How slowly does fibro appear?

Discussion in 'Fibromyalgia Main Forum' started by moopsie, Aug 2, 2006.

  1. moopsie

    moopsie New Member

    Hi all. I am new here, though I’ve been lurking and reading posts for a while. I have learned a lot from what I have been reading, but one thing I haven’t been able to find in the discussions that I’m curious about, how slowly does fibro develop and how long will new symptoms continue to show up? Here is some background for my question. My 13 yo daughter has been diagnosed with probable fibro. We have an appt at a pediatric pain clinic in a couple of weeks and I’m keeping my fingers crossed that they can provide some help. The nurse there said she doesn't really have a diagnosis and that we have to diagnose her before treating her. In March of 05 she got strep throat. It came back a few more times and we finally got it cleared up but she kept having sore throats and her knees and jaw started hurting. Finally, in Nov 05 her tonsils were taken out and miraculously she was back to normal…no more sore throats, knee or jaw pain and she was smiling and energetic again. Then in the second week of December her right hand started to swell, hurt and go numb. She plays flute so I figure she was practicing too much so she rested it over Christmas break, but instead of getting better it got worse and her knees and jaw started hurting again. In Jan we saw her doctor and then an orthopedic doc. Ortho thought carpal tunnel but was concerned because 12 yo’s don’t usually get carpal tunnel. 5 days after the ortho visit her left hand started doing like the right, Ortho doc said not carpal tunnel and referred us to rheumatologist. The rheumy thought jra and we started months of treatment that only partially worked. In the meantime she developed ankle and elbow pain, was tired all the time (sleeping through classes and then going to bed as soon as she got home from school). Then the daily constant headaches, and tremors when closing her fists and jaw and moving her head up and down, and the sleep problems from the pain (even though the doctors ignore the part that she can’t sleep because of the pain). Finally a bone scan and all the blood work came back normal so doc diagnosed fibro (even though he said it was atypical for fibro at that point) because ins co needed a diagnosis. I am really concerned that she won’t make it through school this year and if the pain clinic isn’t any help then I don’t know where else to turn. I’m really hoping that someone here may have some answers. She has been sick for 14 months, but it has come on slowly…how long does it take to show up? She has been tested for Lyme twice but both were negative. She used to love to take the dogs for walks in the woods and we’ve pulled many ticks off her. She’s now getting dizzy a lot and having lots of stomach issues. I just don’t know what comes next. Any help and info is greatly appreciated.

    Thank you,
  2. tonakay

    tonakay New Member

    Have you been over on our lyme board? I have read many post on here with them talking about only one lab doing reliable lyme testing but I can't tell you what lab that is. I'd sure check that out with you saying she's had so many ticks on her.... good luck on your journey, and welcome to our group!

  3. barbinindiana

    barbinindiana New Member

    In my case it first started with pain in my hips. I'd have pain in one hip for weeks or even months. It would eventually stop. Then I'd start with pain in the other hip. Several years later I started having pain in my shoulders and back. Months laters it was moving up into my neck. So you can see it was a graudual thing for me, but I don't think it's this way for everyone.

    Mine got much worse when I developed CFS. In the beginning if CFS, there wasn't a place on my body that wasn't in really bad pain.

    I hope you get some good help for your daughter. The swelling wouldn't be caused by fibro, but that doesn't mean her another pain isn't fibro.

    Someone posted on this board just a few days ago that Lyme test aren't all that depenable. You can get a false negative.


    [This Message was Edited on 08/02/2006]
  4. brisklea

    brisklea New Member

    Make sure they test for both types of lyme and that they test atleast every 6months. Lyme is a hide and seek disease and may not always come out the first test or two. I live in a county of NY where we have the highest lyme rate of the state. Two people I know have the western lyme and it only showed up after a year of testing. One of them a vet insisted it was lyme and her doctor faught with her over it only to be proven wrong!
  5. tandy

    tandy New Member

    I'm so sorry hearing about your daughters struggles~

    My first thought as I was reading your post was "J Rheumatoid arthritis. I did't want to think it,,...but it sounds very much like RA.
    I think the suggestion of checking for Lyme diseases is smart too. Does she have a elevated sed rate??or is any other bloodwork off?
    just tryin to help :)
    Best of luck at figuring all this out~

    Wish I could do more/say more to help~
  6. tonakay

    tonakay New Member

  7. moopsie

    moopsie New Member

    Thanks everyone for the replies. My daughter is on Amitriptyline 35 mg at bedtime and she has started to have dreams again. That excites her. However, the pain isn't much better. She has mostly joint pain...wrists, elbows, knees, ankles, jaw, neck and now spine...but she does have some muscle pain and burning. Doc says not JRA, that has been confirmed by a second opinion with a pediatric rheumatolgist (the one we see locally sees children and adults). However, they just aren't concrete about the fibro diagnosis, could be some other pain syndrome or something else. Daughter does keep an online pain diary at, and I will print and take to the pain clinic when we go. Guess I'll just have to be patient and see how things go at the pain clinic appt. I printed the fm rating scale that was on one of the posts here and she said she is between 20 and 30 on the scale, and that is why I am so concerned about school. She is normally a straight A student but last year we were doing B's and C's. She's going into 8th grade this year, but she was asked by the band director at the high school to march with them this year, but she turned him down because she knew she wouldn't be able to keep up. Her pinky finger locks up often while playing the flute and she has to release it, she's even had that happen with her jaw.

    Guess that's enough rambling. Thanks again for the help and suggestions. I will show them to her and see what we can try.
  8. twitcher

    twitcher New Member

    Your daughter sounds like classic lyme disease to me. Please don't rely on testing results. They are unreliable at best. A trial of antibiotics surely would not hurt her. I would seek a lyme literate MD ASAP. She should be tested at Igenex labs. Look up their website. You can call and order a kit. Her doctor will need to sign for it.
  9. Empower

    Empower New Member

    Mine literally appeared overnight

    I was diagnosed 14 years ago

    I just woke up one morning, and felt this weird stiffness and heaviness in my legs

    Funny, but right now, my legs are the least of my problems

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