Has anyone had FMS their entire life?

Discussion in 'Fibromyalgia Main Forum' started by janderson6791, Jan 12, 2010.

  1. janderson6791

    janderson6791 New Member

    I have had body pain my entire life. I have never heard or met anyone who was born with it, except for me. Just wondering if I am totally alone in this catagory?? It just makes me think that maybe something else is wrong with me that is not FMS because of my duration.
  2. jole

    jole Member

    I sound a lot like you. When I was born, I was a "blue baby" and they didn't think I would live. Thought it was a heart defect. My heart is fine. Had throat infections constantly, tonsils out at 5. Continued to be ill, constant muscle aches and fatigue. Sent to a major children's hospital at 12, thought I had rheumatic fever, but of course all the tests came back negative. Missed a lot of school due to chronic fatigue, and by age 16 it seemed to level off some.

    I finished my education, became a nurse, married, raised 5 children. It was not easy by any means. Never understood why I had such little energy compared to all my friends, or why I was ill so much more often. But I managed to survive.

    Then 7 years ago it hit big time....was bed ridden, couldn't concentrate, had to quit my job, and became disabled. It took all these years to understand that yes, there really was something going on with my body...I was not lazy...I was not a hypochondriac...and I was not an intentional "outcast" as a child.

    Was I born with it? I think I was. I have no other explaination for an entire life of illnesses that could not be explained. The up side is, I never knew what "normal" felt like, so I don't miss it. But I do miss being the "me" I was before it totally knocked me down........Jole
  3. GranmaBB

    GranmaBB New Member

    I have always told my doctors that I had this since childhood. I remember being in pain and being extra sensitive to anything touching my skin. What was 'normal' pain for others was always extreme to me. So I learned to avoid doing things that would make me worse and I rested alot.

    I wasn't a sickly child, but I knew something was wrong. I was always called a hypochondriac and it was all in my head. I always knew that someday there would be a name and reason for this condition.

    I also grew up and had a great career, children, and grandchildren, but got really worse after a trauma a few years ago.

    Now I have a lot of arthritis on top of the fm. I have a herniated disk in my neck and stenosis in the neck and spine.. So I had an mri and the new ortho-spine doctor I am seeing discovered that I was born with 'short pedicles' which means that my nerves are being compressed all the time. That was an 'aha' moment for me - like a lightbulb going on. We talked about that it probably has to do do with quite a bit of my pain throughout my life.
    I still have fm issues and arthritis issues, and everything else that goes along with that.

    But it's a relief to know I was not crazy all my life.
    Also, the doctors have no problems prescribing whatever pain meds I need.
    And my family now understands that I can't do many of the things I used to do.

    I'm sure there are more of us out there who have been in pain all their lives.
    Good luck to you.
  4. TeaBisqit

    TeaBisqit Member

    Sounds more like Lyme, either born with it or from a very early age.

    I had no symptoms till I was about fifteen to sixteen. I started to get the sound and light sensitivity and when I was sixteen, I got full blown Fibromyalgia symptoms. I was bite by ticks at age eight, officially, that's when my mother took me to the doc, but no one knew about Lyme back then, so I wasn't treated. I believe that I was actually bit earlier because I remember being six years old and having the round bullseye rashes even then.

    You can get bit even as a baby. My cousin's baby was bit by a tick when she was only a few months old. So for those who think they were born with it, it really may be that you got bit so young that you have no memory of the bite. It's worth pursuing a Lyme diagnosis.
  5. janderson6791

    janderson6791 New Member

    I was tested for Lyme and they said no. My parnets took me to the doctor a lot when I was young because I always cried and they did not know why! When I was able to kinda talk, I would say "owie leg or owie arm". I remember being around 3-4 and waking up crying because my leg hurt so bad. My father would always get out the baby oil and rub my leg until I fell asleep. When I was 6, I had bunk beds. I would tie ropes to the mattress above me and then tie my arms and legs tothe ropes so they would hang up in the air when I would sleep. I would also shake my legs at night to help me with the pain. My sister would also say she had a vibrating bed!! I would also pound my wrist on a corner of a table, which hurt really bad but it felt better than the other pain. My parnets continued to take me to the doctors and I was tested for everything. They told my parents that it was growing pains. As I became a teenager, I started cutting of the circulation in my legs and arms by wrapping rubber bands around them. At times my hands would turn purple but it helped with the pain. When I reached my 20's, I knew it could not be growing pains anymore. Then I started going through many test, blood, thyroid, MRI, brain scans, sleep studies, Psychologist, Neurogolist, etc... I have seen so many doctors all over MN. The pain is the same as it was when I can first remember - around 3. I want to cut off my rm or my leg at times when the pain gets so bad. I asked my doctor if at some point my body/brain wont be able to handle the pain and if I could go crazy? I joke now about cutting off my arm when it hurts but will I ever go crazy in the head and do it? I hope not! Now I am in my 30's and the testing has ended and I have been given a title that means nothing - FMS - It a catagory they put people in when they dont know what is wrong. I have now been diagnosed with a title that relly means sorry we dont know and we will put you with other pepole we dont know and give them the same title through their symptoms are completely different.

    Thanks for the reply
    [This Message was Edited on 01/13/2010]
  6. JLH

    JLH New Member

    Sadly to say, yes I have. And ... I am soooo tired of it! I am so tired of all the pain, and hurting all over. I am in so much pain now that I could just sit here and cry all night.

    In fact, when I was in grade school, I would come home from school and lay on the couch and cry because my legs would hurt so badly, my mother would tell me. She took me to many doctors. Some said that it was just growing pains, and a couple thought I had M.S. Now my Rhuemy thinks it was my lupus that I had then and still have. I also think I had fibro then.
  7. KerryK

    KerryK Member

    Not sure, but there seem to have been very early warnings. I always seemed to recover from activity much more slowly than my friends. I would have pains from activities that would not bother my friends. I had severe growing pains. I had missed long periods of school for some undetermined fatigueing disorder. By 13, severe reflux disease made its appearance. I seem to have been "off" my whole life. Things just got much worse in adulthood.
  8. scotlandrose

    scotlandrose Member

    I am sitting at my computer looking at a "sportsman of the Year" award I got in Highschool for cheerleading...I could do all those gymnastics, flips etc......

    I never got hurt, thank God, but always, always had a sore left shoulder or even bad sore spot in my shoulder after getting thrown around. of course, coaches used ice/heat etc...always went away. I got CFS first, then slowly got all these horrible sore spots...now i hade Fibro. Anyway, that spot in my shoulder started hurting one day when all the spots were popping up, and would not go away. Finally named it Freddy Krueger, now you know exactly what it feels like, well, felt like. Told one of my docs if she did not find a surgen to cut the muscle so it could not knot up, I would do it my self. '

    Ended up doing Botox to kill Freddy, but he comes back, just like in the movies. after 3+ years, he has lost much of his "power". Used to get Botox every 3 months, the 4-5, now, I am at almost 1 year. God, I love Botox. Doc now even saves a little for the lines between my eyes. I think I got those from the bad headaches. They will never go away, unless I have them filled in or something, but now they are not getting worse!

    Besides the left shoulder knot, I had bad seasonal allergies and was the first to get sick if something was going around.

    Weird thing. When my CFS was finaly full blown, got diagnosed etc....I realized my seasonal/pet allergies were gone. Doc even tested me. I do now have food allergies to almost everything. Those are all new

  9. TeaBisqit

    TeaBisqit Member

    Still sounds like Lyme. The tests were never accurate. You need to see a real Lyme specialist and tell him about how you had pain as a child. Many of us had false negative tests or borderline tests. They still might not be able to do anything about it. In my case, no amount of antibiotics does anything for it. But you should go anyway.
  10. pirtpain

    pirtpain New Member

    I don't know much about Lyme disease but I do have a couple of questions for you.. When you were young did the drs say that pains were hormonal? Also did your breasts start hurting at a younger age than normal therefore they said " it's hormonal? " I am curious because my 8 yr old granddaughter is having pains at night and they say it's hormaonal. Has anyone else had this happen t them?

  11. zena01

    zena01 New Member

    Hi, please, please go over to the lyme board here and ask questions. People will be happy to help you there although the board doesn't move as fast. PLEASE check on lyme.

    Take it from me, age 49, problems since childhood diagnosed with fibromyalgia late 2004, and finally tested positive with Lyme and Babesia (another tick disease) in December 2007.

    My lyme doctor thinks based on the tests and prior history I may have been infected at age 12 when both my knees swelled up and I couldn't bend them for 6 months and got a Osgoods schlatters disease diagnosis then...and this or that with this or that diagnosis for years.

    Please learn all you need to BEFORE going further as there is much controversy in Lyme and testing isn't very good and your doctor will (depending on where you live) say OH, we don't have that here! which is what I was told -- yes, we DO have it here in Oregon!

    From your question if I remember correctly I did have lots of breast pain when growing....they came on early and got to c cup by 7th grade so girls made fun and boys chased for the wrong reasons. A whole host of other problems.

    Please go over to the lyme board and re-read all the old posts to learn what you can.
    hope this helps you.
  12. janderson6791

    janderson6791 New Member

    When I read everyone’s messages about what they have, its so different than mine. I am healthy! I have never had any other sickness! In fact, I never get sick. (knock on wood)
    I never get a cold, a cough, diarrhea, etc.. When I was a kid, I never got sick. Yea, I got the normal chicken pocks but other than that, I have been what you call normal. I am NOT more sensitive to pain, I take pain no problem - I have had pain my whole life or I have put my self in pain, to not feel the pain I always have. I don’t have any allergies, never had a surgery, never had a injury, never had a broken bone, I have never even had stitches. The only problem I have, is body pain - not just my arm, shoulder, head, legs, ankles, etc.. It hurts everywhere. It is usually one side or the other side but not just in one spot. I want to squeeze/rip/pound/cut my arm, leg, head, foot, wrist, everything at one point during the day. It has not prevented me from doing anything in my life. The pain has never won over any day in my life. It is just there and I just continue to work, play, move, etc.. Does anyone have ENTIRE body pain since their first memory as a child - has had NO other conditions/sickness/Illness/injuries/etc.. I will continue with the lyme testing again but I live in MN, we have ticks every where and I know we have great testing here for lyme disease. But it will not hurt for me to get tested again - by a specialist! Thanks to everyone for all the messages - I know you all understand how important it is and how much it helps me! Thank-you!!
  13. janderson6791

    janderson6791 New Member

    My doctors had many reasons why I was having pain - One was Hormonal - but that was not true. I did not have breast pain - but they did grow from a training bra to D in 3 months at age 14. I dont ever recall any pain in the breast. I have had the same pain from birth to now at age 33. It's not hormonal or growing pains!!

    Good luck with your granddaughter.

  14. janderson6791

    janderson6791 New Member

    I went to my doctor today and talked to him about lyme desease. He took some blood test for - Lyme - Babesia Microti - Bartonella - Ehrlichia - Anaplasma and maybe some others but I know these forsure. He also gave me a month sample of Savella which I found out my very expensive health insurance does not cover. I am on Lyrica and my insurance helps pay for that but not Savella. Anyways, just wanted to say I am getting as many test as possible when it comes to Lyme desease and all of it's co-infections. I hope to find out soon!

  15. RENA0909

    RENA0909 New Member

    I was always weak as a child.My siblings could all swim/play sports and I just could not do anything.
    My friend said she used to love playing tennis in school.I thought.....how the hell can you possibly run for the ball??lol.

    I did not realise I was so weak as a child because you just get on with things.I remeber having to go to hosp.when I was about 4 with veruccas on both my feet and had to have them treated.I had Quinsy when I was around 9 and aslo had problems with my left leg turning inwards and that really made me scream.

    I had real heavy painful periods which used to last for 9-11 days and the pain would put mt in bed.I was always sickly and in pain but it was when I had an op 11 years ago that I got severe fibro.
    I was in bed for nearly 2 years and wanted to die.

    Knowing now about fibro has made me realise that I did have so MANY painful times in my life that I do think that I have always had it.

    My siblings still all work full time and I cannot even wash my dishes!

    But I have a gorgeous grand-daughter!!!!lol