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 08-25-2017, 04:56 AM #1
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I had a "cleanout" arthroscopy after my accident as well on the right side. I woke up with a leg that was black! Red/purple in bed, and black when I got out of bed. They put me into bed immediately. Doctor refused to visit. I heard the nurse shout at the doctor, because indeed, I had filled out pre-op records and it said "feet turn blue". I had it bad back then, but the surgery caused it to "hit" much harder all of a sudden, on both sides. A bit after that I could no longer walk 10 steps without devices. I had 8 months of PT, only to get worse.

Then after about 3 years I got diagnosed with CRPS, but by that time it was too late for my legs (disability). And to say this only started in 2 knees (dashboard injury, and I held back surgery on one knee).

Had all the specialists I went to, only seen this sooner.

In the end I went to my GP, out of sheer desperation, and he IMMEDIATELY sent me to a neurologist, who IMMEDIATELY noticed what was up (thankfully) - I had full blown osteoporosis at that time. But all the treatments were much too late for me, they still tried, though, for which I am eternally grateful! The meds did work on the osteoporosis which is one symptom of a complex disease, but not so much the RSD itself.

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Originally Posted by rigman06 View Post
Now I'm being told that I have RSD and there is a good likelyhood that this will be permant. Can someone PLEASE tell me what I am in for...I am in soooo much pain, my current Dr will not give me any pain meds and says that I need to start pain management. Can someone please help me.
Go to pain management! They not only take care of the pain but they are excellent doctors that are well-known with RSD.

I wish you lots of luck!
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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 08-25-2017, 04:45 PM #2
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Thanks Rigman,


You're doing the right thing staying positive. Healing is possible. Some of us have found it comes in tiny increments. Rejoice in those. They accumulate over time. I had three foot/ankle operations including peripheral nerve repair for traumatic neuroma and spent a year on a scooter. My recovery did not happen quickly. But it did come. Sometimes I was just grateful I was able to do exercises and prevent more loss when I didn't see "progress".

Get that appointment and let us know what happens. Maybe ask about neridronate infusions too. There is a clinical safety trial, meaning no placebo, going. Neridronate has good results and current use in Europe. It is recommended early on so now would be a good time to check.

Here's Dr Sean Mackey from Stanford.
Treatment and Research: What's New? - YouTube

And here's Dr. Pradeep Chopra.
Pradeep Chopra MD speaking at RSDSA's Learning to Live Well with Chronic Pain - YouTube

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Old 09-04-2017, 11:43 AM #3
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Do NOT allow a PT push you to what you feel is too far. Trust your body and what it is telling you. Yes PT is going to hurt to a degree. But creating massive pain is actually NOT a good idea in PT. You do want to keep moving as much as possible.

As far as the neurontin. Many find it helps a lot with the burning, but you may need a higher dose. I'm NOT a dr. but for me I had to take a great deal more. So its ok to go back and say that its not working, and see if they can give you more, you are on a very small dose (3600 is the top dosage) if you are tolerating it.

Many find that meds like Percocet don't do anything, but it is still common to try them in case they do help. You still have, as others mentioned, many other options to try as far as medications. In addition there are different procedures they can try, if you are open to them. Your dr. may offer them, things like a sympathetic nerve block. Go to RSDSA to learn more about the disease and different treatments, etc.
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Old 09-06-2017, 11:42 AM #4
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Hi and Welcome. I am sorry you have rsd but am glad you found this forum. I have learned to much here from other people's experiences with rsd. I also have learned so much from all the great information posted here. I have had rsd for over six years now and have learned that having a good pain management dr to help manage the pain and a good psychiatrist to help manage the depression and anxiety from having rsd helps me deal with better with rsd. Also having a great support group like the one here at NeuroTalk has helped me immensely. Hoping you find some comfort in knowing that you are not alone. Hugs and Prayers.
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