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


ImmuneSupport.com

09-27-2007

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

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.

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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.
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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...?
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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.?
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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.
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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?
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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
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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"
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Yeah
Posted by: kstepnitz
Oct 15, 2007
I can hardly walk let alone low impact exercise. Who says opiods do not work for FMS, that is all that works for me. I work 30 hours, and it is hard, really hard to even move in the morning, if my doc, does not let me see a pain specialist soon..(on flexeril, Motrin, vicodin, cannot tolerate depakote) if I do not get rid of some of this pain, and just plain cannot walk, I will have to get disability, which takes 18 months, I cannot go that long with out money Kathy
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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.
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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.
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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.
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Really, this thing had paragraphs when I wrote it
Posted by: wutexit
Feb 1, 2008
Otherwise, what a long-winded blog. Sorry . . .
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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
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