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 06-10-2015, 04:42 PM #2
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Littlepaw Littlepaw is offline
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Littlepaw Littlepaw is offline
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hi Swanny,

I am so sorry you had to come and find us. It is very heartbreaking getting to that point. You will find good support here when you need to vent, ask questions or just get a virtual hug.

I would encourage you to look at the Budapest Criteria and see if you feel your diagnosis is a fit. CRPS is a spectrum and tricky to diagnose unless it is florid. Many of us have been through the "yes it is, no it isn't, yes it is" mill. Very tedious and frustrating. It is wonderful you have an early diagnosis and treatment plan. But I would encourage to keep looking for answers and not to give up on a solution or potential for healing. If there is an injury or pain contributor in your ankle that definitely needs to be addressed and not lumped in with CRPS and left as is. Addressing a pain contributor could affect your outcome.

Have you had any imaging? MRI? Ultrasound? The ankle is very complicated. It is easy to see a little swelling, feel the leg and make a diagnosis expecting the most frequently seen problem when something else is actually going on. Stay on top of your doctors. Make sure you have no stress fracture or ligament tear. A simple ankle sprain can cause CRPS, it can also cause swelling and cold temperature without CRPS.

I am not saying that you don't have CRPS. I don't think burning pain is standard for tendinitis and Lord knows any insult can set CRPS off. I just hate for anyone to go through this if there was anything that could be treated that might give a better chance at recovery and remission.

Take good care of yourself, be kind to your foot. Ignore the doomsday info out there. The majority of people, 80% according to some of the CRPS bigwigs, will improve over time. Get in the pool, ride a bike, keep up range of motion, avoid flare but keep yourself moving.

Gabapentin commonly causes weight gain and some pedal edema...but not for everyone. Vitamin C is your friend. Avoiding inflammatory and processed foods is helpful. Caffeine constricts circulation so no good there.
I have seen info about people starting out with swelling and heat and later moving into the limb being cold. However, in most of that literature the cold phase came later than 9 weeks.
Narcotics can activate glia, which are implicated in neuropathic pain. Better as a short term starter or when other options have failed to control pain.
Why would they be doing surgery? Did you rupture something? Is the tendon totally degenerated?Surgery on the anterior ankle can cause tendon bow stringing which may create another set of problems.

Hang in there and keep up the fight! Sending Healing Love, Littlepaw

Last edited by Littlepaw; 06-10-2015 at 08:07 PM.
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