WITH AROMATHERAPY. Aromatherapy is not just 'nice smells' and 'candles burning'. But essential oils that Dr. Clauw would consider a 'drug' (as he says even supplements are drugs since they change the physiology of your body). UofM has done research in aromatherapy. I'd like to see the efforts combined.
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Totally indebted to this man
Posted by: ttscook
May 7, 2014
20 years ago, after six months as a patient of some of the best doctors in DC, spending thousands of dollars on tests that said there was absolutely nothing wrong with me, and feeling everyday like I was 90 years old, I found Dr Clauw @ Georgetown. In one visit, he made the worst of it go away. I still take the medicine he prescribed then, and it still works. Without it, within 3 days I can't get out of bed. I am, and always will be, totally in his debt.
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My experience with Dr Clauw's Magnesium treatment
Posted by: MSRnlds
May 13, 2014
Both my husband and I were in the initial double blind studies Dr Clauw did at Georgetown. With the first injection I experienced increased pain, accompanied with a feverish hot feeling on the same side of my body the injection was given. I also experienced generalized mild flu-like symptoms. Symptoms lasted about a day. My husband had no symptoms.

Following 2 weeks of 2 injections per week I began to see improvement. Suddenly my pain levels decreased and my energy level began to rise. With each subsequent injection the pain level dropped and the energy increased. My husband continued to have no symptoms. At the end of the course of injections I returned to the most normal life I'd had in years.

By the end of the study I informed the doctors that my guess was I had been getting Magnesium and my husband, placebo. I was correct. 20 years later I have continued using Magnesium Sulfate injectable, but more like 1 per week, sometimes 1 per mo, and periods of time that I did not take the injections. Decreasing the dosage increased the symptoms in time. Stopping the injections brought a gradual a return to severe pain and inability to function normally in my daily life. The time it took to deplete my body and return to the pre-magnesium pain and energy levels depended on personal factors in my life and the rate my body was using up magnesium.

I have been through several repletion series, 2X week for 12 weeks, all but one time was successful. It turned out the doctor who gave the injections during that period was using a very small needle and not doing the deep muscle injections. I should have paid attention. I have never had a problem from the long term use of Magnesium Sulfate injectable and consider it the most successful part of my treatment protocol. I am utterly grateful to Dr Clauw and if we still lived near him we would have him as our doctor.
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