Diannia

I've been seeing my dr for several years complaining about aches and pains. She finally sent me for blood work and xrays. Didn't find anything so pulled out her "book" and pushed on the 18 tender points for fibro...anything over 11 that hurts is a good indication for fibro. I had 13 so she started me on Cymbalta. I guess that even though it's for depression they are finding that it helps fibro patients. I had been on Darvacet but have since gotten off it and only take Ibuprophen on days when I'm on my feet alot (usually the weekends). My pain is mostly in my back, hips and sometimes knees although I go through spells where some part of me will ache for several months then it just disappears...it's really weird! I told her I felt like 1 big raw nerve before taking these meds. The biggest drawbacks to the Cymbalta for me have been a bad taste in my mouth and I'm more tired...chewing gum and 1 diet Coke a day seem to be solving these 2 problems for me pretty well.

Diannia

ruthruff3

I have been "formally" diagnosed with fibromyalgia for a few months now even though I've been in pain for several years. I have all 18 trigger points.

Do any of you have extremely high B6 levels? The normal high is 12.7 and mine was 95! No one really seems to know why or what to do to lower it. I know B6 can affect the nervous system. I will have another blood test the end of the month and hopefully it will be lower Any input would be appreciated!!!

Sugarfoot

What does NAET stand for?

Moonglow

Thank you Ditter for asking. I can't believe how many of us are afflicted with this painful condition. It's been interesting to read all your thoughts and suggestions about this topic. I was formally diagnosed about 8 years ago but like many of you have probably had it for a lot longer than that. I had chronic fatigue syndrome in the early 1980's and my doctor feels it is linked to that as it's one of those lingering viruses (similar to glandular fever) that stay in your body and flare up when you get stressed etc. That probably explains why I have my good days and my not so good days. I am retiring from work this week so it's going to be interesting to see if my fibromyalgia improves once I leave my stressful job. I don't take any painkillers as nothing seems to work but I try to keep busy and try not to dwell on the pain. Quilting is very therapeutic. Best wishes to all.

damaquilts

The two CFS and Fibromyalgia seem to go together. . They (whoever they are) have decided CFS is a immune disease. In Britian from what I understand from reading about CFS they ask that people with it to NOT give blood. I really don't know sometimes which is worse. The fatigue or the pain from the fibro. Stress makes both worse. If I try to do anything like yard work it takes me a week to recover. I really don't know how people work with it. I can't make any plans because I don't know what days its(fatigue) going to hit so bad I can barely get out of bed. The pain I can mostly work around but not the fatigue.
I get a news letter about these two and every week it seems something else it popping up that works for someone else. I can't afford to keep changing trying to figure out if something works. Cymbalta was a horror for me. Actually cause audio hallucinations.And made me even more tired than I was already. All I did was sleep. They tried Neurotin which worked for a lot of people just made me feel awful. Caused chest pains and since I couldn't use that the doc didn't even try Lyrica since they are both gaba based. Good thing my DD's doc gave it to her for pain and it made her so loopy she couldn't function she had to stop and it didn't help the pain at all.
I am glad some can find relief with pills and such I just wish I could have my old life back. without the aneurysm surgeries without the fibro without the cfs the memory loss etc. I would settle for simple old age. LOL

quiltyfeelings

If i even just hold the bottle of Lyrica, i gain 15 pounds! I only take it as needed so try not to take it frequently. I've not had a good week, but this is why I'm self-employed...longarmer. I work when I feel good, and rest when I don't feel good.

Kappy

Funny you should mention blood donations. My fibro/CF started after I received blood (surgery related). I wonder????

Tink's Mom

I was told NOT to donate, by my Dr....he didn't say why, but I will try to remember to ask why.

Feather3

The reason they say NOT to donate blood is they really don't know what causes Fibromyalgia.

I was d'xd with Fibro back in 1999. The drugs of choice then were antidepressants. I tried 5 of them & all gave me nothing but major side effects. I've tried the newer drugs & again major side effects. So I take vitamins, exercise & try to eat as healthy as I can. One bad days my Husband massages my muscle knots. If I push myself I know it will take me a few days to recover. Trips in the car exhaust me, again taking a few days to recover. So I try to plan those all day outings & keep the next few days open to recoup.

They say Fibro is possibly triggered from some underlying virus. Looking back I had a nasty flu type virus that attacked my muscles (mostly leg) 10 years before I was d'xd with Fibro. I had muscle spams from lower back to feet for 3 weeks, fever, nausea, etc. 2 rounds of antibiotics & a couple months to get back to feeling normal.

The hardest part of having Fibro is having everyone, including your doctors, tell you, you look healthy & normal. They tell you to suck it up. I even had people, including my cancer docs, say that to me while I was going thru chemo. I don't know what you're supposed to look like. If they had even one day of Fibro they'd change their tune in a heart beat!

yourstrulyquilts

It's the same song, sung by so many fibromites! You'd think the docs would take it more seriously than they do. It's an agonizing and debilitating condition that affects everyone in the family. My kids think I'm lazy for declining to go places, but I just can't. It takes days to recover. :( :cry: