To those of you w/ CFS

Discussion in 'Fibromyalgia Main Forum' started by lv2sing, Jun 25, 2006.

  1. lv2sing

    lv2sing New Member

    I know all the "technical" signs of CFS, but one of them that isn't listed (& I wondered if it even is one) because I think I also have CFS besides the fibro & Sjogrens & OA. I was wondering about a hot feeling like you are on fire symptom? That is over the entire body. Is there anyone out there that also has this that has CFS? I've had it for like 6 months now, but it's at it's worst, I actually want to cry because I feel like I could pass out, & I cannot function when it happens because it's like all I can think about at the moment. Sometimes I'll have it a few hrs, other times, all day. Even being inside w/ the air on & a fan on me doesn't always cool me off. It's like I'm burning from the inside out. And when it happens, I do NOT sweat.It's not menopause, since I had a total hysterectomy over 14 yrs ago, & I really don't get "hot flashes" per say anymore. (I'm 43). Plus I'm still on HRT. Also, I had a bad experience with my rheumy this past week (you can go back & read my prior post, I won't get into it again, but he prescribed Tizanidine (Zanaflex) for me because I've been getting alot of spastic spasms in my legs & arms (but I have radiculopathy in my rt leg from nerve damage due to ruptured disc), & I have a collapsed disc now.I don't know why the arms do it sometimes, they fall asleep & tingle alot. I just felt like he should have referred me back to my neurosurgeon before giving me another drug like this. I'm on SO many already (16?). I know the side effects increase each time you mix drugs, & I just don't want to pop another pill. He's very pill happy, & I'm SICK of taking medicine. I haven't taken a single one since I filled it since I'm not going back to him. I was just curious if anyone had good/bad results w/ it. It is also for MS, so I just wasn't real hip on taking something for MS when I don't even have it! Any ideas anyone on the "hotness" & the medicine? Thanks everyone, & for letting me gripe again!! Hugs to all :) PS. I know with sjogrens the chance of Lymphoma incresases, & a symptom is night sweating, which I don't have, it's always daytime. Just curious if anyone knows someone, or if you have it yourself....
  2. Michelle_NZ

    Michelle_NZ New Member

    I've recently developed fibro as well as CFS and along with the other symptoms I've developed patches of burning pain, in my head and face and arms. Apparently it is quite common with fibro.

    Take care
    Michelle
  3. 1sweetie

    1sweetie New Member

    Yes and it was one of the first symptoms. It was happening the other day and suddenly while I was setting still in my home where the temperature is set below 70, I felt the heat coming...then the sweating. My husband was outside and he came in and as he walked by me, he touched my hair/head. He asked me what was wrong. He could feel heat several inches away from me.

    There have been a few threads started on this in the past. Try a search for severe or excessive sweating or maybe heat intolerance. It has made my life miserable along with everything else.

    I've had my thyroid tested several times and even tried an injection of hormones and it didn't work. I also quite taking an SSRI because one of the main side effects are severe sweating. That did not help.

    There are others but I know it doesn't help you.

  4. rockgor

    rockgor Well-Known Member

    I have what I think are the big (most popular I suppose you could say) four:

    Fatigue, sleep problems, brain fog, depression.

    But I know they are other like swollen glands, frequent infections, etc.

    Have you found anything to help like backing soda baths, etc.?

    (Some of the folks here have trouble reading, so you might want to use frequent paragraphs.)

  5. carebelle

    carebelle New Member

    I have CFS/FM and I get this at different times also.
    mine really feels like I'm being burn inside almost like an electrical slow burn. From head to toe. It last about an hour .

    I called my husband at work it scared me so bad. I felt like I had to be getting in the middle of some kind of a radio wave or transmission of something the burning was so terrible all I could do was lay down on my bed .

    It brought me to tears .Felt kinda like you touched an open plug outlet, but it doesn't stop like a shock ,the burning keeps burning. Like you don't let go of the plug.
  6. jess

    jess New Member

    You are not alone in this. I have this too. It does come and go though. I even have it in my mouth. I can't seem to cool off when it happens. I also have the problem of not being able to sweat. It is my opinion that the burning feeling comes from misfired messages from the brain. I have cfs/fibro. The only meds I take are for high blood pressure and reflux. I take wob enzymes for inflamation. Jess