None of the “cool” doctors want to treat fibromyalgia.
Posted: March 21, 2014 Filed under: activism, disability, fibromyalgia | Tags: chronic illness, chronic pain, fibromyalgia, spoonie 7 CommentsFibromyalgia just ain’t cool. And there’s statistical research to back it up.
Respondents [senior doctors, GPs and final year med students] were asked to rank 38 diseases as well as 23 specialties on a scale of one to nine. …Myocardial infarction, leukaemia, spleen rupture, brain tumour, and testicular cancer were given the highest scores by all three groups. Prestige scores for fibromyalgia, anxiety neurosis, hepatic cirrhosis, depressive neurosis, schizophrenia, and anorexia were at the other end of the range.
It doesn’t show it very accurately in that quote, but the most “prestigious” disease to treat came up as MI, and the least was fibromyalgia. Colour me unsurprised. Two of the “popular” diseases occur mainly in men (especially as one of them involves have a specific set of genitals). Two of the least “popular” diseases occur mainly in women. All of the “popular” ones are dramatic conditions, which either involve slicing someone open and tinkering with a specific body part or a thin line between life and death. The unpopular ones are mostly mental health, except for fibromyalgia (which a lot of doctors would say is in your head anyway) and heptic cirrhosis (found in alcoholics, so I imagine there’s a large “you brought this on yourself” element.)
To some extent, I see where they’re coming from. In the life of a doctor, the ER moments where a patient has blood spurting from many orifices and they’re on the verge of death are no doubt seen as very exciting. Similarly, getting to do brain surgery would earn you a lot of kudos. But I think there are some other themes that can be drawn out of this:
- You have to be able to see the condition, either physically or through a scan of some kind.
- There has to be a medicine or procedure available to fix said condition
- Mental health conditions are boring to treat
- Especially women’s mental health
- Especially women’s health issues where there isn’t a clear way to diagnose
Fibromyalgia doesn’t have a test to diagnose it, you can’t give drugs to cure it. It’s found mostly in women and you can’t physically see it. It doesn’t cause life-or-death blood spurting moments (I hope…) and so it’s a boring disease. So doctors aren’t willing to put in the effort to research it. It’s much easier to say “here’s a pill, it might help, go swimming and cut out the gluten” and send them on their merry way. While possibly thinking “she’s just hysterical, it’s probably all in her head.”
It is obvious that no-one is going to make a fuss about this condition, because so very few medical professionals actually care about researching what it is that makes us so chronically ill. So, as I’ve said before, that is why it is up to us, the chronically ill, to become the professionals. From our beds and sofas, in our pyjamas with our heat pads and blankets. And possibly stoned out of our gourds on heavy pain medication.
“I have this belief that if I can read a lot of science and do a lot of self-experimentation then I can turn this thing around.”
– Jen Brea, Canary In A Coalmine trailer
From now until the end of April, I’m going to spend as much time as I can manage researching. I’m going to read about what the latest research on fibromyalgia is telling us. I’m going to teach myself the arguments from the pro-psychosomatic camp and the pro-medical camp. I’m going to learn about what people think fibromylagia is, what treatments have been tested and what’s worked. Because no-one else is going to be interested in becoming an expert on my condition. So I’m going to become one myself.
So, this blog is going to come pretty fibromyalgia/chronic illness focussed for a while. There probably won’t be many youth work posts for a bit, but they will come back eventually. I just feel like I need to know what’s going on with my own body.
EmsyBlog 
Reblogged this on Ramblings of a 50+ Female.
Brilliant, good luck with the research would be really interested in your finding .
Reblogged this on Hazel's 'Ordinary World'.
Reblogged this on Ramblings of a Fibro Fogged Mind and commented:
Great blog about Fibro… EmsyBlog… Dxxx
I’m pleased you are going to concentrate on FBS, we need more to share. However, I was a bit confused that you say there are no tests that can diagnose but that’s not quite the case. I was referred to a rheumatologist and, although there is not one specific test that can be done (although the pressure point test in itself is revealing) he did several tests including referral to neuropathist, neurologist and an X-ray, tear duct test, cuticle test and, of course, the peri-articular pressure point test, I didn’t have a clue what he was doing at that point. He was very fast & proficient so I could have no opportunity to influence the outcome not least because he had no time for small talk, he just got on with it. It was the most thorough examination I’d ever had. At the end of my diagnosis he discharged me because there was no treatment other than meds which have beneficial effects on neuropathic pain. So, for me, Amitryptline & Gabapentin (along with my other painkillers) have had the best results – but still I suffer from pain & draining fatigue.
So, yes, you’re right, FBS is an “uncool” condition to treat but I do understand that, as there is no cure it’s not a rewarding illness to concentrate on not least as there seems to be different reasons for it developing. I know mine came virally, and almost certainly exacerbated by a very stressful job, but that doesn’t help with a ‘cure’ and, in truth, I don’t think there ever will be but I’ll be reading you blog with interest, I’m glad I found it. Good luck with your research Emsy.
While there are tests (like the pressure point test) that can indicate that it’s very likely to be fibromyalgia, it’s a diagnosis of elimination. There isn’t one thing (like a blood test or scan) you can do to say “yes, that’s what it is”. You have everything else (lupus, MS etc. etc.) eliminated and if you also have the signs of fibromyalgia (such as the pressure point test) then a rheumatologist can say that you have it but there’s no definite “your test results say you have fibromyalgia” answer.
Been here, done this. The most interesting work so far is on brain injury, at least from my perspective. I am less interested in the viral angle except as a possible cause of brain injury. The one thing people with fibro have in common, whether they remember the trigger or not, is something traumatic occurring in their life…car accident, illness, severe stress…all of which impact the brain.
I have long thought this is a CNS disease…the symptoms. at least to me, clearly lead back to the CNS. Even the other “weird” things we experience…like feeling our food digesting, for example), is CNS with a nervous breakdown (sorry for the pun, but if we don’t laugh, we are in big trouble). Everyone I talk to with this disorder has sensual (touch, smell, etc.) symptoms.
I contracted fibro at age 11 when I nearly drowned. (I am 63 so it was diagnosed as “growing pains” and “trying to get out of chores”). It was pretty bad but I was still able to meet life goals, raise kids, work, although I always used up my sick time, plus some. It was very hard and I have rarely been free from pain, so I suppose I developed a tolerance to it.
In 2001 I contracted bacterial meningitis and encephalitis and became severely disabled. A door slammed shut. In retrospect, it was coming as I was getting worse…more pain, more fatigue.
I now have the worst fibro any specialist who has seen me…and I have run the mill…has ever seen. The pain is astonishing. I am on narcotics, tried the whole gamut of Gabepetine, Elavil, blah-blah with no positive outcomes. Cymbalta was hands down the worst. I stretch as much as I can find the energy to do so and am otherwise exercise intolerant. My husband is my care giver, bless him, and together we have also been througn the emotional gamut, including bankruptcy in our 50s. I also have Sjogren’s, Interstitial Cystitis (goes with both disorders) and a variety of other disorders. Sjogren’s is the only one for which there is a test (tear test followed by lip biopsy). It is the second most common form of arthritis but most medical professionals outside of rheumatologists do not know what it is. For a long time I carried a list of web sites with me for ER visits. Nurses checked them out…no drs as far as I know.
Anyway, I thought you might be interested in the brain studies. I will add, that if a physician makes anything resembling a psychiatric comment about fibro, I walk. I am lucky as I now have wonderful doctors who keep up on the research, are grateful if I find something new, and are very compassionate. It has taken decades to get there and certainly many doctors over the past 13 years. Oddly enough, all of them believe this is a CNS disorder as yet to be fully understood and are VERY sensitive to the gender issues involved. And, bless ’em, except for my primary care physician, they are male. All but one is close to young enough to be my son, but that, to me, is very hopeful in spite of what medical school teaches them.
Sorry about the self tangent.