VERY IMPORTANT TO EVERYONE, A MUST READ!!!

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lillie8, May 1, 2004.

  1. bjdd6069

    bjdd6069 New Member

    Bumping so maybe others can read....
  2. kimkane

    kimkane New Member

    great post, thank you for the info. hope you are doing well.
  3. lovethesun

    lovethesun New Member

    It really helps to people like yourself being so proactive with your health and then sharing too! It gives us all courage to keep on pluggin' . I'm sure some with fms ARE misdiagnosed or have other undiagnosed problems. Thank you for sharing SUN
  4. pptillery

    pptillery New Member

    Hi Lillie,

    Finding the right doctor and getting the right diagnosis is half the battle.

    I am so happy you found a doctor that didn't stop until he got to the bottom of your problem.

    Kudos to you for perservering and taking the initiative to find out everything you can about your problem.

    I hope the new doc will do something great for you and that things will get better.

    Keep the faith sweetheart,

    Paula
  5. bjdd6069

    bjdd6069 New Member

    Sorry duh...saw the referance to go to Google....must of been fibro fog....sorry again.
    BJ
  6. MsE

    MsE New Member

    Just wanted to add my good wishes for health to all of the others you have received. God bless you and keep you strong.
  7. lillie8

    lillie8 New Member

    Hi everyone,

    Thanks for the prayers and well wishes. I will keep you all informed as I go down this new path. If this has helped anyone please let us know. You don't have to have the skin problems with this disease, or even the pain. You can just be severly fatigued. But if you do have the skin problems you will have the pain and fatigue. With the skin problems it is called dermatomyositis, with out it is polymyositis.

    I have not started treatment yet. Have an appointment with a Rummie this week to confirm my disease. I will have a muscle biopsy if necessary, I don’t think it will be since I now have two of the skin problems. About a month ago pain in my fingers was waking me from sleep. Then about a week ago my fingers stated getting feelings like they’re being stuck with pins and burning. Now they are turning purple and very painful; my fingers look just like the ones on dermatlas. It looks like I now have Gottron`s Papule.
    I have swallowing and breathing problems so it looks as though my disease is prettty advanced.

    I am so thankful;my new doctor has listen to me. Just wish I could get started with the treatment.

    Wellness to Everyone,
    Lillie
  8. Sandyz

    Sandyz New Member

    I`m sorry to hear you have this illness and it was never caught earlier. I, too have a red rash on my neck and chest and alot of the other symptoms you mentioned. I`m going to look up dermatomyositis and find out more about it.

    Good luck with your treatment. Let us know how your doing.
    Sandy
  9. jean615

    jean615 New Member

    This is just another illness that memics or runs in combinationation with FMS, such a lupus, Lyme, MS,arthritis,dermatomyositis, as most of you here have posted, you have the rash, very common.

    hope this helps,

    Jean
  10. LythaMarie

    LythaMarie Member

    wow, this sounds just like me. I will have to bring up this possibility with my dr. I was diagnosed 6 years ago with fibro and have this V shaped rash on my chest, never itches, sometimes it is redder than other days. I have had no success with any meds that I have been put on for the fibro and seems that my symptoms keep getting worse. I can barely walk up the stairs at work, my legs start to burn and hurt and get weak. I have horrible fatigue. And am in constant pain. I have always thought it has to be something else, fibro is not progressive...whatever this is has slowly gotten horribly worse. Thanks for the info :)
  11. Mikie

    Mikie Moderator

    Dear Lillie,

    My prayers are with you. I'm so sorry for all you've been through and how difficult it has been to get a diagnosis. Some of us have been misdiagnosed or the docs don't have enough info to make a definitive diagnosis. I think it's always a good idea to eliminate everything we can but it's difficult because our illnesses can mimic others and there can be so much overlap in symptoms. Have they given you any kind of prognosis? I hope you will heal.

    Love, Mikie