Fibromyalgia Poorly Served By Drug Happy Rheumatologists
The term “fibro” was used to designate soft (or fibrous) tissue involvement and “myalgia” is Latin for “pain”.
Fibromyalgia was originally thought to be a rheumatologic condition because – like a disease such as rheumatoid arthritis – it is characterized by musculoskeletal pain. But research has since shown that there are no abnormalities in the musculoskeletal system in people with fibromyalgia. Instead, the problem appears to lie in the pain processing pathways of our central nervous system.
The term Fibromyalgia was created by rheumatologist Dr. Frederick Wolfe in 1984 to describe a condition affecting primarily women.
Of course if you’re subscribed to my free Health Matters newsletter, http://drmurphreesnewsletters.com, you read my article about how Dr. Wolfe now denies that fibromyalgia is a real disease-Sad but true.
Before 1990, no guidelines for evaluating and diagnosing fibromyalgia existed. To reduce misdiagnosis and confusion, the American College of Rheumatology (ACR) sponsored a multicenter study to develop these criteria; the results were published in 1990. In 1992, at the Second World Congress on Myofascial Pain and Fibromyalgia, the diagnostic criteria for fibromyalgia were expanded and refined.
Since rheumatologists were the first health specialty to promote and ratify the diagnostic criteria for fibromyalgia, they became the doctors of choice for seeing fibro patients. It didn’t matter that may at least early on had no idea what fibromyalgia was or how to treat it-unfortunately this is often the case today. Many rheumatologists won’t take any new fibro patients or are openly skeptical about the condition.
I believe rheumatologists are the worst possible doctors to manage a fibromyalgia patient’s case.
Why? There are several reasons –
Because they deal in hard to treat autoimmune diseases, and see patients other doctors don’t want to see, Rheumatologists have a lengthy waiting list-may take 3 months to be seen.
A waiting list of patients can create a lack of empathy for the longwinded, hard to treat fibro patient who needs more than a five-minute office visit every 3 months. “Who cares if you come back I have plenty of other patients waiting in line to be seen.”
Rheumatologist are trained to use drugs, usually incredibly toxic drugs, Methotrexate, gold salts, Plaquenil, Enbrel, etc.
Here is the warning box info for Enbrel:
WARNING
SERIOUS INFECTIONS AND MALIGNANCIES
SERIOUS INFECTIONS.
Patients treated with Enbrel are at increased risk for developing serious infections that may lead to hospitalization or death.
Most patients who developed these infections were taking concomitant immunosuppressant’s such as methotrexate or corticosteroids.
Enbrel should be discontinued if a patient develops a serious infection or sepsis.
Reported infections include:
Active tuberculosis, including reactivation of latent tuberculosis. Patients with tuberculosis have frequently presented with disseminated or extrapulmonary disease. Patients should be tested for latent tuberculosis before Enbrel use and during therapy. Treatment for latent infection should be initiated prior to Enbrel use.
Invasive fungal infections, including histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis, and pneumocystosis. Patients with histoplasmosis or other invasive fungal infections may present with disseminated, rather than localized, disease. Antigen and antibody testing for histoplasmosis may be negative in some patients with active infection. Empiric anti-fungal therapy should be considered in patients at risk for invasive fungal infections who develop severe systemic illness.
Bacterial, viral, and other infections due to opportunistic pathogens.
The risks and benefits of treatment with Enbrel should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection.
Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with Enbrel, including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapy.
MALIGNANCIES
Lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with TNF blockers, including Enbrel.
Scary huh?
The black box warning for Plaquenil is just as scary.
Immunosuppressive medications used by rheumatologists for autoimmune diseases are fraught with danger. That is the reason these drugs are used only by rheumatologists and not by internists, family physicians, or other medical specialists. Rheumatology is a medical specialty developed to prescribe and monitor the side effects of these high-risk medications.
The rheumatologists mentality has been conditioned over the years to continue prescribe more and stronger symptom suppressing drugs. This is a disastrous approach for fibromyalgia patients. Most fibro patients can’t tolerate drugs – they only make them worse. Drugs don’t make you healthy, they can be helpful but they don’t make you healthy. The only way to reverse fibromyalgia is to get healthy!
Using an atomic bomb like Enbrel or Plaquenil to treat fibromyalgia symptoms is not only stupid, it is incredibly dangerous!
Traditional medicine and drug therapy is a dead end for fibro patients. You can read my past blog Traditional Medicine Fails Fibro below or even better:
You can listen to my past First Week of the Month Fibromyalgia Teleconference recordings here:
My fibro blog- Traditional Medicine Fails Fibromyalgia
Thank you sooooo much for this info on Enbrel and the other crappy drugs Rhuematologists prescribe for those with Fibromyalgia. I have had it for over 20 years. I see a pain management specialist. While I hate hate hate taking pain medication Vicodin specifically. I have no choice. I begin to writhe in pain and will eventually vomit like a person with migraines ( I don’t have them) due to the pain. It is unrelenting. I have PTSD, I also take Lyrica, Zoloft, topomax, and ambien. what a horrible cocktail, BUT it gives me a life. I take care of my grandchildren, I am able to function in society. If I could just live without these drugs…:( sad… dee dee
i used to be bulimic years ago and now sefufr terribly with gastric reflux, im not bulimic now but because of the reflux i cant bear the thought of eating so im losing weight and my friends and family think im making myself sick again, for her own sake she needs to be honest with the doctors when she goes for her tests, if you get the chance watch her like a hawk, is she eating lots of food and disappearing soon afterwards, is she obsessed with the weight shes losing, is she secretive, does her breath smell sickly, does she go on huge downers with no energy, these are things i used to do, ive ruined my life being bulimic, its not just the reflux, i have constant erosion’s which are agony when they start, a hiatus hernia and all sorts of other things, it probably wont do any good begging her not to do it, she needs to see a councillor, i never got that chance
You mention a 3 month waiting list for fibromyalgia patients here to see a rheumatologist here. Frankly as a Canadian, I’m envious. In my city, with 10 practicing rheumatologists (outside of hospital only or children only specialists) and over a million people, the wait time for someone with a non-degenerative condition such as fibromyalgia to see a rheumatologist is actually often well over 2 years. And there is one visit to confirm the condition, however, no follow-up with a rheumatologist. In this lack of follow-up we are perhaps lucky though. The rheumatologist confirmed my condition, said that it’s a condition where the cause is still not known and there’s not really anything out there to treat it. She did make sure I didn’t have any other conditions that would fall under rheumatology, for which I’m grateful for and my respect for this woman was drastically increased by the fact that when I mentioned Lyrica, her response was that she didn’t believe in prescribing medications that doubled the patient’s risk of suicide. The only medication I take for my fibromyalgia is cyclobenzaprine and for the most part the name of the rest of it is just a game of “suck it up princess” where only on my worst days do I give in and stay in bed.
I so agree with you. I was diagnosed with Fibro in 1995 by a Rheumatologist who promptly started me of various pain meds, he said he had 6 to offer but he did them 2 at a time and I slept for 22 hours a day. That’s not a life. After the second trial and another week of sleeping 22 hours out of 24, I went back in and said talk all your pain meds yourself, this is not living. Incidentally, he could offer no answer to my questions: what causes it, what is happening exactly, what aggravates the condition, how do I feel better? He did say exercise would aggravate the condition. Not exactly accurate because mild exercise like walking HELPS Fibromyalgia. I then went to an endocrinologist at UCLA Medical Center who, like you, has been focusing on Fibro for many years because he has it himself. It made all the difference in the world. I got out of the wheelchair I’d been in for 8 months and back to my life very gradually. I never take more than the occasional Tylenol + Ibuprofen for real pain, rest more than most people, and eat extremely healthy food without chemicals added or salt. I babysit my great grands occasionally and enjoy my life.
I do love the way you have presented this particular matter and it does supply me personally a lot of fodder for consideration. Nonetheless, coming from everything that I have personally seen, I basically hope as the comments pile on that people remain on issue and not embark upon a soap box involving some other news du jour. Still, thank you for this outstanding piece and whilst I can not necessarily concur with the idea in totality, I regard the point of view.
I have been dealing with fibro for 18 years now im on pain meds oxycodone and they dont seem to help me anymore to get threw my day..that was the only way I could get out of bed was on many different meds but am only takin these for the fibro now on top of blood pressure meds and celexa for depresson..I would love more than anything to get off these meds so I can have my life back..I cant make it to work anymore im loosin my house and im unable to pay my bills bein a single mom..id like to know if it is expensive to go threw your program..and how long would you have to stay on the supplements you are incourging people to take while on ur plan..I just dont know if I can afford to start this program just to be let down again because of money issues and no insurance company will pay for the vitamins that we need to get ourselves heathly again and to pay for this program..im not sure this was the site to ask questions about this but if you could give me some advice on the price of this treatment it would be greatly appreciated..thank you..
Jody,
Unfortunately, insurance, Medicare, and Medicaid won’t pay for the consults, tests, and supplements I recommend. The program does involve out of pocket expenses. We do help anyone we can afford any recommendation we make when working with those patients I accept. I suggest reading the book, ask for it at your library or get them to order. Then using the book start to add the recommended supplements, minding your finances, take what helps and what you can afford for now.
Great article! I wanted to share something I learned about Lyrica many years ago. A few years after coming down with Fibro and CFS, my physician tried putting me on the Lyrica patch. It did help with the pain, but, I swelled severely from my feet close to my knees. It looked like Elephantitis. My physician took me off the Lyrica patch right away