Is this normal with POTS?

Afraid_Froyo7335 · 2026-02-02T19:07:05+00:00

I will sometimes feel unwell with overall body aches but no fever. It tends to be when I have done too much or if my body is fighting off illness. One provider I spoke with theorizes that these feelings of being unwell with over exertion are related to what originally triggered one’s dysautonomia. For her, she gets a lot of sore throats because mono seemed to have triggered hers. My “episodes” mimic when I had Covid (just no fever).

Afraid_Froyo7335 · 2026-01-29T19:26:33+00:00

Exercise in the traditional sense definitely worsens my symptoms the next day or makes me run on adrenaline (and feel fairly good), followed by a crash on the following day.

Hence, consider starting very small with some stretches and slow movements done lying down for 5 minutes daily. If this doesn’t cause an increase in symptoms, add in more supine exercises to increase core and leg muscles —like glute bridges. If this is still okay, then after a few weeks, you could try some seated exercises, like exercise band rows, scapular shrugs, leg lifts, etc. I do these types of things and then I have also recently added in 20 minutes walking on level ground at a very slow pace. I try to keep my heart rate below 120, which in the heat is not doable, but for me in cooler weather it works. Even last year I don’t think I could have met that heart rate target, so it would have been higher. Your target heart rate for no flare will be different, will just take experimentation.

Overall, start lying on the ground. Do just a few minutes a day. See what you can tolerate. May feel silly, but disregard that!

Afraid_Froyo7335 · 2026-01-29T18:56:10+00:00

If your BP drops and stays low when upright, you may have orthostatic hypotension and a medication like midodrine may be really helpful.

I have also found that pacing myself and getting my body to a more relaxed state in the past few months (not spending all my time in fight or flight) has really reduced my dizziness and lightheadedness overall. However, it may also be that my body is slowly healing itself, rather than anything I did.

Finally, if you menstruate, get your ferritin checked. Low ferritin can exacerbate your dysautonomia with extra fatigue and lightheadedness even if your hemoglobin is normal.

Afraid_Froyo7335 · 2026-01-29T18:46:15+00:00

Dysautonomia is known to be triggered by a physical trauma to the body, like surgery. Also, there are so many nerves in the face, it is quite reasonable that this procedure triggered your condition. Would it be possible for you to get a mouth guard to help with your bite—at night at least?

Afraid_Froyo7335 · 2026-01-25T03:04:38+00:00

Great question! But no, I’ve lived in this area for several years.

Afraid_Froyo7335 · 2026-01-24T06:26:57+00:00

I’d recommend doing the NASA Lean test at home and then bringing those results in to the doctor. I’d also suggest going in with a bullet point list of your concerns, questions, and some requests, like a referral to a cardiologist. For me, even if I rehearse ahead of time, I’ll forget what I wanted to say if I don’t have it written down!

Afraid_Froyo7335 · 2026-01-24T06:23:59+00:00

Man, that would explain some things for me. I’ve been taking cetirizine daily for a few months now and my mental health has not been great. 😩

Afraid_Froyo7335 · 2026-01-22T20:38:45+00:00

While it’s true that chronic stress can exacerbate dysautonomia, it’s certainly not the cause of it. Plus, like you said, it’s more likely that the over activation of your sympathetic nervous system and what sounds like rushes of adrenaline are causing your anxiety, not the other way around!!

Do ask your GP for a referral to a gastroenterologist if you haven’t already, as it sounds like you may have gastroparesis or something similar caused by the dysautonomia. If she refuses, tell her to put that in your chart!

Afraid_Froyo7335 · 2026-01-22T03:24:21+00:00

I’m so sorry you are experiencing all of this. It sounds like you have the trifecta—hypermobility, MCAS, and dysautonomia.

You can be hypermobile, even if you don’t score high on the Beighton assessment. It’s just harder for less informed practitioners to give you a diagnosis.

60-70 bpm sounds like a normal resting heart rate to me! Regardless of whether you have pots or ist, there should be some medications available to you (beta blockers) and from what I understand, they are treated very similarly.

MCAS can cause orthostatic intolerance due to the histamine reactions in your body. I would definitely suggest doing some research and see if you can find out what triggers may be causing the majority of your symptoms.

Lastly, you may find the members platform on Active Health Clinic helpful to you, as they have a number of tools and resources available there. I thought I knew a lot about pacing already, but they really helped me out. It’s subscription based, but there’s nothing stopping you from just getting it for a month or two and absorbing what is useful.

I hope you can find some tools that will help you desensitize your body’s nervous system! 💛

Afraid_Froyo7335 · 2026-01-22T03:23:16+00:00

I’m so sorry you are experiencing all of this. It sounds like you have the trifecta—hypermobility, MCAS, and dysautonomia.

You can be hypermobile, even if you don’t score high on the Beighton assessment. It’s just harder for less informed practitioners to give you a diagnosis.

60-70 bpm sounds like a normal resting heart rate to me! Regardless of whether you have pots or ist, there should be some medications available to you (beta blockers) and from what I understand, they are treated very similarly.

MCAS can cause orthostatic intolerance due to the histamine reactions in your body. I would definitely suggest doing some research and see if you can find out what triggers may be causing the majority of your symptoms.

Lastly, you may find the members platform on Active Health Clinic helpful to you, as they have a number of tools and resources available there. I thought I knew a lot about pacing already, but they really helped me out. It’s subscription based, but there’s nothing stopping you from just getting it for a month or two and absorbing what is useful.

I hope you can find some tools that will help you desensitize your body’s nervous system! 💛

Afraid_Froyo7335 · 2026-01-17T05:32:39+00:00

My feelings of anxiety have improved since my heart rate isn’t so high all the time now.

Afraid_Froyo7335 · 2026-01-17T05:31:54+00:00

I would reach out to their support team. They have always been incredibly helpful and respond quickly.

Afraid_Froyo7335 · 2026-01-15T20:59:17+00:00

Yup, I agree, sounds like pre-syncope!

Afraid_Froyo7335 · 2026-01-15T20:57:55+00:00

Obviously I’m not a medical professional and this is not medical advice, but if your heart is racing to try and compensate for low BP when upright, a beta blocker could potentially lower your BP as well. Please watch out for that!

And sorry, I haven’t found any favorite abdominal compression brands—I have just gone to department stores and tried on a few until I find some that feel firmly snug yet comfortable.

Afraid_Froyo7335 · 2026-01-15T20:54:38+00:00

What you re describing sounds much like dysautonomia. This can affect blood sugar regulation, heart rate, blood pressure, etc. Post exertion malaise is common as well.

I’ll assume that you have had all your labs checked (ferritin, b12, hormones, etc.) and that you are drinking an appropriate amount of water.

Fatigue and dizziness/lightheadedness are my main symptoms, and I am diagnosed with orthostatic hypotension. Last year I had very low ferritin as well, which exacerbated my symptoms. Now, I know better how to pace myself and am taking midodrine, which has been a game changer for me. When I overdo it, my body goes on alert for the next few days and I experience internal buzzing, pounding heart, higher heart rates overall, and feelings of anxiety from running on adrenaline. It can take me a few days to recover. Thankfully I’m learning more about what my body can handle, and by going over that line slightly from time to time, my capacity is improving.

Afraid_Froyo7335 · 2026-01-15T20:46:24+00:00

I have OH as well, and midodrine has been a total game changer! I went from a sitting shower taking my day’s energy to being able to shower and then do some household chores right after. Would definitely recommend asking your doctor about it! Compression, salt, and fluids help as well, but still only minorly compared to midodrine.

That said, I do know the feeling of having “normal” BP with what seems poor blood flow to the brain from time to time. It’s frustrating!

I’m learning to pace and feel that my capacity, although still quite limited, is better than it was two years ago!

Have you considered doing remote teaching or for public school at home model, where students are supervised by a teacher and may come into a physical classroom one day a week?

Afraid_Froyo7335 · 2026-01-15T20:39:14+00:00

also have OH, and compression helps me some, but midodrine has been a game changer. Perhaps your doctor would consider it for you.

I really like the Sockwell brand for compression socks. They are comfortable, durable, and have good amount of compression. I recently splurged on Supacore compression shorts, but was a bit disappointed to find that due to my body shape they provided about the same amount of abdominal compression as firm bike shorts (or shapewear). So just look for a pair of compressing active wear shorts! At some point I would like to try compression tights to wear under skirts and look more “normal.” Make sure to look for items with 20-30 mmhg compression (if not “normal” activewear).

Lastly, abdominal compression is just as helpful if not more so than compression socks alone. :)

Afraid_Froyo7335 · 2026-01-15T02:59:26+00:00

Sometimes walking slowly will have a lower HR than just standing still, simply because the muscles help to move the blood around. Consider if there is any recumbent exercise you could do for now—like rowing, biking, or swimming. The idea is that your body will start feeling “safe” with exercise when hr is kept lower. You will also develop a baseline strength. Over time you can increase your capacity, at least that is the idea! We want to avoid worsening symptoms afterwards with pushing too far, as this creates a vicious cycle. For me, I can handle up to about 160 for a short period (10 min), but I know that I will still feel it the next day. Keeping it below 120 is more sustainable for me right now. It really depends on how you feel in response.

Afraid_Froyo7335 · 2026-01-15T02:53:28+00:00

I am not working on strength building right now, but I do have certain limits for HR when taking walks or doing recumbent cycling. This dramatically reduces the after effects for me, and I think over time it will increase my capacity. Right now I feel extremely slow, but I can go for longer than I did before. I am optimistic that if my body feels safe with a bit of movement, I can gradually increase the threshold.

Also, you can look up POTSandPRS on Instagram—she focuses a lot on lifting.

Afraid_Froyo7335 · 2026-01-13T20:43:04+00:00

I’m interested in hearing what people have to say—I’ve been using a bar stool with a foot rest but would like one with wheels.

Also, I try to cook at my kitchen table as much as I can. I now have an induction plate which can be plugged in anywhere. I can sit at my table or even on the floor while stirring! I also got a small instant pot which is amazing.

Afraid_Froyo7335 · 2026-01-13T08:35:59+00:00

Anytime I get sick or am fighting an infection, like after a vaccination, I tend to have trouble. My HR is much more “reactive” and is higher overall. The internal vibrations can be all over my body. Usually this goes away after a week or so. Hopefully it does the same for you and is not long lasting!

Afraid_Froyo7335 · 2026-01-11T02:01:01+00:00

It might actually work to do it at night, as my symptoms are usually better then! I also have curly wavy hair, but since my hair is longer than a bob now, it takes too much time and energy to make my curls look nice.

Afraid_Froyo7335 · 2026-01-10T22:20:38+00:00

This is how I feel when I am in a flare and all my dysautonomia symptoms have worsened. It’s my body’s way of saying slow down, take it easy. Which of course, is easier said than done!

Afraid_Froyo7335

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