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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   new dx of SMPS (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/188402-dx-smps.html)

cheryl1593 05-12-2013 07:59 PM

new dx of SMPS
 
I could not find sympathetic maintained pain syndrome on forum so don't know if I am in right place. I am new dx and I am so relieved I am not crazy. Thank god for that one. I have no pain meds and I am suffering right now. you can read what happened on introduce yourself thread above.

I was called liar by a new MD. I moved recently and had to change doctors. I made mistake of thinking everything would be ok.

I don't see the new pain doctor until 16 may. I went to 2 ER.....NOBODY tried to help me, just judged me on the spot. BUT to their defense I did not know this is a severe pain syndrome and I have had this for 10 years so I don't writhe in pain anymore. I look almost normal except my back jumps. Also I don't express my pain anymore as I have learned to mask my pain for other people......sad huh. I finally found my own diagnosis by looking up my symptoms.

Anyway hello, and if anyone knows where I should post ....let me know....thanks.

ginnie 05-12-2013 08:10 PM

Hi Cheryl
 
Welcome to Neuro Talk. You are in the right forum, and you can post really anyplace you want. I am so sorry you are experiencing RSD, coupled with doctors who are NOT responding to you in any meaningfull way. That is not a good experience I know. You have to keep searching for that physician who isn't going to shoo you out the door. Sometimes doctors really don't know how to treat this. It hurts!!!!! If you post near where you live, there should be others on this site, who may have the name of a neurologist in your area that not only knows about RSD, but someone who may have a bit of compassion. If you can find that, You will have a better direction and the help you need to deal with this. I see a physiatrist, I have PN or RSD in left foot and ankle, calf. No spread so far. A physiatrist treats for pain first, and then try to help the whole body on a cellular level. Keep posting and asking all the quesiton you want. Folks will respond to you and try to help. Lots of compassion on this site, as many have experienced some severe pain from their conditions.
I hope you will continue to seek the care you need, and find that doctor who is going to listen to you, and treat you as a human being. I have had the other kind of doc. too, so I know how angry you can get when noone listens. Feel at home here, there is support, and maybe some ideas to help you. Has no doctor offerered you any ideas or treatments at all? I will be here to listen anytime . ginnie:hug:

cheryl1593 05-13-2013 08:47 PM

doctors are not listening
 
Quote:

Originally Posted by ginnie (Post 983002)
Welcome to Neuro Talk. You are in the right forum, and you can post really anyplace you want. I am so sorry you are experiencing RSD, coupled with doctors who are NOT responding to you in any meaningfull way. That is not a good experience I know. You have to keep searching for that physician who isn't going to shoo you out the door. Sometimes doctors really don't know how to treat this. It hurts!!!!! If you post near where you live, there should be others on this site, who may have the name of a neurologist in your area that not only knows about RSD, but someone who may have a bit of compassion. If you can find that, You will have a better direction and the help you need to deal with this. I see a physiatrist, I have PN or RSD in left foot and ankle, calf. No spread so far. A physiatrist treats for pain first, and then try to help the whole body on a cellular level. Keep posting and asking all the quesiton you want. Folks will respond to you and try to help. Lots of compassion on this site, as many have experienced some severe pain from their conditions.
I hope you will continue to seek the care you need, and find that doctor who is going to listen to you, and treat you as a human being. I have had the other kind of doc. too, so I know how angry you can get when noone listens. Feel at home here, there is support, and maybe some ideas to help you. Has no doctor offerered you any ideas or treatments at all? I will be here to listen anytime . ginnie:hug:

Thanks Ginnie, that post was very nice. No these doctors here are idiots. They know nothing about pain syndromes. All I was told was "I do not provide medication management" "I only do steroid injection" :eek:

Then I said "You should tell people that you don't do pain management" 'I waited 2 months for appointment" what I said was absolutely true, and he knew it! He got really mad because I called him out......to me that is fraud. Just only doing steroid injections will not help most chronic pain patients.....they need medication....well some of them do.

OMG I will see another pain doc in 2 days....my long suffering may be over in 2 days, or the pain will continue.....I won't know until then.

To answer your question, NO I have not had any help for 3 months and I am just exhausted...pain exhausted. am miserable.

My brachial plexus nerves are either wrapped in scar tissue, or just really damaged from the extra rib....or both things. I read somewhere that this condition is one of the most painful to have. I believe it too! Oh I live near the houston,texas area......Thanks Ginnie for listening. Am going back to lay down with heating pad.:confused:

ginnie 05-14-2013 07:26 AM

Hi Cheryl
 
Post again to the front page, asking for pain management in the houston area. Just in case people missed your post. I sure hope this next doctor helps. Steriod injections may be the most stupid thing I have ever heard of coming from your former doctor. Just what is that suppose to do?. Yes that was fraud of a kind. I wouldn't pay for the office call. Let them bill you for the next hundred years. He did not know anything about RSD. I am sorry this happened to you.
Right now I have a lidocane patch on my ankle. It numbs the area. Darn thing hurts pulling it off, and sleeping with bandage to keep it from coming off is annoying. Also have pain meds. Not strong, but enough to take the edge off. I do have stronger, and my doctor does listen to me. It hurts, I know, I am limping about good this morning.
Keep posting on main page and in the RSD forum. Hope you get more responses. Don't give up. ginnie:hug:


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