New to board, help would be appreciated

Discussion in 'Fibromyalgia Main Forum' started by Katee32, Apr 11, 2006.

  1. Katee32

    Katee32 New Member

    Hi all, I'm new here and have spent the last two days reading all your stories, and they break my heart. I haven't been diagnosed but have had two different Dr.s bring up Fibromyalgia or Rheumatic disorders. I've been doing the going from Dr. to Dr. for almost three years now. Lately I've been feeling worse with each day. I wake up in the morning feeling like I've been run over by a truck. Every part of my body hurts but it does get a little better after I've been up and moving for awhile. I'm so tired and I run fevers every afternoon where I feel like I've just come down with the flu and it makes the aches and pains worse. I'm lucky in that I'm a stay at home mom and don't have to sit through work each day, I don't know how some of you are able to do it, very strong people on this board. I do have three young sons and a ton of housework and general things that need to get done each day and it seems each day I fall a little farther behind, and the guilt is starting to eat away at me.

    This all started three years ago after the birth of my son. It started with daily headaches and neck stiffness that progressed to my shoulders, wrists, knees, ankles and what feels like almost every muscle in my body. No matter how much sleep I get, I'm always tired. I want to wake up one day and feel refreshed. It's a feeling I haven't felt in years. My husband is great and on the weekends he lets me sleep in and sleep as much as I need to during the day but it doesn't help and the tiredness never leaves. I have the daily fevers, aches and pain all over my body, daily headaches and trouble sleeping. I've been on many different sleep aids. My PCP figured that my insomnia was playing a role in all of this and if I would sleep better it would help but so far it hasn't and it's been over two years. I've been to the neuro, liver specialist/gastro for a separate problem and a pulmonologist/sleep specialist recently who suggested fibromyalgia/rheumatic diseases.

    I have a family history of rheumatic disorders on both sides of my family so I'm not sure if that's why he suggested it or if he really believes it could be. There's rheumatoid arthritis on my mom's side and my dad has polymyalgia rheumatica/fibromyalgia and so do his cousins and some of their children. I have had blood tests in the past that showed a high sed rate, positive ana test, I also had a positive RF test but X-rays showed nothing.

    The pulmonologist seemed shocked I had yet to have a diagnosis. Am I doing something wrong, not being aggressive enough? Or by my symptoms do I not really seem to fall into any of the auto-immune disorder categories and my Dr.s so far are right on, in the no diagnosis?

    Any help would be appreciated, and good luck to everyone.

  2. taniazcatz

    taniazcatz New Member

    I have FMS and lupus ( both for 6 years now) I also had a baby 11 months ago. When I read your post about the fevers and head aches and neck stiffness, I could've easily written that right after I had my baby. It took docs almost 2 years to properly diagnose me. That was SOO frustrating. I am also a stay at home mom, but my work load is alot lighter than yours! I only have 1 child and it sometimes seems like I will never get caught up! SO Bless you for doing all that you have to do to take care of those 3 precious ones! I have insomnia also and Thank God I have a great Doc who gives me flexeril to take so I can sleep and good pain meds otherwise I couldn't make it. I'm suprised that you dont have a diagnosis. Being a former nurse, you certainly seem to have FMS. I doubt Ive been much help, we're here if you need us. Ive found a great deal of support and advice on this site. Take Care.

    Tanya
  3. kdeenak

    kdeenak New Member

    I am so sorry you have been dealing with this. I know how you feel, going from doctor to doctor with no diagnosis. I dealt with that before finding I had fibro. It is frustrating. I am glad your husband is understanding.

    Your symptoms do sound a lot like fibromyalgia, but with the high sed rate, positive ana test and positive RF, I would be inclined to think you have some other rheumatologic disorder. You also have a really strong family history. You didn't mention a ever seeing rheumatologist, so if you haven't seen one, I would get referred to one and make sure my records, including that lab work, are sent to him. You could have rheumatoid arthritis or lupus, etc., etc.

    Just because the X-rays weren't fruitful, I still would go the rheumatologic angle. If you don't have any of that, he can still diagnose you with fibromyalgia and treat you for it.

    Good luck and welcome!

    Hugs,

    Deena

    [This Message was Edited on 04/11/2006]
  4. NyroFan

    NyroFan New Member

    Katee32:
    I would love to say your experience is unique, but unfortunately it is not. I also had to go from doctor to doctor until one linked all of the symptoms to FM/CFS.

    Welcome and I hope you learn much, as I do each day.

    Do not worry and get that rest!

    NyroFan
  5. jakeg

    jakeg New Member

    Please don't feel guilty about not getting it all done. I was dx in june of last year and now try and keep the house for the family.

    Now I know what my wife was always talking about. My kids are older and still there is alot to be done every day, I don't know how other people do it with full time jobs. It's a constant always, never ending duty.

    I do manage though, this DD realy just sucks the life out of you. I'm sure that everybody here would agree to that. Just pace yourself and what gets done gets done tomorrow is another day.

    I take frequent breaks and that helps alot. I also found that if I sleep during the day that sleeping during the normals time is out of the question, so I end up fighting it till the evening hrs.

    Thank god my doc sees the pain that I'm in and rxs meds for it. With out the rxs I wouldn't be able to function at all.

    Take it easy on your self until you can find a pattern that works for you.

    By the way Welcome to the board.

    Jake
  6. Shirl

    Shirl New Member

    You are in good company here, with lots of people who know from experience what you are going through.

    Hopefully you find some relief soon, and the members here will be more than willing to help you all they can by their own experiences.


    Again welcome, and sure hope we hear from you often, and try to rest inbetween your work at home. Its the one way of getting things done.


    Shalom, Shirl
  7. Katee32

    Katee32 New Member

    Tanya an 11 month old is probably more work than all three of mine combined. They're young to me but my youngest is 3 so it is easier than dealing with a baby! We tried flexeril early on but had no success with it.

    Thank you everyone, I know I probably shouldn't feel guilty but after watching how my family dealt with my father I guess it makes me guilty/scared. When my dad was at his worst he didn't get out of bed for almost two years and didn't have a diagnosis at that point. My mom started the steps to see if she could have him institutionalized because she thought he was crazy.

    Although rheumatic disorders run in her family she was never afflicted so she just sees everyone as being weak. After my dad was finally diagnosed she decided he was just a drug addict and tried to get him into a treatment program. She already does the quit being lazy, there's nothing wrong with you, you're just going to turn into a drug addict like your father, with me. So even when my Dr. prescribes things like tramadol or other things for the pain and tells me I need to take them I can't without feeling guilty and I'm not sure if the pain or the guilt is actually worse. I feel better physically but worse mentally and then I spend the rest of the day beating myself up for having to rely on pain medication.
  8. no1buddybear

    no1buddybear New Member

    Hope you will find the support you need here. everyone seems really nice so far!
    p.s. i was interested to hear you started off with headaches too.

    All the best,
    no1buddybear
  9. kdeenak

    kdeenak New Member

    I am so sorry to hear that. That is a terrible thing to have to go through for you and your father. A disease is horrible enough without having to deal with guilt over taking necessary pain medication. I would imagine the guilt makes the pain WORSE and that is pretty counter-productive.

    I bet you saw this from an early age too so it is easy said than done when someone says, "just stop feeling guilty". I want you to know that you aren't doing anything wrong by taking pain medicine when you hurt. You are by no means an "addict", nor are you going to become one by taking pain pills when you need them. It doesn't sound like you are taking more than what your doctor has prescribed, or you take several different kinds of pain meds/narcotics a day. So you don't have a reason to feel guilty.

    If I were you, I wouldn't discuss my health with my mother if she isn't going to be understanding and is going to me feel guilty. It is just going to make you feel worse.

    I am sorry I can't be more helpful. Hang in there.

    Take care :)

    Deena
    [This Message was Edited on 04/11/2006]
  10. Cromwell

    Cromwell New Member

    I am so sorry you are in such pain each day.


    It does read a lot like FM, but make sure you get all the tests to rule out other conditions. The fever thing bothers me. Have you had recent blood work done to look at white cells?

    None of my doctors in NY ever dx'd me with Fm, only in UK(as ME) and WA State. I don't thoink docs in New York State think there is such a disease as FM sometimes!!!


    What meds are you taking to help with the stiffness. A hot shower helps mine. This DD is the pits for sure.

    If it walks like a duck, looks like a duck and quacks like a duck----then it is a duck usually, so a dx is just an opinion really in this case. Maybe when you fill in your bio you will link with others here who know good docs in your area. Sure wish there were some around here!!!!


    Love Anne C
    [This Message was Edited on 04/11/2006]
  11. Katee32

    Katee32 New Member

    I do try not to talk to my mother about it, but we live next door to each other and she's one of those people that are constantly into everyone's business.


    Thank you Anne. I have had a few elevated WBC tests in the past few years with no known cause for the elevation.
  12. jeanann

    jeanann New Member

    I hardly talk with my family about this disease. My oldest daughter has it now also and we are a comfort to each other. I find that it just made me feel worse talking with folks that dont understand so I dont. Folks that do i do talk to them. This board is a good place to be able to get the support you need.

    Actually my oldest daughter was so MEAN to me when i got sick. Now she has it too.

    Sorry you have to have this thing. You will find so many wonderful folks on this board. you will find some solutions and options to try to make you feel better. When I firts got here I wanted to beat this thing and I wanted to be cured. Well that was the disappointment. Today i am grateful for the knowledge of what helps me manage this illness.

    Love
    Jean ann
  13. Katee32

    Katee32 New Member

    Thanks for the welcome.

    Sorry to hear about how your oldest daughter treated you and her also being affected now.

    Good luck to the both of you in this battle.

    Hugs

    Kate