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A MyFibroTeam Member asked a question 💭
Baltimore, MD

Has anyone else been diagnosed with POTS, or issues with the autonomic nervous system? A couple of years ago, I started having episodes where I would nearly pass out after a workout, and occasionally when I stood up too fast or spent too much time in the heat and humidity. I went to a cardiologist, who, after ruling out numerous other issues, suggested it must be POTS. I’m just wondering if this is something that frequently occurs with Fibromyalgia? I also have IBS, and I’ve noticed a… read more

June 19, 2020
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Answer Summary

Members connected deeply over their shared experiences with POTS and autonomic nervous system dysfunction alongside fibromyalgia, with many... Read more

Members connected deeply over their shared experiences with POTS and autonomic nervous system dysfunction alongside fibromyalgia, with many describing similar episodes of near-fainting, rapid heart rate, profuse sweating, and dizziness when standing or after workouts. Several members shared practical strategies that have helped them manage symptoms, including increasing salt intake, taking the vasoconstrictor midodrine, tensing abdominal muscles when feeling faint, standing up more slowly, wearing heart monitors to document episodes, and pursuing the tilt table test as a diagnostic gold standard that finally validated their experiences. A recurring theme was the frustration of being dismissed by doctors who attribute all symptoms to fibromyalgia or psychological causes, the relief of finally finding physicians who think outside the box and take these debilitating symptoms seriously, and the common overlap between gut issues like IBS and autonomic dysfunction that many members have personally observed.

A MyFibroTeam Member

I do experiance something called orthostatic hypotension,, ie feeling faint if i stand up to quickly especially if i have been working out and have tight leg muscles.. i have learned to stand up slower,,, i also went to a cardiologist for heart palpatations,, i wore a monitor for a month and what she saw didnt concern her although i have had them to the point where i do feel faint,, and sometimes have dirreaha with them so sounds like we have a similar issue

June 24, 2020
A MyFibroTeam Member

My hand is up! Yes!! It was one of my first symptoms and one of the first symptoms that could be empirically measured! I was diagnosed with "The Gold Standard:" The Tilt Table Test. Boy did my doctor start treating me more sensitively and seriously after that! Up to that point, I had "general malaise," "debilitating and chronic fatigue," "slight cognitive issue of concentration impairment, and depression.

It's why I recommend testing for mediated hypotension when someone feels dizzy or slightly nauseous with no known reason. At the very least, you get one facet ruled in or out which is crucial in the detective game of medicine.

Hope this helps.

June 19, 2020 (edited)
A MyFibroTeam Member

To answer your follow up question... I was encouraged to eat a lot of salt. Even mix it with water and drink daily. When I asked him for a more livable solution lol, pun, he prescribed a vasoconstrictor now called mitodrine. 5 to 10 mg every few hours. It was a game changer! It absolutely reduced the facet of depression that was caused by inactivity and mental fatigue and I could function much more normally.🤗😎

But I can tell you something that may be of tangential relevance and that you may want to check out because
vasoconstrictors aren't safe for everyone ... down the road researchers found that a significant number of fibromyalgia patients have slight cardiac arrhythmia. I happened to have a preventive work up and neither my referring doctor nor myself had ever noticed anything unusual. But the cardiologist was older and very experienced and he detected it. He said that he would have missed it as a younger doctor but he'd learned to listen to something in particular and he caught it. In his experience he said it didn't denote any negative consequence so it was a benign characteristic but of course that may change as researchers gain more info.

Did I have this as a child or did it develop after having fibro and would either option signify something? We don't know yet.

June 19, 2020 (edited)
A MyFibroTeam Member

My problems are definitely related to my gut as well. When my stomach flares up, I definitely get more symptoms of rapid heart rate and feeling like I’m going to pass out. I’m not sure if the the gut issues cause the autonomic problem though or the other way around. I also saw a gastroenterologist and did an upper endoscopy... it didn’t find anything significant.

And Teresa, I am also super sensitive to medication! If the medication lists a side effect, there is a pretty good chance I’m going to get it! But occasionally I do tolerate a medication, so it’s always worth trying...

June 19, 2020
A MyFibroTeam Member

Yes for hypersensitive to meds. Most of us on here report that. We end up with a lot more allergies and dermatologic issues over time (rashes, etc) too. Lots of neck and shoulder/upper body pain. Insomnia. Like a grocery list. Only not.
😉😁

June 19, 2020

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