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 05-07-2009, 08:41 AM #1
Iffynah Iffynah is offline
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Default Hey everyone

Sorry haven't been around in a while. My computer crashed. So have to walk to the library and let me tell you its a long walk. Just a lil update. Have had the 6 nerve blocks. The PM doctor wanted 3 more to see how they work. If they don't go as well as he is expecting then I have to see a neurologist to make sure my ulnar nerve isn't trapped and if not then I go for a Spinal Cord Stimulator. I'm hoping the last few nerve blocks do me good. I really don't want the SCS. So that is about all that is going on right now. See you around sometime.
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Old 05-07-2009, 09:13 AM #2
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I hope the nerve blocks work for you!!!!
Take care,
Sherrie
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Old 05-07-2009, 09:23 AM #3
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Quote:
Originally Posted by Iffynah View Post
Sorry haven't been around in a while. My computer crashed. So have to walk to the library and let me tell you its a long walk. Just a lil update. Have had the 6 nerve blocks. The PM doctor wanted 3 more to see how they work. If they don't go as well as he is expecting then I have to see a neurologist to make sure my ulnar nerve isn't trapped and if not then I go for a Spinal Cord Stimulator. I'm hoping the last few nerve blocks do me good. I really don't want the SCS. So that is about all that is going on right now. See you around sometime.
Hi - There are still options other than the SCS. Lidocaine and Ketamine are hard to get, but they are out there. I recently discovered that a woman in RI found a ketamine trial in RI by contacting the RSDSA and asking about trials that were taking place around the country. You need a doctor referral to get you in.

Lidocaine has also been found to be effective (the longer term infusions). SCS is invasive and can cause spread. So don't just settle for something you don't want. Try to research where this stuff is being offered, and try to get your doctor to help you get what you want.

Good luck and keep on trying. Sandy
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Old 05-07-2009, 10:32 AM #4
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 05-07-2009, 11:28 AM #5
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I hope you get some relief too. I am in a similar position am doing blocks now but was suggested to try the scs temp before and this new doctor had it in a long term plan depending but as one of the later options. It is a personal choice I feel and for me it changes often. Keep us updated.
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Old 05-08-2009, 02:47 AM #6
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Default Hello

Quote:
Originally Posted by Iffynah View Post
Sorry haven't been around in a while. My computer crashed. So have to walk to the library and let me tell you its a long walk. Just a lil update. Have had the 6 nerve blocks. The PM doctor wanted 3 more to see how they work. If they don't go as well as he is expecting then I have to see a neurologist to make sure my ulnar nerve isn't trapped and if not then I go for a Spinal Cord Stimulator. I'm hoping the last few nerve blocks do me good. I really don't want the SCS. So that is about all that is going on right now. See you around sometime.

Hi Iffynah,

Praying/hoping the nerve block injections help you and give you some relief.
Good Luck.

Kate
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Old 05-08-2009, 08:33 AM #7
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Good luck with the last three nerve blocks. Hope it doesn't get as far as having to go for the SCS.

Keep us posted if you can!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 05-27-2009, 08:54 AM #8
Iffynah Iffynah is offline
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Default Back at the library.

Yeah this PM doctor is now saying that the SCS is going to be the last thing we go for. He wants to do all this other stuff first. I also have to go thru more OT and an FCE thingy. My work status is pending until that is completed. But he never put an order in for it so the OTs aren't doing it. The blocks have done me some good. My pain doesn't go up really past an 8 now. My discoloration is only in a couple spots and its usually if it gets to cold or to hot. If to hot it goes red if to cold it goes purple. I've actually been able to open our screen door without a lot a pain behind it. I still have the horrible sensitivity issues though and still some swelling. But over all I believe I'm about 20-30% better than a year ago. Talk to you all later.
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