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RooMB4
Mar. 17, 2012, 08:35 PM
Does anyone have it? What does it feel like? Any info/experiences would be appreciated. Thx!

MistyBlue
Mar. 17, 2012, 08:44 PM
Check the disabilities forum, quite a bit of info there. :yes:

AFAIK fibro can vary wildly from person to person though.

Technically it's not FM unless diagnosed by a rheumotologist. And I just heard last week that they do now have a blood test to definitively diagnose it. I don't know a whole lot about it though. Others with long term experience can tell you a lot more. I only learned a bit when a doctor tried to diagnose me with it and I told them....well, we're not allowed to use that language here. :winkgrin:

SendenHorse
Mar. 17, 2012, 09:34 PM
Oh yes, I have it very bad. Diagnosed in 2008. I have no real good days, always a chronic level of pain and tireness. It does swing on a continum, but I'm always "affected" if that makes sense.

Every part of my body hurts. When I push on any muscle it feels like a bruise and also like I was stabbed. Its a localized sudden and stabbing pain. Some areas hurt more then others but all hurt some (if that makes sense). I have a feeling of being "weighed down". I have very bad fatigue, never rested. I have TMJ pretty bad.

MistyBlue
Mar. 17, 2012, 09:36 PM
TMJ/TMD pain sucks.
Ask your doctor about getting referred to a physical therapist.

Seriously...astounding what they can do for TMJ/TMD pain. And all sorts of weird-ass body pain. Myofacial issues are often a nasty cause of that type of pain. :yes:

RooMB4
Mar. 17, 2012, 11:12 PM
Thanks for the info and I'm sorry you have to deal with that pain constantly. I will also look up the other posts in the disabilities section. I am curious because I've been having a lot of pain in my neck, back hips and legs. It's a pain that's hard to explain but most closely reminds me of when you first wake up in the morning and try to touch your toes and you get the pain the the back of your legs, etc. That's how I feel all over - mostly on the back side of my body but no in any extremeties. Just curious what it could be. FYI I'm also in my early 30's.

Thanks!

bits619
Mar. 18, 2012, 12:48 AM
I don't really know if I belong here, but i was thinking about this all day and was going to pony up and start a thread about this sort of thing.
Here's the deal. I'm in my mid twenties, am middling active.... Okay not greatly active at all, but part of it IS because of the pain! Lately it's been worse than usual. The last few nights I've been lying in bed and have this urge to just circle every spot on my body that hurts. Right now, it is ankles and tops of feet/near ankle, hips (good grief my hips), elbows (how excessively strange, though I do drive a lot every day), shoulders, wrists. Also middle back. At the least it's typical aches nothing to talk about, but some days my hips and elbows just kill. Kill.
It's also my tendons and muscles that feel exhausted or wound too tight, not just achey joints.

I'm in decent weight, could lose 5, maybe ten, pounds. I need more muscle strength, i know that much. I try to eat at least mindfully, but that too is a work in progress. I am easily the least flexible person in my age group that i know of. My energy varies from what feels like a normal person (wake up, go to work for 8-9 hours, go home and either sweep/clean or cook dinner... Not both) to about 40% of what I need to get through the day. On those days, making the simplest decision at work or home is nearly impossible. It took me ten minutes to redirect myself and focus enough on what I was trying to decide at work the other day.... And my coworker was just looking at me like I was a total space cadet. But I couldn't get past step One of making a choice.

I really don't think that what I have in particular is something as serious as fibro.... I have good days and it's not like this immense debilitating thing... It just makes me feel so frustrated and tired. Sometimes I think I've been given a used body for my own, you know? I get really worried for the future because I'm sorry, but someone under 30 who hasn't been in intense physical training or a serious accident should not be this achey!

I'm wondering personally, what the best things to do would be. Joint supplements? More exercise, no matter how sore and tired it makes me? More stretching, weight training? Meditation and stress management?
Probably all of the above, lol!
Sometimes I just feel like a freak for being so tired and sore after normal stuff, like a day of horseback riding and running errands around town. I do wonder if I just need to become more active and it'll bounce me back up with more energy... But it is hard enough to go to work 5 days and ride two days of the week!

LauraKY
Mar. 18, 2012, 11:31 AM
I know I sound like a broken record. Fibromyalgia is a syndrome, not a disease. It's a constellation of symptoms with an unknown cause.

Have you been tested for Lyme? Adequately tested, not just the first line ELISA test? Have you checked your symptoms against a checklist of tick borne disease symptoms?

SendenHorse
Mar. 18, 2012, 11:43 AM
I don't really know if I belong here, but i was thinking about this all day and was going to pony up and start a thread about this sort of thing.
Here's the deal. I'm in my mid twenties, am middling active.... Okay not greatly active at all, but part of it IS because of the pain! Lately it's been worse than usual. The last few nights I've been lying in bed and have this urge to just circle every spot on my body that hurts. Right now, it is ankles and tops of feet/near ankle, hips (good grief my hips), elbows (how excessively strange, though I do drive a lot every day), shoulders, wrists. Also middle back. At the least it's typical aches nothing to talk about, but some days my hips and elbows just kill. Kill.
It's also my tendons and muscles that feel exhausted or wound too tight, not just achey joints.

I get more sore and tired during PMS. I think my issues are hormone related as they got way worse on BCP.

I'm in decent weight, could lose 5, maybe ten, pounds. I need more muscle strength, i know that much. I try to eat at least mindfully, but that too is a work in progress. I am easily the least flexible person in my age group that i know of. My energy varies from what feels like a normal person (wake up, go to work for 8-9 hours, go home and either sweep/clean or cook dinner... Not both) to about 40% of what I need to get through the day. On those days, making the simplest decision at work or home is nearly impossible. It took me ten minutes to redirect myself and focus enough on what I was trying to decide at work the other day.... And my coworker was just looking at me like I was a total space cadet. But I couldn't get past step One of making a choice.

I really don't think that what I have in particular is something as serious as fibro.... I have good days and it's not like this immense debilitating thing... It just makes me feel so frustrated and tired. Sometimes I think I've been given a used body for my own, you know? I get really worried for the future because I'm sorry, but someone under 30 who hasn't been in intense physical training or a serious accident should not be this achey!

I'm wondering personally, what the best things to do would be. Joint supplements? More exercise, no matter how sore and tired it makes me? More stretching, weight training? Meditation and stress management?
Probably all of the above, lol!
Sometimes I just feel like a freak for being so tired and sore after normal stuff, like a day of horseback riding and running errands around town. I do wonder if I just need to become more active and it'll bounce me back up with more energy... But it is hard enough to go to work 5 days and ride two days of the week!

The most common story is symptoms come on about 25 and that was the case for me. I would not suggest that you push through it and I would see a rhumatologist ASAP.

In general I have pain both on the bones and also the muscles and where tendons/ligaments insert into the bone or muscles.

If you feel like you got hit by a truck the morning after workouts/riding/exercize then its probably either FMS or CFS.
I would get a full workup including lymes, arthritis, thyroid, FMS, Vit D, and all that stuff.

There are many drugs for FMS although I chose not to take that route. Swimming, yoga, and walking are all very good choices for workouts.

marshajo53
Mar. 18, 2012, 01:01 PM
Check the disabilities forum, quite a bit of info there. :yes:

AFAIK fibro can vary wildly from person to person though.

Technically it's not FM unless diagnosed by a rheumotologist. And I just heard last week that they do now have a blood test to definitively diagnose it. I don't know a whole lot about it though. Others with long term experience can tell you a lot more. I only learned a bit when a doctor tried to diagnose me with it and I told them....well, we're not allowed to use that language here. :winkgrin:

I am sorry for your pain, I also have fibromyalgia. I was diagnosed 20 years ago. My symptoms are the same as yours, I never know how I will feel from one day to the next. Exercise is very important, keep moving. Off the subject, I am new to this forum, how do I post a message??? Take care and I hope that you have better days than not.:)

MistyBlue
Mar. 18, 2012, 05:48 PM
Marsha, your post showed up just fine if that's what you mean by posting a message.

Thank you for the well wishes, but I don't have FM. ;) My GP attempted to use that as a reason for body pain.
The Rheumotologist said I had all the "trigger points."
Go to physical therapy for some hip pain/bursitis and found out I was a myofacial mess. Nothing wrong with me other than stuff all out of whack...causing wide spread body pain.

I think FM is extremely overdiagnosed personally. As do most doctors. However there are many people who do indeed have unexplained body pain. For now FM syndrom seems to cover it and sometimes antidepressents can help with the pain.

Unfortunately for these people the FM diagnoses and antidepressents for pain are a bandaid until whatever the actual cause of the pain is can be identified and treated more directly.

bits619
Mar. 18, 2012, 06:17 PM
Marsha, your post showed up just fine if that's what you mean by posting a message.

Thank you for the well wishes, but I don't have FM. ;) My GP attempted to use that as a reason for body pain.
The Rheumotologist said I had all the "trigger points."
Go to physical therapy for some hip pain/bursitis and found out I was a myofacial mess. Nothing wrong with me other than stuff all out of whack...causing wide spread body pain.

I think FM is extremely overdiagnosed personally. As do most doctors. However there are many people who do indeed have unexplained body pain. For now FM syndrom seems to cover it and sometimes antidepressents can help with the pain.

Unfortunately for these people the FM diagnoses and antidepressents for pain are a bandaid until whatever the actual cause of the pain is can be identified and treated more directly.

I think I'd be really hesitant to say or assume I have something like FM for the same reason, how I feel isn't nearly as extreme as what I've read. I just feel OLD, lol! And also, a pet peeve of mine is when people with a headache exclaim 'I have a MIGRAINE!' hmm, yet you're holding conversations, upright and just look moderately pained. Because I get migraines and there's NO way I can do the simplest of tasks. No way. I don't want to be one of those people, since I really can get by, i simply feel much more tired and sore than a healthy normal 26 year old.
Sigh :-/

MistyBlue
Mar. 18, 2012, 07:29 PM
I've had tons of headaches in life...only a very few migraines.

People with chronic migraine issues have every bit of my sympathy. Holy crap those are brutal! :no:

FM is a tough issue...it's a name given to a collection of pain and issues that have no other explanation.
Yet.
Antidepressents often work to alleviate some or a lot of the pain. But...not because it's a mental issue. Antidepressents are used on chronic pain of all types, not just FM, AFAIK.

I think FM sufferers have something...just that nobody is sure what it is yet or what causes it. Give it time, they'll figure it out.

Because it's not a "Hey, it's definitely THIS" cause then tons of people also claim to have and also tons of doctors over-diagnose the crap out of it. Which sucks for the people with real unexplained pain because it's not taken as seriously.

But the rheumotologist and a couple other people in that office did say there is now a blood test for FM, something new. So that's a step in the right direction. :yes:

SendenHorse
Mar. 18, 2012, 09:39 PM
We do know a LOT about FMS and several possible causes/reasons (all could be possible, and coexsisting).

Its an active area of research. (Search pubmed).

Its a pain processing issue, possibly a mitochondrial energy storage issue in addition.

It is also thought to be caused by a sleep disorder/deficiency---what comes first, pain that leads to disrupted REM stage 4 sleep or poor quality sleep leading to the inability of the muscles to heal?