Hello, my name is stephanie, im 29 yrs old and im going thru alot. I'll try to make this brief & to the point. Started when i was 16 & i got hit by a car while walking across the st. I had a huge bruise on my left hip the size of a soft ball, my shoulder was injured & ny feet swelled fora few days & i couldn't walk. But i never got checked by a Dr. My injuries healed & i moved on w/my life. I would occasionally get lower back pain, but not bad. Also i have always been very active since a young age. Have had many jobs & loved life. However about 6/7 yrs ago, the pain started in my rt shoulder & my upper spine between my shoulders. Still, i managed a pretty good life & i could work w/out a problem. About 2 years ago tho, the pain started getting pretty bad after i startrd a new waitressing job, the place was new & VERY busy. I was working long hours, carrying very heavy trays, plates & glass ware. This is when.my symptoms got bad, very quickly. I ended up losing my job bc i couldn't tolerate the pain.
It started w/my right shoulder. Excruciating pain, it feels like im being stabbed with a knife, hot burning unbearable pain. No matter what position i am in, the pain doesn't go away. Its been constant for well over a year. Then my elbow,wrist & hand (all right side) were experiencing severe pain. I have been seeing doctors for years now, and all they said was golfers & tennis elbow & unstable wrist. I never immobilized my arm or was ever bedridden. My lifestyle did not change, yet my arm has considerable and very noticeable atrophy.

My right shoulder has significantly "dropped" and has lost a lot of muscle mass, aswell as my elbow and hand. The skin on my hand is SUPER sensitive, where i can't bear anything cold (water, ice, cold air etc.) Just the slightest touch is agonizing. I cry so much from the burning stabbing pains i get throught my entire arm from shoulder to my hand. My upper spine is so tight an painful, like it's being squeezed & twisted.

I get pains at the base of my skull (like a sharp ache almost, like its being stretched badly) i occasionally get electric sharp pains that feels like they're in my brain. I've also noticed my vision has been getting blurry, and i occasionally get twitches in my left eye lid, and i feel pressure when looking in certain directions. But not my rt. Eye. Im constantly dropping things, my balance is off, constable tripping. My grip stregnth is so weak, as well as my entire arm. (I have ti take breaks when.i AM able to do my hair, or housework. I am always tired. I have really bad insomnia & I'm lucky to sleep for a solid 1 or 2 hours b4 my pain wakes me as if im being stabbed!! My memory is getting pretty bad (I've always had a great memory) now, ill forget what im saying mid sentence. I'll get up 2 get a snack from the fridge, and end up in my pantry, forgetting what i was there 4.

Also, i dont have any noticeable inflammation, but i do have warmth and redness in my tender areas. Also, my upper spine gets SO HOT & sweaty. My skin is very dry now on my right arm.

I started PT today, very minimal bc i lost alot of ROM in my shoulder. Im now seeing a Physiotherapist (thankfully he is very kind, caring & understanding) hes giving me meds for the pain. He's assuming the atrophy is from disuse. Also, im a new patient to him. BUT, this is my dominant arm, no atrophy in my left arm & no dramatic lifestyle changes.

I know something is not right. I know my body. The fact i lay awake, crying & moaninh in excruciating pain, that is quickly and rapidly progressing. The atrophy came on rather quickly, within a few months. Im also very irritable & have anxiety now. Also, when im laying down, w/my arms resting on my belly, they go numb (pins & needles) within a minute. I also get muscle twitches in my right arm & left thigh & when im sitting in a chair, legs crossed, i have to keep uncrossing bc my legs go numb & hurt.

Ive noticed my speech is a little off & i sometimes struggle pronouncing words (never had this problem ever in my life). I've also noticed i choke more while drinking (like goes down the wrong "pipe" & occasionally have trouble swallowing) poor appetite. Just so many things. My quality of life totally sucks & i feel so alone. Like people think im exaggerating or im just lazy. I havent been diagnosed with anything. But i just feel like the docs don't listen to what im saying. They focus on 1 thing. I did my 1st PT 2day, an my whoke arm is SO sore, like I've lifted 500lb weights for 3 hours.

Im sorry for the long post. I'd truly appreciate ANY and ALL feedback. I feel so lost and alone & im so scared bc i kno something is not right. Not to mention the fact that my symptoms are rapidly progressing & my arm is rapidly deteriorating. Im startibg to feel the same shoulder pain in my left shoulder (not to bad yet). Please help and feel free to ask any questions! Thank u in advance.

Hi Steph, I am so sorry that you are suffering so much. I don't know if what you have is rsd, but I would go to a neurologist first to see what they think is going on. Then maybe an orthopedic specialist. If you have seen them already, maybe try a different dr and mention rsd to them. I know it's scary when you are in so much pain and don't know what's going on, but maybe these drs can help find out what's going on so that they can help you. I'm here if you need a friend. I hope that helps you to feel less alone. Take care. I will be praying for you.

Some of it sounds like RSD/CRPS and some sounds like TOS...
http://tos-syndrome.com/newpage12.htm

[Ive noticed my speech is a little off & i sometimes struggle pronouncing words (never had this problem ever in my life). I've also noticed i choke more while drinking (like goes down the wrong "pipe" & occasionally have trouble swallowing) poor appetite.
vision has been getting blurry
dropping things, my balance is off, constable tripping
memory is getting pretty bad (I've always had a great memory)
shoulder has significantly "dropped"
golfers & tennis elbow & unstable wrist.
]
Those sound so familiar.. I had a lot of this early on with my RSI/TOS - due to misalignment's, trigger points & muscle spasms..
It took about 2+ years to recover but now mainly just some minor lingering myofascial symptoms.
And bad weather fronts or abrupt barometric changes affect me & many with myofascial pain and TOS.

Seek the best docs & PTs you can find, or even highly skilled chiropractor if you are comfortable with that..( I had the most help from a DC that also used PT modalities.
If they don't listen don't go back. Call around or email them first and ask questions before making any appts.


Post # 1 in this thread is a crash course of links for TOS, PT/therapies & some RSD links too -
http://neurotalk.psychcentral.com/thread84-4.html

Thank you so much for your kind words and advice. I forgot to mention.that these things didng happen all at once. Ive never experienced pain in my elbow or wrist/hand. Not until about a year ago. My arm has significantly decreased in size compared to my left arm. I just noticed tge change in my shoulder recently. Its almost as if the pain spread from my upper spine, to my shoulder and worked its way down. Just the fact that i cant stand the slightest touch on the top of my hand, and i can actually see tge bones in my elbow and forearm is scaring the crap out of me. Its drastically progressed over the last year anf a half.

Sorry for the scary pain & frustration! IF you do have RSD/CRPS (sounds like it to me) you need to get treatments for it immediately before it robs you of even more. I'm not a medical professional but, I'm pretty sure mine was slowed WAY down by early nerve blocks
and meds. At the very least start taking 500-1000 mg. of Vit C., some magnesium citrate (start low on that as can cause loose bowels). Those do no harm. The Vit. C can help prevent spread & mag. helps calm nerves.
Try to get a knowledgeable Pain Management Dr. or Neurologist A.S.A.P!

Thank you for your advice. If im already taking a multi vitamin should i take more? I started PT and my arm is SO sore and its burning hot in my elbow with sharp stabbing like pains in my entire right arm. My upper back is killin me, my shoulder is excruciating too. Honestly, every night i wish i could just cut it off. I just got in to a PM doc. Hes super nice, compassionate and caring. Should i mention crps to him? Since i have only seen.him once an this has been going on (real bad) the last year and a half almost 2 yrs? The rheumatologist said he believes when.i got hit by the car, it caused some damage that progressed and got me where i am today. I just dont want 2 come.off disrespectful or like i know more than a doctor. All i know is the intense unbearable pain i feel.

Wanted to second the use of Vitamin C (especially Vit C with Rose Hips). When I first got RSD I "felt" it travelling from my right leg, to my entire upper left side. We know the feeling - like the limb isn't "ours" anymore. Then the pain starts.

As part of my regimen to combat this, I would take 1000 mg hourly to bowel tolerance. It is a proven powerful antioxidant that boosts the immune sytem. I still use Vit C anytime I feel something "coming on," and it has worked for me every time. (knock on wood right)

The other aspect that I think prevented spread from happening early on was my consistent use of DMSO on the RSD limb, and taking NAC orally (N acetyl cysteine 600mg 3x daily - following the Dutch protocol), both of which are highly potent free radical scavengers.

Vit C & NAC can be scooped up at any health store. DMSO is a bit more complicated but other threads around here go into some more detail on it.


This has not been proven, but I believe that the primary cause of spread is excessive free radical damage. Poor bloodflow caused by inflammation results in further damage to the effected area, plus a diminished ability of the cells to remove free radicals generated during their normal metabolic process. The original area of damage then produces an excess of free radicals that are free to travel throughout the body and become trapped in small capillaries (typically in other limbs.)

The Dutch treatment** concept is simple: eliminate free radicals at the source using DMSO. Free radicals that make it out of the injury site are eliminated by NAC.

Stopping free radical damaged caused by necrotic tissue (dead cells):

1) Reduces inflammation
2) Improves circulation*
3) Gives the body time to heal itself

*Exercise also improves circulation, but we want to make sure we aren't spreading free radicals and damaging other limbs. This is why overaggressive PT done too early in the process often results in "spreading" of RSD!

**Like anything else, this particular protocol is obviously more effective the earlier RSD is caught.**

Stephie -I was so scared when I first started feeling the spread. The difficulty swallowing, vision problems, coordination issues - I went through the same. I could feel "fear" in my hands and fingers. Ugh.

You're getting great input from this site. Not saying you have RSD or not - that's up to you and your doctor(s) to decide. You said you'd welcome any and all info - Just wanted to give you my perspective, for what it's worth

(Special shout out to SM who helped me guide me to this information. If you ever read this I'm eternally grateful )