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Old 01-11-2010, 11:19 PM   #1
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Exclamation Upper body deteriotating fast + more symptoms - RANT

Is there anyone here who's weakness is worst in upper body (neck, shoulders, arms + hands)?

i walk with a cane (due to lack of coordination, leg weakness, pain, fatigue, spasms, sudden sharp pains in misc areas, etc.) but am having harder time getting around as my arms/hands can barely handle the cane anymore + more pain in upper body from using cane.

i know much of this is due to the degenerative disk disease + herniated disk in my neck (for which no surgeon will help me w/ due to my coagulation disorder that makes me too high risk 4 surgery ..arg...). FMS most likely is causing this hightened pain perception than with normal ppl... but the weakness has become very worrisome!

I was forced to use the motor cart in the store 4 the first time last week & i felt so defeated. I was happy to finally be able to see the whole store for the first time (usually i cannot shop longer than 15 min or so b4 i am ready to collapse), ....but, at age 42, i feel like a very old woman already & terrified how will i be 10 yrs from now. i'm getting worse every year + I am scared.

Also, more worrying symptoms: difficulty swallowing, painful larynx (its painful to talk, and painful to sit at computer to type!) I rarely ever answer the phone anymore & often avoid friends or situations in which i might be forced to speak b/c it just hurts too much. Feel like i'm losing all ways of communication. ) (it's taking me so long just to type this!)

Has anyone else got pain in their larynx (on top of everywhere else)?

Additionally: Wierd twitching comes + goes in random parts of body (sometimes lasting hours), vision changes, major loss of weight which i cannot regain 4 my life ....and ofcourse this bloody pain is RELENTLESS.

i've been suffering without any relief for over 7 yrs now + i just dont know how much more i can take. I have tried evey suggested medicine, but find no relief in any of them.

HOWEVER: everyone says "But you look good!"
I appreciate their intentions, but to be completely honest, I would like to snap every one of their necks. i am sick of being told how "well" i might look on the outside and politely thanking them while using all my very-limited energies to contain the increasing violence i feel towards them.

(LOL! cant help but laugh at myself.... Sometimes its so bad, its funny. )

sorry bout the rant.
cant type anymore.
thnx for any feedback, suggestions, ...and mostly: just 4 "listening."

wishing most pain-free days to u all!

 
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Old 01-12-2010, 10:40 PM   #2
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Re: Upper body deteriotating fast + more symptoms - RANT

Have you tried water therapy such as hot tub, pool or any of such ?
This may help give you some relief, having gently movement in water may ease some pain at the time. I realize we're not mermaids to live in water, although water therapy is gentle to our muscles.

A Rheumatologist is able to prescribe water therapy (Aerobics) which most insurances may cover. If you do so , please keep us posted of any pain relief you may find.


Be Well
BeHappy2

 
Old 01-13-2010, 08:45 AM   #3
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Re: Upper body deteriotating fast + more symptoms - RANT

I have no upper body strength due to shoulder surgery and three hand surgeries plus PT all the time...PT isn't helping and it seems there may be another surgery on my let shoulder..(Had a Transplant in my Thumb last April and still can't get the stiffness out and am now wondering if it's arthritis that came in after my surgery)

(Transplant was to replace an Arthritic tendon...tendon taken out of my forearm)

Two surgeries to remove arthritis one was my collar bone...I have degenerative disc disease in my neck..

I wish you well...

~Belle~

 
Old 01-13-2010, 09:40 AM   #4
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Re: Upper body deteriotating fast + more symptoms - RANT

Herniated discs in the neck can cause pain, numbness, or weakness in the neck, shoulders, chest, arms, & hands. A very large herniated disc in the neck may cause weakness or unusual tingling affecting other parts of the body, including the legs.

I'd say alot of your issues lay right there.

With the blood clotting issue, is there not medication that can help straighten that up so you could have surgery on your neck?

 
Old 01-13-2010, 12:43 PM   #5
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Re: Upper body deteriotating fast + more symptoms - RANT

Belleofthesouth: Oh dear.. u poor thing.... How do you manage with daily tasks, job, etc.? Have u found any upper body supports or "tools" that help you? I have tried the only upper body support thing i have found so far and it was utterly useless; I think it's only intended to supposedly help posture. Definitely not help with upper body support. I have RTS in both elbows & CTS in both wrist and have tried all those supports/braces, but they chaff my skin, don't stay on right, and don't help much anyhow. Are u married or have family/friends helping you?

Neveragain444: I am on blood thinners (Coumadin) and the issue all the surgeons have is that they want me OFF the Coumadin for several days or weeks prior to surgery. My doc says "ABSOLUTELY NO WAY" because i am way too high risk (i already came dangerously near death due to a massive Pulmonary Embolism ...and then over the years that followed, i have had at least 2 TIAs - aka mini strokes). Despite the fact that i came up with solution myself, which is to simply inject myself daily with Heparin (the short-acting blood thinners) until surgery time, the surgeons r still too afraid of the liability.

Note: i live on a small island & do not have the best medical experts here or access to much of what you all have out there in the big world. BUT, we do have the best healthcare program of all the states & i have been covered for WAY more procedures and medications than many others i have sadly come across on the net. And. i'm surrounded by a beautiful ocean that i could probably get some relief from *IF* i simply weren't so sensitive to cold!

I don't know how you all suffer through the winters. When it drops down to the low 70's (and even 60's at times), my pain shoots up so high and climbing out of bed is like climbing Mt Everest!

Thanks so much for feedback & suggestions/ideas!

Aloha!

 
Old 01-13-2010, 04:06 PM   #6
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Re: Upper body deteriotating fast + more symptoms - RANT

Quote:
Originally Posted by PainInPardise View Post


Has anyone else got pain in their larynx (on top of everywhere else)?

I am sure you have had your Dr. check your larynx. I think so many of us tend to attribute all our ills to FM. A Dr. needs to check to make sure it is not something else or more serious.
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Last edited by gknee; 01-13-2010 at 04:06 PM.

 
Old 01-13-2010, 06:58 PM   #7
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Re: Upper body deteriotating fast + more symptoms - RANT

I had an endoscopy (for reasons unrelated to my larynx pain) last year and i would hope that if there was anything to be concerned about, it would have been caughtat that time (?) ...although, i do sometimes question our specialists' competence.

Just wondering if FMS pain is attacking others in in the same way (pretty much every possible fiber of their being). I am confused because many seem to be capable of holding full time jobs & everything while i have been pretty much bed-ridden 90% of the time over the past couple years -and the worsening of my condition(s) is frightening me so much. (I am only 42 & feel like i have lost the prime years of my life!)

 
Old 01-14-2010, 09:09 AM   #8
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Re: Upper body deteriotating fast + more symptoms - RANT

Hi PaininParadise...I have a husband who takes very good care of me

Surgery on my right shoulder took away one Tendon in upper arm (shoulder hs 2 Tendons) so I have one Tendon to keep my shoulder working..there is where the weakness comes in PLUS I had 2 surgeries on my right hand and my hand is stiff (arthritis) surgeries were due to Carpel Tunnell and then my forefinger got so painfulllllll come to find out it was Scar Tissue and it had to come out...no more finger pain..

Arthritic pain in left thumb at the top base...I had the works..shots..braces..pt..none of it worked...my Specialist said he could remove the arthritic riddled Tendon from thumb and take part of a Tendon out of my Forearm and re-work it into where the arthritic Tendon was removed..it will be a year in April and my hand is so stiff...nothing to do put exercise it and keep heat packs nearby to ease the tightening of my fingers..

Now my left shoulder is acting up badly and PT isn't working so I will be making ann appointment with my shoulder specialist..I keep putting it off in hopes my shoulder will stop hurting but it's not..

I just got a new Medical Insurance so I have to see how it will work with this Specialist and how much I'll have to pay out of pocket

My friends no longer call or come around because I'm sick all the time and it's such a drag for them to keep hearing me say 'not this time..maybe next time' because I'm in to much pain to go anywhere..(Fibromyalgia doesn't give me a time when it will strike..along with the Chronic Fatigue and Arthritis and yep I get depressed about it but theres nothing I can do..)

I hate Fibro/CFS/Arthritis...

Be Well All.

~Belle~

Last edited by BelleoftheSouth; 01-14-2010 at 09:17 AM.

 
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