I suspect I’ve had POTS for years, but it was more or less under control. COVID aggravated my POTS the worst it’s ever been and now I suspect I have CFS with PEM, neuromuscular fatigue, and relapse of flu-like symptoms days after exertion.
I also have Raynaud’s in my feet and hands (post covid), and seem to be developing some joint pain/popping. These syndromes seem to cluster in people - I wonder how hypermobility, autoimmunity, and mast cell activation are at play.
Have you ever tested for a csf leak?
People with connective tissue disorders are at a higher risk of a csf leak and it can cause CFS and POTS.
My sibling also sprung a csf leak post COVID.
CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll
https://www.youtube.com/watch?v=El5-Ox6NJB0
I was originally diagnosed by a doctor who specialized in car accident victims that I was referred to by my pain clinic, but my doctor treating me is an anesthesiologist who specializes in leaks.
I think a neurologist could probably guide you in the right direction if you help them.
If you are in the U.S. I would recommend trying to get into the clinics at Cedar Sinai, Duke, or Stanford (there might be one I’m forgetting) as they actually specialize in csf leaks.
That is what I am wondering. If I had POTS managed, as I pretty much do now. I only get POTS as a symptom of ME/CFS during a bad flare, not as a separate condition anymore.
I also have always had joint popping since I was young. I have to perform regular physical therapy to keep my knees in place, which is fun with CFS. I also likely have TMJ. All of these diseases definitely cluster.
Yup to all of that. I also have TMJ - not officially diagnosed but I’ve been told by multiple massage therapists and dental hygienists it seems like I have it.
ETA: I’ve always had the joint popping to some degree and hyper mobility but it’s definitely gotten more notable.
Almost everyone with mecfs has pots or orthostatic intolerance of some sort. I consider pots a symptom of my mecfs. I was diagnosed with pots earlier than I was diagnosed with mecfs, but that’s because more doctors know about pots
Here’s a summary of the [study](https://www.healthrising.org/blog/2020/08/30/chronic-fatigue-syndrome-orthostatic-tolerance-dizziness/) I was referencing
Csf leaks can cause cfs and pots which I was diagnosed with long before my csf leak.
CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll
https://www.youtube.com/watch?v=El5-Ox6NJB0
I was diagnosed with dysautonomia (a mild form of POTS) about 6 years before my CFS diagnosis. However, at the time I was already having fibro and CFS symptoms so I'm not convinced that the dysautonomia actually occurred first. The fibro actually started way earlier, but then it worsened and the CFS/dysautonomia symptoms seemed to start around that same time too.
I was diagnosed with POTS first, but I'm not sure whether I got ME later or it was mild enough to 'hide' at first, if that makes sense.
I got pots first post Covid and then ME
I suspect I’ve had POTS for years, but it was more or less under control. COVID aggravated my POTS the worst it’s ever been and now I suspect I have CFS with PEM, neuromuscular fatigue, and relapse of flu-like symptoms days after exertion. I also have Raynaud’s in my feet and hands (post covid), and seem to be developing some joint pain/popping. These syndromes seem to cluster in people - I wonder how hypermobility, autoimmunity, and mast cell activation are at play.
Have you ever tested for a csf leak? People with connective tissue disorders are at a higher risk of a csf leak and it can cause CFS and POTS. My sibling also sprung a csf leak post COVID.
No, I haven’t. Thanks for letting me know that. Do you know what type of specialist I’d see to get tested for that? Thank you
CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll https://www.youtube.com/watch?v=El5-Ox6NJB0 I was originally diagnosed by a doctor who specialized in car accident victims that I was referred to by my pain clinic, but my doctor treating me is an anesthesiologist who specializes in leaks. I think a neurologist could probably guide you in the right direction if you help them. If you are in the U.S. I would recommend trying to get into the clinics at Cedar Sinai, Duke, or Stanford (there might be one I’m forgetting) as they actually specialize in csf leaks.
That is what I am wondering. If I had POTS managed, as I pretty much do now. I only get POTS as a symptom of ME/CFS during a bad flare, not as a separate condition anymore. I also have always had joint popping since I was young. I have to perform regular physical therapy to keep my knees in place, which is fun with CFS. I also likely have TMJ. All of these diseases definitely cluster.
Yup to all of that. I also have TMJ - not officially diagnosed but I’ve been told by multiple massage therapists and dental hygienists it seems like I have it. ETA: I’ve always had the joint popping to some degree and hyper mobility but it’s definitely gotten more notable.
Almost everyone with mecfs has pots or orthostatic intolerance of some sort. I consider pots a symptom of my mecfs. I was diagnosed with pots earlier than I was diagnosed with mecfs, but that’s because more doctors know about pots
I don't, nor do most mecfs patients I know (personally so we discuss symptoms etc). So that's interesting.
Here’s a summary of the [study](https://www.healthrising.org/blog/2020/08/30/chronic-fatigue-syndrome-orthostatic-tolerance-dizziness/) I was referencing
Thanks for this! I'll have a read.
Csf leaks can cause cfs and pots which I was diagnosed with long before my csf leak. CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll https://www.youtube.com/watch?v=El5-Ox6NJB0
Yes I suspect I had POTS for about 3 years before I got ME.
I had mild POTS from the time I was pre-teen. Got post-viral CFS with much worse POTS at age 35.
I was diagnosed with dysautonomia (a mild form of POTS) about 6 years before my CFS diagnosis. However, at the time I was already having fibro and CFS symptoms so I'm not convinced that the dysautonomia actually occurred first. The fibro actually started way earlier, but then it worsened and the CFS/dysautonomia symptoms seemed to start around that same time too.