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 10-01-2012, 11:30 AM #1
LARRY1135 LARRY1135 is offline
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Default New to having CRPS/RSD

Hello all,

A little back story:
I had surgery on my left elbow and hand 7 months ago and I have had nothing but chronic pain since and I was in much better shape before the surgery. The surgery I had was cubital and carpal tunnel at the same time. I found out afterwards from other former patients that their surgeons said it is NOT a good idea to have both done at the same time due to recovery problems.
Now, I am being told that I may have CRPS/RSD but I do not have all of the symptoms. I can tolerate touch to my hand and I do not have discoloration. The symptoms I do have are chronic pain that can be intense considering how long it has been since the surgery, stiffness, swelling, sensitivity to temperatures and no way of normal relief.
From the looks of it I probably have CRPS/RSD but I want to rule out it being a failed surgery that may have just ended up keeping my nerves entrapped. One other thing that occurred after the surgery was that they had used dissolvable sutures that never dissolved and were in for nearly a month causing me further discomfort and embedding into my skin they had to be removed in the office as they never dissolved. Even though I did my occupational therapy shortly after and did my at home exercises I sometimes wonder if the nerves got trapped due to far less activity after recovery and the sutures binding up that area and embedding?
So, that is all the info I can think of to share now I’m wondering if I truly have CRPS or do I have nerves that were aggravated and entrapped again due to bad treatment? Anyone go through anything similar?
I don’t know what to do. I have seen a neurologist and pain specialist and I am currently taking Gralise (neurontin) and Norco plus I try to keep it moving and use my left hand and arm as normal to maintain muscle. It has been only 7 months am I only at the beginning stage and will things get worse? OMG how can I handle that. By the way I’m a lefty and that is the arm and hand that are affected. This is so hard and I’m a father of a 9 and 12 year old and I feel like I can’t live up to being the dad I use to be.

Help please

Last edited by LARRY1135; 10-01-2012 at 04:50 PM. Reason: correcting typo's
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Old 10-01-2012, 12:30 PM #2
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I am 7 months into this since my surgery and wondering if things will get worse? I wonder if it is CRPS or something to do with the surgery? Any advice on some steps to take to determine what it might be would be greatly appreciated.
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Old 10-01-2012, 07:54 PM #3
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Hi, Welcome to Neurotalk! Great to have you. Sorry you believe this is rsd. Sometimes, we do not have all the symptoms at one time. This is why the specialist got rid of the stages.

Most of us end up on numerous medications to control the pain and the other symptoms related to this monster of a disease. example. I am on Neurontin, which helps with the burning and the electrical shocks, Butran's that helps with the pain, clonidine which helps with the pain, vasoconstriction (temperature) and the blood pressure problems that occur when your in chronic pain. Abilify, for depression for loosing my job, my life as I knew it. Stool softners because of all the medications, Zofran, for nausea and vomiting and nexium from all the medications. Last but not least. Estrogen for the hot flashes.

UGG! I am a walking drug store.

Not everyone needs all this. This is what works for me anyway, welcome to the group.
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Old 10-01-2012, 08:24 PM #4
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My affected area is also in my good hand/arm. I've also had surgeries on my hand that may or may not have made it even worse.
Finding the right doctor(s) will be key in understanding exactly what you're dealing with. Having an ortho, a doctor for pain management, neuro, physical therapist and whatever else you can muster together to make a team working for you, that's when you have the highest chance of stopping or slowing down rsd. Thats what I try to do.
As a result, I feel im getting the right medications, treatments and therapies I feel will help me the best with what situation I am in personally.
Everybodys situation is different but early treatment is a big plus. I wish you luck, I also have children and am fairly new to this so I feel for you.
Good luck and best wishes.
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Old 10-01-2012, 11:34 PM #5
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It certainly sounds like RSD to me but can't you get a scan to ensure it is not a trapped nerve.
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Old 10-02-2012, 10:51 AM #6
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Quote:
Originally Posted by Kevscar View Post
It certainly sounds like RSD to me but can't you get a scan to ensure it is not a trapped nerve.
What kind of scan like and MRI?

I had one and was told it looks like I have a full release but, they did not do a contrast so I wonder how that can be seen.
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