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 06-13-2007, 03:33 AM #1
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Unhappy Bumped back!!!!

I can't believe this! Cleveland Clinic calls me to tell me the Doc. I'm seeing there for my RSD/CRPS can't see me until Sept. 21st. the lady who called me said"Oh honey, please don't cry,I can't begin to understand how much pain your in"(Yes, I bawled like a huge baby.) I then called my surgeon who did my carpal tunnal surgery, told him about this.. he is the one who is trying to bump me up to Clev. faster. Well, when I told him of this situation, he got angry and said I will call the doctor up there in Clev. and tell him just how much you need to be seen faster, as the RSD has now spread, my hands are getting weaker, herniated disk, .. pain.. pain .. pain. So, please pray that they see me sooner. TIA(thank you in advance)My app. was for Aug. 17th. Clev. called and said Sept 21st. now! doesn't this just about make my RSD/CRPS flair up!! I also am seeing two specialists (wrist and hand surgeon, July 11th.) and specialist for my spine(June 21st) grrrrrrrrr Love, Desi
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Old 06-13-2007, 04:28 AM #2
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Awww, Desi, that truly sucks! I will certainly pray for you that you don't have to wait that long. And cross my fingers and toes, eyes, whatever ya need.

Bawling like a huge baby is understandable, hon. I'm pretty sure we've all done that, and YOU have a huge reason to cry.

Good luck at your other appts, although the fact that they are sooner probably doesn't make you feel any better. Tell that surgeon of yours "thanks for being him"... dr.s like that are rare and precious gifts. (I won't get on my soap-box about how pitiful that is, lol)

<<<handing Desi today's spoons>>>
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Old 06-13-2007, 04:38 AM #3
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Thank you so much for the spoons, Rogue. I appreciate the hugs and nice post back from ya. I have been up all night, in pain and my little girl had a slumber party! oh, lucky me, huh? LOL well.. now.. off to bed I go, with my best friend, my heating pad the birdies are chirping away. thanks again! Love and ((Hugs Right back attcha Rogue)) Love, Desi
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Old 06-13-2007, 04:40 AM #4
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Have a wonderful night, dream deep and colorful
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Old 06-13-2007, 07:18 AM #5
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Desi,
I'm so sorry it was changed. Let's hope that when your doc call the other doc that maybe they would be able to get you in even sooner. You know how docs take care of each others patients when the docs call each other. Till then, tell the birds to hush, sleep, and hopefully when you get up things will have happened for you.
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Old 06-13-2007, 10:22 AM #6
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Hi Desi, I'm sorry you're having such a hard time. I went through a similar experience last year at this time. By the time the pain clinic would see me, my RSD had spread from my foot up my leg above my knee. Little wonder the nerve blocks didn't work. Then they wanted to do a sympathectomy....I ran away and never went back. You are not alone in this medical nightmare. I don't know if this will help you at all but I'll put it out here for you to decide. When I reached the point that none of the usual RSD treatments had worked I didn't want to go back to the pain clinics for pain meds. So, I searched the RSD web sites and came across a place called The Arthritis Center which turned out to be 15 minutes from my home. Who would think a place with that name would treat RSD. I looked at their website and sure enough they specialize in treating all sorts of painful disorders especially RSD. I went and am so happy I did. They are great in trying any med you feel would be helpful. They are not afraid to give as much pain med as you need and they allow you to have control over what's being done to you, So, what I'm trying to say is, if you reach a point where pain clinics aren't working for you, there are other things out there. Many rheumatologists as well as physical medicine centers treat this condition as well. It took me a lot of searching to find them but they are out there. I know what you are going through and feel so bad. I wish there was something I could to to help. Please let me know how you make out. Jeannie
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Old 06-13-2007, 10:14 PM #7
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Hi Mary.. Hi Jennie.. Mary, I sure do hope things work out for the best too. I finally fell asleep at 7:30 the kiddies (My daughter had a sleep over) and they were up all night! got up at 9 this morning(The kiddies that, is) I thought they would sleep in longer! nope! anyway, thanks!! Jennie,Good idea about going on the RSD board and finding RSD. I will "check that out" wonder if Ohio has some better ones than Clev. All everyone keeps telling me, is Clev. is the best place to go. If I have to wait I will.. If my RSD spreads, I'll just show up at the ER center like that other doc. told me to do and insist I need HeLLLLLLLLLLLLLLLLP! LOL Thanks for the info again Jennie!! Gentle hugs Mary Gentle hugs, Jennie Love, Desi
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Old 06-13-2007, 10:48 PM #8
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Call EVERY day and ask for a cancellation. I was able to get in to my doc by doing that. Make sure you speak to someone each time. As silly as it sounds, people do cancel.

Hugs, and good luck.
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I AM NOT A DRUG SEEKER,
I AM A PAIN RELIEF SEEKER.
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Old 06-13-2007, 11:06 PM #9
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Quote:
Originally Posted by junk4myemail View Post
Call EVERY day and ask for a cancellation. I was able to get in to my doc by doing that. Make sure you speak to someone each time. As silly as it sounds, people do cancel.

Hugs, and good luck.
"Good idea, good, idea.. Christine!! When I first spoke to them for the very first time, I did say,"If you have a cancellation, please call me"! Clev. clinic is a good hospital and there are many on the waiting list. I will, however will call each day and bug the hell-o outta them to ask each day of a cancellation! Thanks Christine, your a gem! Love, Desi
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Old 06-14-2007, 07:32 AM #10
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Desi

Here's something I've tried when desperate. Talking to nurse/recep. etc, when they tell you that there are no openings, just say something like...Hummmm no openings hu? what is your favorite chocolat? It gets them every time. that way when you call the next day joke about trying to find some that they like. It will keep you in their mind when there is an opening, and they would tend to call you first if they can. Just a thought
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