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 08-30-2016, 09:12 PM #1
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Default RSD, SFN, MG and Hypothyroid

So I acquired RSD from a fall down the steps almost 30 years ago. 8 years before I had half my Thyroid removed due to nodules. After 10 years of treatment, I found remission from RSD through Tegretol. I had occasional small relapses. Fast forward 10 more years and I began to have severe muscle weakness, sometimes almost paralyzed limbs and weird sensations. I was diagnosed with Myasthenia gravis, a rare neuromuscular autoimmune disease as well as hypothyroidism. I still had other unexplained symptoms. They kept testing. They did a tissue biopsy and found small fiber neuropathy. They did a muscle biopsy, showing mild angular atrophic fibers. They did a couple of brain MRI showing increase intensity of foci. Does anyone else with RSD have a history like this? Am I crazy to think this is all related to the RSD? I feel like my whole nervous system is being attacked. Oh by the way the RSD pain is coming back.
Any insight would be appreciated
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Old 08-30-2016, 09:53 PM #2
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It is pretty common for those with RSD to also have other autoimmune diseases.

I've had RSD for 7 years now and I was just diagnosed with small fiber neuropathy...though I haven't had my first appointment yet with the neurologist since the pain management doctor diagnosed it with a skin punch biopsy.

Hopefully someone else can chime in with more experience with this.
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Old 08-30-2016, 11:00 PM #3
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Thanks, so Is RSD considered to be autoimmune too? I get IVIG and it helps all my symptoms
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Old 08-31-2016, 09:14 AM #4
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I have CRPS, and was in latest years diagnosed with Menière's. I don't believe it's related at all.

I mean, it's not as if it all *has* to be. Until there's proof to the contrary, I'm just assuming it's two different disease processes (well, they *are*).
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Old 08-31-2016, 09:53 AM #5
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Hi Kathie,

I am sorry you are having to deal with so much and hope your MG is under control. I am glad the IVIG is bringing you relief on so many levels.

There has been research in the last few years by Dr. Louise Oaklander showing a correlation between small fiber neuropathy and CRPS. There has also been research by Dr. Andreas Goebel showing an autoimmune component in a percentage of CRPS patients. IVIG has been given as a treatment for CPRS and there was a recent trial for it. I am not surprised that IVIG helps.

Here are a couple of links to peruse. There are numerous articles on both subjects available. The SFN article is a heavy but very interesting read about nerve injury in CRPS 1. Though I feel fairly well read, I encountered some technical information in this article that gave me a few aha! moments. The autoimmune link is just a nice, easy summary.

Autoimmunity Linked To Complex Regional Pain Syndrome - Chronic Pain

http://rsds.org/wp-content/uploads/2...eurol_2009.pdf

Sending thoughts of hope and healing,
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Old 08-31-2016, 04:32 PM #6
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My 2cents, I think it is all auto-immune related, which is why LDN seems to help so many varied ailments-they are all auto-immune related.
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Old 09-02-2016, 11:36 PM #7
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Quote:
Originally Posted by Littlepaw View Post
Hi Kathie,

I am sorry you are having to deal with so much and hope your MG is under control. I am glad the IVIG is bringing you relief on so many levels.

There has been research in the last few years by Dr. Louise Oaklander showing a correlation between small fiber neuropathy and CRPS. There has also been research by Dr. Andreas Goebel showing an autoimmune component in a percentage of CRPS patients. IVIG has been given as a treatment for CPRS and there was a recent trial for it. I am not surprised that IVIG helps.

Here are a couple of links to peruse. There are numerous articles on both subjects available. The SFN article is a heavy but very interesting read about nerve injury in CRPS 1. Though I feel fairly well read, I encountered some technical information in this article that gave me a few aha! moments. The autoimmune link is just a nice, easy summary.

Autoimmunity Linked To Complex Regional Pain Syndrome - Chronic Pain

http://rsds.org/wp-content/uploads/2...eurol_2009.pdf

Sending thoughts of hope and healing,
Thanks for the info, I thought it had to be related. I just worry because most of the drugs used to treat the RSD, exacerbate the MG. So I am very limited to my treatment plans. And the disease kick each other off. And heat is the worst time for me
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