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ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Mailing address:
GPO Box 383,
Adelaide,
South Australia 5001

Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')

Office Hours:
Wednesdays, 10am-3pm

Support Line:
(Mondays and Thursdays,
10am-3pm)
Ph: (08) 8346 3237

SA country callers:
Ph: 1300 128 339
(local call)

FIBROMYALGIA HELP:
Contact
Fibromyalgia SA
at the
Arthritis Foundation of SA
118 Richmond Road,
Marleston 5033
Ph: (08) 8379 5711

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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Information and Support 2004 is an online appeal that aims to improve our Information and Support Line.

Pain Meds for Fibromyalgia: Poll Results

Wednesday 12 August 2009

Drugs Adrienne Dellwo conducted an informal poll on what types of pain medications were used by people with Fibromyalgia.

Here's what Adrienne found:

In a recent poll, I asked what pain meds work for you. The results are interesting, to say the least!

I asked the question in response to a survey that said many of us with fibromyalgia are taking drugs that whose effectiveness is "not supported by evidence."

According to research and online resources for doctors, tricyclic antidepressants are best supported by evidence, followed by SSRIs and SNRIs, with muscle relaxers, NSAIDs (anti-inflammatories) and narcotics (Vicodin, Percocet) shown to be less effective or ineffective.

My poll, however, seems to flip that right on its head! While it's not scientific, the results were pretty much the opposite of what research has shown. As of now, the results are:

* Narcotics - 32%
* Muscle relaxers - 20%
* NSAIDs - 14%
* SSRI/SNRIs - 11%
* Tricyclics - 8%

This reinforces my belief that studies about what works for us are skewed, both by the lack of properly identified subgroups and because those of us with other conditions are excluded. Why would that matter?

The biggest reason, I believe, is the source of pain. Fibromyalgia pain doesn't come from a single source -- it includes amplification of pain that's there from other sources, along with special types of pain that appear to be caused by the condition itself.

Many of us have secondary fibromyalgia -- fibromyalgia that developed because of other pain conditions, which (according to research) have sensitized our nervous systems and caused structural and chemical changes in our brain. We're the ones who started out with rheumatoid arthritis, lupus, or (like me) chronic myofascial pain. Because we have another pain condition, we don't qualify for studies.

For me, and I suspect for many other secondaries, narcotics, NSAIDs and muscle relaxers take away the pain from the primary condition, giving fibromyalgia less to amplify. That results in a major pain reduction that people with primary fibromyalgia may not experience.

I also think researchers need to be identifying subgroups, as many chronic fatigue syndrome researchers are doing. We've got primary, secondary, juvenile, post-traumatic, and post-viral fibromyalgia that all could respond differently to the same treatments. Our symptoms and severities are all over the map, so once you get into genomics, there's no telling how many subgroups we could have.

The moral of this story is: don't let anyone, doctor or not, tell you what pain medications will or won't work for you -- the only true indicator of effectiveness is your own experience.

This is always a contentious topic, so keep those comments coming and let me know what you think!

The article originally appeared here.

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