Dude. Wait.

[shadesong]

So I've been hearing about fibromyalgia lately, and I decided to look it up on WebMD just to see exactly what it is, anyway, and I got the following:

"Fibromyalgia is a condition characterized by aching and pain in muscles, tendons and joints all over the body, especially along the spine.

The pain of fibromyalgia usually seems worse when a person is trying to relax and is less noticeable during busy activities or exercise.

Other symptoms are often associated with the pain, including the following:

Sleep disturbance
Depression
Daytime tiredness
Headaches
Alternating diarrhea and constipation
Numbness and tingling in the hands and feet
Feelings of weakness
Memory difficulties
Dizziness"

Dude.

I have no problems with the poops, but other than that, I have every single one of these symptoms. Special attention to that second paragraph - the pain is at its worst when I relax...

yendi, you keep better track of my body than I do; are any of my chronic symptoms *not* covered by this?

Comments

[alfheimr.livejournal.com]

Dude... that sounds like... *goes to do research*

[metaphorge.livejournal.com]

Do bear in mind what your mindset does to your health... people that decide that they have fibromyalgia are the ones most likely to develop it....

[shadesong.livejournal.com]

Right, I haven't decided anything... it's just that this ties in things that I never thought could be related, like my constant exhaustion and my dizzy spells...

[fiddledragon]

But those can also be caused by physiological issues from things as seemingly innocuous as enlarged tonsils (as we just found out with ladysea). Sinuses and allergies can also give you constant exhaustion and dizzy spells...exhaustion because you don't sleep as well when you can't get enough oxygen at night, and dizzy spells from sinuses and enlarged glands (from fighitn goff whatever is reacting in your sinuses) can put pressure on the eustacian tubes causing dizziness.

[hobbitblue.livejournal.com]

".. people that decide that they have fibromyalgia are the ones most likely to develop it...."

"Decide"? What, they wake up one morning and think, Hey, I'll get ill, whoo, such fun! Or do you mean, its dangerous trying the self-diagnosis thing? If the latter I agree. On the other hand, fibro is a poorly understood condition which many doctors here in the UK don't even seem to be aware of, so we were most relieved when my partner forestwalker *finally* got a diagnosis of same that explained the pain and misery he'd been going through...
*reads back through comment* Hmm, not trying to flame you here, just wanting you to be aware of how what you said might come across to the casual reader :)

[metaphorge.livejournal.com]

I stand by my original statement, and I feel it does nothing to minimize the pain and suffering of those that are diagnosed with a condition.

What I am cautioning against is the ease with which 'symptoms' can be psychosomatically acquired if they fit a certain diagnostic schema. This often leads to the actual condition being psychosomatically simulated, and some would argue this extends all the way to actually being a cause for a condition (not necessarily something that I agree with).

The human "mind" is a very powerful thing, and it pretty much dies reign supreme, even over the "body" (for the sake of not muddying any water I will refrain from deconstructing how ridiculoud the body/mind dichotomy is)....

[hobbitblue.livejournal.com]

Hypochondria is a dangerous thing, and the mind and body are indeed closely linked, no arguments from me on that score! :)
I always worry about taking that concept a stage further however, recently I keep hearing the idea that people get cancer because they "deserve" to, or they "think themselves sick", so I'm getting very cautious about the whole "think yourself sick" idea, even though I work very hard at the opposite, thinking myself well :)
On the other hand, when the medical profession lets one down, the only way of trying to find an explanation for whatever strange illnesses and symptoms may be occuring is to do some research, find out about possible conditions and compare what is described with what is being experienced. Always with a strong mind to not being influenced by whatever the symptoms are and avoiding the psychosomatic risks.

[voltbang.livejournal.com]

The human "mind" is a very powerful thing, and it pretty much dies reign supreme, even over the "body"

Yes. An example. Hypnotize someone and have them visualize a hammer hitting their arm as you tap it with a pencil. A good subject will bruise. There are lots of examples of people who think they are injured going into shock. Your mind can screw your body up pretty good.

[fiddledragon]

I read "decide" as...you're not feeling well, go look up some stuff, and then decide that it must be x y or z condition because all the symptoms match up - *blush* similar to what I did with raynaud's, but it was pretty obvious, and knowing that I didn't want to predispose my doc to a diagnosis and worried about hypochondria (even though I had been demonstrably experiencing symptoms for years), I didn't mention any of my reading until *after* she had reviewed my case and my symptoms for herself, and then I asked questions to find out what she knew about stuff I'd read to find out her opinion - and more importantly went with her opinion rather than my reading.

But I do believe in the power of the mind to make you feel better or worse. I don't see how the power of the mind can cause things like cancer, which is caused by the coding in cells to go haywire and multiply without stopping...But...forcing my will upon my own body is something I've been doing for years and years and years - from stopping my period after it had been running amok for 8 weeks (this was the first time I'd ever told my body to do something and it did it - scary thought), to telling myself I'm not as sick as I thought I felt, etc...Sometimes it doesn't work so well because sometimes I don't want to spend the energy to tell myself to get well - sometimes I do just want to wallow in bed and do the comfort route. And it does take a bit of energy to tell yourself to do something.

ack...no...not another tangent. But...I also fully believe that our belief systems and world views also have a LOT to do with how our bodies act and react to the world around us. It was one of the things I wanted to eventually study anthropologically - more than likely would have been the subject of my dissertation. It was a concept I came up with at a pagan festival I'd attended. Someone mentioned how "in early times women bled on the new moon, etc..." I initially discounted that because there's no way to prove that. Men oftentimes wrote down histories, and those particular facets of a woman's daily life weren't exactly written down...sooooo...I decided to try something....I decided to will myself to bleed around the new moon, and ovulate around the full...and guess what? It's not dead on, but it's darn close....I don't know how much of that is my pagan beliefs lending support to my mind's decision to my body - or if it's just the power of mind alone. But it's so fascinating, ya know?

For that reason, I think things like biofeedback really do work - but you *have* to truly believe that it will work. My feeling is that faith healing works in a similar manner, provided there isn't a biological/physiological obstruction (ie., can't make someone who was born without optic nerves see).

[fiddledragon]

There is no test specifically for fibro - though I have several friends, a stepmother, and an aunt who has it - my stepmother was convinced I had it, and almost had *me* convinced I had it...but I found my problems stem more from stress and being overweight than anything.

The description that WebMD gives is WAY too general and describes most everyone at any given point of time. And the list they give above can have all sorts of causes - from sleep apnea to enlarged tonsils, to chronic fatigue, respiratory problems, circulation problems, etc...

There are hot spots that are pretty key in determining whether or not you have fibromyalgia, you need to have something like 8 of 11 of them or something like that. http://www.fibromyalgia.org should give you some better information. The problem is that a) not all doctors believe that it is a real condition, b) there is no way to specifically diagnose it based on one test since it is a syndrome, c) if you want to go to a doctor about it - find a way to get to a rheumatologist - they're the ones that deal most with fibromyalgia as it is an auto-immune disease/syndrome/etc...I *can* be confused (and alternately be diagnosed as) chronic fatigue, lupus, and a number of other auto-immune disorders. There are several blood tests that *can* be performed, including a sed rate (determines the ammount of "inflammation" in the blood stream - that's a bad way of describing it, but it's the best I can do off the top of my head).

HTH.

[voltbang.livejournal.com]

My understanding is that there is somethign that indicates lupus definitively. If you don't have that indicator, FMS is a frequent default "we just don't know" diagnosis.

The poke you in 11 places test seems like a crazy way to get a diagnosis to me, but that's what Becky's diagnosis is based on.

Re:

[fiddledragon]

That may be, but they have flung the term lupus around my stepmother so many times,a nd every time it comes back negative. She doesn't have the face rashes or anything like that.

The 11 points *is* weird, but the fact is that it is reproducible, and is common in fibro patients. I have about 3 or 4 of them, and it's EXCRUTIATING - in ways that is really hard to describe to someone who has never felt that kind of pain from a (fairly) light (3lbs pressure which was the recommendation for the test about 5 years ago (don't know if it's changed) is pretty light) touch. In my case I know mine come from allergies, stress, and my weight. I also know that while my stepmother has severe amounts of stress, that alone isn't enough to account for having something like 10 out of the 11.

The things for fibro patients that seem to be pretty consistent are the points, general myalgia (non-specific pain), and the sed rate - but again, those by themselves are indicators rather than a tell-tale diagnosis. http://www.fibromyalgia.org and the National Arthritis Foundation are really good sources for more information.

The whole hypochondriac/FMS type cycle is kind of a weird one. And there are probably a slew of FMS diagnosed people who are diagnosed as such because there is no specific test. Unfortunately, it is a real syndrome, and how do you tell the difference between hypochondriacs and those that truly suffer from it? The problem is you really can't - because hypochondriacs truly are experiencing the feelings they're describing even if it is "just in their head" - and since FMS can only really be diagnosed from a doctor listening to symptoms and case histories, it's easy to make it a catch all.

No, it's not degenerative, but it is painful, and does make daily little things pretty big tasks depending on what you actually experience. There are some that get depressed because of this, and make the cycle worse - there are those that fight it and work around it and work with it in order to live their lives as full as possible.

My wish for all that suffer from FMS whether real or not (doesn't matter to me - if you feel pain, you feel pain, real or imagined) is that the find the strength within themselves to continue to live life to its fullest, and not let the FMS diagnosis beat them down.

[technomom]

Pretty much "what she said." I'd add that before FMS is diagnosed, you go through an exhaustive battery of tests to rule out everything else, from thyroid problems to lupus to arthritis. And if you don't have those (or, as in my case, you do have something else but it doesn't explain all of your symptoms), AND you fit the other diagnostic criteria, you get a diagnosis of FMS. Only a trained rheumatologist is really qualified to give such a diagnosis, and the other criteria are:
1) widespread pain of three months duration or more affecting the axial skeleton and at least two contralateral quadrants of the body.
2) Pain (not tenderness) in 11 of 18 trigger points when they are palpated with the amount of pressure sufficient to blanch a finger nail.

I nearly yelled with all 18 points. Katie also has FMS, although thankfully, it's a much milder case. While FMS is not degenerative, it magnifies any other kind of pain one experiences. Because I also have arthritis, which is degenerative, the FMS has given much more more trouble over time.

[fiddledragon]

*laugh* I *knew* there was an 11 and something with 8 in there somewhere. Thank you. So it's 11 out of 18 not 8 out of 11.

[chelona.livejournal.com]

Yes, there is a blood test for Lupas, which has alot of the same symptoms as FMS.

[voltbang.livejournal.com]

FMS is a collection of symptoms more than it is a diagnosis, but there are some things that seem to be helpful for a lot of FMS sufferers. It's used as a catchall diagnosis for "you have a lot of complaints but we can't find an underlying problem or give you any real relief". As diagnosises go, it's got it's ups and it's downs. On the up side, it's not degenerative, or life-threatening, and there is support and help coping. On the down side, they don't know the underlying cause, and thus can't effctively treat it.


Becky was officially diagnosed with FMS, but things that help FMS people generally don't seem to help her much. We have a lot of books on the subject if you want to give some of them a read. We progressed from FMS to thyroid to insulin looking for the cause of her problems.

[vill.livejournal.com]

Track down a doctor who specializes in it. 1. (S)he will listen to you, having seen people who have been told for years that it is all in their head, and 2. There is a screening test involving tenderness in a set of points around the body. One of those "if you are tender 6 of these 11 places" sort of things. Not a conclusive diagnosis, but it's a pretty common indicator.

The fibromyalgia patients I've worked with haven't found much relief from Western medicine. They've had more results from diet/exercise changes, massage, and removal of specific irritants (like mold) from their homes. Those are all good for you, anyway. I've heard mixed results about alternative therapies like acupuncture.

[teapot-farm.livejournal.com]

'song, don't jump to conclusions here, however reassuring it is to have an explanation. As someone else said, that set of symptoms can relate to a huge range of conditions. I would add that you have perfectly good explanations for several of them (depression and daytime tiredness for example - plenty of good historical cause for depression (however that expresses in you), and a very full and hectic lifestyle). In addition, the *worst* thing you can do, IMO, is go to a doctor and say 'I have these symptoms and I think it's fibromyalgia'. That's likely to provoke the dismissal that you are already worried you'll get from a doctor - rightly or wrongly, they don't like any hint of 'self-diagnosis', and for people who *are* hypochondriacs, fibro is a top choice (or that's my impression). In addition, as someone else said, there's a set of trigger points for pain that are used in diagnosis, which aren't mentioned here. I have heard a lot of reports from people with fibro or with mistaken diagnoses of fibro (since it presents quite similarly to my medical condition)...
Many of these symptoms could also be related to blood sugar issues, and I know you're hypoglycaemic. I don't know if you monitor in the same way as full-on diabetics do, but that could be worth looking at as well.

[hobbitblue.livejournal.com]

Thats a very general description of some of the fibro symptoms, in fact most of those are common in a whole range of conditions... *I* have most of those but I don't reckon I have fibro, as I don't have the levels of pain that my partner forestwalker has. Its always useful to get some hints on what could be wrong with you, but do a lot more reading, there are much better resources about fibro online than that one. There's a specific "test" for fibro involving having a number of tender points on your body, better get your doctor or a specialist to check for those. Other things that could cause the symptoms listed include diabetes, hypoglycemia, sleep disturbance, sleep apnea, stress, depression and breathing problems, to list just the ones that sprang to mind!
The main thing with fibro is the pain, and the weird cycle of flare-ups lasting days or weeks, followed by spells of little discomfort. Its well worth checking out though, and in the meantime I hope you are feeling better soon...

*hi* from another ATL lj..

[bheansidhe.livejournal.com]

Got here through a link on mightywombat's journal. Hope you don't mind receiving Random Thoughts of Strangers (not that I think you would ;). But anyway, I had a friend who was diagnosed with fibro back in 1990 or 1991, and I watched her cope for several years. Here are my $0.02:

First, of course, a lot of other stuff - rheumatoid arthritis, lupus, etc. - must be ruled out. Which means lots of tests, and at least one or two specialists. Now, my friend with FM had two weeks of flu-like symptoms in her teens, followed by increasingly disabling bouts of pain and weakness over the next few years. She tested negative for everything until she was a freshman in college, when her reaction to most of the "FM tender points" (http://www.fibromyalgia.com/tender_points.htm) on her body led to the FM diagnosis. Besides pain meds, the things that helped her were managing her blood sugar through diet, yoga, and mild but consistent exercise.

Remember that doctors who think FM is 'hypochondria' or 'mentally triggered' are on par with doctors who think homosexuality still belongs in the DSM-IV as a psychological disorder. There are still some (of both) in operation, but you should be able to find someone knowledgeable and sympathetic. [That said, I can look back on my friend's behavior and see how easy it would have been to dismiss her as "mental." She was often frightened, angry, achy, and sleep-deprived; she could turn whiny, clingy, or caustic at the drop of a hat - and all for symptoms no one could "see."]

My advice to you: start a symptom diary. Every day write down temperature, energy level, where you felt pain, how you slept. It will be invaluable and it just takes a few minutes a day - I've done it before. Maybe your partner can take dictation if you don't have the energy.

I hope you get through this soon!

Also.. does the Buffy invite extend to people you haven't met yet? ;)

Re: *hi* from another ATL lj..

[shadesong.livejournal.com]

All of the Random Thoughts are great... especially the symptom journal. Thanks! And yes, you can come to Buffy. :) Maybe mightywombat could give you directions?


`

[iroshi.livejournal.com]

I'm going to agree with a half-dozen other people and recommend checking with a rheumatologist, but fibromyalgia would explain why you experienced relief when I sent the Reiki, but it hurt just the same the next day. If it were a pulled muscle, the Reiki will usually warm, relax, and take the pain away from the muscle, and the next day should be fine, or at least considerably decreased pain. For chronic syndromes like gout, the effects are usually noticeable the next day, rather than when the Reiki is given. My experience with FM, though, is that Reiki is required every day to keep the pain at a tolerable level until you learn good management of the syndrome, either via medication or exercise routine, or both. (And warning: if it does turn out to be FM, your BEST bet for living pain free is to exercise every single day...but that would be something to discuss with your rheumatologist after receiving the diagnosis; they generally know what exercise routines have helped the most.) My mother couldn't do an exercise routine, given the rest of her health concerns, and so pretty much had to deal with the pain until they found a painkiller that worked well on her. I did Reiki on her every single day for a couple of years, from the time they diagnosed her, to the time they found the decent painkillers.

[eilonwy.livejournal.com]

You clearly don't need yet more opinions, and yet, here I go, about to offer mine anyway. :-D

My mum, my wonderful wonderful mum, who has been in pain for as long as I've been aware, who's been steadily worsening, and who is only just 44, has been diagnosed with fibromyalgia. The thing is, given fibros nature, giving her pain a name doesn't really do her any good.

I'm not saying she doesn't have it, it's just... I'm not sure it exists. I *do* think she has problems, but I don't think anyone really knows what they are, and lots of people seem to have similar issues, so they've been given this name, but check back in a few years, y'know?

But then, maybe I'm totally wrong. After all, fibromyalgia supposedly runs in families, and is closely related to chronic fatigue, which I've basically been diagnosed with. So. Who knows.

Advice? I don't have any, except that if you do get diagnosed with fibromyalgia, there are a lot of new books on the subject. You can't, obviously, go with all of them, but I've looked into quite a few, as I worry about my mummy, and the best advice seems to be to keep active, keep an eye on your emotional state (depression seems to lend itself well to fibro, and vice versa) and to eat healthy.

Erm. I'm going to go away now. And fervently hope that you (and my mum) feel better.

[Oh! But take heart! Even if you were diagnosed with it, it's not like my mum isn't leading a full life. Hell, she's leading a life fuller than mine. She's leading like, I dunno, 2.7 lives. She's always been insanely busy.]

[kidarrian.livejournal.com]

its a very hard syndrome to diagnose, you first have to rule out other things and then see a specialist in it and hope that they get the right things measured, what I have found is that I know I have it, I match 98% of all symtoms and have had most other things ruled out...but because of my pain tolerance is very high most of the time and I only have a mild case of it (I belive there is too levels to it, and that once you get to the point where your painpoints register its very far advanced) and have no intention of allowing this thing to rule my life....
be carefull with it, in that what you feel about it does tend to effect it a lot, as it does have a lot to do with nerve response and how up your immunine system is doing...if your mind is down the pain will increase, if its up it doesn't effect you as much...

check out other things and eliminate them first, then if and when you have whittled it down and still think its fybro...give me a yelp and I will toss you more infomation on it,