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TCP

The Connection Between Pots And Neuropathy

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Many people like myself had POTS come on dramatically with neuropathic pain, which often travels up the body from the toes.
Has anyone had the connection explained? Although I have EDS (just diagnosed in my 54th year), the POTS and nerve pain didn't not occur until seven years ago. They are obviously linked but why?

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I think many cases of POTS + neuropathy can be attributed to autoimmune diseases. Thats my case. There are others that have MCAS - you would have to check with them on if that causes neuropathy pain.

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They way I understand it, for me, is my neuropathy is the cause of my POTS. No cause has been identified for the neuropathy. The pain came later, and has become worse over time. The pain has been tolerable, until recently.

I am not familiar with the connection between EDS and neuropathy.

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This is something I've been thinking a lot about too. They've recently started talking more about the connection between EDS and neuropathy, with neuropathy being the possible cause of dysautonomia. Why neuropathy occurs in EDS, I don't think they know. Could be autoimmune or I wonder if it has something to do with the relationship between connective tissue and nerve. There are other genetic conditions where neuropathy appears later in life, so maybe it's somehow built into the equation. I'm hoping now that they know neuropathy DOES occur in many EDS/POTS people they will start to explore why.

http://www.ncbi.nlm.nih.gov/pubmed/24968706

http://www.ncbi.nlm.nih.gov/pubmed/24507822

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I know there is a link with EDS, POTS and neuropathic pain and POTS and nerve pain. Obviously I was born with EDS but the neuropathy and POTS came together seven years ago.

Naomi, that would make sense about the connective tissue and nerves. The thing is when I saw the rheumatologist saw me she focused on the joint issues and didn't want to talk about the neuropathy (not her field). I see a cardiologist next month about POTS and I'll see what she says about the nerve pain. She may gloss over it. I have seen a neurologist and he was useless.

Thanks for the links.

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Hi TCP,

Our cardiologist has told me that this is a very hard thing to treat and it does go along with POTS. Unless you can really figure out what is causing it, you are kinda stuck with it. I keep hoping my son will get some relief with his current treatments. If it's something autoimmune and the body keeps allowing it to go on, it's hard to stop the cycle until you find the right medication or treatmen to block the cycle. There are several medications out there to try but until you find the cause, you may have to live with it until research catches with POTS. This is a bad deal for anyone that is having to deal with neuropathy on top of POTS. Here is an article that discusses peripheral nerve pain. I believe this is what my son is having to deal with.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

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I think I misunderstood your post and thought you were asking the possible link between EDS, neuropathy and POTS. Sorry about that! And I assume we're talking about small fiber neuropathy here? If your rheumatologist wasn't concerned about the neuropathy does that mean there was no investigation into what could be causing it? I would hope they have looked for possible causes, such as autoimmune conditions, Lyme disease, vitamin deficiency etc. etc. (there are so many possible causes of SFN). I'm not sure a cardiologist would be the one for this kind of investigation? A good autonomic neurologist or neurologist with specialty in neuro-muscular disease (neuropathy) with knowledge of dysautonomia would probably be better. I've only settled on EDS as a possible explanation in my case because I've ruled out just about everything else that can cause SFN.

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I would like to know this for sure. I have noticed though that when I have pain I generally have blood pooling time. Compression socks take the pain away from my feet

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