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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=brighteyes_007]I don't know if this is the best day to reply to your post since I am having the biggest PITY party you have ever seen but here goes.

I have had RSD for 3 years now. I worked up until they did an arhtroscope of my shoulder and my left side--neck, back, shoulder, arm and hand is affected with RSD.

My doctors are very good and pretty much let me control the medications I take or don't take. Yes, I live in pain 24 x7 but I much rather do that most of the time then be a zombie the rest of my life.

I can't work no doubt about it. I worked as THe Laboratory Manager and Bench Tech for almost 25 years at a private clinic. Ican't hold a needle in my left hand nor would I tust my judgement due to the years of pain which DO affect your memory and decision making senses. I once could do 10 different things in my head and work on testing at the same time. I am lucky now to be able to keep the train of thought to write this response. I can tell you I would not want me making life and death decisions for a patient in the state I am in right now.

I have lost my income from my job which was 40% of our household income. I could not file for unemployment because I am not able to work. I was turned down for disability because the I guess the disability doctors I saw thought I should step into that lab again. I wonder if they really want me making the decisions which my testing would tell the doctors how to treat them. ANyway, I have an attorney and have been fighting my insurance company and an appeal to the disability people for over 2 years now. So, that means I have not had any income for all that time.

What do you do ?? You find doctors that are interested in you and your care.
You find doctors that will reevaluate you and tell you straight what to expect and what your expectations should be. You understand that the system is not for you it is to keep you OUT of it so they don't have to pay money to you. THey don't care how you will support yourself or your family. THat is not their problem. You get a knew attorney if you have to that will listen to you and be on your side. If he/she is not totally committed to you then you have lost already.

And most of all you don't do what I am doing today...fall into a black pit where nothing seems to be right. I know mine is because my doctors wanted me to get off my medication that treats depression for a new medication that also could help with nerve pain. I was forwarned that for about 2 weeks I wouldn't feel good mentally or physically but I really didn't expect it to be this bad.

Take care..search for people with a true understanding of RSD or CRPS as it is now called. I have not seen a pain managment doctor because my neurologist is treating me. I have done extensive research into the treatmenst pain management doctors use and other than invasive methods my neurologist is very capable of treating me. I have read alot on this board and spoke to many people that have had sympathetic nerve blocks with little or no success and if it did help them then they had to have it done repeatedly. That treatment is not for me.

I don't know if this has helped you any but is the way it is ...at least for me.

Take care and God Bless,

brighteyes[/QUOTE]

[COLOR=Magenta][B]Brighteyes:

You have been lucky to find a knowledgable neurologist. Where I live, there wasn't a neurologist who was completely familiar and knowledgable in RSD. So, I was lucky to get admitted to a Pain Clinic which is familiar w/RSD and instrumental in discovering treatments for RSD/CRPS. So, the nerve blocks have been effective for myself. I guess everybodies expereince w/RSD
is different.

Ultametly, the key to getting the RSD into remission is finding a facility that is competent, patient centered, and familar with treating RSD/CRPS.

As a fellow IW I can understand what you are going through b/c I am going through some financial drama as well. Sometimes, it feels like the drama never ends. I guess this is the systems way of trying to break our spirits but we got to stay strong and lean on each other. Hang In There. [/B] :angel: [/COLOR]





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