Balance Difficulties

[KathyMarie]

I’m new to this forum and I want to thank you all for reading my post that is if anyone does. lol I will try to keep it short.

I am 39 years old and have had Fibro, TMJ, chronic foot and hip problems and more for ten years now, the result of a high speed auto accident. Unfortunately I am allergic to all pain meds so the only medicine I take is a sleep med. I’m grateful that I have arms and legs to complain about. I know things could always be worse, but I do often mourn the active, carefree unlimited not counting spoons life I kind of sort of remember ten years ago. Not to mention Fibro has robbed me of my youth and lively hood. I miss hiking in the woods the very most and how massages used to feel good. Now a massage anywhere on my body is medieval torture. Massage is so painful the slightest touch feels like needles under my skin. Down with massage! My family and friends say massaging me is like trying to massage the sidewalk. I’m sure many of you can relate. I’m sorry too, no one deserves Fibro. Okay I can think of some people who might, but in my experience most people I have met with Fibro are nice caring warm hearted people who keep trying to get better.

Sorry, I’ll get to the point-----Fibro Fog does love a good tangent---lol-----

In the last five years my fibro has gotten progressively worse even though I am very proactive and have a 98% of the time a positive attitude. (Maybe it’s just my twisted sense of humor that keeps me going). Five years ago I also lost the ability to walk less than a city block, just going to the grocery store is a big deal now~. I recently discovered through a neurologist that I have absolutely no balance. I always thought It was because I’m a klutz, I fall down and crash into everything even when I’m not drunk, lol! I think I walk better when I am buzzed Just kidding If I ever have to do a sobriety test I will fail and or fall. (I don’t drink and drive, nor do I condone it) Seriously though I can not walk the heel to toe test or walk on my heels or toes. I shake uncontrollably and will fall if I do not have something to hang on to. I am wondering if anyone with fibro has this same problem. Also are severe balance problems common in Fibromyalgia? I also have always been told that Fibro does not degenerate and yet I am living proof of that it can. Does anyone else have this problem as well?

[ShawnaZ]

Hello KathyMarie,

Oh joy - balance - I can totally relate to you...
I am 39 as well and for 5 years I suffered from vertigo to the point where I walked with a cane off and on. Now I am an avid motorcyclist and very independant. So you see this vertigo did not fly with me - as I am sure you hate it with a passion as well! Whether it is just trying to balance or true vertigo (spin with me).

So yes, I have been diagnosed with fibromyalgia and this lovely vertigo. What helped me is swimming... the back and forth movement of the head in the water (oh icky feeling) that continuous exposure with Yoga seemed to make me stronger in the balance department. Also a low dose of Nortriptyline - and I am without it for once in 5 years! But there are days when it comes back with vengence.

Hang-in-there - try some inner strength - Yoga, swimming, see what you can do. I wish you all the best. ShawnaZ.

[KathyMarie]

Hi ShawnaZ,

Thanks for replying. I'm sorry to hear that you had vertigo for five years that must have been unbereable. I'm so happy for you that you are doing so much better and able to enjoy what you love. Huzzah! You give me hope. Sounds like you have a great sense of humor and positive attitude as well.

I do not think I have vertigo, although I do get dizzy spells but I think that is more due to my TMJ problems and fibro. I always get dizzy when I am in stores (I guess due to the florescent lights). I've noticed that I also get dizzy when my neck muscles are extremely tight.

I do swim and I love to swim. Yoga is more challenging for me due to my severe foot problems. I did take a water Thai Chi class, that was fun, but it kinda felt like a celebrex commercial though! LOL JK I used to belly dance before my problems worsened.

Did you ever find out what caused your vertigo? Can I ask how long you have had Fibro?

Thanks for the advice and encouragement!
Ride on! TC,
KathyMarie

[ShawnaZ]

Hi again KathyMarie,

I am not totally sold on my fibromyalgia diagnosis. It was given to me about 2 years ago. But I have that Malar rash (which goes with lupus) and I have had meningitis, kidney failure (they started back up -thank God), hematuria, and loads of other things that fibro does not quite do.... Thus, I am not sold on the diagnosis of it.
Like you have the pain to touch - I don't have that. I find that would be just horrible. I love massage it helps with neuropathy I have.

So how long have I had this.. well, I had Scarlet Tina as a child about 2 years of age and always sick, always. But I have to say about fall of 2006 after I lost 75 pounds (this was a personal triumph of my own- I wanted to do this for myself and my little son) - I thought "I should not feel this crappy all the time!" OR "do all people who work out feel this crappy all the time?" Then little by little between migraines, meningitis, hospitilizations, horrible achey feet and joints, burning face, lesions on my face, I said I am going to go to the doctor.

Well - NOTHING - no real diangosis. But I have one really good doctor who is treating me as if I have negative ANA lupus or Behcet's with fibro. and we treat symptoms as they come. He is AMAZING!


BUT - the pain. WOW, all of us must be headed for another existance of beauty after this one because we all deserve the BEST! Hang-in-there girl friend - I will listen - for sure!!! Shawna Z