Newly Diagnosed- need feedback please

Discussion in 'Fibromyalgia Main Forum' started by adobbins, Aug 22, 2002.

  1. adobbins

    adobbins New Member

    Hi. I'm new to the board and newly diagnosed with FM, after almost one year from first having symptoms. I was hospitalized in April with severe chest pain, radiating pain to jaw, arms and hands; weakness, etc. Of course, at first they thought it was a heart attack. And so on the story goes......

    What I want to know is has anyone had problems with a pressure inside your head? It's really hard to describe, but that's exactly how my symptoms first started. For months, until April of this year, I had this pressure in my head which started at the base of my skull. The pressure would seem to come and go and would grow more intense at times. I had memory problems, concentration problems, speech problems (which would fit the "fibro fog"). But the pressure is the thing I can't figure out. Sometimes it radiates to all parts of my head and may/may not turn into a migraine. I have trouble driving and vision problems, also in my left eye the reds and yellows are washed out.

    I have had CT, MRI in April and many labs. Docs have ruled out MS and Lupus, which was first thought. CT noted moderate brain atrophy, which I am not pleased about, but doc didn't seem to be bothered by. Sed rate and CRP were elevated, but not severely. One of the adrenalins was high, the norepinephrine, which doc said I should have tested again later.

    Anyway, sorry to ramble. But you all know the story....going from doctor to doctor and no one being able to help. I have been on low doses of Elavil and Flexeril, as well as Celexa for a month and I have gotten no better with the pain or any symptoms, it seems. The rheumatologist I just saw (took me three months to get in to see him) says he can't help me and the neurologist told me to come back in three months. Threee months is like a LIFETIME to someone who's list of symptoms is like a grocery list for a family of four! Sorry to be so long, but I just need some support and feedback. I evidentally have a severe case. So now I'm looking for a pain management doc, at the suggestion of the rheumatologist. Thanks for listening.

    AJ
  2. adobbins

    adobbins New Member

    Hi. I'm new to the board and newly diagnosed with FM, after almost one year from first having symptoms. I was hospitalized in April with severe chest pain, radiating pain to jaw, arms and hands; weakness, etc. Of course, at first they thought it was a heart attack. And so on the story goes......

    What I want to know is has anyone had problems with a pressure inside your head? It's really hard to describe, but that's exactly how my symptoms first started. For months, until April of this year, I had this pressure in my head which started at the base of my skull. The pressure would seem to come and go and would grow more intense at times. I had memory problems, concentration problems, speech problems (which would fit the "fibro fog"). But the pressure is the thing I can't figure out. Sometimes it radiates to all parts of my head and may/may not turn into a migraine. I have trouble driving and vision problems, also in my left eye the reds and yellows are washed out.

    I have had CT, MRI in April and many labs. Docs have ruled out MS and Lupus, which was first thought. CT noted moderate brain atrophy, which I am not pleased about, but doc didn't seem to be bothered by. Sed rate and CRP were elevated, but not severely. One of the adrenalins was high, the norepinephrine, which doc said I should have tested again later.

    Anyway, sorry to ramble. But you all know the story....going from doctor to doctor and no one being able to help. I have been on low doses of Elavil and Flexeril, as well as Celexa for a month and I have gotten no better with the pain or any symptoms, it seems. The rheumatologist I just saw (took me three months to get in to see him) says he can't help me and the neurologist told me to come back in three months. Threee months is like a LIFETIME to someone who's list of symptoms is like a grocery list for a family of four! Sorry to be so long, but I just need some support and feedback. I evidentally have a severe case. So now I'm looking for a pain management doc, at the suggestion of the rheumatologist. Thanks for listening.

    AJ
  3. Cheka

    Cheka New Member

    Sorry to hear your symptoms are so severe... but you've definitely come to the right place for support, info and suggestions!! I'm very new to these DD's and don't feel "qualified" to answer your questions but I'm sure others will be along shortly to give you their ideas.
    Just wanted to say "Hi" and welcome you to the board!!!
    Debbie
  4. metoo110

    metoo110 New Member

    don't ever feel like your rambling or writing too much, that's what "this" is all about here. being able to vent, and asking ?'s, and a whole list of others.

    sounds like you've got alot on your plate. i don't know if this is the same as yours, but i get sounds in my head. very hard to explain, but it seems like it's a pressure thing. i'll move my head one way and it will start up. maybe something to do with the blood vesels. it kind of sounds like the music in a movie. anticipation noise, right before something scarys going to happen in the movie. writing this makes me sound crazy, it very hard to explain. i haven't seen anybody about this so i can't tell you what they said . it just started a month or so ago, and it doesn't happen all the time.

    someone will be along to give you some input. it sounds like your taking care of yourself by going to the dr's and having all those test done.

    wishing you the best
    donna
  5. adobbins

    adobbins New Member

    Thanks for the feedback so far. I was really just wondering about the pressure thing and if anyone else has had it. It just seems like that was the beginning of all my troubles and they just kept getting worse, with new symptoms almost every month. (Sigh) It's very frustrating, especially since I can't seem to find a doctor who will really listen and try to help me. I'm getting really discouraged. Thanks.

    AJ
  6. GEC

    GEC New Member

    Welcome AJ!
    I cannot relate to the pressure you are describing, but i certainly can relate to the concentration and memory problems you are experiencing. I am 26 and have fibromyalgia. The best thing for me was learning about this sickness, and maintain a positive attitude. it is very difficult, but it is what works for me. take care and i hope you get the answers you need!

    gail
  7. tired42long

    tired42long New Member

    Hi AJ, I am new here too, just spent last 18 months doing all the same stuff you have with docs. I had (and have) the same type of (cardiac-like) stuff and also the pressure. I ended up with really bad headaches at back of head...did the brain scan and stuff....nothing showed up>HAHA!! I told them at onset of my illness that it felt like so much preasure in head, almost like someone was hanging my upside down. along came vision changes, and even hearing changes. I am in the same boat...I had to wait months for every specialist to see me...3months for cardio....another one for the Rhuemy. It was a year before they actually had me see a Nuerologist one on one to see about a tilt table test and also rule out myasthenia. Then finally after 15 months to see a gastro doc about stomach pains. I think I was just put off after initial dx because they knew it was CFS and had no cure.
    I also worry about the pressure and have lots of pain in upper back muscles and spine. I wonder if the inflammation problems due to messed up immune system have to do with the pain and pressure issues. I don't know, but it is rotten and scary and is hard to deal with...I have 4 kids at home age 2-15 and it is quite the challenge to get through the days. Don't be afraid to ask your Rheum. ANY questions. I wish I had asked more. Eileen
  8. MicheleF

    MicheleF New Member

    I also can't help you, but wanted to welcome you and let you know there's lots of info in the library as well. When they dx'd the fms, was the point where you feel the pressure right near or on the tender points your dr. pressed on?

    I feel your drs both failed to address your issue...did they say Why they weren't concerned? In my humble opinion, neither of these drs. seem very compassionate...3 months?? I think I'd be looking for another doctor.

    Best wishes & hope it helps a little to know that many people here have gone thru doctor/dx issues and understand the frustration you feel. Michele
  9. Tennessee

    Tennessee New Member

    Hi,i am new here also and searching for answers.I have had a CT,tons of blood work,an a few other tests.I do get pressure in my head.Now a days it's almost constant and it's been so bad that i've just run out the house,thought my head was gonna explode.I'm not real sure why i run out of the house,reckon it seemed like the thing to do at the time.I also get a loud humming,sometimes ringing or hissing,it don't seem to be so much in my ears as it does my head and it is very scary,expecially when you have someone lookin at you like your crazy tellin you they can't find nothin wrong with you.The pain always starts in the back of my head,right above the hair line and sometimes moves to the front,both sides,one side or the other,and sometimes to the front.The only thing that was ever found,and this was by an er doc,is they found what may or may not be something that possibly resembled a teeny,tiny anurism(not sure on spelling)that had bursted,and then he said it may not be that at all,that it could have been there for days months or even years and certainly would not be causing any of my symptoms.I know i did'nt help much but i can sympathise.
  10. blast

    blast New Member

    Nice to have you here.
    I, also, have extreme pain in my head some days where it feels as if my head is going to explode. I have to lay down and close my eyes and hope it doesn't turn into a migraine.
    Can you take something for the pain when you get it? It does help you know. Doesn't sound like you are on much medication, so that's something I would recommend to your dr..
    The other thing about the elevated blood levels, always have those test repeated within a couple weeks to a month, not three months! Often bllod tests are wrong, and come back absolutely normal. I have had this happen often.
    So don't worry until you get them re-tested.
    Take care and let me know your resluts,
    Blast
  11. adobbins

    adobbins New Member

    Thanks so much, guys! It's good to know I'm not alone. No, the last two docs didn't seem to care. In fact, the rheum. laughed at me when I asked him a question about my eyesight and told me I was slow to respond to his questions, which suggested to him that I was depressed. He is the one who diagnosed me with FM. The other docs suggested FM, as well, when they couldn't find anything else to diagnose. I was in hospital in April and it's now August and no one wants to repeat ANY tests or try anything else to help me........like the neuro and rheumo I have seen since then have done so much! I mean, for real! I think it's like you say, they rule it as FM and then don't want to bother with us. It's not fair, but I guess that's life. Anyway, thanks so much to you all! It really helps to have others who understand. :) I will stick around and I wish you all the best in managing your own symptoms.

    AJ