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    is this fibromylgia
    marty500 posted:
    have been told i have a little high ana its alwys a little high but it will go up and down i have been told i have fibromyalgia,but i am going crazy because i always have so much pain its hard to walk im never pain free i have headaches every day my arms and hands hurt so bad but i also have very strange symptoms i feel disoiented at time upset
    stomach dizzy cant sleep i start to fall asleep and i wake up panic like i i cant breath but i can i feel im gonna die every day always tired i have vision problems a knot in my throat most of the tim im never happy all ways i also have sore throat often muscle spasem sometimes i get
    the runs then the other get the shakes real bad just like i was having a suger low i have so many issues i just want to know is this fibro or just wahat they
    tell you when they dont know whats wrong with you or think its all in your head
    booch007 responded:
    Geez Marty so much sounds like I was years back.

    First, it sounds like a sleep study of you is in order. Many people have sleep apnea, where they stop breathing at points during the night. This is easily fixed when diagnosed. So bring this to your attendings attention and ask for a sleep study.

    Being in pain all the time does bring down the spirit so of course you are not happy, none of wish to carry this around with us. What meds do you use to help you through? Are you diagnosed by a specialist with FM? If so click on the toolbox thread down the list here and look in it for some help from the past members and how they dealt with this.

    Now to the meat and potatoes of this. My neck is the bain of my existance.....meaning it is the worst part I deal with.

    I see a nuerologist with a specialty in the myofascial arm...I receive trigger point injections. There are so many muscles to the neck and shoulder area. The scalenes are the ones that choke me, I had so many docs scope me and look to see why I had the tight throat, lump in my throat....couldn't lay down...found it hard to breathe issues. When I met Dr,D she had all the answers and explained every symptom to me. I was so vindicated!!

    I now have been recieving the trigger point injections every 2 weeks give or take and alot of my symptoms have settled, other keep getting exaserbated because I work and push for a life.

    I bought the book FM and Chronic Myofascial Pain by a DR Devin Starlanyl on IT is priceless as a resource to help with things. The problemm is where you are having problems it is hard to treat. Stretch and release can help a little but the neck responds well to the injections. Painful but so valuable. Massage is good too.

    I wish for you to look in the toolbox, get a sleep study and seek out a doc who knows this issue. Pick up that book also, best 19.99 you can spend.

    You are not going crazy. We have so many symptoms depending on the area affected for that day and it can really get you.....sometimes my feet are burning (due to leg muscles on the nerves) sometimes it is a headache(the back attachment muscles for the trapezius muscle, or mid back by the spine (paraspinals) So everyday can be different. It takes time to learn and understand you and get your toolbox in order so you can help you. Over 15 years now I am playing around with this fight.

    Yes there were docs who gave me a raised eyebrow, I moved on....wrong fit. I was an ICU nurse so no one was telling me this was in my it is, now I am chemically adjusted to pain and my body has changed. I agree...but my plan of care is right on and I am not changing a thing to survive at this time.

    Stay and post, share your issues and your path as this is the hardest the beginning when you need the right doc. I see a sleep study though may help you feel so much better right away though. Your oxygen may be dropping during the night and that screws up your body chemistry big start there. Then get that book and learn about the muscles.

    Good luck, Nancy B
    booch007 responded:
    Now adding this to your other note...

    Sleep apnea can give you chest pain as well. I don't know you age or your weight, but this all should be added together and brought to the doctor.

    Hope you made that call.....Nancy B
    marty500 replied to booch007's response:
    thank you so much that answer you gave me means alot to me cause you do touch on alot of my health problems thank you
    i did have a sleep apena test done they did it when i had a bad flflu so i could not adjust to the mask i still keep waking up choking with it if not even worse now i have to wait a year before they can redo the study
    BetteK replied to booch007's response:

    You're so right about Dr. Starlanyl's books. They explain so much. Isn't it a shame that we are FORCED to learn so much about our extremely complex illness mainly because most medical professionals no so little.

    We have to educate ourselves and our medical team too! It's a fine line requiring tact and a lot of understanding on both sides of the medical fence.

    Weren't you amazed at all the associated symptoms and syndromes we FMers have encountered. When I first read Dr. Starlanyl's book, I was amazed at how many of those puzzling events from past years were listed in the book. I truly believe that I would have been spared 2 surgeries if a book like this had been available back in the 70's. What a horrible fact to face.

    Thank God for caring, informed people like Devin Starlanyl who can help us understand the many faces of FM.


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