Been gone a long time

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by mujuer, Oct 8, 2012.

  1. mujuer

    mujuer New Member

    Hi,
    I used to be on the boards quite a lot a few years ago. Hi Jamin! Why I have been gone? Ankylosing Spondylitis. I had it when I was 28-32 along with Colitis. After 4 years on Sulphasalazine, I went into spontaneous remission until about 2 years ago at the age of 52 or thereabouts. So back on the computer this time to find info on it and to another set of Dr.s.

    I believe my Fibro got so bad that it kicked it out of remission. Now they both go at each other. Dr.s have tried me everything for Fibro. All FDA approved med's, anti-depressants, lot's of supplements, etc., etc. I am in the subset where the barometric pressure change affects my Fibro. After having it for almost 10 years, I have researched, researched, researched. I have found nothing to work. Can't sell home to move to warmer, dryer climes.

    It is now affecting my blood pressure consistently. I am bedridden 10 month's out of the year. The weather changes here constantly.

    Could some of you who have been on the board please direct me to new research or anything else that has come out in the Fibro community in the past 2 years only? Have missed you guys and will be back now more often.
  2. jaminhealth

    jaminhealth Well-Known Member

    you've been missed....we had some good conversations over the past years....I'm still here, getting and giving support where I can.

    Sorry to hear things have been so rough. I've had a couple tough years, thanks to a hip replacement that left me with so many other back, knee and ankle issues...domino effect...but working on so many other protocols...

    Just yesterday listening to Dr. Darrow on his jointrehab.com radio program, a person called in with AS and Dr. Darrow talked about a certain exercise standing with hands on wall and doing something, I didn't get it all.

    I deal with spinal stenosis and spondylothesis and want NO MORE SURGERIES.......this hip did me in.

    Otherwise, I'm pretty good, immune system-wise....

    Still with Grape Seed Ex (17 yrs), Armour Thyroid, Vit D and many other supps....chlorella and turmeric being the latest...

    Also do Mesotherapy Injections and Acupuncture and getting help with these two....my rheumy gives me these...

    I think you are in the PNW, was it WA or OR, I forget....my friend from down here moved to Portland a few yrs ago and I know it's harder on her health issues and finding the great MD's we have down here in So. Cal...

    Weather has got to be a HUGE factor with all our stuff and the warmer and dryer the better.....

    Hope you stay with us and let us hear what you have been taking or not taking....jam
  3. mujuer

    mujuer New Member

    So much to catch up on, sigh...

    I think the last we spoke you were thinking about the hip surgery. So sorry it lead to other problems. It is rough girl! If you have spondylothesis then you kind of know what A.S. is about. My neck is almost fused now and I have 8 bulging disc and some that are degenerated. Just had another M.R.I. because I took a fall. Having a Neurostimulator put in next month but it won't help with Fibro pain, just the other.

    I'm sure you're friend is finding it difficult moving to Portland. They have the same weather as us, (WA). Poor thing, she better get back to So. Cal.

    A.S. has taken over my life. I have infusion therapy to stop the progression. I have so many protocols now. It affects the eyes too.

    Still, nothing is as bad as having Fibro. Having both is unbearable! I just wanted to see if there has been any new research or help. I am on an A.S. board as well but will check in here again too.... Mujuer
  4. Mikie

    Mikie Moderator

    Glad to see you post. The newest thing for me is peptide injections. You can read all our posts on them by doing a search. I don't call them a "cure" but they have definitely helped me. I've been too sick and injured with other things to know just how well they are working right now. I'll post later about them when I get over this UTI which has me down.

    Love, Mikie
  5. mujuer

    mujuer New Member

    Nice to be welcomed back to an old site! Now that my fibro season is "ON", I will be here a lot more. Always the best people on here. I will look into peptide injections.

    Having all kinds of problems right now with dystonia. I suspect it is a med. Before it was Cyclobenzaprine. I am on a low dose of Abilify, Nuvigal (which is a-w-e-s-o-m-e for fatigue, and Vyvance, all with a side effect of dystonia. A flare brings it on which I have now all day and will for the next 10 months or until I move out of the rainforest! Of course I have to wait for the Dr. to call me back (not holding my breath) Lots of baths for now. I sure don't know how else to stop it. Anybody?
  6. mujuer

    mujuer New Member

    Can we no longer send someone a private message on here?
  7. jaminhealth

    jaminhealth Well-Known Member

    we ever had this function, unfortunately. jam
  8. happygrl

    happygrl New Member

    kickas dot org
    ...link is from another forum...supposed to be good info there.
    [This Message was Edited on 11/03/2012]