New member - can anyone relate to my

Discussion in 'Fibromyalgia Main Forum' started by twjen, Nov 19, 2002.

  1. twjen

    twjen New Member

    Hi, i was glad to find this site. Try to make my story short. In spring 2001 i started having low grade fevers with some fatigue,(after I had this rash called pityriasis)
    and joints were making strange gushing, grinding, popping. By fall 2001 all my joints hurt, even feet. In Dec.2001 I started having diareah everyday. Told my phyciatrist and he said to tell reg. Doc. I only had this doc.(male)for a few months. (old doc.moved). He sent me to a rhuem. who did some blood tests and a single xray of my neck. Found blood normal, but degenerative disk desease in neck and tendonitis in right shoulder. and sent me back to reg. Doc. Reg. Doc. said I have too many complaints and he threw a fit and wanted me under phyciatric care. When I told him I was for 7 years and that my phyciatrist had offered to write him a letter saying I was mentally stable, then reg. Doc yelled like a madman and said he refused to treat me. Anyway, I found a new Doc (female) this last spring. I went to a few visits p.t. as my symptoms improved nearing warmer weather. Over the summer I felt alot better except for the diareah. Had a colonoscopy done in Sept. that showed colitis. As the weather grew colder this fall my joint pain has come back with a vengence. My neck joint and muscles in upper back being the worst, lower back, and other joints also. Along with "fuzzy head", short term memory, (a couple of embarring moments like writing way off dates on checks, forgetting aspects of my job, cant find keys when they wer in my hand, etc) Anyway i called my phyciatrist and he said to tell reg dr. everything. I told her almost everything,
    I was even ready to accept her saying that I had ptsd or something, she didnt. She didnt even treat me like i was nuts at all. She listened to me, checked some tender points, and said she thinks I have fibromyalgia and prescribed me elavil. I told her i didnt want pain pills cuz I dont want an addiction problem. She said that the pain i feel in joints is actually connective tissue and probably not the joint itself. ALthough muscles hurt in neck and upper back, the rest sure feels like joint pain and the joints make weird gushing and crackling feelings and sounds. Does anyone else get this also? ALso,before going to Dr. I tried convincing myself it was in my head, i tried ignoring it, positive thinking, pushing myself harder, meditating, etc. and it didnt go away. I have missed a few weeks of work, but havent really rested cuz I feel so guilty about missing work even though I dont get paid. I feel worse this time now than I did at the end of last winter. I also get chills and wierd fuzzy feeling inside like I have the flu. Anyone else get this? Wake up shaking sometimes also, like when you get woke up in the middle of rem sleep unexpectidly. Im not afraid that Im dying of anything, its just so weird that an undetectable illness can make anyone so sick feeling and arthitic, etc.
    I dont want to tell anyone really, afraid they will think Im nuts. ALso, there are times when all of a sudden I feel better for a couple hours, not as much pain, a burst of energy. I get excited that "Im cured" and think it was all in my head "YEAH", but then it all comes back again. Does this happen to any of you? Im not dwelling, just really would like to know if anyone can relate. I can accept that it is fibro. if it is, I just wonder if others are like me.
    Most of what I read from people talks about muscle aches mostly, but alot sure seems like joints. Sorry so long a message, guess I have so much to say because I havent had anyone to talk to seriously about all this. Thanks for reading and response. Jennifer

    [This Message was Edited on 11/20/2002]
  2. twjen

    twjen New Member

    Hi, i was glad to find this site. Try to make my story short. In spring 2001 i started having low grade fevers with some fatigue,(after I had this rash called pityriasis)
    and joints were making strange gushing, grinding, popping. By fall 2001 all my joints hurt, even feet. In Dec.2001 I started having diareah everyday. Told my phyciatrist and he said to tell reg. Doc. I only had this doc.(male)for a few months. (old doc.moved). He sent me to a rhuem. who did some blood tests and a single xray of my neck. Found blood normal, but degenerative disk desease in neck and tendonitis in right shoulder. and sent me back to reg. Doc. Reg. Doc. said I have too many complaints and he threw a fit and wanted me under phyciatric care. When I told him I was for 7 years and that my phyciatrist had offered to write him a letter saying I was mentally stable, then reg. Doc yelled like a madman and said he refused to treat me. Anyway, I found a new Doc (female) this last spring. I went to a few visits p.t. as my symptoms improved nearing warmer weather. Over the summer I felt alot better except for the diareah. Had a colonoscopy done in Sept. that showed colitis. As the weather grew colder this fall my joint pain has come back with a vengence. My neck joint and muscles in upper back being the worst, lower back, and other joints also. Along with "fuzzy head", short term memory, (a couple of embarring moments like writing way off dates on checks, forgetting aspects of my job, cant find keys when they wer in my hand, etc) Anyway i called my phyciatrist and he said to tell reg dr. everything. I told her almost everything,
    I was even ready to accept her saying that I had ptsd or something, she didnt. She didnt even treat me like i was nuts at all. She listened to me, checked some tender points, and said she thinks I have fibromyalgia and prescribed me elavil. I told her i didnt want pain pills cuz I dont want an addiction problem. She said that the pain i feel in joints is actually connective tissue and probably not the joint itself. ALthough muscles hurt in neck and upper back, the rest sure feels like joint pain and the joints make weird gushing and crackling feelings and sounds. Does anyone else get this also? ALso,before going to Dr. I tried convincing myself it was in my head, i tried ignoring it, positive thinking, pushing myself harder, meditating, etc. and it didnt go away. I have missed a few weeks of work, but havent really rested cuz I feel so guilty about missing work even though I dont get paid. I feel worse this time now than I did at the end of last winter. I also get chills and wierd fuzzy feeling inside like I have the flu. Anyone else get this? Wake up shaking sometimes also, like when you get woke up in the middle of rem sleep unexpectidly. Im not afraid that Im dying of anything, its just so weird that an undetectable illness can make anyone so sick feeling and arthitic, etc.
    I dont want to tell anyone really, afraid they will think Im nuts. ALso, there are times when all of a sudden I feel better for a couple hours, not as much pain, a burst of energy. I get excited that "Im cured" and think it was all in my head "YEAH", but then it all comes back again. Does this happen to any of you? Im not dwelling, just really would like to know if anyone can relate. I can accept that it is fibro. if it is, I just wonder if others are like me.
    Most of what I read from people talks about muscle aches mostly, but alot sure seems like joints. Sorry so long a message, guess I have so much to say because I havent had anyone to talk to seriously about all this. Thanks for reading and response. Jennifer

    [This Message was Edited on 11/20/2002]
  3. BonBons

    BonBons New Member

    I'm sorry you had such a rotten doc. I always feel crazy, too, when I tell my doctor all of my symptoms, but if you don't, you won't have their support. I still don't - the older you get the harder it is to get them to listen. Someone mentioned saying "well, I guess since I can't get any help from you; I'll need to speak with my attorney". I'm sure I didn't quote exactly right. Yes, I have peaks and lows, right now it's cold so very low. And even with severe endometriosis I would "forget" I had it, and so did my doctor. Take care of yourself; you'll find many people here who can relate and lots of good information. BonBons
  4. Shirl

    Shirl New Member

    To the group Jennifer, I think most of us can relate to your story. We have been told we were crazy, lazy,etc. so many times by doctors, family and friends.

    Glad you found our board, and hope we hear from you often, you will fit right in here. Lots of terrific people that can relate to how you feel, and when you are down we are here for you too.

    Again, welcome!

    Shalom, Shirl
  5. Nikki

    Nikki Member

    Welcome . . . I'm fairly new myself.

    For several years now I've thought I had FMS, but didn't have the pain level that most people talked about . . . until this summer. My pain started slowly in the lower half of my legs (shin splints and tendonitis . . . w/no injury . . . it got so bad I had difficulty walking more than 15 minutes), then the pain quite suddenly moved into my entire body . . . feet, knees, thighs, hips, hands, arms, shoulders, upper back and neck. I've been to PT, MT, and today I went to a new Dr. (an internist) who has and treats FMS. I had pain in almost all the tender points . . . pain in places I did not think hurt until she applied pressure.

    I have pain in muscles and tendons, but I also have the popping and crackling in my joints. I feel as though other people can hear it (maybe they think I'm made out of bubble wrap). I really believed I had really bad arthritis . . . but my arth workup came back negative. I stay cold most all the time. But the odd thing is that during the summer you'd think the heat wouldn't bother me as much as it bothers my hot natured husband . . . when in fact if it's really, really hot I'm bothered much more. Can't stand the heat or the cold (i'm the baby bear who wants it just right).

    I think the shakiness must be too much adrenaline (sp?). Prior to being dx'd w/MVP, I felt this way all the time until I was put on Inderal. Now, my regular dosage is not doing the trick anymore. I hate that feeling.

    I also never know how my day is going to be until I get up in the a.m. and even then it can change from better to worse and worse to better (which is better, right?!?).
    I can have a horrible night and a pretty good day and vice-versa. Go figure. It's very puzzling . . . so if you're "nuts", it won't be long before the white coats come after the rest of us.

    TTYLater..................nikki
  6. kellym

    kellym New Member

    I can relate to you very well! I have many of the same symptoms you do-low grade fever, weird joint stuff & popping and aching, and the times when you feel o.k. for a little bit, chills, diarrea, waking up in a panic, all that stuff. Sorry you've had bad luck with doctors, but if you are ever able to come to Houston, TX, check out Dr. Patricia Salvato. She will NOT think you are crazy, and she will help you.