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 Tuesday of the Month Fibromyalgia Teleconference
recordings here:
My fibro
blog- Traditional Medicine Fails Fibromyalgia
I have never tried Enbrenil, but my Rheumatologist put me on Plaquenil. That stuff IS scary. I started getting vision problems with a month of use. Scotomas, ocular migraines...not to mention weight gain and stomach pain. The Rheumatologist told me that it wasn't due to the medicine. Really? They do want to keep pushing drugs and I am so tired of it. More medicines mean more side effects! I just want my life back!
ReplyDeleteI was dx'd with Fibromyalgia in 2008. Last week I was dx'd with Psoriasis and this week with Psoriatic Arthritis. When I asked this new rheumatologist if maybe I had been wrongly dx'd with Fibro she said "No, you clearly have both.".
ReplyDeleteSo now what should I do? She is running tests before starting me on Methotrexate. And although I know the risks of these drugs I've had very little life in the last 5 years. I want some quality of life back.
I mean I am a 7+ year breast cancer survivor.....I deserve to have a life worth living.
Just keep looking for the right doctor. I found mine ... she's a GP but is well versed in Fibro and keeps up with all the newest findings. She also sent me to a Pain Management Clinic .. just to see if they would do anything differently that she was .. Nope, they said they would be willing to take me on but since I had a good relationship with my Primary doctor that there would be no benifit to my changing doctors. She sees me every three months. I do use some narcotics but only as prescribed and haven't had a dosage increase in over 5 years. I manage my flares with other things like muscle relaxers or Lyrica ... but honestly.. I have had the best five years of my adult life. I am able to hold down an 18 hr a week job and while I still have some bad days ... I no longer lay in the bed and pray for death. The right doctor is out there .. just keep looking .. don't give up .. don't compromise ... and be your own best advocate. You know what works for you and what doesn't. You know the risks you are willing to take and what you aren't. Don't let a doctor bully you into something you are uncomforable with. Find a doctor you feel REALLY gets it.. find one that gets YOU... it took me nearly 8 years but I wouldn't change doctors now for anything. Good Luck out there... there IS help and hope.
ReplyDeleteHelp! I had a bout of Stevens-Johnson Syndrome in 1996, and the issues started. After 2 months they told me what it was, then 2 months later they told me they thought I would live through it, then the pain started. It went from one spot to another with no let up. I was left with a partially paralyzed voice box, and very bad skin that still sloughs off. After 5 years they said I had Fibromyalgia, Reynauds phenomenon and Osteo-arthritis. Last year my dermatologist told me I now have Psoriasis. They think the S-J was caused by Ibuprofen, which leaves me very little help. I try to keep going, but now for no reason my weight has started going up enough that I can really notice it, and I am very heavy already. I will not give up, but it is very hard to stay positive a lot of the time. I need something that will at least ease my constant discomfort.
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