please help.

Discussion in 'Fibromyalgia Main Forum' started by gypsy101, Oct 4, 2006.

  1. gypsy101

    gypsy101 New Member

    what is the prognosis for fms? I read that it can be as bad as ra. Is this true? Why did my doctor tell me I have fms and send me home with a pamphlet? I feel lost and scared.
  2. suz45

    suz45 New Member

    Hi Gypsy:

    FM and the other related disorders such as CFS and MPS are so unique to each individual... It okay to feel lost and scared, but please know that there are various treatment methods and that you will find one that works for you.

    You need to speak with your doctor about Tx. options, as everyone feels diffrently about how they want to handle iy.

    Read what is in the library on this site, talk with other members. I have had FMS and MPS since 2000 some years good this year more of a struggle.

    I use a combination of treatments from supplements to some OTC pain relief to yoga and meditation and a chiro fpr the MPS trigger points and low back pain... I am coming out of a flare that started in late August.

    Please know there is hope and that life will change, adjustments need to be made. The paople on this site have good energy and support. You have started out right by just letting us know of your worries.

    Keep posting as you need for whatever your concerns are.

    There are no dumb questions with these disorders.

    In wellness,

    Suz45
  3. gypsy101

    gypsy101 New Member

    I posted more questions in my post above. I would love to talk details with everyone.
  4. suz45

    suz45 New Member

    bmp!!!

    may need more ideas from other members

    suz45
  5. NyroFan

    NyroFan New Member

    gypsy:

    My FM doc told me that I would never be hospitalized for the disease.

    I would, however, have the general problems that any older person is likely to have, which might just 'aggravate' the FM.

    So far I am rolling with the punches. I hope you do, too.

    nyrofan
  6. Lightswitch

    Lightswitch New Member

    I was diagnosed with FM ... They basically had to rule out RA and Any other type of Arthritis or bone disease. My blood results came back good and my joints were in good shape (although to me they felt horrible!!!).

    The most used way to diagnose FM is the Trigger Point test. I think there are 13-20 points, that a doctor can push on, and I think if you have a certain amount that hurt bad (almost like someone poking reeeally hard into a pressure point) then they can diagnose you with FM. (those points are NOT supposed to hurt).

    I was given some Flexirol to help me sleep a full night comfortable.

    The good thing about FM compared to RA, is that your bones are NOT affected. You will not get the disfiguration as people do with Arthritis. The pain is in the muscles/nerves.

    Unfortunately, like RA there is no cure. But there are ways to make you feel better. My doc recommended going to Physical Therapy... Or even better...do meditation on my own, and getting massages!!

    He said RELAX, that's the key to feeling good, RELAX...

    He also told me there is no REAL reason that they can pinpoint the cause for FM. He mentioned some traumatic event may have happened in my childhood that could have caused it. I was surprised that something like that could cause pain so bad, that there was no cure.

    Anyway, I hope you feel better!!! Just RELAX!!! (easier said than done, I know)

  7. gypsy101

    gypsy101 New Member

    My pain was very annoying for the first month. Last night it woke me up and I felt on fire in my upper back and neck and head. I'm so scared. I'm alone with my kids right now and afraid I'm really needing to cry. Can someone please tell me what this all means. How can a person live like this? I'm afraid I'd rather be dead.
  8. suz45

    suz45 New Member

    Hey Gyosy:

    We have all been there, the pain can be scary, especially in the middle of the night and when we are alone with responsibilties such as children.

    Sounds to me like you should call your doctor and speak with him/ her about last night.

    If this happens at night, here is one suggestion get out of bed take a warm relaxing shower and try to use relaxation breathing and sometimes soft music...

    Sometimes when this happens we really beoverfocused on the pain which is an easy thing to do, considering that we are in so much pain. Try to do something to distract from the pain. I know other memebers jump online on this site in the chat room for support.

    The key thing to remember, is that is WILL PASS, but if you tighten up your muscles you will feel worse and your sympathetic nervous system goes into overtime hence the flight or fight sydrome (anxiety).

    Speak with your doctor about a possibel medication you can use at night such as flexeril if your muscles become extremley tight. The key is to break the cycle.

    Get some rest,

    Let us know how you are doing I know thus is all so new to you,

    Hug and wellness,

    Suz45
  9. suz45

    suz45 New Member

    BMp.

    Suz45
  10. TLI

    TLI New Member

    Good Morning Gypsy..
    Your in the right place. I discovered this site only a few days ago and I can't believe how much better I feel knowing that I am not alone, and how much positive information is available from people who suffer just like you do.
    I have not found a Rheumatologist yet, and that has been my greatest challenge, as so many doctors don't even believe in FMS. Everyone here has given me the strength and courage to continue searching for the right doctor and answers. I see a family PA right now, and although he is sympathedic, his knowledge of FMS is limited. One thing he did tell me that has helped, is that a person's brain can only REALLY REALLY concentrate on one thing at a time. When you are in pain, get out of bed and find something to focus on, besides the pain. When he told me that I said, Yea right, how can I do that when I am hurting SO bad??? I thought he was crazy! But, I tried it. I started out finding anything I could to distract myself from the pain. I tried to read, couldn't... TV, couldn't... pacing around the room, forget it. Then, I sat with a pad of post it notes and a pen. I doodled. I drew little lines and swirls. I concentrated on each one being exactly the same size, and no one line touched the other. Pretty soon, I wasn't hurting as bad. I found I was sleepy and relaxed enough to go back to bed. Even though I was tired the next day, it worked!
    The kids woke up the next morning and found nearly 20 post it notes full of silly squiggly lines all over the kitchen counter! It kind of became a joke, as they couldn't figure out what the heck happened in the night! You may think I am completely crazy... but the point is focusing on something simple can really help with the pain. Just try it. It may not work for everyone, but it is worth a try! I will be praying for you.. ~Teddi
  11. suz45

    suz45 New Member

    In the early days is having this disorder, pain focus is so easy to do. Teddie I loved the way you handled the pain. Perfect example of distraction and refocus, I know that my chiro and I spoke in a similiar way a few days ago, about not letting my pain become my focus. It really does intesify everything.

    Each of us has our own way to cope, I just think that in the beginning our minds are racing with the what ifs and what does the future hold. I know thats when I have to stay STOP and tell myself to saty in the "precious present".

    I remember so many times talking with my clients about anxiety and what ifing, and than not to be Listening to my own self.....

    One learns through ones and others pain...

    Thanks for your post, I hope it help Gypsy, it certainly did my soul good...

    Suz45
  12. dononagin

    dononagin New Member

    awwwwww sweetie.. welcome home.. I know it's hard. But don't you give up! We are all proof that you can live with this, and that there are many of us out there. Sure you are going to have bad days, but your going to have good days too.
    FMS is a pretty hard diagnosis to swollow.. Wow.. we get a disease that you don't die from but makes you feel pain for the rest of your life?? UGH!
    But, there are things that can help. Educate your self. You have already takin the first step by reaching out for support. Truly, I have learned more from these boards then the many doctors I have seen over the years. You are so not alone. There is always someone here. Stick around and get to know everyone. We know how you feel and we will be there for you.
    Love and hugs,
    Dona