THis is so hard, and frustrating

Discussion in 'Fibromyalgia Main Forum' started by rickj44, Aug 19, 2009.

  1. rickj44

    rickj44 Member

    I am a male at 53 yrs , and have had this for 13 yrs. For 13 yrs I had had no Cold, or flue, and with a family, have been around it many times. I am certainly not complaining, but i find this very unusual.
    This tells me my inmmune system is elevated slightly. I have taken prednisone and noticed feeling better, even though it not a drug that you want to stay on
    Prednisone surpresses the inmune system, so my therory, is it is bringing it back down to near normal levels.

    If i tell my Doctor this he just looks at me, like ya right.. Great Doctor but , with good support for my disability stuff and is willing to try new things to a limit..
    But , it ticks me off when i tell him i haven't had the flue and cold in 13 yrs and he smiles and says Knock on wood. It went right over his head.

    I know i will never ever figure this out, i am loosing my ability too walk.. very slowly...its happening.
    This Illness is progessing on me, and there's nothing i can do about it.. thats probably what upsets me the most.

    I know people try this and that and find relief but its not happening for me. I use pain pills, that help a bit.. my greatest friend at night is my heating pad. I am on Number 5..this one has a life time warrenty.

    Hoping for a better day.
  2. jole

    jole Member

    I too am like you...before the FM, I was sick a lot. I had bronchitis every year, had pneumonia more than once, lots of colds, etc. Now....I frequently think I'm getting sick (sore throat, swollen glands) but it only lasts a day.

    However, the body pain rarely ends. Exercise is out for me, and it seems sleep is unattainable most of the time the fatigue is always there too.

    I'm allergic to all antibiotics but one so it's a good thing I don't get sick...but like you, I do wonder if my immune system isn't in overdrive. As for docs...well, the ones I've gone to say they "understand" FM, but really don't have a clue. I thought #14 was a winner, but she's given up completely and won't research anything for/with me.

    I wish you the best....we all understand how frustrating this is. BTW, a heating pad is too small for me, but I have a double-sided blanket that goes everywhere with me...the soft, warm fleece one, even in the summer. The worse I hurt, the colder I am, and I snuggle in it year 'round. I can literally shiver when the thermostat says 78 degrees if my pain level is high. Don't know if anyone else is like that or not....

    Best wishes to you....Jole
  3. munch1958

    munch1958 Member

    Did you have any hobbies before you got sick with this illness? Were you active with any outdoor activities? Do you have any pets? What state do you live in?

    It seems like pain is a big component otherwise you wouldn't be on your 5th heating pad. My pain was getting progressively worse. I was sick with this crud for over 30 years and am now almost completely recovered. My joint pain is gone. My muscle pain is gone. As are my headaches, TMJ symptoms, GERD problems, asthma, costochondritis (chronic chest pain) and insomnia problems.
    There is hope and help out there!
  4. FibroFay

    FibroFay New Member

    It's hard. Very hard, and frustrating, and discouraging and depressing. I feel that way too.

    Sometimes it helps to just say so.

    There has to be better days ahead, Rick. There just has to be.

  5. spacee

    spacee Member

    Like NADH? There is also Mitochondria Ignite which I tried but did nothing for me.

    I have taken the NADH for about 16 years. Before that I felt like I was losing my ability to walk. They sell it here and it is pricey. But I have to think that for me a nursing home would be more expensive.

    I had been feeling worse, on a downward spiral for about 2 years. Then I upped the NADH to three tabs in the am. I take it the lie back down and wait for it to work. It is pretty amazing really. You have to take it with water on an empty stomach.

    The price for me is $36 a month on autodelivery. If I have to go out an for an afternoon and miss my nap, I will take one more at 2pm.

  6. Janalynn

    Janalynn New Member

    I could have written your post! I think there's a couple that you and I could have written for each other!
    I too shiver when my pain is really bad! I've never heard anyone else post that yet.

    I also used to get bronchitis, pneumonia etc. - not anymore. Also "think" I might get sick, but it never turns into anything.

    The only place a heating pad works for me is if I sit on it - meaning put it on the back of my thighs. The rest of my achey body doesn't benefit, but at least somewhere I'm getting a little relief.

    Boy we really are all in this together............
  7. rickj44

    rickj44 Member

    I had a couple hobbies, playing guitar is one, that i can still do, but can only do that when i feel at my best, as i have some arm weakness. Woodworking, Cabinet making is another hobby, but thats pretty well history.

    How do you get better after 30 yrs? I find when i lay down to sleep, at first it feels ok, then within 5 mins, it feels like my rib is coming through my skin. so i try my other side and the same thing happens, try laying on my back and that dont work.

    . so i lay on a heating pad and it gives me enough time to fall a sleep, but this heating pad shuts off after one hr, so i wake every hour or so, to turn it back on.. i need too find one without this safety feature.
    There are times thought when the pad dont help, i will get too sleep but as the night goes by, the pain gets worse, and then i feel the wires in the pad.

    No pain pills have help me. they keep me awake. My Dr is not that supportive.. just wants to write out the prescription and get me out as fast as possible.
    And to find a decent doctor i would have to drive 2 hrs , one way which i cannot do.
    I live in Canada.
  8. FibroFay

    FibroFay New Member

    I just think you need to find a doctor who will listen to you and treat you. It sounds like your present doctor isn't any real help.

    I know it's a long drive, but can you find someone who will drive you to another doctor? You need help and deserve better than you are getting.

    You can get more pain relief than you presently are getting. And I believe that may help you sleep better. I'd really encourage you to think about finding a new doctor. Please let us know how you are.

  9. shelby11

    shelby11 New Member

    Hi, Rick I am meme. I hear ya when you say you are upset with docs. Just thinking back in the early 90's when I was trying to find out what was wrong with me, went Cleaveland Clinic and they told me Fibromyalgia and the docs then would look at me like ya right. They didn't beleive in fibro, and some still don't, so i can see how your doc thinks about what you are telling him. He's probably one of the ones that doesn't beleive in fibro. Good luck, meme

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