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 08-18-2013, 10:36 AM #1
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In your shoes this is what I would do:

First find the very best orthopedic to due a proper and full exam of your feet and lower leg bones; including MRI and EMG/NCV testing for legs and arm. I would also get in to see a physio/rehab person that can work with your ankles to address any scar tissue that could be contributing to the loss of ROM and likely adding additional pressure on surrounding nerves and vessels adding to the swelling and color changes. Before... accepting any CRPS diagnosis.

You want to be sure that any nerve issues are ruled out or addressed before that becomes a permanent issue. CRPS type 2 is caused by major nerve damage (usually damage of a large peripheral nerve) and depending on the extent sometimes it can be corrected. A neurologist (not a neurosurgeon) with a sub specialty in diagnosing and treating neuropathic pain.

Many of your symptoms of pain, swelling, stiffness etc., can be caused by scar tissue, tendon & ligament damage and other things especially in the ankles and after a tibia fracture. A badly sprained ankle without CRPS can take up to a year to heal and unless one is extremely diligent in therapy residual swelling and loss of ROM will continue long after it has healed. Any further trauma will cause the symptoms to reappear.

With your arm and considering the cable company business you own I assume you pull wire and perform quite a bit of overhead work? If this is true have you had your cervical spine worked up completely? Many problems with the arm and hands stem from C3-T1 and could have been exacerbated by the auto accident, electrocution and daily duties of your job. It is also possible that some of your increased pain, loss of ROM especially in your ankles can be worsening because of the lack of insurance and proper initial treatment.. a common latent problem for nursing our own wounds when insurance or personal reasons for not seeking care prevail - it would seem prudent to seek a full workup all things considered before assuming it is CRPS.

Personally I would try to remain as optimistic as possible that some of these symptoms are treatable and not a result of CRPS just YET and hopefully never!

I am an eternal optimist and it sounds like you are too.. don't give in just yet, it sounds there are enough gaps in treatment and concurrent injuries as well as repetitive things that could likely cause ongoing issues besides CRPS.

You mentioned medications - what have you tried?

Flexeril would be a good one for the stiffness
Lidoderm patches for the sensitivity
Vitamin B12 for nerves (many people are low in B12 and this can cause serious problems)
Vitamin D3 for bone and tissue repair

Pool therapy would be very beneficial considering your ankle/leg injuries.

I do hope for you that CRPS is not your diagnosis!!

Take good care & stay positive,
Tessa
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Old 08-18-2013, 02:20 PM #2
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I'm with Bram it sure sounds like classic RSD/CRPS but I sure hope not for your sake. Both Bram & Tessa have given good advice. I've had CRPS since Dec. 2012 after surgery for a badly broken wrist. My symptoms are from my finger tips to mid forearm but now to my elbow. I have very little range of motion in my hand and cannot straighten my fingers. I had never heard of it until then and I'm middle aged.
Since then I've done a ton of research and have been lucky to find a Pain Mgt. Dr. who is very knowledgeable about CRPS. This site is a great source of knowledge, advice and SUPPORT!
Again, I can pretty much echo their advice. Frequent GENTLE movement is good but not to cause pain. It's really good if you can find good Physical Therapy.
The only thing I can add is in addition to meds. is 1000 mg. vitamin C - that's supposed to prevent spread and I hurt more if i don't take it.
There's also American RSD Hope at RSDHope.org - they have lots of info. and I think there's a link to articles by Dr. Hooshmand, he's an expert on this subject.
Wishing you relief!
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Old 08-19-2013, 02:32 AM #3
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The way it has spread from slight trauma is typical of CRPS and nothing else so I'm virtaully certain you have become a sufferer. As Bram says you need to find a real specialist and let no one else treat you or there is a good chance they will make things worse
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Old 08-20-2013, 09:49 PM #4
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Sorry to hear about your pain. I think the others who have replied have researched crps and seen more stories than me, so I don't have much to add. I just wanted to say that my crps is pretty mild. Before I got treatment, my pain level was probably a 6 on my worst days. I never stopped being able to walk (crps is in left foot), and have not limped since the first two or three months.

Just wanted to add this so you know that pain you describe as about a 5 may not be inconsistent with crps.
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