Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-04-2007, 09:54 PM #1
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Unhappy Sick of this!

Hi friends! Ok.. I am sick and tired of my surgen(the one who did the Carpal tunnal surgery) he found out I have tendinitis and ordered me some pain pills. (he didn't even get on the phone with me!! had his secetary tell me I have this!) ok.. I get a call from my pharmacy(Walmart) and they tell me to take a pill every 8 hrs.) vicoprophen?/ what is this?/friends, this pain is unbearable!! I have sever pain from my CT surgery still!! swollen hand, wrist, upper arm and now my shoulder! I have had this wrist pain and swollen hand since my surgery, whick was done Jan. 9, 2007 and my shoulder pain since the middle of March!! then he tells me I indeed have RSD and my bone scan showed up wrist inflamation. This surgeon is trying to get me off his back, I just know it! my other 2 speclists I go to are not until June 21st.. and the other one is July 11th. Now, the pain clinic in Cleveland, Ohio is not until late Aug. (The 16th. or 17th.) this is terriable!! the block never worked because the surgeon said he found a herniated disk in my neck.. blah blah.. I am NOT myself. I am in constant pain. my hand wrist are red, then blue.. ice cold. I'm ready to just throw in the towel. this makes me so mad. I had those blocks for NOTHING!! I can't stand that pain Dr. he called and wants to see me June 6th. for what?? more blocks?? no thank you!! Love, Desi
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Old 06-04-2007, 11:02 PM #2
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Desi
I had carpal tunnel release on both hands last summer and haven't been back to work since. I am glad to say I haven't had to see the ortho surgeon since January He totally dropped the ball when it came to the RSD, the PT was the one who diagnosed me.
What I don't understand is that from everything I read they say early treatment has the best success. Why does it take us so long to get to the right specialists?? All of the specialists I have seen took months to get appointments with. Then they try to do catch up....for me too late.
Maybe the doctor on June 6th can give you some pain meds that will give you a little relief until you see the other doctors.
Hang in there
Jeanne
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Old 06-05-2007, 01:30 AM #3
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Desi
I had carpal tunnel release on both hands last summer and haven't been back to work since. I am glad to say I haven't had to see the ortho surgeon since January He totally dropped the ball when it came to the RSD, the PT was the one who diagnosed me.
What I don't understand is that from everything I read they say early treatment has the best success. Why does it take us so long to get to the right specialists?? All of the specialists I have seen took months to get appointments with. Then they try to do catch up....for me too late.
Maybe the doctor on June 6th can give you some pain meds that will give you a little relief until you see the other doctors.
Hang in there
Jeanne
Hi Jeanie! So your surgeon totally dropped the ball. hmmmmmmm.? Their idiots!! Yes, early treatment is for the best. I am getting ready to go see a lawyer! I guess if ya want the "right doctors" .. I guess ya have to wait. maybe, it's the one's who see ya right away is the ones we have to watch out for?? This pain Dr. that I see on the 6th. doesn't believe in pain medication's, he's an idiot. (I will NOT be seeing him ever again after I tell him off on June 6t.) LOL I did get Vicoprofen 7.5 for the pain from my surgeon that I have to take every 8 hrs. ya.. right.. every 8 hrs?? he has to be joking, right?? this pain keeps me up at night, the P.D. gave me Gabapentin(Neurotin) helps some but not wayyyyyyyyyyyyyy enough. ok.. enough of me complaining. thank you, Jeannie Love, Desi
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Old 06-05-2007, 03:19 AM #4
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Hugs. I am annoying my doctors office and inundating them with calls every day for any cancellations and messages about how I feel each day. I am being really aggressive because I AM early in diagnosis. I had my nerve block two weeks ago but I don't have a followup appt with the doc till the END of July. That is NOT aggressive enough for me.

Good luck. In my opinion, scheduling does NOT determine worth of the doctor. I just think there are not ENOUGH of them.

AND: as funny as this will sound it was also my PT (water) who informed me I had RSD.
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I AM NOT A DRUG SEEKER,
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Old 06-05-2007, 03:29 AM #5
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Doctors arent real high on my list either, heck I wouldnt even be here if one hadnt said "Oops!".

I think your still real lucky to have them at least telling you that it is RSD before the year is up. I wish I had been so lucky. A vascular surgeon finally told me I have RSD 3 1/2 years after the oops. Waaay to late!

You have to be your own advocate, and the system is against you. Be the squeaking wheel because you know what they say
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Old 06-05-2007, 04:35 PM #6
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Default Dr. Dews

Desi
A while back, I sent you a PM with info about Dr. Dews, on the east side of Cleveland. She's part of the Clev. Clinic... worked with Stanton-Hicks in the main campus but now she is the manager of the pain clinic at a satellite hospital office.

If you did not try her... you may want to give her office a call. It did not take them long to work me in when I told them I had RSD. I liked her. She knew more about RSD than anyone else I have been to. I wish she was still on my insurance!! Danged employer had to go an change companies - and she is not on the new plan.

If you do not still have the email with her contact info, PM me and I'll resend it to you if you are interested.

I am sorry to hear you have had such a hard time.

Jules
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Old 06-05-2007, 05:43 PM #7
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Doctors arent real high on my list either, heck I wouldnt even be here if one hadnt said "Oops!".

I think your still real lucky to have them at least telling you that it is RSD before the year is up. I wish I had been so lucky. A vascular surgeon finally told me I have RSD 3 1/2 years after the oops. Waaay to late!

You have to be your own advocate, and the system is against you. Be the squeaking wheel because you know what they say
You know, your so "RIGHT ON" here Allen, about saying that I am real lucky to have at least one Dr. telling me I have RSD (made me think) Allen, now that you just mentioned this about you being diagnoised after 3 yrs. made me think.. hmmmmmmmmm.. I remember them screwing up my I.V. and my hand was all messed up. I had a block when they first came out.. this block numbed my entire arm and I remember the pain dr. (she was a woman) who yelled at the nurse because she didn't give me a sling (I could have broke my arm) if I slamed it against something. This block scared me so much, when my entire arm was numb, my hand too!!I mean this numbness lasted for 20 hrs. I don't know what the heck was in that medicine!! It was a neck block(ganglion) anyway, I also liked when you said;"Be the squeaking wheel because you know what they say"... Thanks Allen and hugs to you my friend. Love, Desi
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Old 06-06-2007, 05:03 AM #8
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Default Herniated Neck Disk

Originally I thought my problem was my neck muscles. The pain would be in my arm, shoulder and chest. It turned out that my problem was pain from a herniated neck disk. NO FUN! Please, if it ever gets to the point of surgery, it may sound silly at first but before surgery, I suggest considering acupuncture along with physical therapy. It helped my herniated neck disk.

Last edited by Chemar; 06-06-2007 at 08:33 AM. Reason: commercial link removed
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Old 06-06-2007, 11:37 AM #9
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I mentioned this before - Just want to mention it again -I hope I don't sound like a broken record

If you had or have primarily - hand, arm, shoulder, neck, upper back pain or a possible repetitive strain injury {hand /arm RSI = Carpal/Cubital tunnel, tendinitis etc }.

Please read some of the links about thoracic outlet syndrome {TOS}
just to help make sure - many of the sx can overlap.

But if you happen to have a structural nerve or vascular compression - it most likely can be repaired.

TOS useful sticky thread - http://neurotalk.psychcentral.com/showthread.php?t=84
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Old 06-06-2007, 12:10 PM #10
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Wow Jo! lots of reading here!! thank you!! going to mention this to my Dr. thanks again! Love, Desi
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