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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

My symptoms started after a major ankle fracture followed by two surgeries (the second being a six inch incision with the ortho doc breaking my tibia in two places just to get inside my ankle to fix it. :eek:
I had my second surgery on 2/2/2005 and first noticed my symptoms about 6 weeks post-op. The pain was get worse and not better (and I was still not weight-bearing at this time) and was a burning/stabbing pain. I also noticed my foot turning purple and I had swelling (but this was normal at this post-op time). Now, 15 months later, I have severe sensitivity from the middle of my foot to my knee (it hurts to have something blowing or lightly resting on my leg). I can't wear shoe with backs or heels (I live in flip-flops and slide-in shoes). When the doctor takes the temp of my legs, my affected leg (the right) is 2 degrees cooler than the left. If I sit for too long or am active for too long, I have a hard time walking. My baseline pain level is 3-4 with peaks at 6-7.
IF YOU HAVE ANY THOUGHT THAT YOU HAVE RSD, PLEASE SEE YOUR DOCTOR. You may simply be having post-spinal surgery issues, but the chance of RSD worsening without treatment is not something you want to risk. You should make an appointment with your surgeon to follow-up and see what is going on.
To follow-up on questions regarding driving and getting into a pool. txmomof3 is correct about turning off your SCS box prior to driving. I too have the SCS implant and after the normal 12 week recovery, I was able to get into my pool and lay on a raft. Prior to my injury, we used to play volleyball in the pool all of the time. However, now that is no longer possible.

Marie :angel:

[B][U]My background on RSD:[/U][/B]
Aug 2000 - Left foot surgery
Sept 2000 - Right foot surgery
Nov 2000 - Started experiencing a number of RSD symptoms
Nov 2000 - Jan 2001, I saw a total of 6 doctors including specialist at Cleveland Clinic
Jan 2001 - Diagnosed with RSD
Feb 2001 - Nov 2001 went through a number of spinal blocks & physical therapy
March 2002 - Spinal Cord Stimulator implant
March 2004 - Spinal Cord Stimulator replaced due to bad lead & battery problems
Summer of 2004 - RSD began to spread, hands were numb & arms were burning. Legs would give out and experienced continence
Sept 2004 - Spinal Cord Stimulator removed so that MRI could be done, Dr. suspicious about possible Syrinx in spinal cord. Syrinx was found in the neck area. Dr's agreed that I was permanently disabled and would not be able to return to work.
Oct 2004 - Went to 3 different Neurologist who all agreed that syrinx was not the cause of my problems.
Dec 2004 - Saw a hand specialist regarding the pain/numbness that I had only to be told that I did not have RSD (who did this guy think he was after everything I have been through, telling me such a thing). He recommended that I see a Rheumatoidologist .
Jan 2005 - Rheumatoidologist diagnosed me with systemic RSD in which all extremities are affected. I also started having RSD attacks on my internal organs. (These are so very, very painful) The only thing I can do is take oral morphine and rock through the pain episode until it is gone. Normally lasts for 8hrs or so but one time I had an episode that lasted for 3 days.
I also had my Spinal Cord Stimulator box re-implanted on 1/12/05.
Feb 05 - July 05 - continued trying various medications to help calm down my pain (none of them worked, except for large doses of morphine)
I trialed tested the morphine (Intrathecal Infusion) pump and it seemed to help me.
Oct 6, 2005 - I had the Intrathecal Infusion Pump implanted and began therapy to adjust the amount of medication that I would need.
Nov 2005 - Granted Social Security Disability due to permanently disable.

Not only do I suffer from systemic RSD but also severe depression as a result from this horrible disease.

Note: I use an electric scooter in the house to get around and I have a wheelchair in our car for when we go out.

[COLOR=Blue]God Bless all of my brothers & sisters who suffer each day from RSD.[/COLOR]

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