Saturday, February 16, 2008

Fibromyalgia and the variability of its sufferers

From my Livejournal friend Liz (ma_petite7263):

Something got me started thinking about pain and illness and how individuals deal with it in their own lives.

Some people are able to move past it, live with the pain and not let it affect them at all. It doesn't change their lives. They don't have to give up anything or struggle.

Some people have to make small changes.

Some people have to make big changes.

Some people are completely disabled by it.

Regardless of where any of us lie on the continuum, none of us should be treated as if we all fall in the first category. We'd all like to be there, but a lot of us aren't, and we should be made to feel like lesser beings just because we have to make adjustments.

I think this goes hand-in-hand with the concept of invisible disabilities. Because we have no outward signs of being ill, others automatically assume we're making it up. Then they lump us together and say that "So-and-so does just fine with illness X" or "Whosmadoodle bathes in the blood of infant platypi and now they're doing great!" as if we're all the same person, with the same illness, with the same symptoms, with the same abilities and pain thresholds and mental states.

What people don't seem to understand is that we're all different. A lot of us with chronic illnesses also suffer from mental illness, primarily depression. You'd be depressed, too, if you woke up in pain everyday or felt like your body was just giving out on you. You'd be depressed, too, if you knew there was no cure, and the things you can do to alleviate symptoms don't work for everyone. You may be one of the unlucky few that is on an eternal fruitless search for relief.

I know there are people out there who have more debilitating diseases like MS and lupus, or spina bifida, or had to have a tumor removed from their brain. More power to them if they've been able to take it in stride and not let it affect them. But just because they can do it doesn't mean we all can.

The ones who seem to hold this belief the firmest are those who haven't been afflicted. The perfectly healthy can blather on as much as they'd like but it comes down to the fact that they have no clue what they're saying.

Liz captured something that's been rattling around in my subconscious very eloquently. Many of us who are chronically ill are beset by people who "know someone who got better after they did x", and we get treated like recalcitrant children for stubbornly refusing to magically get better just because our problems are inconvenient for others.

I know that it's probably frustrating to view a fibromyalgia sufferer from the outside. Here's this person who looks okay, and they can't be plugged into a machine that will give a precise measure of illness, yet they are always saying they are in pain, and that they are tired. To some, it might appear to be an excuse to slack off, to be lazy.

Let me tell you something: Nothing could be further from the truth. I would love nothing more than to be working sixty hour weeks, keeping my house really clean, and being able to have a normal social life. Why am I not getting better? Because medical science hasn't found a cure for this. No one knows how to fix it--and we're just barely learning how to manage the symptoms decently. Some people are lucky and found a simple solution, but the rest of us are waiting for science to catch up with our suffering. We've only recently even been able to find medical professionals to take us seriously enough to give us decent quality of life; many of Dr. Kevorkian's clients were fibromyalgia sufferers.

So, look, maybe it's not convenient for you to have a friend or family member with this condition, but something that pushes many of its sufferers to commit suicide rather than continue a life of relentless pain and fatigue? Not something we chose, wanted, or enjoy. If you think it's so awful to deal with us, just be glad you aren't one of us instead.


Kira said...

Rio, I'm so sorry that you and others are having to deal with this. May I say that I really respect your ability to hold your head high and share such beautiful insights, despite the pain and the discrimination, disease- and fat-related. I love reading your blog because your perspective and your attitude is inspiring - thanks for sharing!

Ash said...

In some ways I wish people could see me the number of times I've broken down in tears because of the inescapable pain on my "bad knee." The bad knee that cripples me when I try to do a normal amount of work as healthy people, or that gives me little shooting pains as if taunting me "hey, I could give out at any time!"

But because there's no obvious cause that can show up in a test or on an x-ray, I must be just making it up so I can be lazy and slack off. Nevermind that at my last job I pushed myself so hard to try and impress them that hey, I'm not a lazy slacker, it didn't matter. When I pushed myself past my limits and needed a break, tough, too bad, I should just load myself up on pills.

My body is slowly breaking down, and that is one hell of a depressing realization. Depression, joint pain, occasionally having my knees collapse, constantly feeling too hot and too fatigued but having to keep pushing myself to my limits so I can live and eat and have a roof over my head. I know it's not as bad as other people have it, but it's still hard.

I am doing better now, even with the same problems, but that's because I am now keeping a well-stocked larder of pain and sleeping pills that weren't available to me in England.

Anonymous said...

It's the same for Hyperacusis. Except that most people seem to expect Hyperacusis sufferers to try and make their disability more convenient to others. I think this is what you were getting at about Fibromyalgia too.

I'm tired of people telling me I should wear ear plugs everywhere, because nobody seems to want to control their loud kids anymore.

Anonymous said...

I do not suffer fibromyalgia, but my mother does.
I feel that I'm lucky in the sense that I was a psych student for almost 4 years, and FM is spoken of, for obvious reasons, in many of our psych classes, so I was already familiar with it and what it can do.
I hate that my mother goes through this- It doesn't frustrate me because I think she is lying- it frustrates me because I miss my mother. I've ALWAYS been overly empathetic- to the point where I can sometimes physically feel another's pain- and it hurts to see my mother this way, and angers me that people don't belive her. She even lost her job over it. Thankfully they let her retire instead of firing her.

I certainly understand the effects of FM- and I am praying that doctors can find something.

I, of course, have you ladies in my prayers as well!

Thank you for writing a beautiful entry about it.

Hekateris said...

Wow. I don't have fibromyalgia, but I am infertile, and every single one of those points applies to the infertile, too.

Funny old world, isn't it?

annaham said...

Awesome, awesome post (as usual)! I often think that if I had a superpower, it would be the ability to make the people who "don't believe" in fibromyalgia (or don't believe that I have it) feel the pain, if only for a minute. But I can't--I can only respond with confused silence, or a sarcastic remark (and if it's the latter, I've almost always been accused of being "too negative" or not having the right attitude).

I am so sick of people without any major health problems thinking that they know everything just because they read one article in Reader's Digest or whatever the fuck. My condition is not visible, therefore I must be making it up, or feeling sorry for myself, or weak.

Okay, I'm ranting. Anyway, this post was spot-on.

Anonymous said...

I just want to mention again it's the same thing for Hyperacusis. Nobody belives you have it. Even if you're polite about having a sensitivity to sudden loud sounds, they will act like you're just complaining or looking for attention.

I am sensitive about Fibromyalgia. However, I see there at least is some understanding given to it. There seems to be little if no understanding about Hyperacusis. You're supposed to just put on earplugs, grin and bear it.

I don't mean to act as if my invisible disability trumps Fibromyalgia. I just would like people to acknowledge it. As people with Fibromyalgia want people to acknowledge their invisible disability. Maybe it's just that mine is more of an inconvenince to others for them to acknowledge.

AnnieMcPhee said...

I suffered from chronic and debilitating pain for years - I was diagnosed with fibromyalgia, but that wasn't what it was. It was actually a very serious and deadly auto-immune calcium deficiency. (So I always encourage people to explore ALL possible physical options before deciding on fibromyalgia - I spent years in a wheelchair, then bedridden, then almost died because of the wrong diagnosis there.) However, once I had been in severe and constant pain for months, I finally realized what my cousin was talking about (she had severe back problems and surgeries, hip replacement, and constant pain.) The fact is, people get tired of hearing about it. They just do not know what it's like - they don't *mean* to be unsympathetic most of the time - but unless they've gone through it they literally can not comprehend it. They do not understand that you don't get a break from it. They don't know how many times you bite your tongue rather than complain. Even the people who live with you and push you in your wheelchair sometimes just sort of...forget that you can't do things once in a while. My own husband, who was the one who usually helped me bathe and get dressed, even had to feed me many times, when I'd say something would once in a while ask, "What's wrong? Why can't you...whatever it was." I was like...the same thing that's been wrong for 7 years and has only gotten worse? The fact that I'm crippled and dying? So I'm just saying we can hardly expect people who aren't even caring for us day to day to always have sympathy for things they just can't understand.

I did eventually get a proper diagnosis and treatment, but I'm still weaker than most people, I still suffer pretty badly from the ankle I screwed up in a car accident 22 years ago (can't wait to hear a doctor tell me to lose weight and it'll stop hurting - uh, guess what, it hurt just as much then as now, and I was thin) and I still can't do a lot of things a lot of people can do. I do have pain but it's mild enough that I can just sort of live with it, sucky as that is.

I did have a nurse yell at me once for being in a wheelchair - I didn't know the cause of my muscles being in horrific, pulsing, fevered knots (though had anyone bothered to actually do the proper test they would have known) - but she yelled at me, "SO you've just given up and instead of stretching and exercising, just sit in a wheelchair?" Bitch, I can't f*ing MOVE - what the hell are you talking about? It makes me even madder knowing that I was honestly dying. (Not to mention, I was there for a freaking asthma attack ffs, not for a free scolding from someone who didn't have a clue what she was talking about.)

Sigh. Great post - no, chronic pain is very real, it is debilitating, it hurts your heart and your soul and your spirit, it hurts your mind - and by God if you get cranky, irritable, or if you just want some freaking sympathy, you should damn well get it.

Shinobi said...

There is another thing that I think is difficult for people who suffer chronic illnesses like fibro or even visible illnesses like my mother who had a stroke and previously various injuries that were always very visible.

The loss of independence. I know that for my mom, being independent has been the thing that kept her fighting. She hates being dependent on others.

Wanting to be independent has pushed her to put up with probably more pain than I can imagine. Having gone through PT to learn to walk again 3 times now I really admire her spirit. I think her need to be independent really helps her as a driving force. She works really hard so that she can not have to rely on others to do what she wants. And she never complains.

I can't imagine how much harder it would be for people with no visible injuries to go through the same thing.

Ash said...

I just want to mention again it's the same thing for Hyperacusis. Nobody belives you have it. Even if you're polite about having a sensitivity to sudden loud sounds, they will act like you're just complaining or looking for attention.

I have hyperacusis as well, (and tinnitus, huzzuh!) but I don't talk about it because 1) no one else cares and 2) no one else wants to tone down all their freaking noise no matter how crazy it makes me from the constant penetrating sound. I am also prone to visual overstimulation in a similar way, and am hypersensitive physically (tickling, for example, is actually painful to me).

Things like this, and fibro, depression, chronic fatigue syndrome, and other "invisible illnesses" are just bothersome to people who don't have to deal with it. They don't care, it's not their problem, unless it's imposing on them in some way and they have to adjust so that the rest of us can simply just live, in which case it pisses them off that they have to suddenly acknowledge that not everyone is in perfect health.

Man, I am getting so jaded.

Anonymous said...

Ash, I guess I must be jaded too. Cause I completely agree with what you're saying. I just was looking for someone to finally acknowledge it other than me.

You may want to look into ZEM hearing protection. I heard it's great, cause it only blocks out certain sounds, not all of them like earplugs.

Anne Faulkner said...

Hi, Just came across this blog doing a search for fibromyalgia/hyperacusis - I recognize a name here from the hyperacusis net. She and I have just had some chats on the Province newspaper.

All of this about the story being about hyperacusis - and I've always thought of it as being a primary dx, "but" - just doing web searches today, and found this link from a Journal on MusculoSkeletal Medicne (?sp).
which mentions in App 2 that people diagnosed with fibromyalgia can have hyperacusis secondary to it. It is not a part of the diagnostic criteria because not _all_ people with fibromyalgia will get it.

I was originally diagnosed with fibromyalgia - now I'm starting to really check the dates - during the 1st Gulf War - 1991 - I remember because at the hospital where I was working - we had it on in the TV in the foyer. I was diagnosed by a Rheumatologist at that hospital - then I saw a specialist at another hospital - who, back in the day, just told me to live with it - and I had to - single parent, all that.

Then it went away.. I mean, in terms of muscle pain - certainly went in terms of collapsing hips and things like that. But that was right around the time I started developing "hyperacusis" - (I may have original dx of fibromyalgia wrong as to date, I have to check my reference letters - I'm sure it was 1st Gulf War) but, I am correct about the sequence.

When I going through a CHRCA comlaint, I was so messed up by the events that brought me to it, that my GP referred me to a psychiatrist, who knew of my history of fibromyalgia (it's in his notes, which I have) but never ruled out physical causes before he got into his psych diagnosis. In point of fact, without getting into detail, this shrink on RateMD, has a rating of "2" - he was "awful" - point being, when I went through the CHRCA process (which was failure to accommodate a disability, the CHRCA extrapolated information I sent them written by the shrink, and only used the psych diagnoses - which, on the face of it, were pretty pejorative. I asked the shrink to correct errata in my chart (like my birthday????) which he declined to do.

Because of recent events, I have fibromyagia back - muscle/joint pain-wise. Also recurrence of major depression.

Meanwhile, I have been getting little or no support (until recently from a few people) with respect to hyperacusis - which may have been secondary to fibromyalgia all along..

and I have all these psych labels..

and I'm not disputing that I have generalized anxiety disorder with agoraphobia.. When you have hyperacusis, it is no small wonder why you avoid places for a host of reasons - and depression? that's seems a pretty rational response to me - for fibromyalgia as well as hyperacusis.

I have all the symptoms of fibromyalgia, points active, cognitive probems, short-term memory - all the symptoms in tht article - What's news to me is that "hyperacusis" can also be secondary to FM.

so, I've been running around circles for 10 years? Labelled with psych diagnosis by a shrink who didn't bother to rule anything out and, in point of fact, treated the very idea of it possibly being a medical condition as an arrogant presumption.. and prescribed more meds (which I declined to take because that's all he was doing - was giving more meds with no real therapy - didn't listen to me at all - He had the facts (and I mean _facts_ of my CHRCA complaint wrong and when I asked him to correct the _facts_ he just smiled me. When I got my records through FOIA, he'd never corected a thing.

And he knew I had fibromyalgia.

Anyway, so where am I? right back at square one..

In point of fact, given the truly pejorative response that one gets to hyperacusis as a primary condition (talk about.. all the comments we all with FM have - well, it's not a P*sing contest but.. I'd rather have FM (at least some history) with hyperacusis as a possible secondary diagnosis, than hyperacusis as a primary condition.

I'm really angry with this shrink, that arrogant SOB - and all this was used by the CHRCA in bright bold letters in their dismissal of my complaint - his diagnoses - which I sent (silly me..) selectively extrapolated.

I don't know, sometimes it's just.. who are these people anyway?

All of this started because I wanted to "work" - the worst thing / stupidest thing, was get involved with federal programs because of my disability (self-employment).

I don't really understand any of this anymore..


coelilux said...

Hi friends
I suffered first from very severe hyperacusis and tinnitus and now ALSO from fibromyalgia/CFS plus TMJ, ulnar nerve neuropathy and several more "nice things". I can quote all of your posts and feel in the same degree of frustration when no matter how much I try to explain, how kindly and clearly I ask for some adjustments... noone understands, noone cares and it's me making excuses or being lazy or unwilling to live! Every once in a while, though, some wiser or suffering people acknowledge my strength, my pain endurance and my extended patience.
Moreover, I am also all alone, despite my relatively young age. Loneliness complicates and saddens everything