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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 01-29-2019, 10:35 PM   #1
LizaJane
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Hi, I'm new to this board, but old to neurotalk, having gotten much help from the peripheral neuropathy group years ago, and then the spinal group, when I had surgery. Now here.

I had a fall Christmas and broke my wrist. Dec 31 I had surgery to put a plate in my wrist, and decompress the median nerve in the palm just in case it was squished by all the swelling. (Surgeon said it was fine.). The surgery went well and I'm healing just fine. But..

i developed a burning pain in my thumb, where I had no surgery, and over the course of 5 or 6 days it increased to the point of feeling like a severe 2nd degree burn over the entire thumb. I already have a pain doc (or two), so I was able to call, and both thought it was early CRPS/RSD. I began Lyrica, which worked like a charm. The pain docs were really pleased that an RSD patient showed up so early, after not even a week of pain, and were optimistic that they could nip this in the bud. And the Lyrica worked so well, I, too, was optimistic. However, the Lyrica has given me a brain fog which is unacceptable. Let's just say I wasn't just unsafe for heavy machinery, I was unsafe for kitchen appliances. The main guy has now decreased the dose, and my head is clearer, but the pain is back. Not like a week ago, but not a happy pain.

The pain doc says that physical therapy is what stops this process. Really? I'm doing a lot of stretches and even strength for my wrist, but it doesn't seem to have an impact on the burning. Rubbing my thumb seems to substitute pressure for burning, so I do that. Light touch is a weirdness, a combination between feeling supersensitive and feeling like I'm made of leather.

So I want to mine the combined wisdom of this group: Can you help me stop this from becoming something chronic? I had a stressful day today, and clearly that's not helpful, so I did deep breathing whenever I remembered, but I need a clearer plan and sense of whether this can be stopped, and how, from fellow patients.

Also, the pain guys, both of them, would want to give me short course of steroids, thinking that could stop the march, but the surgeon says it will interfere with bone healing.

Thoughts? Does this sound like your beginning? Do you have a sense of people licking this thing with early intervention and how? I'm looking forward to your thoughts.

Forgive me if I don't reply for a day; I work.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 01-30-2019, 03:01 AM   #2
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Welcome back Liza .

I hope that members who know about RSD/CRPS will be able to offer you good ideas.
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Old 02-03-2019, 07:05 AM   #3
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Quote:
Originally Posted by LizaJane View Post
Hi, I'm new to this board, but old to neurotalk, having gotten much help from the peripheral neuropathy group years ago, and then the spinal group, when I had surgery. Now here.

I had a fall Christmas and broke my wrist. Dec 31 I had surgery to put a plate in my wrist, and decompress the median nerve in the palm just in case it was squished by all the swelling. (Surgeon said it was fine.). The surgery went well and I'm healing just fine. But..

i developed a burning pain in my thumb, where I had no surgery, and over the course of 5 or 6 days it increased to the point of feeling like a severe 2nd degree burn over the entire thumb. I already have a pain doc (or two), so I was able to call, and both thought it was early CRPS/RSD. I began Lyrica, which worked like a charm. The pain docs were really pleased that an RSD patient showed up so early, after not even a week of pain, and were optimistic that they could nip this in the bud. And the Lyrica worked so well, I, too, was optimistic. However, the Lyrica has given me a brain fog which is unacceptable. Let's just say I wasn't just unsafe for heavy machinery, I was unsafe for kitchen appliances. The main guy has now decreased the dose, and my head is clearer, but the pain is back. Not like a week ago, but not a happy pain.

The pain doc says that physical therapy is what stops this process. Really? I'm doing a lot of stretches and even strength for my wrist, but it doesn't seem to have an impact on the burning. Rubbing my thumb seems to substitute pressure for burning, so I do that. Light touch is a weirdness, a combination between feeling supersensitive and feeling like I'm made of leather.

So I want to mine the combined wisdom of this group: Can you help me stop this from becoming something chronic? I had a stressful day today, and clearly that's not helpful, so I did deep breathing whenever I remembered, but I need a clearer plan and sense of whether this can be stopped, and how, from fellow patients.

Also, the pain guys, both of them, would want to give me short course of steroids, thinking that could stop the march, but the surgeon says it will interfere with bone healing.

Thoughts? Does this sound like your beginning? Do you have a sense of people licking this thing with early intervention and how? I'm looking forward to your thoughts.

Forgive me if I don't reply for a day; I work.

Hi!

Lyrica is something they give you for the pain, but it is no "treatment" for it.

In the Netherlands they do the Dutch treatment: DMSO, acetylcystein, vit. C in high doses.

In Belgium they do this: calcitonin injections (early stages), and bisphosphonates for recalcitrant CRPS (if in later stages)

But all of this doesn't exist in the US, I'm afraid.

So you need to ask your pain doctor what your treatment options are. Sooner rather than later!

Good 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 02-03-2019, 04:40 PM   #4
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Thank you. I'm doing better just on Lunch. Not perfect, bit but awful.
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---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 02-03-2019, 06:15 PM   #5
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They used to try an injection " block" to try to head it off early on..
Is that still done?

Try a forum search for stellate ganglion block?? I think that was the name of it..

Pubmed has studies & info too..
Ganglion blocks as a treatment of pain: current perspectives
Complex regional pain syndrome type I: efficacy of stellate ganglion blockade
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Old 02-05-2019, 01:05 AM   #6
rsdno
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Default We Get RSD Differently accidents strain etc

Since we get it differently we feel it differently I take a strong pain killer and in the amount I take it doesnt effect me mentally ,though I follow the Doctors orders and have never in 65 years had a drink and here in Oregon Pot has been legal a long time but it only exacerbates my pain ,. I am lucky in these dark times to have a Doctor who is an epert in Pain Management and not an Anesthesiologists (they are great if they work but after 50 or more they just make things worse for me.
You may have to make a decision between pain and Lyrica ,I wish you well rsdno
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Old 02-06-2019, 02:17 PM   #7
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Hi and welcome! I too was diagnosed quickly after surgery, relatively speaking. Mine was approx 2 months after but the pain began immediately and was not at the surgical site so I knew something was wrong. I unfortunately used a lot of ice which I know now was a bad idea. For therapy focus on desensitization as well as mirror box therapy if you can try those. There are even YouTube videos on how to do both I believe. The mirror box did not work for me but it does work for some folks and is free and easy to try. Desensitization is really helpful for me.

You can also try injections - I did lumbar sympathetic blocks for my leg which did not work for me but do work for many. I think they have a version for arms/hands. I did PT as well including aqua therapy which all helped with my knee, where I had surgery, but not the CRPS pain. I tried laser therapy even before it was officially diagnosed when they were thinking it could be a hematoma - no relief from that either. I would try just about anything at this point.

What does work, for me (and again, we are all different which is very frustrating), is a combination of medications. I do lyrica (50 in AM, 100 in PM), Celebrex (100 2x/day) and hydrocodone (5/325) up to twice a day and tizanidine 2mg for muscle spasms. I also use lidocaine patches, heating blankets/pads and moderate exercise/activity to help.I find if I am moderately active I have less pain than if I do nothing so I go to water aerobics classes and walk 4 miles most days. I also rely on my faith and family to help me through it and try to do things to keep my mind off of it. I do mindfulness meditation and light yoga too. Basically, I just keep going...and you can too! If you have any questions feel free to ask away!
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Old 02-10-2019, 12:24 AM   #8
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Try Gabapentin and see if that works better for you than Lyrica. PT is hugely important, but you won't notice a change immediately. You need to do desensitization for the burning sensations, which can mean just stroking with a cotton ball gently for 20 seconds at a time, never letting it get to the point of triggering the burning. And just doing that maybe 10 times, whatever you can manage. But then doing that several times during the day. Dipping it in room temp water. OR cool water. In and out.

There are some anti-depressants that also work on nerve pain, so if Lyrica/Gabapentin make you too foggy, that may be another option. But don't give up entirely on Lyrica/Gabapentin, sometimes you just need some time to acclimate and won't be so foggy.

Nerve blocks are one of the standard early treatments used to try to stop RSD/CRPS. Since mine is in my foot it was a lumbar block, not sure how they do it for arm/hand.
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