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how bad do your flare ups get?
20 Replies
belle1329 - January 28

A bit late with my answer, just noticed this question of you.
I too have very cold hands and feet. My feet are worse than my hands. Lately I noticed if I massage my feet top and bottoms for just a few minutes , very hard, (it hurts alot)sometimes hubby rubs for me, but better to do myself, I can take the pain I inflict easier, and then I put on a pair of those fluffy warm socks and within minutes my feet are warm and they stay warm for the rest of the night. It works most of the time. I also have a jucuzzi tub (best investment ever, had it for about 10 yrs, got it for hubbys back, which is better now, got a good deal used) the jacuzzi helps alot to warm me up when my whole body hurts and feels cold down to the bones. I put my feet in front of the jets and my back and arms in front of the other ones. It helps alot. I guess a hot regular tub would help and a massage. I still have my everyday pain, but Im so very thank for this relief. Hope this helps :)


belle1329 - January 28

PS my feet get so cold they get charlie horses in my feet and toes! :(


belle1329 - January 29

swttee4u , My ears hurt alot , sometimes I make a doenut shape ( like a doenut for people with hemeroids, lol) with my hand and sleep on it until it falls a sleep, helsps my ears for a bit


sarahcole - February 1

I can relate to the weather changes. As soon as it started snowing today my pain kicked in. Befor the flare, I vacuumed my apt, then it started. My arms feel like I lifted weights for 5 hours. This morning I had to lie down and was so fatigued I was there for 2 hours. I feel rested but can hardly use my arms. Days like these help me accept that I can't work because fibro is so unpredictable. Maybe I should prepare ahead of time by paying more attn. to the weather forecast!


Ilia - September 7

September 7, 2011...regarding flareups...I've had Primary Sjogren's Syndrome, Raynauds, and Fibromyalgia for better than 20 years.

I've always thought I've done pretty well, inspite of discomfort, doctor visits, disease sysmptoms, medications, and pain. It's been 3 weeks since my flare-up of fibromyalgia. It lasted about 4 weeks before I decided it was time to visit my Rheumatologist.

Light and noises were almost intolerable.

In so many ways, fibromyalgia is worse than the autoimmune disease which I've learned to accommodate in my daily schedule. It is FMS which creates the mind-fog, body-numbing fatigue, and body-wide pain, deep pain in my buttocks which make it intolerable to sit...I sit on ice packs to at least numb the pain temporarily, etc. During the flare-up, my ears ached (slept on my back), I used 20-30 compression gloves to reduce the vascular spasms from FMS (?) or was it the Raynaud's (?), wool socks and an electric blanket to try and warm up my hands and toes.

Two years ago, I invested in my health by purchasing a tempurpedic bed (cloud) where I can raise my head and/or feet. This was very expensive but the money had been saved. It's a godsend over all the other mattresses we've tried.

I went through a sleep-study and discovered that
I never go into a deep sleep, my oxygen level dropped to 83, and I engage in wrestling matches with arm and leg twitches and movement throughout the night.

I am now on oxygen at night and found that I sleep somewhat better and my mind-fog in the morning is greatly reduced, though it still takes me hours to really get moving on most days.

During this past flare-up, I began to fear that maybe I was developing MS like my younger sister. I was tripping constantly, the fatigue was so great that I could barely lift my arms, and spent most of the day in bed just lying there. My elbows were very tender. From my elbows to my wrist, it felt like I was wearing a cast, they felt so heavy. It took a concentrated effort to lift them. My wrists hurt and felt so week, as were my hands and fingers. I could barely hold a pen, and my writing was very shaky.

I found myself so tense that I was constantly clenching my teeth to the point my jaw ached. My neck really hurt where the bone is in the back. I wore ThermaWrap on my neck and used an infra-red heating pad to help me relax my back muscles.

My knees were tender and my legs also felt heavy from the knees down. My toes are always cold...and for the last two years, my toenails have turned blue and the nails thickened so much that they are impossible to cut and affect the fit of my shoes, so I wear slippers, sandals, or go around in my stocking feet.

Several years back, I bought electric booties on the internet, and they are a godsend for warming up my feet. I wish the electric cord was longer so that I could use them in bed without an extension cord.

This flare-up scared both me and my husband. I didn't know if this was going to be my new "normal" or if it would pass.

When I went to my Rheumatologist, he prescribed a medication for pain (Tramadol...50 mg.) which I take 3 times a day. It definitely helped. He also prescribed Gabapentin...300 mg., which is a cousin to Lyrica. I also have nerve pain with a medication for that. Since I have Secondary FMS, it is difficult sometimes to say if my symptoms are Sjogren's or FMS. I think this flare-up was definitely FMS!

Three weeks later, I am happy to report that the flare-up has definitely tapered off. The medication is definitely helping.

I think the next time a flare-up like this occurs, I can hope that it is temporary, a month at best (???) If it should last longer, I'll just have to find a way to deal with it psychologically...change my life perspective and expectations...not an easy task...and hope!

Thanks for listening....I know the last post was in 2009 but wanted to add my experience and how I've been trying to cope and deal with this most baffling disease...and I do think it is a disease, whether or not the powers that be know the cause.



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