[Dolfinz]

Hello to everyone !

I am new to this post but not this site. I have been DX'D with Thoracic outlet in my right shoulder area. But about 6 months ago I was DX'D with RSD in the left shoulder. My big problem is that I have Frozen Shoulder in the left and I am in SO MUCH PAIN ! I can't lift my arm past my waist and I am very scared.

I started PT last Friday and so far it hasn't felt any better. I am using heat and ice and of course all my meds ! I was wondering if anyone else has gone thru this and what kind of (if any) relief you recieved. I have been reading this forum for a long time and I know all of you are very special people !

Thank You all in advance..

Dolfinz

[countrymom]

Dolfinz, it is not recommended for those of us with rsd to use ice. Heat is fine but no ice. Prior to my rsd I had severe pain in both shoulders and had to carry my one arm, had trouble raising them also, getting dressed was hardly worth it. Anyway my problem was calcium depoisits laid down and around the muscles and tendons. After 2 cortisone shots to each arm they wanted to do surgury even though only had 50/50 chance of improvement. I talked them into one more shot and thankfully it worked. Still have ocassional problems. Shots are risky for us though, I don't know if prednisone would help,although it will get the inflammation out.I really feel for you, I know you are miserable. Ask your doctor for more options,maybe it is the rsd and not frozen shoulder. You need to be careful with PT as it can make the rsd worse. Make sure your pt is knowlegeable about rsd, if not find another one. If he is your only option get him material on rsd so he can read and understand it. I would be real careful with that rsd shoulder as you don't want it to spread. For info try American RSD Hope or RSDSA. Seeing as you have only had rsd for 6 mos you might want to participate in the study that NIH is doing with Neurotropin. Go to their website to see if this interests you. I went 5 yrs ago and it really helped me. All expenses are paid so don't worry about that. But once you get close to that 11 month mark they may not take you. Three more weeks and they would not have taken me. Great people, nicer people you will never meet. If you want to talk more about it I will be glad to tell you my story. I wish you luck. Marilyn

[Dolfinz]

Hi Countrymom.

Thank you for the info. It makes me feel better that you too had the same problem. I am calling my PM Doc tomorrow to see about Cortizone.. I also have PT tomorrow and I am going to talk to my therapist. What is NIH ? I will go to the website and check it out. I'm glad to know I am not the only one that has had this experience, it makes me feel better !

Thank You very much .

hugs,

Dolfinz

[Vicc]

Hi Dolfinz,

A lot of us don't like to talk about our symptoms (maybe we feel like "whiners", or maybe we're just tired of explaining them), but it helps a lot of us understand what your RSD symptoms are; some are different in different people, but some are almost universal, and some are necessary or it probably isn't RSD,

Marilyn mentioned how important timing is. She gave a lot of other good advice too. Stay away from ice! I think timing and skin color are the most important signs; others have talked about "frozen shoulder". Whether the pain is stinging or burning is important to me; so is painful sensitivity to cold.

If the skin stings, rather than totally burns, and if your skin is still red, cortisone injections can't hurt, but the most important thing you can do is begin taking 200mg of the antioxidant, grape seed extract, every day.

I don't know that GSE will help, but I know it can delay the development of new symptoms elsewhere in the body. Here is the link to my post on symptom migration:

http://neurotalk.psychcentral.com/thread27784.html

It doesn't talk about preventing RSD. My opinion is based solely on my conviction that it delays symptom migration, so it is worth trying before the disease can fully develop.

Sad to say, if your skin color has become cyanotic and cold hurts, I believe you are in the second stage and GSE won't help. It will, however protect you from further spread.

I am praying and hoping that your skin is still inflammed, but if it is blue, you have found the best place I know of for information and support. God knows we need both...Vic

[Dolfinz]

Hi Vicc,

Thanks SO much for responding. I have read ALOT of your posts and it means alot to me for your input. I don't have skin discoloration (I'm pretty tan). The pain is the left shoulder and in the bicep area. It is more of an electrical zap/stinging type of hurt along with a constant achiness. I can't lift the arm past my waist.

I can't sleep on the left side either . I use quite a few pillows under my arm when i sleep and I use alot of heat. I will check into Grape Seed Extract.. thank you for that tip. My skin hasn't turned blue but I get alot of swelling in the left arm/hand.

I totally understand about people not wanting to write about their symptoms. It helps me to know that other people go thru the things I may. I have learned alot from being in Neurotallk and I value everyone's responses.

Dolfinz- Valerie