Please help!!

Discussion in 'Fibromyalgia Main Forum' started by flip30, Sep 4, 2005.

  1. flip30

    flip30 New Member

    Hello everyone, I've never been here before, but I need help from somewhere and am hoping to get any more information about fibromyalgia. This may be a long post...

    My legs have been hurting and just not working properly for about a year now, and my doctor has been alternately unconcerned and stumped as to the reason. I was sent to a neurologist who charged me over $800 for some nerve tests which came back fine. She said I should get an MRI of my brain, but frankly, it is over $1000, which I do not have at present. Meanwhile, I have been tired and sore all over and now my arms have been effected as well. I wake up each morning with my hands asleep and so weak that I can not make a fist. They are swollen much of the time, especially in the morning. My legs burn and hurt all day and all night, and I can not stand people touching me at all. I have had to turn to the internet to try to find out what in the heck is wrong with me, since I don't have very good insurance anymore, and just about every symptom I have looks like fibromyalgia.

    But I have also been reading that there is not much that can be done about it. I don't know for sure that I even have it, and basically, I need to get rid of it. Is there any real treatment? Has anyone ever tried the Guaifenesin route? Does this even sound like fibromyalgia? Should I even go to my doctor and see if this is what it is, since nothing can be done about it? No flames please, I really need the info!
  2. flip30

    flip30 New Member

    I really do wish someone would respond. I need any info. that I can get. I am about 99% sure that this is what I have, but family are still telling me that it is in my mind. My mother says it is because I am overweight and that if I could lose weight it would just go away. I have a lot of overweight friend, and all of them can move their arms and legs just fine...
  3. Musica

    Musica New Member

    I'm surprised the neuro didn't come up with anything. Your hands being asleep and weak in the morning sounds like something is going on with the nerves. Have you been evaluated by a rheumatologist, especially one who believes in and deals with fibromyalgia? With the swelling, you might have something else going on, too; unfortunately, a lot of these diseases come in pairs, at least. You could, for example, have FMS and some type of arthritis. Swelling could cause pressure on your nerves and cause the numbness and weakness, for example, either from something like carpal tunnel (although I presume neuro tested for that) or rheumatoid arthritis. I don't know what kind of blood tests have been done, but it sounds like you need an evaluation by a rheumatologist.

    Getting a diagnosis of FM can be a long and arduous road, even by rheumys who believe in it, because there is usually a lot of testing to rule out other diagnoses. If you have obvious tender points, however... but they probably still want to make sure nothing else is going on at the same time. I would certainly be careful about what treatments you try, without a clearer idea of what's going on.[This Message was Edited on 09/04/2005]
  4. rileyearl

    rileyearl New Member

    I'm sorry you've been feeling so bad. Pain wears you out. I agree with the others that you should find a doctor who is familiar with treating fibromyalgia patients. If you read through some of the posts here, you will see that there are about as many ways to get diagnosed as there are patients. Also, contrary to what you've read or heard, many people with FM do improve over time with good diagnoses and strict attention to what will make them well--diet, exercise, meds, supplements, etc. As I mentioned everyone's fibro is not the same.

    My best advice is to do searches through the posts here on topics like Symtoms, Guaifenesen, Pain Meds and whatever else you can think of. The one thing we all have in common is the knowledge that we need to manage our own healthcare when it comes to FM.

    Take care!

    Francie
  5. gabdeb

    gabdeb New Member

    i think this sounds like me and i have fibro. my legs and arms hurt all the time and i cant stand for anyone to touch my legs. except my hands dont swell. i do not have insurance either so i know how that is. your profile isnt filled out so i dont know where you live. but if you live around kc mo i could tell you some dr. you need to go to a dr and see if you have the 18pt test and see what they say. i dont know a lot about this yet as alot of others here are trying all types of treatments. i cant get going in the morning till i take my meds, percocet and wellbutrin sr. i beleive the more research we do on this we can get to feeling better. stay with the board and you will learn alot. good luck to you. deb
  6. Dee50

    Dee50 New Member

    Hi and welcome to the board. You can get lots of information from reading the bio's of folks on this board. There are many different ways of dealing with FM. Pain med.s no pain meds. changes in diet ect.. Different things work for different folks. There is no "cure all" for FM or CF. It is very hard when you don't know what is going on with your body. We here have many symptoms going on in our bodies. Some doctors have labeled some of us with FM or CF some not. We support each other through both the good and bad. That is just my 2 cents worth.
    Dee50
  7. flip30

    flip30 New Member

    I appreciate all the responses! I have insurance, just the catastrophic kind- high deductible per year, so going from doctor to doctor is just impossible right now. The neurologist only did the nerve tests in my legs, and that pretty much wiped me out for now. She charged me $120 just to sit in her office and hear the test results, and my doctor wants to send me to another one for a second opinion? No thanks! I have not been referred to a rheumetologist (sp?), I will ask my doctor about that. I guess I will go back to him and tell him that I think I finally know what is wrong with me, though in my experience, doctors do not take too kindly to that...
  8. lvjesus

    lvjesus Member

    "I guess I will go back to him and tell him that I think I finally know what is wrong with me, though in my experience, doctors do not take too kindly to that..."

    That is a good idea. I can say that because it is how I got diagnosed! Ha Ha

    I had been to the PCP for fatigue, then a few months later, I found this strange sore spot which I went for, then a week later I got up to find I was sore to the touch in a band around my entire chest. That scared the poopie out of me and I was back again.

    All of these visits resulted in some guess work and tests that were negative - not bad on the docs part 'cause he was trying to figure it out.

    Then an issue with chest pressure sent me to the ER, where my EKG was fine, but a chat with the ER doc and some poking - only the rheumy poked GENTLY - caused her to say, "it might be fibromyalgia."

    I went back to work and looked it up, said to myself, this is it and went back to the PCP and just asked point blank if he thought that could be it.

    He ran some blood tests to rule out other things and diagnosed me and gave me elavil. He is pretty open to suggestions and listens to his patients, though.

    When I read that you had to have widespread pain for 3 months to get dx I thought that was poopie too. Why should I wait until I had been in pain for 3 months to start getting treated?

    Read and print, if you can, info on fibro so that he/she will know that you have done the research. Being knowledgable about what it is will help alot in most cases.

    Sonya