Does anyone else experience this!?

Discussion in 'Fibromyalgia Main Forum' started by Vanilla_SiN, Mar 24, 2009.

  1. Vanilla_SiN

    Vanilla_SiN New Member

    Sorry if this post comes up twice...I didn't see any of my posts from two days ago.

    Anyways, I have not been diagnosed yet with FM but I'm wondering if what I'm feeling is, infact what it is. It started off with a rash all over my body. My primary doctor took pictures because he believed it was autoimmune related. So I was sent to the dermatologist who told me it was "just a form of eczema and may be autoimmune related." So about a month later, I started getting cramping in my calves and pain in my legs, fingers, wrists, etc. It was like a sharp sudden pain. Then, I got really nervous because I was getting muscle twitching all over my body non stop for about a month. I thought I had MS and went and had an MRI done and blood work but it all came back fine. So now I'm wondering what the twitching is, and the tingling, vibrating sensations I am feeling in my hands and feet? Does anyone else experience these sensations?

    My other worry is intercourse, which I can no longer have. I get a sharp, burning pain that doesn't stop. After several trips to the doctor, I was diagnosed with Vestibulitis...but that doesn't really tell me much. I want to know why this is happening and am I the ONLY one out there that is going through this? I can't seem to find a doctor who is taking an interest in this. Thanks for your time.
  2. Debra49659

    Debra49659 New Member

    I suffer with FM and while I do suffer with some of the same symptoms as you... I wonder have you had you potassium checked?? Low potassium can cause some of your symptoms. I also wonder if anybody mentioned Lupus to you. Or, Lyme disease.

    Unfortunately your symptoms are common in many different disorders:(

    Anyway those are my thoughts....and by no means am I a medical, just a guess on my part.

    Perhaps someone else can give you other ideas to mention to your doctor....hey, I would ask for a referral to a good rhumatologist (sp?).

  3. sydneysider

    sydneysider Member

    I agree with the above post.

    What you are describing does not sound like FM to me. It will probably take the right specialist to figure this out.

    It is normal for doctors to lose interest in cases that they can't figure out. Keep persevering. Don't let them put you off.

    Good luck.
  4. Bunchy

    Bunchy New Member

    Was the rash painful - you can get a lot of nerve pain and sensations with shingles?

    The intercourse thing sounds like you may have an infection - maybe Bacterial Vaginosis or it could be vulvodynia (sp?) - try googling them.

    The tingling and vibrating is neurological - you should definitely get a referral to a neurologist and also maybe an immunologist too. Be thorough when describing your symptoms to them.

    Good luck - hang in there :)

    Love Bunchy x
  5. Vanilla_SiN

    Vanilla_SiN New Member

    Thanks to all of you who replied. I have been to several doctors for the pain I'm having with intercourse and have been checked for everything and I'm clean, no diseases, bacteria etc.

    The rash just came on one day suddenly. It started with a small patch on my arm and spread to legs and around my body. It's VERY itchy, but not painful. My body Hurts though, like I'm always tired and sore. Which lead me to believe I may have FM.

    I see a Rheumatologist in May and hopefully he has some answers for me since no other doctor seems to know what's wrong. *Sigh*

    Thanks to all of you for your thoughts!

  6. ladybugmandy

    ladybugmandy Member

    kristin...i agree. shingles could be a possibility. it often causes nerve pain and makes intercourse painful, depending on which nerves are affected. maybe the rash was an atypical presentation of shingles?
  7. Vanilla_SiN

    Vanilla_SiN New Member

    If by some chance it is shingles, wouldn't my dermatologist be able to tell? I think I'd be really pissed off if I've had an outbreak of shingles and he told me it was eczema! I dont know how contagious shingles is, but my husband and one year old daughter have no marks on them and are in good health. It's the strangest thing since I've always had perfect skin. I'm annoyed! But I will look into this when I see the dermatologist on April 1st! Thanks!
  8. dsalling

    dsalling New Member

    I have FM and just getting over shingles. Shingles rash is usually in a line going around half of the bodyand it spreads out further than that after a few days.. Your rash doesn't sound like it. The shingles rash proceeds to watery blisters. After the rash clears up you may have numbness and nerve pain on the surface of the areas where the rash was.

    As far as Fibromyalgia, Dr. Teitelbaum has a lot of information and even a test you can take free online. Just google him for the info.

    Best wishes.
  9. joeperry

    joeperry New Member

    Hey Vanilla,

    (1) Rash - I suddenly got a similiar eczema type rash on arms body (maybe legs)..... I started drinking lactose free milk and the rash went in a few days. I still drink it and have had no return of that rash. Prior to getting FM I had no thought I was lactose intolerant. You can check for other symptoms of this.

    (2) Muscle twitching - symptomatic of low magnesium lelvels. I had this too. I take a magnesium tablet and multivitamin each day and almost never get them anymore. It may have taken a few days or weeks for the levels to get high enough to stop it so stick with it. I too thought it may have ben MS but luckily not.

    Rashes can also be associated with dermamyositis but it is rare and the rash I think is more localised and it IS a much more severe rash than eczema like and its more debilitating than FM.... so its unlikely thats relevant to you but I mention it is case its worth mentioning to the doc. Bloodwork will show it up.

    Sorry cant help with the intercourse problem ! \
    Hope these suggestions help you out.

    Good luck,

  10. gapsych

    gapsych New Member

    I had what is called Pityriasis rosea. Obviously I am not a doctor and this may be way off base as your rash sounds different than mine and it is easily recognized by dermatologist depending on what stage you are in. It usually starts with what is called a "Herald Patch", a circular itchy raised patch of skin, usually on the trunk or back followed by a rash which is symmetrical on both sides of the body. But the rash can show up in other places.

    I had this in my 20's, long before this DD and it may be more common with people who work with or are around children as I did. I have know several teachers and day care workers who have had this However it can be autoimmune in a small percentage of cases. The reason I mentioned this is because of the following for which I tested negative.

    Google for more information.

    "The exact cause of pityriasis rosea is unclear, although the cause may be a viral infection, such as certain strains of the human herpes virus (HHV6 or HHV7). It's not believed to be contagious."


    ETA I must have misread/misprocessed your post. I thought you said something about an isolated patch of rash on your arm. Time to go rest!!

    I will leave this post up for informational purposes.[This Message was Edited on 07/20/2009]
  11. patchesofsunshine

    patchesofsunshine New Member

    Dermatmyositis (again ck spelling) is what nearly killed my aunt close to seven years ago. Get yourself to another dermatologist and ask if he/she has ever heard of this before. It isn't curable, but my aunt is in remittian. This disease not only causes rash and the other things you describe, it makes your muscles atrophy and can cause hair loss and other maladies. Please get help soon!!!

    (Nancy S.)