Has anyone had fibromyalgia their entire life?

Discussion in 'General Health & Wellness' started by janderson6791, Jan 12, 2010.

  1. janderson6791

    janderson6791 New Member

    I have had body pain since the day I was born. Its everyday. Pain varies from day to day. I have it everywhere - everywhere! I do not have the sensatives spots they say fibromyaliga people do -(knees, neck, chest, shoulder blades, etc...). I am also not more sensative to pain. I actually have a high pain tolerance. I have been on anti-depressants (dont help) I have also been on lyrica 500mg a day - (dont help) I am just wondering if there is anyone who has had the pain their entire life, have a higher pain tolerance, sitting around is not an option and sleeping has never been pain free????

    Thank-you
    Jennifer
  2. JLH

    JLH New Member

    Yes, I have. I also have had systemic lupus since I was in grade school.

    I had so much pain in my legs when I was in grade school, that I would come home and hit the couch for the rest of the evening in a fetal position, crying because of the pain. My mother says that she took me to numerous doctors to see what was wrong, but I was never diagnosed. One thought is was growing pains, another one something else, one M.S., etc.

    Unike you, I do have the sensitive spots that fibro presents. I have had to develop a high pain tolerance due to having pain all my life and working over 30 years while raising a family, etc.

    I have never been able to sit around either, but the more you move, the better you feel anyway. This is also true due to my severe arthritis.

    I am on Cymbalta, Neurontin (could not tolerate Lyrica), and Zanaflex for the fibro. I take a ton of other meds for other major health problems. My sleep is never pain free either. In fact, I have a very difficult sleeping due to my obstructive sleep apnea, my arthritis, and all my other pain areas.

    So .... you are not alone, Jennifer.
  3. JaneSmith

    JaneSmith New Member

    I started pain at age 15. I am now 58. Not one day goes by that I don't have pain. I don't take drugs except Tylenol. And the pains varys also. I never know where it's going to hit. And like you, I have developed such a high pain tolerance that I didn't know I had appendicitis this past September. I thought it was the Fibromyalgia acting up. Until I had a CAT Scan. I had 5 hrs. before bursting. Emergency surgery. Eye opener for me. I can't sit around, I have to move all the time or the pain gets worse. Sleeping can be challenging....What a life, huh?
  4. janderson6791

    janderson6791 New Member

    Jane - I am so happpy to meet you! You do sound like me. So have you had test done to try and figure out what you have. Fibromyalgia is not a true diagnose - It is a catagory they put people in when they can't figure out what is wrong. There are so many people out there that say they have fibromyalgia and it is so different then what I have. Also, most people have it because they have some other health condition. Or they had it for a month, 6 mohths, etc.. - or just in their arm, leg, etc.. Then I hear how people hang out in their bed and can't do anything because of the pain. I could never just lay in bed or not do anything - I would go crazy. I am never sick - I have never had a surgery, other health problem - nothing. Is this the same for you? I think we have something that they just have not figured out. It is something - NOT fibromyalgia. I want to figure out what is wrong and fix it, not just deal with it because now they have given my problem a name. Can you tell me what type of test you have done to fifure out why you are in pain?? What do you do on the bad days for the pain? I am so happy to meet you! Please tell me more. You are the first person I have met that is like me. Thank-you for your message. I hope to hear back from you soon!

    Jennifer
  5. Nanie46

    Nanie46 Moderator

    This sounds so familiar.

    It sounds like chronic lyme (borrelia burgdorferi) and coinfections like babesia, bartonella and ehrlichia.

    Here's some info that may help you:


    symptom list pages 9-11, and coinfection info pages 22-27...


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    http://www.ilads.org/lyme_disease/about_lyme.html



    http://www.lymepa.org/Basics2007v1.2Rev.pdf