Doctor got to FM finally

Discussion in 'Fibromyalgia Main Forum' started by lrgatplay, Jan 11, 2007.

  1. lrgatplay

    lrgatplay New Member

    Doc called about 9PM last night to tell us the latest blood test he ordered had ruled out RA. Last visit when we again mentioned the joint/muscle pain, he said that symptom wasn't West Nile related and ordered a blood test without even telling us what for. Though I assumed it was for RA. Anyway during the call he admitted he thought that it was FM. And of course not directly treatable.

    He did let us try amitriptyline for sleep and pain but its early yet to determine if that is helping. Jordan says it helps him sleep better but has been groggier and irritable during the day. He likes the wild and crazy dreams he's been having though. We are also doing L-tryptophan, GABA w/B6, and Melatonin for sleep.

    I was still feeling my way with doc about bringing up the CFS/FM thing. West Nile diagnosis got us off the hook with school and got him a tutor (pending). At least he hasn't gotten the "there's nothing wrong with you routine". Only a lack of understanding. I got that before my Myasthenia diagnosis years ago.

    I'm still confused though about the 'differences' between CFS and FM. I was sure Jordan has more in common with CFS than with FM. Maybe both?

    He has the following symptoms. Let me know what you all think.

    Fatigue
    Hypersomnia 12+ hours
    Headache constant
    Sorethroat constant
    Pain in muscles and joints of legs and arms.
    New pain in his wrists
    Neck and shoulder pain constant
    Recurring sinus infection
    Allergies new and worsening
    Ear pain
    Acne (he is 15)
    Nausua
    Dizzyness when rising from laying down/sitting.
    Worsening symptoms following a shower
    Blurred vision
    Sensory overload
    Brain fog
    Inability to concentrate
    Post exertional malaise
    Adrenaline rushs
    Hypermobility, joint cracking and popping, especially in the neck. snap/crackle/pop


    Two times tested a.m. cortisol. 1st time below normal at 2.
    2nd time 'low normal' don't know the number.

    Anyway, I'd appreciate some of your thoughts.
    Or does it really matter to define the difference?
    You know what I mean.

    Thanks
    Lisa and Jordan





  2. Tawra

    Tawra New Member

    I've been sick 18 years now. My mom, brother (14 at the time) and I all came down with the "flu" and just never got well.

    We all have CFS but I have FM also. About the only difference is that with FM you have horrible muscle pain and huge knots in the tender points. Also, exercise helps FM feel better but it makes CFS feel worse.

    I'm in a catch 22 with the exercise. My muscles don't hurt as much but then I'm in bed the next day from being worn out from my CFS flare from exercising.

    BTW, a shower makes me worse too! I can almost not even take them.

    I'm sorry he's sick. We think our 7 yr. old daughter may have FM. Of course the doctor's won't diagnose it at her age because "there's nothing they can do".

    I feel for you from both sides, being the parent and a patient!
    Tawra
  3. springrose22

    springrose22 New Member

    Like Wake said, it sounds more like CFS than FM, but quite honestly he may have both. The CFS symptoms seem to predominate though. Wake had some excellent ideas, bless her heart. I am so sorry that he is so sick. My heart goes out to you all. Marie
  4. lrgatplay

    lrgatplay New Member

    WakeMeUp
    Thanks for the prayer.
    We are trying to eliminate MSG and processed food as much as possible, but could do better. I'm relearning how to cook and shopping the outside of the store.
    Haven't elimated all the bread or dairy yet. I did take him off regular formulas as an infant and put him on the soy version. He spit up a lot his whole first year.
    Allergies seem to be very seasonal but more intense and with that more sinus problems lately. I have quit spraying so much air freshener and such, but haven't checked on the other cleaning products. Wouldn't you be able to tell right away if something bothered you?
    No hospital, just the usual doc office tests most of which came back normal.

    Tawra
    2+2=5 a Wichita person. Hello
    I am such a spaz. L,O,A,D. I posted on this.
    Sorry about your daughter as well. Its easier to tolerate our illnesses than the childrens.
    I've got the map of tender points and maybe will see if he has any.

    Prickles
    Thanks again for the coping tips.
    Was that you said to hang your head over the edge of the bed? We also briefly tried the TV static. He felt 'stupid' starring at the TV. oh well, we can try again. I'll print your list for him. He needs to take charge of this for himself just a little bit.
    We got new foam pillows but he is 'attached' to his old pillow. Comfort zone. Needs to try the new one as I slept so good I didn't know what day it was when I woke up.
    My sis also got him one of those sound machines for xmas. He likes the ocean sound. Reminds him of his uncles in Myrtle Beach. Can't get him into the Epsom salt bath. ?

    Springrose22
    I guess even if it is more CFS than FM, my just knowing that the doctor has acknowledged it is a big relief.
    I hear your Canada cold will be hitting us tomorrow. We haven't been in the icebox yet this season. I hate cold.

    Thanks everyone, this site is so helpful.
    Lisa