Please, help a friend.....

Discussion in 'Fibromyalgia Main Forum' started by kaymac1, Jul 22, 2003.

  1. kaymac1

    kaymac1 New Member

    Please folks, can you pass on words of advice, opinions, encouragement, help, comfort to a dear friend of mine who also has FMS.

    She is so down and depressed and frustrated. She was diag with lupus for years before other doctors ruled it out and decided she had FMS only. She suffers bouts of fever and major sleep problems. She has been thru multiple docs and specialists and medications and still can't sleep, and still has bouts of fever that goes up and down in one day.
    This latest sleep doc told her he didn't think all this was due to FMS, but something major, and needed further testing, possibly bone marrow, MAYO clinic, etc.....

    Can others relate to such severe sleep problems, panic attacks, and fever, to encourage her or guide her in the right direction please, please.

    Post replies so I can let her read them! Thanks so much.

    kaymac
  2. mamafurr

    mamafurr New Member



    i am so sorry to hear about your friend. i have fm and was diagnosed 13 yrs ago. i am saying a prayer nothing serious is going on.

    we all can relate to what you are talking about. this disease is so frustrating and debilitating. altho i don't have the fever prob, all else is on track. does she have access to a computer...maybe yours?. this definately is the place to come for support as everyone on here goes thru so much with the pain, sleep probs,anxiety, emotional ups/and downs. (depression goes hand in hand with this dd). there are 2 other boards here, one is chit-chat, just to vent and discuss your daily life, etc, and the other is our worship site where people offer prayers and inspiration.

    maybe you can give some more info about your friend. is she on any meds? i take ambien and trazadone for sleep. everyone has their own "cocktail" of meds or vitamins etc that work for them for sleep and pain.

    i thought lupus was a disease that was diagnosed with blood tests etc. i guess she was mis-diagnosed in the first place?has she changed docs? why do they think she has fm? does she have pain? fatique? pressure point pain?

    everyone here wants to help
    please write back
    :)
    alice

  3. Shirl

    Shirl New Member

    Hi Kaymac, I have Fibromyalgia, no fever with this. The sleep problem is insomnia. I do get panic attacks, but not all the time, just here and there.

    I also have pain, spasms, bad sinus attacks, allergies, chemical sensitivities , headaches, IBS, mood swings, fatigue (but only occasionally), foggy brain sometimes, racing brain syndrome, night sweats, terrible time waking up in the morning, and a few other symptoms I can't think of at the moment.

    I do not have depression, but sure can get frustrated!

    Has she been checked for Chronic Fatigue Syndrome?

    We do have a 'Doctor Referral' link at the top of this board, or you can call the; FM Network at; 1-800-853-2929 for a doctor in your area.

    Also, you can read the latest research on FM/CFS and Lupus on the 'Home' and 'Library' links at the top of this board.

    A good book for her to read, or you can read for her is; 'Fibromyalgia & Chronic Myofascial Pain Syndrome (A survival manual)' by Devin Starlanyl, M.D. this is a doctor that also has FM. She also has a web site.

    I think your friend needs a good doctor that is knowledgeable with FM/CFS to find out what is wrong with her.
    If we can do anything else for you, just ask.


    You are a kind friend!

    Shalom, Shirl
    [This Message was Edited on 07/22/2003]
  4. kmelodyg

    kmelodyg New Member

    Hello! Welcome to the board! That is very nice of you to want to hep your friend. First of all, you need to tell her that she is not alone!!!! We have hundreds of women and men who come here everyday with every symptom and emotion everyday. And these people here are th most loving and supportive people taht I have ever met. I had my first flare up in October 2001, right after 9/11. That's when my sleeping problems, extreme pain, IBS, depression, anxiety, and everything became so bad that I thought I was dying. They subsided in January 2002. I had on and off mini-flares and symptoms all year in 2002. Then in October, I was fired from my job (I just realized that! What's up with October?) I started going to all different doctors who did not know what it was or how to help me. The pain began to get unbearable. And in December, I finally figured out what I had just by doing my own research. I had FMS/CFS. I told my doc but he said that he didn't believe in it. That began the on-going battle that I had with hin up until recently. He was putting me on pain meds, but not before I had to fight tooth and nail for them! I finally fired him a couple of weeks ago. He was a very unprofessional, condescending, jerk!! So, throughout these tough times, I had been coming to this board, And there has always been someone that I could cry to. And always someone that had gone through the same thing. It was very relieving to have that to come to. Now, I am much stronger. I am on medications that really help to lower my pain, depression, and anxiety, and I have started fighting back! I was mostly inspired by "highriskrn" or Sandy from this board. So now I am writing a book about many people from this board's stories, I am ebing taped by my local TV news station next Tuesday about my story and how there is a lack of eduction for the public on FMS and Chronic Pain, and I will be strting the first ever local support group, and starting fund raising efforts. Pretty cool, huh! That all comes from this board!!! So, keep your chin up. Write your heart out to us, and someone will be there to listen. You can and will get through this. You have to keep the faith. I did!!

    Lots of Big Soft Hugs,
    Kathryn
  5. Echo2

    Echo2 New Member

    place for your friend to look, for starters. I am so new to all of this, but the collective wisdom here is just awesome. She is not alone, we deal with so many things, but the fever problem does sound kinda different. The doctor search is often so ugly to go through, just tell her to keep trying until she finds a good one who listens and can pinpoint what is wrong. She is lucky to have you, and kudos to you for caring so much. Others will have much better information to post, but just wanted you to know I care!
    hugs,
    Echo
  6. mroc37

    mroc37 New Member

    Hi Ihave fibro for along time now but finally had the diagnoses from a rheumatoligist and then i went to a neurosurgeon
    So far Im going to therapy because body is so tight. Any way best thing to do is find right doctors I also get fevers but they are not sure if its fibro or my thyroid causing it. Please get involved in these message boards and support groups you will find comfort and support here.
    God bless
    Mroc37@aol.com

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