New Member

Discussion in 'Fibromyalgia Main Forum' started by Rosesark, Dec 27, 2002.

  1. Rosesark

    Rosesark New Member

    Hello, i am glad that i have found a fibro board to come to. I have been told that i have fibromyalgia and possibly CIPD. I have finally been sent to a rheumatologist and saw him last monday. He told me that he feels that i have fibro and CIDP, but that he wants me to see his neurologist there to see how much of my pain is from fibro and how much from cidp. I have already seen a neurologist in my home town who said i have neuropathy, but did not offer much help, so my GP found a rheum. 2 hours away for me to see. I am glad to finally have a diagnosis on one thing. I have been made to think that i want attention or can't handle pain of any kind by realtives. My sister has fibro and has pain in the shoulder, arm and legs, but still works. I have terrible pain and weakness in both legs, cry from pain in lower back and hips. i also hurt to the touch across the middle of my shoulders, upper arms and can not stand to have any pressure on my calf muscles and thighs. I have been having trouble since june of this year and had to quit work due to the weakness in my legs. I have felt at fault, felt like a wimp, been angry, depresed, felt very isolated and have had mood swings like crazy along with all of a sudden having night sweats. I am trying to read as much as i can on this and hope that the rheum. doc will be good to work with. I hope to learn a lot from you guys and to just have someone else who can understand where i am coming from. It's hard when you don't really have anyone around you who REALLY KNOWS what you are going through. It is also scarey and i wonder if it will get worse or what. Anyway, glad to be here finally. Rose
  2. LisaMay

    LisaMay New Member

    You have come to the right place. It was a blessing for me and I hope it will be for you too. I'm sorry to hear that you've had to stop working. I had stopped working for the winter, but came across a job that might fit my limitations. All I can do is try.

    I think being told you have any illness causes a person to go through several stages of emotions. The key is not getting stuck in the web. It takes all my strength to get through some days.

    Better days are ahead. Lisa
  3. Kathryn

    Kathryn New Member

    but glad you found this source of information and support. Just about any questions that you have can be answered here. When you get a chance, fill out your profile and share what information you are comfortable in making public, like what area of the world you are in, your age group, etc.
    Kathryn
  4. 1maqt

    1maqt New Member

    Welcome to our world!! Night sweats, dyslexia, pain and suffering: we all know what it is like......especaaiallly if noboddy listens.

    You won't find that here. This board is very kind and understanding. It took 28 yrs for them to find out what I had. Have been told so many demeaning things about why I feel the way I do.

    Knowledge is your friend, and faith is your strenth, we will be a support. Welcome from 1maqt
  5. little

    little Member

    Welcome, I can related to some of your anger and pain.Also other peoples reactions. I was in bad emotional state before I came here. I am more calmer now. I have learned so much by coming here. I used to panic about every new thing that I experienced with this DD. Now I just come here and see if anyone else has had it, and usually someone has. It is a great place to come.I have fund so much information. I find more here then at the doctors. Once again Welome aboard and have a great day.

    Gail
    [This Message was Edited on 12/28/2002]
    [This Message was Edited on 12/28/2002]
  6. pam_d

    pam_d New Member

    You are doing everything that you should be; reading & educating yourself on this illness is very useful & empowering at the same time, gets you in control instead of the FM! You are recognizing that you feel all the stages that we go through when we are diagnosed with a chronic debilitating illness: anger, grief, depression, and I swear we go through even tougher times with this because we have an "invisible illness" that many around us can't see, so therefore don't believe, don't understand, or disregard our pain. I'm glad you are here, you'll find out so much about this illness & hope people cope, and what we all do to treat our symptoms & underlying causes---and you'll find, we're all different in how we deal with this day-to-day, which is very educatonal in itself---there's a lot to learn here! And people here are very supportive---after all, here are folks in the same boat who actually know what you are describing or feeling. So come here often!

    Welcome Hugs,
    Pam
  7. Rosesark

    Rosesark New Member

    Thanks for the responses. I know i will feel at home here, as i see that all of you are always ready with a kind word and advice or just an ear, and thats what i really need right now. I will see my Rheum. for the second time next week and will let you know what he has decided about me. I am enjoying reading this board. Rose
  8. Shirl

    Shirl New Member

    Hi Rose, welcome to our world. Sorry you are having all those problems with others not understanding. That does go with these illnesses. If you don't live with this pain, you truly can't really relate to how it feels.

    I have often told famiy/friends, it feels like an absessed tooth, only its in my back, shoulders, hips, chest, etc!

    Sometimes I get a shocked look from them! But to me, that is the best way to descible the pain of Fibro. The 'Mac Truck' getting hit by one, will make then at least try to associate with the idea!

    All the anger, depression(not true clinical depression) comes with it too. We mostly all go through this.

    As for those night sweats, they are horrible, when you do get to sleep, they wake you up with a pounding heart. No one seems to know what causes this either. Could be our bodies reacting to the pain.

    Does it get worst? Well there are two schools of though on this one, most say no, but some say yes. I think it depends on how you handle the illness.

    Mine got worst, then I found this board, and malic acid and magnesium, ZMA for sleep and I am so very much better than I was years ago as far as the pain is concerned. I do have 80% of my life back now.

    I have been dealing with Fibro for twenty years . You also have to factor age in how you feel, when you get older most of us can't handle the pain like when you are very young.

    A lifestyle change, an attitude change are definately 'musts' to get a better quality of life.

    One thing is certain, stress and not sleeping are two of our worst enemies. I learned that the hard way!

    Glad to have you join us, and I know you will fine a better quality of life here, lots of informed, friendly, compassionate people that are always willing to help if they can, if they can't help, at least they can relate, and will listen to you and make you feel better just knowing you are not alone.

    Shalom, Shirl





  9. tandy

    tandy New Member

    Sorry to have you be one of us~Its very hard on you-I know.I was DX with fibro about 10 yrs ago.I have the same low back,hips,upper back,shoulder pain.Its exhausting to say the least.I also have weakness in my legs too,in fact I had a EMG done to see if there was wasting of the muscle.That came out fine...other than having a high Sed rate all my tests have been normal,but I certainly don't feel normal. This may be a repeat but for any subject or even a symptom your wondering about,you can type it into the search posts box and any/all posts regarding that subject will come up.Also theres so much info in the library here,alot of articles and new treatments being available.look around and enjoy!!!I'm glad to meet you Rose.
    Warm regards,
    Tracey