Having my first life-altering flare 9 years after being diagnosed

Discussion in 'Fibromyalgia Main Forum' started by HeavenlyRN, Jan 27, 2010.

  1. HeavenlyRN

    HeavenlyRN New Member

    Greetings fellow FMS sufferers. I was diagnosed with FMS about 9 1/2 years ago. As we all know, I was probably suffering with it before I was even diagnosed. I've had occasional flares where I've had to spend a day or 2 in bed.

    All of that changed about 3 months ago. All of a sudden my ability to stand and walk for any great distance was severely altered. Seven weeks ago (2 days before Christmas) my doctor took me out of work. At the time, the main problems were severe back pain and, as mentioned above, the inability to stand or walk for extended periods of time.

    This has been one of the hardest things I have ever had to go through. I love my job (I'm a hospice nurse) but it is pretty evident that I will not be able to go back to the job I had. I will most likely have to find a job where I can sit down, with the ability to get up and move when I need to.

    I have seen 2 spine speciaists, 2 pain specialists, my rheumatologist, my primary care physician and a Naturopath. It wasn't until I saw the most reent pain specialist (this past monday) that I think we're putting our fingers on what is going on - beside the fibro flare. He feels that my sacroiliac joints are out of alignment. I foot surgery on September 24th, was in a cast for 7 weeks, a walking boot for 4 weeks, then back in shoes. I'm still limping. AND, I was having a lot of foot pain for months prior to the surgery. So, I've been waddling for quite a while. Aquatherapy has been prescribed, as has acupuncture. I had my first acupuncture treatment yesterday. I slept like a baby last night (no....I didn't wake up every 3 hours to be changed and have a bottle!!) - for the first time in months! YAY! Can't wait to see what the rest of the treatments will do. The naturopath has me on a handful of herbal supplements, one of which is to hopefully de-toxify my liver. My husband and I had a mold problem in our home that we left 3 1/2 years ago.

    Well anyway - just thought I'd write this all done. It felt good. Thanks for listening (reading!).

    Also - I was thrilled to see that thread about how we can explain FM to our family, friends and co-workers. I can't wait to show my parents. I think they're having a problem understanding why I can't just get up and "deal with it." Thank you to whoever started, and whoever replied to that thread.
  2. fifthofanickel

    fifthofanickel New Member

    working for you..I tried it several yrs. ago, to no avail..I too, am a nurse, but retired. I found that chiropractic/reflexology really helped my sacros. & plantar fascitis. I had about 4 reflexology treatments, & didn't need to return, but still do go to the chiro & massage every 3wks. Bought New Balance #1123's, & find if I wear them almost constantly, my feet are pretty good.

    But I cannot walk, sit or stand for long periods of time. I couldn't while I was working either..I tried to find a job where I could incorporate all of the those, but couldn't find one. And many retail places require a lot of lifting. I tho't of a Dr's offc., but there again too much sitting. So I'm home, trying to do a little of all of those things, & am frustrated that I can't do more. I guess if you have your good health & $$$$, retirement is a good thing..lol..

    For me only, all the de-tox stuff made me feel better, (a tad more energy) for a couple of weeks, but then back to the same ole...Hopefully you will feel better for a longer period of time. This is a fickle disease...I think I had a 3 week period last summer where I could actually go out in the yard & do some gardening..I was soooooooo happy...But then back to the suffering...Hate to sound like a downer, but until "they" come up w/something that works permanently for a person, flares will go on. Right now I'm flaring across my chest muscles.

    Tough to do any kind of lifting, handwork, cleaning etc. Pains like you know what. I wish I could have finished out my career also, but just couldn't keep up..

    Best of luck to you...We just have to keep on trying to find something that works for us..
  3. HeavenlyRN

    HeavenlyRN New Member

    "THEY" anyway?!! And what is taking "them" so long to come up with something?!! :)
    I have aquaintance who just told me that she is de-toxifying also. She mentioned a book called "Detoxify or Die." Sounds kind of scary, but certainly seems worth a look.

    The first pain doctor I saw was a jerk. The one I saw on monday was much more appealing. And by that I mean that he actually listened to me, took notes, read what I had written down, did an actual exam (wow, what a concept!) and didn't stand there the whole time with his hand on the doorknob! I go back tomorrow for cortisone injections into my hips. I am not looking forward to adding one more thing to body, but I will give it one try.

    I'll let you know how things go. And good luck to you as well.
  4. Bunchy

    Bunchy New Member

    I also have a lot of back pain that stops me standing, walking or sitting for extended periods - it's the worst isn't it?

    Mine also came on suddenly (with a bunch of other new symptoms) after seven years of fairly classic moderate CFIDS.

    I have a special massage mat I bought that helps me be able to walk and stand for a little longer than before (it relieves the pain and stiffness) but I have never been able to get around the sitting problem. The only thin I can sit on for any length of time is my sofa (couch) which is very reclined and soft and also my bed :(

    I have found Valium helpful for severe muscle stiffness in my back but the effect wears off unless you take it regularly.

    I wish I could be of more help - I only responded because I wanted you to know you are not alone with this. I also cannot work because of these problems.

    Love Bunchy x

  5. shari1677

    shari1677 New Member

    Its funny you should mention MOLD in your post. I was diagnosed with FM about 5 years ago. Approx 3 years ago I moved into an upstairs apartment that was just remodeled. Everything looked perfectly normal. Of course, washer/dryer hookups were in the basement and that was covered with MOLD, black hairy mold. When I looked over the apartment, I was told that it was just a "wet basement".

    Fast forward about 6 months from then when I had to turn the heat on, in the fall. OMG did my symptoms flare up BAD! I just couldnt understand it! Until that time, I was in pain, but still able to function. This flare put me in bed for 6 weeks, barely able to roll over!!

    It wasnt until I moved that I realized - it was probably the MOLD!
  6. Meg1710

    Meg1710 New Member

    Jammed or out of alignment sacroiliac joints are something allopathic doctors rarely mention or can do much about, apart from drugs or surgery.

    My experience however has been relief of the incredible pain/discomfort for weeks after my chiropractor has done her very gentle and painless manipulation, when my SI joint is subluxated. I recommend it for your consideration!

    Pleased that you slept like a baby last night and hope it long continues.
  7. HeavenlyRN

    HeavenlyRN New Member

    Meg - thaks for your idea about the chiropractor. That has also been in the back of my mind to try. But as with meds, I don't want to try too many new things at once. I'll give the acupuncture and hydrotherapy a chance to work, and if it doesn't......off to a chiropractor I shall go!

    Glad to know I'm not alone in this process. This message board has been a god-send!