Hello everyone… My name is Jacquelina… I have RSD and TOS…. I was diagnosed around 2 years ago for the TOS… I was in constant pain with the TOS for almost 7 years.. Only took them long enough to diagnosis it… Following that I started having swelling and skin color changed., flowed by sweating profusely…. 3 months after my TOS dx came the RSD one.. I was dx with Bilateral TOS and RSD on the right side…

I cant tell which symptoms belong to what condition … The worst one or at least as of lately:

-I am having swelling that starts from elbow up to the shoulder… Like 4x normal size.. And the bottom half of my arm from the elbow down is just white..
-swelling
-hot all the time/ with just the tips of my finger swelling.. And very cold..
-skin hot to the touch
-Molted skin changes
-Depression
-Trouble holding and writing things
-Pain levels in the high 9-10 for the last month..
-Pain from the surgical site
-Under neither my armpit is so sensitive I can barley stand to put deodorant on … and most days I don’t because of pain..
-this is one of the most painful parts…
-I will have episodes where my hand will cramp up so tight I can get it on done..
-Fire feeling in my arm of course…
-Intense burning numb pain … sometimes it feels like I am sticking my hands in glass….

Those are the symptoms I can think of right now… As for things I have tried.. I have had 4 blocks with relief for only a few hours… I have had a right rib resection with removal of part of the scalene muscle.. No relife from that what so ever.. Actually made things worst for me I think…The surgery its self was very painful and with the high tolerance to meds that didn’t help the pain at all.. I have had 3 keatmine injections… I have tried 8 different types of physical therapy and have swore to my pain doctor I will never have PT done again.. My god is it painful and ineffective… NEVER EVER AGAIN WITH THAT LOL… unless I go forth with the possible 2 rib resection on the other side then I will do pt for that part I guess..

Right now I am currently on the following meds::
Percocet 6 daily
Opana 60 mg
Topmax
Neroutin 1600 mgs a day
Hydroxine
Levythorixine
Flexiral
Allergy meds
Volatar gel
Cymbalta
Blood pressure meds Metropol
And vitamins… Milk thistle, vitamin E, calcium, flax seed, olive leaf, lysine, Fish oil, and some other ones… *** but may I suggest that all of us start taking the milk thistle.. It is great great great for your liver.. And with the medications we are all on we for sure could use something to help clear that out… I don’t know how exactly it works but my doc suggested it..

Wow Jacquelina, you are on a LOT of meds.....some in the same family. I am SO sorry for all of your pain and problems. It sounds like things have just gone from bad to worse with you. Do they suspect that the TOS (which I had to look up and am pretty sure you're not referencing "terms of service"!!) caused the RSD??? Or the surgeries you've had to try to repair it??

Have you tried a SCS??? The key to proper PT in an RSD patient is getting good pain relief BEFORE attempting PT so that you can improve your ROM and strength. You can't get a limb moving if you're guarding it from the intense pain. Was your PT experienced working with RSD??? Otherwise, you're just going to exacerbate the RSD (which I should call CRPS, but I'm lazy and RSD only requires capping and typing with my left hand!!).

Have you been to the sister forum on Neurotalk for TOS??? I think that all of your symptoms could be the RSD.....they all match what many of us experience here......I am just so sorry that you're so disabled by your pain/condition.

Thank you so much for telling us your story (to us newbies who may not have known you before). Please keep in touch and posted on your progress. I hope that they will find a different medicinal approach that can help you regain more of your life. Best wishes!! Please post any time in the general RSD forum about anything that may be of concern to you. We are all here to help each other out.

Jacqueline, We have some thngs in common. I had tos surgery w/ sympanthectomy 20 yrs. ago , for 15 yrs I called the rsd "my nerve damage" The surgery gave me back the use of my arm and alot of the pain was gone. I had other injuries that kept me "couch ridden" for several yrs. I have dealt with alot of your symptoms and have gotten relief with some and learned to live with others. Did you have surgery under both arms? Do you sweat at all? Do you do any jerking?I also had problems with PT and different exercises I've tried over the years. Scar tissue can be a huge side effect that effects everyone different and cause it's own problems. The best thing I did was see a massage therapist. She was very experienced and had a school. She taught me more about my body than anyone. We end up with scar tissue simular to someone who has had a mastectomy. between the frozen muscles(neck back right leg) and s car tissue I had alot of spasms, pain, jerking, toxin build up. you also get referred pain ( a tight muscle pinches a nerve causing something else to hurt) I saw her 3 times aweek for several years. It was painful and I was nauseated afterwards( release of toxins) i even drained thru a place in my back and one in my arm. My body couldn't get rid of all the toxins. It was months before I would let her touch my arm and I cried alot but I got better. The other thing I did was see a chiropractor she recommended .Someone on here spoke about using an applicator or what they call the "grostic technique". I was shocked the jerking I had done for 4 yrs almost completely stopped, my colon , interstitual cytistist( i didn't know alot of people had problems with this) back spasms were greatly improved. I have run out of room. email me Would love to talk of skins problelms Denise