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-   -   does anyone elese have fibromyalgia (https://www.quiltingboard.com/general-chit-chat-non-quilting-talk-f7/does-anyone-elese-have-fibromyalgia-t62004.html)

watterstide 08-30-2010 04:00 AM


Originally Posted by damaquilts
Kim you have just described my life. I ration my energy. I took yesterday completely off. NO sewing , cleaning, other than dishes. spent most of the day on this board. (evil thing) lol
I also have CFS which makes it worse because while exercise helps fibromyalgia it makes CFS worse.
And I am with you everyone says but you look fine. I just want to answer And you look smart but I never have.
I know when I have pushed myself too far. I lose my voice, my lymph glands in my neck swell and I get a sore throat. Then I know I am out for the count for about a week.
Also the meds they advertise like Lyrica . The side effects were awful. As was the cymbalta.
You need to just learn what your limits are. Don't push yourself past them.

i see a shrink/therapist to deal with the depression also...(because of my lack of being able to do things)
i take cymbalta, no issues
plus a few other meds.

i go for a shot or teradol (spelling?) occasionally, when in a bad flair..it really helps. maybe 2 or 3 times a year. it is an anti-inflamatory. yesterday i did too much..so i was in bed a 7:30. pacing yourself, like you said, is most important!

Riversong 08-30-2010 04:04 AM

Ditto here. I am in the midst of a flare now and some of these tips may help....had it for years.Im going to try the food diary thing.

tdgiffin 08-30-2010 04:04 AM

Yes I do. I have had it since 2004. I see a pain specialist, and even though I take medicine for it and watch my diet, I still get sick if I overdo it. there is a book you might want to get. it is From Fatigued to Fantastic by Dr. Teitelbaum. There is also a web site, Fibro Talk, that has tons of helpful information andd support.

damaquilts 08-30-2010 04:12 AM

I am on citalopram/Celexa it is the only antidepressant I could take without crazy side effects and I take half of what was prescribed. 10mg instead of 20. I am doing ok most times on it sometimes I have to take the 20 but I can only do it one day can't take it 2 days in a row. I am super sensitive to medications. On top of the fibro I have had 2 aortic aneurysm surgeries in the last 10 years. The first is what set it off. I also have fought depression all my life and finally had a doc diagnose me with PTSD I thought he was nuts himself until I started reading up on that and then it made sense. I flip out if there is any stress in my life at all. Need things totally calm. Like that happens right? LOL

Born2Sew 08-30-2010 04:27 AM


Originally Posted by damaquilts
I am on citalopram/Celexa it is the only antidepressant I could take without crazy side effects and I take half of what was prescribed. 10mg instead of 20. I am doing ok most times on it sometimes I have to take the 20 but I can only do it one day can't take it 2 days in a row. I am super sensitive to medications. On top of the fibro I have had 2 aortic aneurysm surgeries in the last 10 years. The first is what set it off. I also have fought depression all my life and finally had a doc diagnose me with PTSD I thought he was nuts himself until I started reading up on that and then it made sense. I flip out if there is any stress in my life at all. Need things totally calm. Like that happens right? LOL

Sometimes I'm not sure if my doctor really knows what all I have. She just says Mixed Connective Tissue Disease, but when I look it up it doesn't show what all she says I have. First she said if I had inflammation I didn't have fibro, yet I have so many symptoms of it and almost all of the tender points. However, I do have inflammation. Then about a yr ago she says I do have fibro along with RA. Perhaps I am still evolving...

The issue of stress nails it for me and I can't stand stress anymore. Although my life is still very stressful to a large extent, it isn't as bad as it has been in the past. I really need to research PTSD more. I was counting up all the pills and Rx's I take now and it is 12. I don't know which is worse sometimes the pain or the fatigue or the brain fog, or taking pills. None of it is fun, and how I love "but you look so good". Inside you feel like something the dog drug home and the cat wouldn't have.

Lady-T 08-30-2010 05:04 AM

Been living with Fibro for 16+ years now.
I went off all those pain meds about 10 yrs ago. Sometimes I think they made me feel worse...? I resolved myself to knowing I'm going to have good days & bad days. Try not to do a lot of heavy lifting....and I agree with everyone else...ASPARTAME is a NO-NO!! That pain is unbearable!
Winters are worse. The cold really kicks it into high gear and we heat with wood, so we never have a constant warm temp in the house. I hate winter!
Best thing I have found for me is heat therapy.

Ditter43 08-30-2010 07:00 AM

I was also diagnosed back when it was called fibrositis. The fog was one of the reasons I retired from nursing when I did. I was so afraid of making an error that would hurt one of my patients.

Fortunately since I started taking Cymbalta, my flare ups seem to be shorter. I don't think they are that much milder though. This one I am in now is a doozy, not sleeping and a lot of pain. I just keep telling myself it will pass.

I think a lot of us have a tendency to overdo and not take frequent enough rest periods. I jump from one thing to another, not doing any one task for too long at one time.

Today I am hurting and feel like a zombie because I couldn't sleep last night. It will definitely be a slow day for me!!!
:|

frogella 08-30-2010 07:57 AM

I have had Lupus and Fibro since 1997. I am some muscle relaxers, and pain blockers at night. I have trouble sleeping, and the fibro fog is sometimes really bad ( like today :-) ) and the heat absolutely kills me. I try to look at the bright side, it could be worse. At least I am not dying, though some days you would think that. Keep telling yourself:
I control the disease, the disease does not control me........

BellaBoo 08-30-2010 08:43 AM

I too was diagnosed with fibro years ago. I had no idea what it was. The Dr. told me to change my diet. No processed foods, no artificial anything, no sodas, no high fructose corn syrup, nothing but whole foods, lean meats, dairy, fruits and limit wheat products. It took time but that's all I buy now to feed the family. I seldom have trouble with fibro. I get extremely tired out of the blue sometimes but I don't hurt anywhere. I think a disciplined diet is a big factor in keeping the fibro under control. It worked for me.

countrymaid 08-30-2010 08:44 AM

Wow, thank you for this discussion. I go to the pain clinic on Friday. I hurt my back a number of years ago but have felt for a while now that it was a bigger issue than that. I went off my Cymbalta this summer because of a change in insurance. After two months of hell, I got it re-approved. I can't believe what a difference it made in just a few days. I think I'll have a good chat with the doctor at my appointment. I also made a switch to diet soda and I'm rethinking that move as well.


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