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I'm new here. :)
4 Replies
appleannie - June 9

Hey y'all. :)

I'm glad to find some support out here in the ether. I've found a support group in my hometown of Raleigh, NC (US) also. I was diagnosed with fibro when I was 22 after a head injury and many exhausting years of testing. I'm 24- almost 25 (in august-yikes!) and just now starting to reclaim my life. It is so hard and it HURTS HURTS HURTS. I've now been going to a practice that integrates an general medicine, osteopathic medicine, diet & nutrition, massage, and physical therapy/therapeutic exercise. I'm about 12 weeks in, and I am find a little relief (on the GOOD DAYS) and am hopeful. I know FMS & I are stuck together for the long haul, but I just have to believe that there is a way that I can function with this an live a fulfilling life...

The first little inklings of fibro (which sometimes mimics rheumatic symptoms) for me were frequent kidney infections ALWAYS accompanied by a proteinuria. During a routine college physical, a young PA started piecing together my symptoms. He was concerned that I may have Lupus or RA. Then followed the ANA tests, and finally another young doctor narrowed my diagnosis down to fibro. I had seen so many old man southern doctors who believe that women who experience the symptoms i experience (of which there are many) are just LAZY and CRAZY. My father is an RN of the same attitude who dismissed it, saying that I just THOUGHT i was in pain. I had to be crazy. I had to be depressed. I had to be imagining my pain. (It is beyond my point but worth mentioning that ALL PAIN IS THINKING YOU ARE IN PAIN. IT'S A FREAKING BRAIN SIGNAL. If you cut my leg off, my brain would tell my stump to hurt.)

I know it sounds crazy, but it was such a relief to have a diagnosis of SOMETHING, of one thing as opposed to the many it seemed like it must be- there were/are just so many symptoms. The average fibro patient experiences 23 symptoms. It's maddening without a diagnosis.

I spent 2 1/2 years (post dianosis) not working, having withdrawn from college, in bed feeling sorry for myself. I went in and out of Klonipin dependence- I think I was trying not to exist at all, and it worked. There's a lot contained in those years I don't remember. It was the worst time of my life. I guess I started bouncing back a year ago. I made it through a semester of school- I dropped half my classes but did really well in the ones I kept. I'm learning the importance of giving myself a break and not overloading myself. On the inside, I'm a superhero. My body just doesn't agree with that. I want to do everything and just KNOW I can. On my good days, I do way way way too much and render myself useless for days and sometimes weeks. I'm trying to figure out ways to budget my energy and pain. It's a learning process. R ight now, I'm very tired and in an awful lot of pain. I just had my first manual chiropractic adjustment today. (So far my DC has been using the proadjuster- wanted to try manual manipulation to see if it helps.)

I've found a really great team here. My doctor wrote a book called "You're not crazy: an overcomers guide to fibromyalgia." I highly recommend it to ANYONE with fibro or who loves someone with fibro. His office does a sort of integrated thing with fibro- i see a physician (MD), a chiropractor (or two- they're both great), we work on diet & nutrition (which is the hardest part because i'm a southern cook), i see a massage therapist and do therapeutic exercise. The new regiment has my good days a lot better. My bad days... well, I'm sure you know about those too. Hell on earth.

It's so frustrating dealing with fibro and my relationships. My boyfriend and I were talking about marriage until we moved in together and he saw what living with a fibropartner is like. I moved in to help him after his father died, but there haven't been enough good days for me to feel like i'm actually more useful than burdensome. I think that's the worst part. Feeling like a burden. (Don't worry folks, I'm on my way to a good therapist- as soon as she gets back from her vacation...) How do you cope with feeling like a burden? Where is the balance between asking for help and burdening your loved ones? I have to have my girlfriends come over to help me clean because I can't afford any help.

I'm a writer and the fog is so frustrating. And now it seems like I only have inklings in the car when there IS NOT A CHANCE I will remember them by the time I get home.

I'm also in the middle of the disability process. I applied in March (June now). They've gotten my medical records, sent me for a psych eval (grr but i'll accept depression as SECONDARY to my fibro. being bedridden sucks), and now I have to go for MORE x-rays and an exam by an independent examiner. My doctor told me that was a positive sign and that the state wouldn't spend money on me if they anticipated denying me. Does anyone have any helpful experiences with this?

Thanks for listening/reading. Glad to find you. :)

 

appleannie - June 9

haha. just read my foggy post. good thing i mentioned what type of practice i go to twice, just in case anyone else forgot i said that too! :)

 

Noca - June 9

Welcome to the forum Annie!

 

appleannie - June 9

Thanks!

 

kentucky girl - June 9

Welcome appleannie!

I think you will find a lot of caring and compassionate people here.

 

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