Looking for answers........

Discussion in 'Fibromyalgia Main Forum' started by kadeedidit, Mar 8, 2003.

  1. kadeedidit

    kadeedidit New Member

    In 1989 I had my first bladder infection at the age of 39 and its changed my whole life. The infection cleared up but the pain didn't go away. I was diagnosed with interstitial cystisis and as we all know that goes hand in hand with fibromyalgia which I was diagnosed with a year later when I started having horrible muscle spasms. I had bladder distentions and learned to do my own bladder installations with DSMO but it got to the point that there was no relief for the interstitial cystitis and then some wonderful doctor got me started on Elmiron. I am now pretty much free of the bladder burn.
    The fibromyalgia started in my shoulders and I was in such pain that I would wake myself up in the middle of the night moaning. This syndrome has has destroyed my quality of life. I take klonopin to help with sleep but all other medications I've been on thru the years have helped very little.
    With the fibromyalgia I have always carried a borderline ANA ( antinuclear antibodies). Last May when I went for a checkup my ANA was extremely high and I was diagnosed with Lupus. They put me on Plaquenil for a while and it didn't seem to help much so they took me off of it. For now I take nothing for the lupus.
    In October I noticed pain in some of my fingers and they've started deforming with arthritis. I sometimes wonder how much a body can take. There isn't a day goes by that I don't suffer and theres days that I don't want to be here anymore. My body hurts, my hands hurt, my mind is foggy, my hair falls out, I have no energy, and I live in depression.
    Does anyone know of any new meds that help any of these inflammatory diseases. Is there anything out there that can stop any of these diseases or improve my quality of life?
    I would appreciate any response that might help.....I know i'm not the only one suffering with all of this. Thank you.....Kadee
    [This Message was Edited on 03/08/2003]
  2. Shirl

    Shirl New Member

    Hi Kadee, welcome to the board. I am so sorry you are feeling so bad. I have had Fibro for 20 plus years, and its an awful painful illness. I know exactly where you are comeing from.

    I am not on meds, except for a low dose Xanax in the evening for sleep, I take supplements, and had had some very great results with them these last two years.

    I am allergic to most meds, as I have been through a lot of them and wound up with more problems than I started with.

    Have you tried magnesium? it seems most of us with Fibro are deficient in this mineral. It has been a miracle for me with the pain and the spasms.

    Here is what I am taking now; Pro Energy (Malic Acid and Magnesium Glycinate) for pain and energy, then I take ZMA (zinc, magnesium and B-6) I purchase both from Pro Health, this board. These two supplements alone have made a world of difference in my life. You can go to the 'Store' link at the top of this page, and read about them.

    I take the ZMA for sleep, pain, and I think it even helps with the Fibro fog. I have been on the Pro Energy for 2 years, and the ZMA for one year. I am not cured, but have not had a Fibro Flare in a year, thats a record for me.

    I have been sleeping soundly also with the Xanax, ZMA and Melatonin. I have not slept like this in my entire adult life. Its like a miracle. I now sleep 7-8 hours without waking up, if I wake, I go right back to sleep.

    These are the two main supplements that I take, but I do take others if you are interested, I will list them all for you.

    I also had the arthritis problem in my fingers and knees, I took Glucosamine Sulfate and Chondroitin Sulfate, the brand I started with is 'Joint Fuel' by Twinlab. But there are other brands (including Pro Health's) that is also effective. My fingers almost have their shape back, and the pain is gone.

    None of the above worked over night, it takes time for supplements to be effective. I am not cured, but my life is more normal than it had been in many years.

    I can't help with the bladder probem, mine was never that severe, and I don't have Lupus.

    I sure hope you get some help soon, you sound so distressed, I was where you were too. Sometimes I felt what was the use going on in all this pain?

    I am so glad you have found our board, we do have some very informed, friendly, supportive people here, and they will be glad to share with you anything they can to help.

    I did not get a whole lot of help from the medical profession, and the meds didn't agree with me, so I went in another direction for help.

    Again, welcome to the board, and hope you stay with us, and I know you will make a lot of friends here too.

    Shalom, Shirl
  3. WendyC

    WendyC New Member

    on hypercoagulation and on her ABX (antibiotic therepy). Also visit the road back website, I think that they are now treating lupus with ABX. I know how you feel, I have FM and now scleroderma. My quality of life sucks. Hang in there there is lots of information on this site. Go to search site and log in some of the information such as ABX or jelly or hypercoagulation. Good luck. Hugs

    WendyC
  4. kadeedidit

    kadeedidit New Member

  5. kadeedidit

    kadeedidit New Member

    I'm definitely going to try some of these supplements. I don't see where they can hurt and any kind of improvement would be welcome. Can you give me an idea of the dosages you take of these supplements? I'm ready to get started. Thanks for welcoming me aboard. This site may be a blessing......Thanks again
    [This Message was Edited on 03/10/2003]
  6. Mikie

    Mikie Moderator

    I am so sorry for all that you have been put through. I have a friend with Lupus who is now doing very well. She had to go through treatment with steroids which was nasty, but it seems to have gotten things into a level area where she can function as well as possible considering her fatigue.

    Do check out The Road Back Foundation (easy to find with your web search engine). Antibiotics are now being used for all kinds of these illnesses. I have just gone off them after about a year of being treated with Doxycycline for CFS/FMS. Seems bacterial infections, mycoplasmas in my case, are factors in many of our illnesses. Good luck and welcome aboard.

    Love, Mikie