Yhoun

My symptoms get worse when I re-start exercise, especially if I push too hard/too quickly. After a few months of inactivity, I started using a rowing machine in late January/early February, and I felt intermittently worse until about April. I was following the CHOP protocol and had to increase my activity more slowly than the even the guidelines said. So if it’s only been a little while since you’ve been increasing your exercise, you might give yourself more time to adjust. (I’ve heard people report that anywhere between 6 weeks and 4 months was the turning point for them.) I also do better when drinking electrolytes while exercising, rather than (or in addition to) plain water.

I’m also currently flaring and frustrated. I felt pretty good last week, I was on vacation from work and was able to do things I hadn’t done in a very long time, mostly because of the pandemic (like going to the movies). And then suddenly a couple of days ago, I couldn’t stand without feeling faint. I felt a little better yesterday, and then worse again in the evening, and not so good today. I had COVID in December, had a similar flare to this one in January (had to work remotely for a couple of weeks), and my worst fear is that the virus has made my POTS worse and that this will continue. So overall I’m pretty bummed today.

Depends on what part of the program you’re in. For the first few months, you’re rowing or recumbent cycling or swimming.

It’s not the most clearly written, that’s for sure. You do need access to equipment, whether at the gym or at home. I had trouble keeping up with it when the pandemic hit and the gyms closed. Page 12 has the chart that explains “base pace,” “recovery,” etc. I am on a beta blockers, so I used “perceived exertion, not the heart rate chart. A health professional is supposed to calculate the best heart rates for you, if you’re not on a beta blocker. It doesn’t give much guidance for strength training, only the sample exercises. But I think it doesn’t matter what strength training you do, as long as you focus on core and legs. I just decided to do whatever I could in 15-20 minutes, sometimes I did the suggested exercises, sometimes I used gym machines. There’s a Facebook Group (POTS Exercise Protocol) with other people who are, or have been, working on it, if you’re on Facebook and want more explanation/conversation/support.

I had fatigue for a day after the first shot, a night of bad chills after the second shot, and then fatigue and all-over yucky-feeling after the third shot (lasted about a week). It stunk. But I got COVID (almost certainly omicron) about two weeks after I got the booster, and I was glad that at least I knew that I was as protected as I could be. COVID for me came with A LOT of adrenaline surges, though the vaccines didn’t.

Link to CHOP protocol

I have a few things you could consider. If you are just starting up with exercise, or if you are starting with upright exercise (i.e., walking), you may be pushing your body a little hard. Have you looked at the CHOP protocol? It’s designed for people with POTS, to build exercise capacity, first in reclining positions and then moving to more upright exercises. When I tried it pre-pandemic (it was hard for me to maintain without access to a gym), I found that I felt worse overall for several weeks (maybe 6-8 weeks?), then started to feel better overall. So also if you are just getting started, it can takes the body a while to adjust to any kind of exercise. Another thing to consider is that you might have post-exertional malaise, which would be something to ask a doctor about, as that would change the exercise recommendations for you.

I hope you feel better quickly!

I got COVID over Christmas. I had a lot of congestion (took Sudafed when it got bad, though that might mess with your HR, check with your doctor). I was away from home so I didn’t have anything to monitor my numbers, but I was having a lot of adrenaline surges, so my numbers were probably all over the place. I tested negative after 8-10 days, but still have lingering congestion. I also have been having worse POTS symptoms— palpitations, fatigue, tingling in the extremities, GI upset, trouble standing. I’m a college teacher and am supposed to start back in person this coming week, but my doctor and I agreed that I should teach online (from home) for now. I’m hoping that it is just taking a while to recover fully, and that I return to baseline soon. Also hopeful that I don’t develop long COVID over the next few months, which would suck.

I started experiencing this within the last few months — has anyone else had this, figured out what this might be?

I am so glad that you got answers, bombsh3ll. Hoping for effective treatment and swift healing!

I agree strongly with JaneEyre9 — your decision shouldn’t be made on POTS alone, but based on an assessment of your whole situation. I was diagnosed with POTS in 2015 and had a baby in 2018. My POTS is mild compared to some (i.e., have never fainted, I was able to keep working (I also have a very flexible job)). I was also afraid that pregnancy would make me worse, and that I would stay worse. Pregnancy did make me feel terrible — some of that was POTS, some of that was pregnancy, some of that was being pregnant in a city during the summer. And a couple of months after giving birth, I did flare. In fact, I posted on this forum several months ago, because I was not feeling well, and didn’t feel like I was being the best mother to my baby. That time sucked. As my baby got a little older and there was a little more time to spend on myself (6 months is way different from 3 months), I started to do more things to manage my condition. I found a new cardiologist and started a different beta blocker, and I started the CHOP exercise protocol. Several months after making those changes, I am actually feeling better than I did before I got pregnant, on most days. My next steps are to keep increasing my exercise intensity, and to address my diet, hoping for further improvement. I don’t know where you are in your journey, but if you haven’t yet tried everything, remember that you might yet feel better. (I hadn’t previously been able to keep up exercise, which is turning out to be really important, and I’m starting to understand that I basically need to organize my whole life around it.) I agree with the posters who emphasized the importance of a support system. ALL new parents need/deserve a lot of help. You will want a partner who is totally in it with you, and doctors you trust, as many friends/family as you can get to come around. Or if you don’t have one of those things, you’ll want money enough for take-out for months (!). Hope this helps. Happy to share more/answer any questions.

Thanks for the replies, everyone. I’ve been progressively exercising more with the CHOP protocol, and I also stopped breastfeeding very recently, so I wonder whether is was my body responding weirdly to one/both of those changes. It’s a relief to have some company in these symptoms, at least. I’ll keep an eye on it and hope it goes away...

Thank you for posting. I've been working my way through the CHOP protocol, and I'm interested to compare them.

Does anyone recognize this sensation?: Within the past month, I've started to feel random buzzing sensations in different parts of my body, most often in my feet and legs, but sometimes in other places, too,. It doesn't feel exactly like the tingling I sometimes get in my feet and legs. It's more like someone is taking a tiny electric buzzer and holding it against my skin. It's very strange. I mentioned this to my PCP, but she had never heard of anything like it. (I haven't yet asked my cardiologist, who manages my POTS, as I wasn't sure it was POTS related.) When I try to google it, I get MS forums, but I've had two clear 2 MRIs over 6 years, so I thought that made MS pretty unlikely. I had a skin biopsy a couple of years ago that was normal, which I thought ruled out SFN. Any ideas? It's not debilitating, but it's annoying and sometimes a bit worrying, since I don't know what's causing it.

Congratulations! I hope that you keep improving and collecting more achievements.

Thank you for your replies! I am relieved to know this happens to others, too, and you don’t worry about it. I’ll try to “rest easy” as Delta says!

I feel a little silly asking, but I’ve started to have more frequent episodes of waking up in the middle of the night (or in the middle of a nap) to find that my arm is numb and I can’t move my hand. Usually the left side. It feels like a trapped nerve, as within a minute or two, I get the feeling back in my hand/arm. But it’s pretty scary while it’s happening. Does anybody else get this? Is this connected to POTS at all? Is this just me sleeping on it funny, or something else?

It sounds like I need to accept that I need to go as slow as I need to go. I won't give up! Thank you for the encouragement.

@Pistol Gosh, it feels like I’m going so slow already! But you are probably right — I will decrease the exercise intensity. @yogini I will keep trying the protocol for now, but if I can’t handle it, I’ll find something less intense. It’s good to know that you found improvement (even recovery!) with non-cardio exercise.

I just started the modified CHOP protocol — I’m on week 3. I feel terrible. I don’t have a lot more fatigue, which I expected — but I feel more dizziness, there’s a nearly-constant feeling of air in my ears, and I’ve been having GI issues worse than I’ve felt in years. I also feel a lot of agitation in my body, like I have to keep fidgeting. Last week, I took two days off of work. Yesterday, I tried to go to see a play and had to leave after 15 minutes because my body would not calm down. This morning, I had to bail out of brunch plans with visiting family. I’m so discouraged. For those of you who have tried this protocol or started an exercise program, is this normal? Will I feel better?

Thank you for all your work in making this a valuable resource!

Thank you for the good thoughts, potsiebarbie, I will try and remember to update as soon as I have updates re: the specialist appointment. Since I’ve been pregnant, I’ve been doing fluids, mostly, and trying to stay as active as possible. Funnily, I’ve never been recommended to salt-load or drink electrolytes, but I will ask about that. I have tried compression socks, but I can’t feel much difference — I don’t know if that means I don’t have much blood pooling? I would like to try an exercise protocol that I’ve heard about (Levine or Dallas, I believe), and I’d like to try modifying my diet, but I want to consult with the doctor first, and make changes in a systematic way. Like you, I really miss feeling “carefree”. I hope you can get that rowing machine, and that it helps!

Thank you for the kind words! I did wear a 30-day monitor a couple of years ago, that's when I first got diagnosed. The cardiologist saw those results and did a "poor man's tilt table" in the office. i had to move shortly after that and never got a title table test, but I have an appointment with a new cardiologist, and I'll ask her for the TTT and to help me investigate whether anything else might be going on.

Thank you for replying. I am sorry that your pregnancy and delivery were both so hard, and now POTS, too. How are you doing day-to-day? I am moderately functional, but definitely feed impaired. I am trying to keep hope alive, and keep trying things to help myself feel better. in fact, I just made an appointment with a new doctor, so hopefully she will have some advice/ideas.