Hello all!

It has been a long time since i have posted, and although I have visited the board from time to time I have had my original source of chronic pain (uterine fibroids) surgically removed and have been relatively pain free for about the past 18 months.

Unfortunately, I am in the early stages of diagnosis with suspected fibromyalgia. I am curious, for those of you with this disease, what were your earliest symptoms?

I ask because mine are a bit unusual, more localized to neck, back, hips, and such. Not as generalized I guess as most patients seem to be. This has thrown off my doc, but thank goodness I have a good one that has taken me seriously and continues to try to help me!

I have done some research and found that this can happen, although it is a bit more unusual of a presentation.

I am still learning and would welcome any feedback on initial symptoms, diagnosis, and words of encouragement from those of you with fibro.

Thanks!!!

Taf

Pain and fatigue.

Thanks, my pain has not been all over my body, but as I described above. Was yours generalized?? We are in the home stretch of diagnosis, so I am just happy to know there is an answer for why I feel so yuck and have these areas of pain

T

The pain seemed more in my neck and shoulders, like tension. But when my trigger points were pushed, I had pain I wasn't even aware of in those places.

Some of the classic trigger points aren't painful for me. However, the points that are painful are extremely bad. Thanks for your help.....I was beginning to think I was crazy!!!

Things vary, you might not necessarily fall into a perfect box. Just makes diagnosing more frustrating.

Yes you are so correct! But I think I have a good doc now and I am on a path to treatment!!
Thanks!

T

best of luck to you.

Ive had it since 2005 and its been a VERY long road, and alot of docs REFUSE to even acknowledge it exisits let alone TREAT it.

I know, I was 'lucky' to get diagnosed in college over ten years ago. I'd never even heard of it. I have 1st appt with a Fibromyalgia specialty clinic next week. Took years for a doctor to bring that up.

How did the appt go? I went through a pain clinic program -twice- a few years ago.

on topic: I was pretty young then, my first symptoms were very unusual fatigue (for a superperson)
and low grade fever, night sweats and sore throat.

things have changed a lot after that though.

Most recent news, just had to go to my reg clinic as pain crept back up to a 9/10 flare
- keeping me at that 'place' where I was certain to go insane unless something broke. needn't say more.
I was shocked they gave me a few percs. I do believe keeping a med record free of fighting and hassles for awhile is probably a good thing.

The appt went great. The Rheumatologists knew what they were doing and weren't afraid of hydro or benzos for treatment. I'm glad I went to a specialist as opposed to a 'pain clinic' as I haven't heard the best of reports.

Glad you got some percs, those are good when I really need them. I need to get a sleep study done. Most FM have sleep apnea and I know that will help a ton.

TMI alert coming so you might want to stop reading now....

Just having a major flare up with a teething, fussy, unhappy baby and the return of my 1st postpartum menstrual cycle. I'm an exhausted mess!

ohh you poor thing~, not TMI, and yikes~ thats a lot to deal with. hang in there~

Rheumatologist dept where I used to go quit helping FMers, so I have to move along and find another place.
yes, the pain clinic over all left me with a few tools, meditation techniques etc.. but little else.

lack of sleep has been an issue for me for all the years I've had this. no 'apnea' - pretty sure but,
a sleep study might be helpful.

it is so dang difficult to go to ANY appts when you are too fatigued to move. crud, I should try to sleep soon.
nite nite Tiades

Why in the world would they quit when their own association recommends that all suspected Fibro cases be referred to them?

Why is that do you think? Has your doc said why? That is worrisome.....

T

They don't exactly know. A big component of FM is the inability to reach 3 and 4 phase sleep. I've heard estimates as high as 80% have it. The lack of that deep healing sleep may be part of the reason the pain receptors get to run rampant.

Tiades - I am sure that the interruption of your sleep pattern with a baby makes it difficult to reach those critical deep phases of sleep, LOL. I have enough trouble with just my own body waking me up, so I can't conceive of how you manage with a baby!

Have you had your sleep study yet?

Good luck!

Wow, thanks for that explanation. That may explain why I am so tired when I wake up (even after 8-9 hours of so called "good" sleep). And yawn during the day a lot. I was reading up on sleep apnea. I would be interested to hear how your sleep study went. I am not your typical "sleep apena" patent (I mean, I could lose a few pounds and such) but not what you typically expect.

It makes sense, the way you describe it
Thanks!

Taf

C-Dub~ Baby sleeps with Daddy! I get my own bed; every little thing wakes me up!

taffy~ I'm glad to help.

very good Daddy! really, thank goodness. You need special care and all the best sleep you can get.

I think I want a sleep study done too, but would like to hear more about them.
I'm kind of afraid I won't sleep at all during the study, and then I will be very sick and ornery for that lack of sleep.
That's the price I pay, stomach sick, headache and pain flares are far worse for a few days.

I passed my first sleep study which I think is a crock. The little electrode thingys kept falling off my head and they had to wake me up to stick them back on! Idiots.

Sleep deprivation is one of the worst contributers to my FM pain. I don't sleep more than 1 1/2 hours at any given time. Even if I'm exhausted I will sleep no more than 3 hours. I go back to sleep and repeat the cycle. I never reach deep sleep stage thus no restorative sleep was ever achieved. I had the sleep study done. It said that I suffered from sleep apnea. I already knew this according to my wife and I can actually tell when this snoring happens. The problem with the study is they wanted me to sleep on my back. I told them that I have trained myself to sleep on my side, back and forth most of the time because I know that lying on my back made it worse. The nurse told me to ly on my back anyway. It didn't seem like I slept much at all that night. The study said that I originally fell asleep about 20 minutes after lights out. I disputed that also. I'm not sure what the criteria for this is, but I was semi concious for at least an hour after lights out. Bottom line is that I do have a sleep problem and it does affect my pain levels, along with my cognative abilities throughout the day as well as my energy levels. Some days the " fog " is so bad it's all I can do to concentrate at all. I notice when this happens that my vision is also affected greatly. I can't seem to focus on things and my eyes feel swollen and hurt from pressure. I was prescribed Provigil for this " fog " and I must say that it helps considerablly, but it causes me to crash later. Not terrible like amphetimines, but nonetheless I still crash. I'm also prescribed 100 mg Tramadol every 6 hours. I take lunesta, 3 mg every night to get to sleep. I feel like my entire life and sleep cycle is hijacked with drugs to help me sleep and then to wake up. I keep taking them though because the alternative seems to be worse. I wish they could find some way to treat the underlying FM/CFS rather than just treat the symptoms. I hope any of this make sense. Good luck with deep sleep.

In 1991, I had some procedures done to test for epilepsy. I don't remember why, but it included a sleep study. I absolutely could not go to sleep. I was having trouble with insomnia at the time. They finally gave up. But it came out ok, I didn't have epilepsy.

Tiades, you must have a wonderful husband. He sounds like mine. He has lower back pain and he would toss and turn and snore so loud, he kept waking me up. Then I started having a lot of painful RA flares. He was afraid that he would kick me or hit me with his arm when he rolled over toward me. He asked if I wanted him to sleep on the couch (he wouldn't use one of the guest bedrooms) I told him no but I couldn't stand him waking me up every night.

leftovers,

Yes, it makes perfect sense. I'm glad there are a number of us here who can truly appreciate
what each other has to deal with.
So far, my insurance will not cover Provigal so I cant test that out. I do use Ambien,
that has worked steady for a couple months now.
If I could, I would willingly take uppers and downers as a regimen, IF I thought it would work consistently for 6 months or so.
Guess I will try to schedule a study soon. I see my new Pain Dr. in one week! I'm scared but exited.

Here is a decent link from the Mayo Clinic.
Shows more resources than I realized where out there.

http://www.mayoclinic.com/health/search/search

type Fibromyalgia into the search box there

I like the Mayo Clinic alot. We tried to convince my mom to go there. She did not have Fibro but had several other things going on at the same time. That's the thing, often folks have more than one issue. Mayo has groups of docs working together. We had no luck in convincing her. Boy she was one stubborn lady.

Did anyone see the show Dr. Oz did on how there is some virus for which most FM sufferers test positive? I thought is showed some real medical diagnosis progress. But then I am not a doctor, so my opinion does not really matter but perhaps Dr. Oz's does. Let's hope. Wouldn't it be great if there was a test?

There are so many medical conditions where there are not tests. They are ghost diagnosis, almost. I know that Parkinson's is like that. There is no blood test, just an exclusion of what else it could be.

No, I did not hear about that test, sounds like a good one!
I'd love to go the the Mayo but doubt my insurance will cover it. Maybe I can get a referral.

There are a couple of Mayo Clinics in the US, I think, could be wrong.

Tiades went to a clinic in specialized in Fibro. Now that would be even better than a Mayo clinic for one who has fibro, as the Mayo clinic don't really specialize, they just have teams of doctors which work together.

Yes, assuming that there is some validity to this Wiki entry: http://en.wikipedia.org/wiki/Mayo_Clinic

This was an interesting excerpt from O&W's wiki reference

"Mayo Clinic pays medical doctors a fixed salary that is unaffected by patient volume. This practice is thought to decrease the monetary motivation to see patients in large numbers and increase the incentive to spend more time with individuals. Salaries are determined by the marketplace salaries for physicians in comparable large group practices."

It's a non-profit organization too. Which I am sure plays into the ability of them to take this approach.

Medical problems, specially Fibro, are complicated and a Fibro diagnosis could overshadow other issues. For example, one could have Fibro and also have RA. If the RA is not correctly diagnosed it could go untreated unnecessarily.