I'm too tired to scream right now

[brightrosefox]

http://www.nytimes.com/2008/01/14/health/14pain.html?_r=1&ref=us&oref=slogin
I have nothing to say to this, except to correct one thing: Fibromyalgia is NOT A DISEASE. Got that dead wrong from the beginning.
Also, all those doctors who insist that the condition isn't real can have a nice long look at my upraised middle finger.

That is all.

Come say it's not real to our faces. Yes, all of us.

And I echo this statement by that entry writer:

I don't know about you guys, but my diagnosis, apart from the treatment, did help my pain levels. Because my pain is closely linked with my mood, knowing what's going on and why, and being able to predict when and why I'm likely to flare, has helped me enormously.

Understanding what's going on--being able to "catalog" my pain--has lowered my overall pain levels! So my experience is completely the opposite of that statement.

Comments

[libwitch.livejournal.com]

actually, the medical community might have a specific way they use the word disease (probably to refer to something that can be transmitted); but in terms of the definition of the word 'disease' (disorder, ailment, or condition of being out of health, Absence of ease; uneasiness, discomfort; inconvenience, annoyance; disquiet, disturbance; trouble.) - well, it would fit. Thats broad enough to fit whenever anyone complains of any condition that leads to anyone not feeling well.

And, as the article is equally quick to point out there are many, many large bodies and reputable voices that are saying it is a disease - and hence, why the medicine was approved - and the ones saying its not are loners. Its just very very sad that they are still out there.

Then again, I still hear people saying that the problem with people with depression is that they just need to learn to "buck up." Including a friend of mine whos roommate was just diagnosed. Clearly, her roommate doesn't have depression - if she did, SHE would have known about it first, not some doctor!

Yeah.

[brightrosefox.livejournal.com]

That is true. But there will always be debate and controversy over exactly what it means to be a "disease" over a "syndrome." You could use "disorder" the same way as that description.

It is very sad that the skeptics are out there like that, I agree.

question

[beedjay.livejournal.com]

so, i've been reading your last few posts about fibromyalgia and i know a few people with it, including my mom...but i "hear" you talk about it and it makes me want to ask you "how does it feel?" i have heard "pain" and "hurts all over" and i think it is an arthritic condition, isn't it? so it's similiar to arthritis? -luckily i don't know how that feels either. can you describe it? like, i know pain can be dull, throbbing, sharp, achey, burning etc. and i have also heard that while nothing really cures fibro. there are things that "help" it hurt less. and you are exhausted from the pain, right? or is that the "CFS" which fibro often goes hand in hand with?

can you possibly simplify and sort it out for me because i really want to understand.

also, just to share: my mom swears by a strong pot of ginger tea(i tried it, it's more like syrop and when i say strong i mean...like buckleys mixture strong) she says it is the only reason she can still go to work every day. oh, and 1 and half hour of yoga each morn above and beyond her work-outs in the evenings and all those naps she needs.

bj

Re: question

[brightrosefox.livejournal.com]

Thanks, this is a great question. :)

You said, "pain can be dull, throbbing, sharp, achey, burning etc." My answer is yes, and more. Add, "twisting, stabbing, needling, pinpricking, sore, electric, etc."

But you want details, and I will do my best to try and give you details.

Imagine an electrical current. It can transform into a tidal wave, or a forest fire, or an earthquake, or a tornado. Sometimes it can be a wild animal. But at its heart, it is a current of energy, moving and alive and feeding. It's moving through your body constantly, never stopping, never resting. It's not normal, it's not part of your body's usual routine. It is an exaggerated response to external and internal stimuli, and if something irritates it, it lashes out, like a frightened animal. On most days -- "good" days -- it is very quiet and almost calm. You can feel it, but it doesn't really bother you. On "bad" days, it can turn into one of those raging elements, it can be a beast with teeth and claws and screaming. It attacks you because there's nowhere else to run, nothing else to attack. It might focus on different parts of your body at different times. It's blind and deaf and it won't respond to usual treatments. You have to truly strike at its core to quiet it down.

Fibro is thought to be related to arthritis, but it's not entirely an arthritic condition -- that's what is so mystifying. No one is really certain of the what, the why, the where, the how. It's a condition borne of elimination -- when it can't be anything else.
CFS can go hand in hand with fibro (or FMS), but the chronic fatigue is often a part of fibro itself, completely separate from CFS. People who have CFS usually have such severe fatigue that they can't even get out of bed most days. A lot of people with fibromyalgia have fatigue that can be brutal, but quite as specifically brutal as CFS.

Ginger is a very, very powerful anti-inflammatory, so it doesn't surprise me that it works for your mom. It works for a lot of people. The funny thing about fibro is that sometimes we'll feel like we've got inflammation where there is no actual evidence of inflammation (which is very frustrating!) and yet anti-inflammatories like ginger seem to really help!

I hope this answers your questions somewhat. :)

Re: question

[suzthefrog.livejournal.com]

There may be no "primary inflammation", but there is definitely some "secondary inflammation" over time because of these constant stiff unrested muscles. Going through normal busy days with fibro is often like starting a football season without a warm up!

The rich companies (reference to the sad but true conclusion of the article) must fund a LOT of the fibro research and make it all about trying their pre-existing meds on fibro sufferers... I am waiting for researchers to study how fibro "operates" and what is happening in our body on an endocrine, immune, neurological, etc. level. Only then can we hope for a proper description and recognition that goes beyond "vague pain complaints from depressed hypocondriacs".

Re: question

[brightrosefox.livejournal.com]

Really? I honestly wasn't aware of secondary inflammation, but it makes total sense. For me, add to it my cerebral palsy -- I guess anti-inflammatories truly would be my first line of defense.

As much as I want to frown on the rich companies, I see the beneficial points. Because none of us ever want to be "depressed hypochondriacs with complains of vague pain."

[libwitch.livejournal.com]

I think having a diagnosis is always key - I have seen this over and over again with friends with things such as schizophrenia (12 years to get a diagnosis) and RDS (another syndrome with some drs think is not real - it took her 5 years to get it diagnosed) - and the friend with RDS? her hubby has fibro too.... and all of them, despite not being "cured," despite still struggling to find treatment that works for them - all started seeing gains, physically, mentally, and emotionally when they got a diagnosis. Part is knowing what to look for and what to treat for.

Part is finally having someone else - someone who can help you - tell you what you have known all along. Yes, there is something wrong with you. Its not just you.

[brightrosefox.livejournal.com]

Yes. Some say that there is a danger of "collecting diagnoses" but I think that without the diagnosis, we are left floundering, worrying, often panicking -- and the doctor saying, "You have this" can have a calming, centering effect.

[shehasathree]

no one can even make up their minds if i actually do have fibro (and i admit that if i do have it, it's a relatively mild case, and it's complex to unravel what specific symptom is caused by which specific condition - since i have Crohn's Disease that often results in system effects such as joint pain and so forth, and i also have fructose malabsorption that behaves a lot like IBS), BUT rarrrrgh, this article made me so cross!!

i think everyone would agree that it's incredibly difficult to monitor (and perhaps manage) one's pain and activity levels without paying attention to them. anyway, sorry for ranting, i know i'm preaching to the choir here.

[brightrosefox.livejournal.com]

I know several people like that -- it really is incredible. And feel free to rant to me any time!