Hello there!

First, I am so glad to find these forums! I have been pouring over posts for three days before I finally signed up. It's such a relief to see that I'm not alone and that there are people who will understand what's going on with me.

So, here's a "reader's digest" of my symptoms (with inserted sugeries).



2005:
Vision loss - went from 20/20 to needing glasses almost overnight
Difficulty focusing eyes from one object to the next
Developed floaters in both eyes
"Raynaud's Syndrome"
"Seeing Stars" when on inverted roller coasters (something I did frequently with no issues for years)
-tired hands
-pain in wrists
-difficulty doing hair/lifting arms
-fingers cramping

2006:
EMG positive for "Carpal Tunnel" on L and R wrists
Carpal Tunnel Surgery on both arms - UNSUCCESSFUL - pain returned within 4 months
Loss of mobility in R wrist do to Carpal Tunnel surgery (won't bend backwards)
Began experiencing
-vertigo
-sinus pain
-ear ringing (R ear)
-loss/dampening of hearing

2007-2009:
Lived in stupid young adult denial. I was able to function so "who cares?" was my attitude.

2009:
EMG on R arm was negative for Carpal or Cubital Tunnel - Didn't pursue situation

2009-2012:
Resumed idiotic denial. This was true DENIAL. I began hurting almost every day, but ignored it. "This is my life, I'm just going to accept it" was my attitude.

2011-2012:
Began experiencing:
Hand
-tingling
-burning
-numb
-cold (to the point of hypothermia/frost bite pain)
-discoloration (blue or red and splotchy)
-loss of use in 4th & 5th digits on R hand
-no grip
-dropping objects daily
-inability to play piano or perform other "dexterous" funtions
-throbbing in flesh below thumb
-wasting in pinkies
-tender wrists
-no sensitivity to pain in 4th & 5th digits on R hand
-tolerance to boiling water (hands are so cold that hot water doesn't "feel hot")

Forearm
-burning/pulling
-numbness
-easily fatigued

Upper Arm
-burning
-shooting pains
-unable to hold arms above head / perform normal activities (blow dry hair, put on make up, etc)

Shoulder
-stiff
-chronic popping in R shoulder, multiple times in one rotation
-pain of varying locations and degrees

Neck
-stiff
-loss of mobility
-constant desire to crack neck, stretch backwards, "shake it out"
-pain of varying locations and degrees

Face/Head
-facial numbness on R side
-watery eyes
-blurred vision (comes and goes)
-migraines in lower back of head
-TMJ on R side

Other
-popping in R hip with every step
-asthmatic symptoms (but not asthma)
-"acid reflux" that does not respond to Prilosec treatments
-tightness in sternum/chest area
-vocal problems (I am a singer, unable to breathe in diaphragm normally, chronic scratchy throat, pain when inhaling)
-decrease in basal body temperature (went from average 98.5 to 97.6*F)
-inverted rollercoaster led to 100% black out (really freaky)

2013:
Hand
-periods of total paralysis of 4th and 5th digits on R hand
-loss of use of 4th & 5th digits on L hand

Shoulder
-Winged Scapula on L shoulder
-Debilitating pain on shoulder around Winged Scapula
-Drooped shoulder on R side (significantly lower)
-Radiating shoulder pain on both sides
-Pain radiating into arm pits and around "sideboob" (haha) areas

Other
-Cold/chills in my whole body, radiates from sternum down my arms and my lower limbs are cold as well. This happens constantly and it doesn't matter if I'm in a 79* room or not. My hands are ice and the rest of me is "chilled".



In the last YEAR the following tests have been done and come up normal:
Hearing Test (100% L, 90% R)
Larynscopy (sp?)
EMG/NCV R & L arms
Cervical Spine MRI
Brain MRI
Myelogram (requiring blood patch - sigh)
Back X-Ray


Diagnosis that have been wrong:
Bronchitis
Vocal Abuse
Residual Carpal Tunnel
Cubital Tunnel
Ulnary Neuropathy
Nerve Pinch in Spine
Brain Tumors
Insanity (okay, a doctor didn't diagnose that.. I think my mother did, though)


Doctors that have been useless:

NE Orthapedics, Gadsden AL
Baltimore Hand Specialists, Baltimore MD
Ruiz Neurosurgery, Gadsden AL
Caldwell ENT, Gadsden AL


Current medical treatment:

Seeing a local nuerologist that feels I have TOS (he said this after only TEN MINUTES of reviewing my situation/films). He has ordered neck X-Rays and I return to him in 1 1/2 weeks.

-------------------------------------------------

So! To sum it up.. I am in chronic pain. I would call it a level 7-8 out of 10 (to put it in perspective, I thought a root canal was a 2 and delivering my daughter was a 5.. the spinal migraine after the myelogram was around a 6!)

I can no longer do any of these without severe pain:
Drive (anywhere, distance is irrelevant)
Wash Hair / Dry Hair / all that good above my head stuff
Carry my daughter
Load/Unload dishwasher
Write with a pen/pencil
Shop for Clothing (if I have to hold the clothes while shopping)
Open a plastic gallon of milk
Open anything harder than a plastic gallon of milk!
Carry a purse in any capacity (shoulder or in hands)
Sit
Stand
Lie Down
Sleep

I am hitting a point that I can no longer function.

More than that, though, I am just really concerned about what I've done to myself - on a permanent level.

7 1/2+ years of this and I never knew that my shoulders were the problem - I babied my hands and wrists, sometimes my elbows.. for fear of Carpal/Cubital.. always lifting at the shoulder to compensate. Never leaning on my elbow, always lying my arm flat and leaning forward at my shoulders to see the computer or study, etc.

Heck.. just THREE WEEKS AGO I moved out my house entirely by myself. Packed and moved tubs/boxes for two weeks straight. Lots of heavy lifting and I thought "it won't hurt my hands that much to just do this".. when it was KILLING my shoulders (this may be what triggered the overnight appearance of Winged Scapula).

Biggest warning signs I'm worried about right now:
Winged Scapula accompanied by debilitating pain in entire area
Paralysis in R hand 4th & 5th (~80% of the time)
Ischemia of R hand (no circulation = strong discoloration, more frequent "cold spells" and loss of mobility)
Facial Numbness/Poor Response on R side (smile is uneven, etc)
The "cold spells" being all over (legs, feet, both arms, radiating from sternum/chest)

I just wish I had realized sooner.. gone to someone sooner.. tried something sooner..

It's good to see others with my same problems, though on varying levels.

Has anyone else gone this long without even knowing what was wrong with you..? And pushed yourself this hard?

At what point do you stop forcing yourself to "function"? I am a single parent with a 3 year old. My parents are both disabled/have medical issues. When do I just tell myself "stop it and lie down, you are DISABLED" versus sucking it up so that I can get my kid to school or take out the trash...? Normal things that normal parents/people do!

[note that every symptom listed above from 2005-present is still present, most are just "chronic" or "severe" now, compared to at onset]