I was diagnosed with fibromyalgia today.

[malta blue]

My doc ran a full spectrum of bloodtests, and is pretty sure they will all come back negative. He is convinced that I have fibromyalgia, his diagnosis based upon our conversations about my pain and sleep issues.

Does anyone have experience with this?

[lizziegrace]

1. Diagnosed 10 years ago

I also have trigeminal neuralgia (cranial nerve)

I haven't slept all night in years.

[malta blue]

3. I think he is going to run more tests,

but even talking to my friend who is a nurse and familiar with it, she said it would not surprise her at all.

How do you get by without the sleep? I feel so out of it most of the time. I space out sometimes too. I assume that is from lack of sleep.

[lizziegrace]

8. I really can't tell you

Survival pretty much kicks in. I tried several of the standard meds and they made me a zombie. But there's a lot of research going on. If this *is* the diagnosis, find a good rheumatologist. He or she will become your best friend.

[lost-in-nj]

2. I don't have any experience

but I have hugs....



lost

[malta blue]

4. lost...

thank you so much. I can really use them. Last week was the first time the pain made me cry.

[bicentennial_baby]

5. Hey sweetie...

First,

and then, http://www.democraticunderground.com/discuss/duboard.ph...

[malta blue]

9. Thanks bi_baby

I will add that one to my forums, I fear I will be needing it

[SPKrazy]

6. No, but I've worked with

fibromyalgia patients

I'll say this



find someone who is experienced in treating it

a lot of the medical community still scoff at its existence

[malta blue]

10. I was so glad that my doctor was able to give me

something today. I have been in pain for months at this level, and for years with less pain. Obviously, this is the lesser of the evils when it comes to lupus, ms, etc., that he tested me for.



My co-worker has lyme disease and she said she had been diagnosed with fibromyalgia in the beginning, so her advice was to be sure that I had been tested for all the other options. I told her that I had been. It seems she is one of the scoffers....

[VenusRising]

7. My MIL has had it for years.

She is going in for some sort of botox injection in one of her nerves in her back. Apparently, they will keep trying until they find the right one. I told her I hope they find it on the first shot. It doesn't sound like a pleasant experience at all.

Good vibes and hugs to you. I hope your pain is minimal and they can find something to help you sleep.

[malta blue]

11. omg

I despise needles. I would be the absolute worst patient if that were my treatment option. Not only does it not sound pleasant, I would rather deal with the pain.

[VenusRising]

12. We just found out not only did it NOT work...

it made the pain worse. She says she's not going to do go through any more.

I feel so bad for her. She's been like this so long I don't think she remembers what it's like to be pain-free.

[malta blue]

13. poor woman!

That sounds so horrible. My neighbor was diagnosed 10 years ago and I have only known her with it. She was the second person I called when I heard - the first was my mom.

[fudge stripe cookays]

40. Feeling awful for you.

Chronic illness is yukky. Here's a consolation. For MS, we have needles. Pick a drug, but all of them require one. The size just depends on the type of drug. Diabetes too. So some are more sukky than others!

I hope they can find a treatment for you that helps with the fatigue and pain and sleeplessness.

[Midlodemocrat]

14. I have it.

In addition to other things. Fibromyalgia is actually a disease of 'rule outs', in other words, you don't have anything more serious. Thankfully.

[malta blue]

16. Thankfully really is the word. I can't tell you

how relieved I was to finally get SOMETHING out of the doctor. My co-worker had me convinced I had lyme or worse.


pleased to know that I am in such good company.

[ThomCat]

15. I know two people with Fibro.

It's not pleasant and it's not pretty.

I hope your situation is relatively mild, and stays that way.

[malta blue]

17. Thank you friend.

At this point, it is relatively mild compared to some people's experiences. I also have to consider the indivual threshold for pain. Mine is high for some pain, low for other.

[SallyMander]

18. I'm sorry to hear that

I hope that your case stays mild, and that you're able to manage it effectively.

[malta blue]

23. Thanks SallyMander.

Me too.

[GreenPartyVoter]

19. *hugs* My nurse thinks I might have it along with my bipolar stuff. They sometimes go together

I hope you can find a workable treatment!

[malta blue]

24. Thanks for the info.

[flamingyouth]

20. I'm sorry. It's very painful and worse in the winter (at least for me).

I posted this in the Chronic Health Conditions group about the drug Lyrica:

http://www.democraticunderground.com/discuss/duboard.ph...

It can be really helpful. I take gabapentin (a similar drug) and Flexeril, and have used heat, massage and hydrotherapy. Pilates has also helped, but I work with a teacher one-on-one.

This site is also helpful: http://www.fmnetnews.com /

Best of luck to you.

[yellowdogintexas]

22. massage, yoga and warm heat are helpful. I am definitely worse

in winter, especially cold clammy damp weather. And a series of stressful days just puts me into a tailspin. It is like I get stressed, which causes me to tense up and go into sortof a neurological overdrive then all my muscles ache. Hot Bath, with a combo of equal parts of sea salt, epsom salts and baking soda ..20 minutes in a very hot soak will work wonders.

I also was fortunate enough to get a complete ergonomic review at my job and the physical changes in my desk, and new chair really eliminated some of the things that aggravate my condition.

Good wishes to you. I know I am fortunate that mine is fairly mild and remits very well in warm weather which we have 9 months of the year. I do not want to think about a full blown case of this

[malta blue]

25. Thanks for the info.

My mom is looking into getting me a package of hot stone massages at a local place.

[GOPisEvil]

21. I don't want to speak for her, but Madrone has it as well.

If you have questions, I'm sure she'd be glad to help.

Like how I volunteered for her?

[malta blue]

26. ...

Tell Madrone I hope she is well and I will seek her out for information based upon your recommendations.

[applegrove]

27. So sorry for the bad news. Take care of you!

[malta blue]

31. Thanks applegrove.

I am still doing as much research as I can to figure out what I am dealing with.

[mopinko]

28. do search and check in in chronic disease forum

lots of us there. i have had it all my life, but really was incopacitated with it after getting west nile virus.
2 drugs that are working for me now- ambien has saved my life. i still sleep a lot, but at least i wake up rested, and don't waste an hour or 2 every night tossing and turning, and aching.
neurontin is also helping. helping the pain, and the depression of it all.
beware of the blowback that some pain drugs will give you. that pain has a character all it's own. learn to recognize it.

good luck. you are over the worst part. getting a dx.

[malta blue]

32. my doc did not give me any meds for it.

He said I should treat it with exercise and heat for now since I am already on Cymbalta.

I have a friend who suffers tremendously from it and she it a walking pharmacy - something I would like to avoid.

[mopinko]

37. sounds harsh to me.

but don't get me going about doctors. we will be here all night.
i understand how you feel. i get tired of my weighty pill box, too. but you deserve relief from your pain. period.

[CreekDog]

29. What a pain!

Literally.

[malta blue]

33. tee hee

Thanks

[raccoon]

30. An idiot doctor I used to go to decided I had fibromyalgia. I didn't,

what I had was repetitive strain injury.

Read up and learn as much as you can about it, malta.

[malta blue]

34. That is too bad that you were misdiagnosed like that.

I wish I could say that the pain is localized where a repetetive strain injury could be the cause. I just ache all over - and I mean all over.

[Mike03]

35. Hi Malta

One of my sisters has fibromyalgia. My heart goes out to you.

There's no doubt in my mind that syndromes like FM and Chronic Fatigue are real, although many doctors consider them syndromes of exclusion, meaning that they are diagnosed only when other illnesses are ruled out by tests. I just hope that your doctor(s) have done complete tests on you including complete blood chemistry, etc.

There are some great support groups on the web for FM. There are also many non-alopathic treatments that sufferers swear by, most of them involving attempting to boost the body's ability to produce energy at the cellular level.

Good luck. Just please, if possible, get a second opinion. You just want to make sure your doc hasn't missed anything else, since there are a number of conditions that can cause the symptoms generally seen in Fibromyalgia and CFS cases.

Take care!

[malta blue]

38. Thanks for all the information.

My doc has run all the blood work, CBC, lupus, MS, lyme, etc. We haven't gotten the results back, but he is very convinced that I don't have anything systemic like that, rather that I have fibromyalgia, which would be the lesser of the evils.

I will make sure with him though.

Thanks

[Shine]

36. No experience, but lots of hugs to you

I'm so sorry to hear you've been dealing with pain and sleep issues. This is news to me! Hang in there. I'll be curious to hear what those blood tests show.

[malta blue]

39. Hi Shine....

Yes, I must admit, I have been keeping all of this on the quiet with all of my other dramas and dilemmas the last 6 months, but I could no longer take the exhaustion and the pain.

From what I can gather, my condition is mild compared to others, so I have that to be thankful for.

to you.....

~r.

[mentalsolstice]

41. FM Sux!

I was diagnosed about 5 years ago and go through cycles with the sleep issues. As for the pain, I describe it as like the muscle aches you have when you have the flu. I also have depth and perception issues, particularly in bright light, and my sense of balance will go all out of whack.

It'll take time, but you'll find routines that will ease the pain.

Good luck!

[malta blue]

42. Interesting about the depth and perception issues.

I have been having a really hard time driving at night the last few months, and now that I think about it, it may be about the time I started feeling so crappy. I wonder if that has anything to do with it....