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    I'm so tired of being tired.....
    sssfletcher posted:
    I'm quite frustrated with myself. It's been about three and a half years since i was diagnosed with FM. I finally got to a place of acceptance, six months ago, when my husband and some of my other family members decided that they were not going to let the issue go and pushed for me to see some specialists. They all want a different answer - not fibromyalgia. I have been to a neurologist, a cardiologist, and now I am supposed to see a rheumatologist I have had an MRI of my brain and a multitude of blood tests. They are now asking that I have a procedure to take a look at my heart - internally. I'm not going to go through with it. I am so tired of being poked and prodded and I just want this to all go away. Does anyone else ever feel this way? I'm exhausted and I feel like the more dr.'s that I see the more anxious I get. They all seem to have their ideas and concerns and it is stressing me out. Many of them are not 'fond' of "fibromyalgia" and yet all of the tests that are run continue to come out negative. My pain is better now, over the past two months, than it has been the past few years.....but I am so tired and I constantly deal with hives and swelling, restless nights and just a feeling of frustration.

    I'm 38 years old. I'm tired. I want my life back. I want to feel like I have value and purpose. I want to wake up excited for each day. I want to go downhill skiing with my children rather than watching from the lodge. I want to be on the tube splashing through the water rather than watching from the back of the boat. I feel such guilt with accomplishing so little each day. It would be so much easier if this diagnosis required a cast or crutches.....almost as if it would be more accepted.
    dollbug responded:
    Hello sssfletcher and not think I have *talked* to you...MiMi in NC...I think we all agree with being so tired of the wrath of the dragon, aka FM.. and just how much it affects our lives...I think we all wish for our old lives back...but you is what it is...and all we can do is try to cope with *it*.

    I am sorry that you are dealing with so much right now...and as you know stress does not help us, FMers, at all....if you have accepted it....then I would hope that other family members would do the same. No one can change it, no matter what. I am sure that this illness is really hard to understand for those who do have face it every day.....heck there are times when I think we do not even understand exactly what goes on with us...I know I don't. I try not to even question things anymore though.

    I remember one year during the holiday I was doing my normal *cooking* and all of a sudden....I had to stop....I crossed my line and did not have a choice. Well...this taught me a good lesson. From then on I tried to space things apart and not do so much at one time. I think we all eventually learn....even though it just might take a long time to do so.

    I would like to encourage you to get your Vitamin D level checked....if you have not already done so. Low Vitamin D can cause some of us to have additional pain and it can also affect other illnesses as well. It is a simple blood test....BUT you must ASK the doctor to run it is not included in the normal bloodwork that the doctors do.

    I hope you will check out the info here under *tips* and *resources* I am sure you might find some things that perhaps you have not thought of trying which just might help you cope better.

    Take care and good luck....don't be so hard on yourself.


    My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    1wareaglefan responded:
    Hello, sssfletcher.....I know just how you feel! I would like my life back, too. I also feel so guilty for being tired all the time and not getting anything done. No one understands that or the pain. I kind of had to smile about your doctors not being that "fond of fibro." I'm not that fond of it either!! None of us are. That really angers me in a way, too, as one who deals with the daily nonstop pain and fatigue. Do they think we want to feel this way?!

    I think I'd have to stop all the going to doctors to find something else wrong with me. That is adding to your stress. It sounds to me like your husband isn't accepting your diagnosis, and is in denial about it. Maybe take him with you to your appt. with your fibro doctor to explain things. It really sounds to me like you've had enough tests done, and that the obvious answer is fibro.

    Could you have a heart-to-heart talk with your husband? This is your body and your life. He shouldn't be making you undergo tests and see doctors against your will.

    This is all just my humble opinion, so take it with a grain of salt. I wanted you to know, though, that I do understand your frustration with it all.

    dodie1011963 responded:
    I was 37 when I was diagnosed. It's been 18 years. I know how you feel. I'm so tired also. I often wonder "what is it like to have no pain". I have been diagnosed with FM, chronic pain syndrome and chronic fatigue syndrome. To be honest with you I stopped saying I had FM. I just don't tell anyone anymore because when they hear that they just don't understand. I just say I have chronic pain syndrome. At first I went through all the tests you are doing now. I was tested for everything under the sun. However, it is a good idea to get those tests out of the way b/c if you don't you will always wonder if you have something else or your family and friends will wonder. The most common statement I hear from those with FM is "I want my life back". Don't give up. Keep going. Take care of yourself first.
    BetteK replied to dodie1011963's response:
    sssfletcher, if the heart test is invasive, put your foot down and say no--unless your doc has a specific reason for the test.

    We all have so many days we wish we could grasp. But there are quieter ways to be with your family, too. Do what you can, and be creative. Is it possible to rest thoroughly before a family outing so you can join in at least part of the time?

    And yes, you probably do have chronic fatigue syndrome, too. That's what my best ever doc told me. (And he was the head of neurology for a regional cancer center and a prof. at the medical school--a really big gun.) So go ahead and call it chronic fatigue or chronic pain or whatever works for you.

    Towards better days,
    MeandMyFibro responded:
    I am so right there with you! My mom still doesn't quite get Fibromyalgia and seems to think if I would just take my vitamins (I already do!) and be more positive I'd be all better! It can be soooo frustrating. I usually stay pretty positive, but every now and again I have a flare that just gets me so depressed and then so angry for what I have to deal with and so frustrated that most people around me just don't get it. I often say....I am so sick and tired of being sick and tired. I hate not knowing from one day to the next whether I'm going to wake up in tremendous pain and so exhausted that I can barely funciton or if I'm gonna feel great. I've dealt with a few doctors who treated me like I was just lazy or whiny. I switched doctors. In time Fibromyalgia will get more awareness and acceptance.
    sssfletcher replied to MeandMyFibro's response:
    Thank you all for the words of encouragement. I need to just take a break from it all...all the appointments.... and just try to find a place of "peace"....probably could add to that a little dose of acceptance too!

    Have a great week!
    MeandMyFibro replied to sssfletcher's response:
    Acceptance and Making peace with FM is definitely a process and almost a battle. I try to remember to just take things one day at a time.
    leighhunt responded:
    hives? i have been having hives for 2 years and I have fibro. Is there a relationship with having hives? Please someone share if they suffer hives. I know I need help! Do your hives cover you?
    BetteK responded:

    Among all the docs you have seen is there ONE, just ONE, that you can work with? Is there one with a friendly, helpful staff, one whose office isn't too terribly far from your home, one who knows the medicine part of things AND treats you like a worthwhile human being?

    Go with THAT doctor. YOU have to deal with the doc--not your family and friends. YOU have to believe that you are getting up-to-the-minute information about FM. YOU and your doctor have to trust each other.

    Trust is not built up by flittering from office to office and from specialist to specialist. Trust is built by open communication month after month. There will be many different medications over the years. Some will help. Some won't. You and your doctor will have to work together and learn together.

    I know you want results. You want them NOW! That may even happen. Reallisticly, it probably won't. What can--and should--happen is that you and your doctor start to build an atmosphere of trust. The kind of trust you need is the kind where there are no lies, no half truths, between you and your doctor. Some day in the future your life may depend on that trust.


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