11:24am September 28, 2014

Reblog if you think that Fibromyalgia is real

squidsqueen:

wastelandmae:

thisisableism:

loki-zen:

spoonie-mj:

the-jacobguy:

spoonie-mj:

A lot of people have told me that Fibromyalgia isn’t real. I’ve been told that I imagine the pain and exhaustion and that I do it for attention. I’ve also been told that it’s not a disability.

I want people to know that is IS a real medical condition and disability and that we are NOT lying and we are NOT imagining it. Fibromyalgia is real, it exists and we are living proof. It’s time to change how medical professionals see Fibromyalgia and acknowledge that is is real!

What medical “professionals” are telling you its not real? That’s a recognized medical condition! They must be some sort of quack

As a Fibromyalgia sufferer, I have been told to my face by numerous doctors that Fibro is not real, that it is not a recognised medical condition, and that I’m a liar.

Judging by the amount of notes and replies this post has gotten, I can safely assume that the majority of people who have reblogged this post have been told that their Fibromyalgia is not real and have been told that it’s “all in their heads”

Fibromyalgia is treated as a mental illness. It’s not. It’s a physical illness. Most of us are given antidepressants or told to exercise as medication! Doctors know shit all about the condition and many refuse to officially diagnose people! I went nearly two years without a diagnosis because my doctor refused to believe in Fibro.

In the UK, it’s not recognised as a disability either.

Source:

NYTimes - Fibromyalgia, in depth report - see “Causes”, paragraph 2

I do believe that Fibromyalgia is real, as I don’t see why an entire community of people and some medical professionals would lie about their conditions.

However; I don’t believe it is helpful to conflate mental illness with ‘not real’. I don’t know if this is the intent here, but that’s certainly how it comes across!

If it turned out that Fibromyalgia was caused by something in your brain rather than the rest of your body, or if it turned out that antidepressants were an effective treatment, that wouldn’t make it any less ‘real’ or make it not a disability.

I don’t see where this post conflated mental illness with not real though.

The op stated that doctors don’t believe fibro is real, and then another person added that as a result of doctors not believing fibro is real, it’s treated as an illness it’s not.

Fibromyalgia patients are frequently prescribed antidepressants for their fibro, and this is problematic not because mental illness (specifically depression in this case) isn’t real, but because antidepressants aren’t effective for treating fibromyalgia.

The issue is that a lot of doctors are treating fibromyalgia like it’s one type of illness when it’s actually a different type of illness. This results in fibromyalgia patients receiving subpar care and being left in excruciating pain.

If a doctor used a heart disease medication to treat arthritis, the patient is not going to experience any relief. That doesn’t mean heart disease isn’t real, just that if you use the incorrect treatment the patient is going to be left frustrated and in pain.

I can believe that doctors treat fibro patients like this due to stigma surrounding both fibromyalgia and mental illness, but I don’t see how fibromyalgia patients describing the inadequate care we receive is invalidating the reality of mental illness.

Yes, exactly this. I have fibro, depression, anxiety and am autistic and while they all affect each other in various ways (being in pain makes my mood lower, being anxious makes it hard to eat properly which makes my physical health worse, trying to act as NT as possible in various situations where it would be dangerous not to is exhausting and probably why my fibro is so bad in hte first place…) they are not the same things and treating one with methods applicable to the other is at best useless and at worst dangerous. (Indeed, treating one with methods applicable to ITSELF can be risky because for instance I was on Efexor for a year which made my fibro ten times worse).

It would be useless to say to a depressed person “ah, you’re feeling bad, here, have some aspirin!” (Well, unless they came to you about a headache, obviously.) It’s equally useless to say to a not-depressed person with fibro “here, have some anti-depressants which have absolutely no history of being used as a treatment for pain and/or exhaustion and/or other symptoms of fibro!” (Side note: amitriptyline *does* have some use as a form of pain relief and can be worth trying, because drugs are weird and sometimes are useful for other things than they are supposed to be, e.g. it’s meant to be good for migraines, too.)

I think it’s important to note that while Fibromyalgia IS real and people DO have it, it’s also really often slapped on as a throwaway diagnosis when a doctor has given up on trying to solve a medical mystery. Please learn everything you can about anything you are diagnosed with, and keep seeking more opinions if the diagnosis doesn’t seem right to you. When I was first diagnosed with Fibromyalgia, the doctor was a condescending ass, and completely neglected to do any kind of physical exam or even listen to my full list of symptoms. It turns out I have a genetic condition that he overlooked, because he refused to consider anything else.

This. I didn’t want to go off on a probably ranty tangent before, but this is very important.

Sometimes it is used as a bin for “you are reporting pain and fatigue, with no obvious knives sticking out of you or anything”. I got diagnosed with it, with no testing or anything, because my mother had already (probably wrongly) been diagnosed by the same doctor. One who subscribed to the antidepressants school of treatment, so yeah. I never got anything from several different doctors but the antidepressants + getting told to exercise more + “maybe you should see a psychologist”.

The symptoms were mostly coming from something totally different, genetic, and actually life-threatening. My mom and I did indeed have a lot of identical symptoms…which are consistent with complications of celiac. (I couldn’t persuade her to go for testing after mine finally got confirmed at around 30. A couple of other relatives with the “family curse” symptoms still haven’t.) We’re talking about things like textbook B12 deficiency symptoms, with no testing ever done because they were convinced it was something else “inexplicable”. Her pain from bone cancer got attributed to fibro too, and treated with antidepressants for years. That wasn’t caught until it was way too late.

Again, this isn’t to suggest that fibro somehow isn’t a real thing. But I think that too often people (especially women) with other conditions get automatically diagnosed with fibro without enough investigation into other possibilities. Partly because the condition is so often not taken seriously, and neither are the symptoms that get chucked into that bin. Another situation where people who really have other things going on do not receive the correct treatment, and it’s just not good. Further complicated by basically all of the discussion above. Very few people seem to get appropriate treatment, and go through a lot of unnecessary pain and suffering—even if fibromyalgia is actually the right diagnosis. :-|

I believe it’s real. I don’t know if it’s what people think it is now (a single condition, etc.) but I do think it’s something real, and physical. Two of my grandparents had it. I don’t have it. I remember when I was still misdiagnosed with chronic fatigue syndrome (real dx: secondary adrenal insufficiency and myasthenia gravis, as far as we know, possibly mitochondrial disease) I was envious of people with fibromyalgia diagnoses because it seemed more like a “real” diagnosis than CFS did. Like it seemed more definite and less nebulous. It always felt like on CFS/fibro communities, the people with fibro had the more ‘taken seriously’ vibe to them. But maybe I was wrong. Of course I didn’t turn out to have CFS either, but I think CFS is definitely more than one condition that have all been lumped together under a set of symptoms. Fibro seems a little more clear-cut but not that clear-cut.

Notes: