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Chronic Pain With Pots


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Hi everyone, I have posted a thought like this before, but how many of you are suffering from chronic pain with your POTS? I am being told that it is due to fibromyalgia but has anyone else been told that they have another reason for the pain. My Nuero Doc at Mayo Rochester says that pain isn't part of POTS, but Dr. Goodman disagreed last year.

Can people comment on their pain and the reasons their doctors felt they had pain? Thanks!

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I think a lot of people here have Ehlers-Danlos Syndrome or joint hypermobility syndrome. There is usually a fair amount of pain associated with these and other connective tissue disorders.

Welcome! Hope you find some answers here.

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I have had pain with POTS too.

The most horrible are the headaches that feel like they could just drop an elephant.

Also muscle pain, joint pain, flank pain, neck pain and back pain.

For one solid week the soles of my feet were very painful and when I got up and put my feet on the floor I would be in tears.

I have also had pelvic pain that was excruciating.

It was so bad I imagined I must have pelvic inflammatory disease and then it was gone in two days and has not come back.

I usually wait for things to pass if I can before seeking medical treatment unless I get freaked out.

I think everyone here puts up with a lot and are a tough group of people.

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Lots of pain here too. I do have the Ehlers Danlos and also Fibromylgia and Osteoarthritis. I think inflammation is the cause of most all of this. There is also a new idea about blood flow and oxygen delivery going on right now. I think there is something to that too. Pain seems to be pretty common with all the associated things that go along with the "syndrome" connected to POTS.

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I have a lot of chronic muscle pain. My neuro at Mayo tried to tell me it was fibromyalgia. I know it's not. That's part of the reason why I have continued to look for a diagnosis in addition to POTS. It is possible that I have mitochondrial disease or other neuro metabolic disorder.

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Hi everyone, I have posted a thought like this before, but how many of you are suffering from chronic pain with your POTS? I am being told that it is due to fibromyalgia but has anyone else been told that they have another reason for the pain. My Nuero Doc at Mayo Rochester says that pain isn't part of POTS, but Dr. Goodman disagreed last year.

Can people comment on their pain and the reasons their doctors felt they had pain? Thanks!

I haven't been officially diagnosed with POTS yet, but I do have a lot of headaches (4-5 a week) and I also have a lot of calve pain and leg pain for no reason.

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I was diagnosed with small fiber neuropathy at Mayo after complaining of burning pain on my face, hands, feet and mouth (and at times everywhere :huh: ). But since then, my back pain has gotten worse. I went to a physiatrist who believes that the small fiber neuropathy is responsible for a lot of the random aches, cold patches, tingling, etc. It's hard to know what came first, the chicken or the egg... did the small fiber/autoimmune issue that caused my POTS which may cause me to feel normal pains more intensely, or if the pain I'm feeling is related to a joint/soft tissue disease even though my scans aren't very abnormal.

I know when I took prednisone for 10 days I had nearly no pain except for a little burning in my hands and feet. I'm going to pass this on to my PCP and she'll probably run labs to check for autoimmune again, but they've been normal during the several times before they were checked. So we know that inflammation is causing my pain, but prednisone is certainly not a good long-term option. So I try to keep busy when I can to keep my mind off the pain. Laughter and a positive mindset are key.

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Hey Emily,

Since there is no diagnosic test for fibro how can he be so sure you have it at all? My neuro feels they are learning things about POTS everyday and the pain we all seem to have could be related, it's way too soon to rule out either as a cause.

You can add me to the list of very bad joint and soft tissue pain, I have it weather I'm laying, sitting or standing. I hope you can find somethings to make you feel better.

Hi everyone, I have posted a thought like this before, but how many of you are suffering from chronic pain with your POTS? I am being told that it is due to fibromyalgia but has anyone else been told that they have another reason for the pain. My Nuero Doc at Mayo Rochester says that pain isn't part of POTS, but Dr. Goodman disagreed last year.

Can people comment on their pain and the reasons their doctors felt they had pain? Thanks!

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I was also diagnosed at Mayo with small fiber neuropathy after they tested some nerves around my ankle and calf. It started as burning in my feet, then pain progressed from my feet into my hands and wrists. It makes it very difficult to hold heavy things or open up things in the kitchen...Have you been checked for that? It can be caused by our autonomic dysfunction or other reasons.

Hope you feel better soon,

Jana

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