Nin Posted March 26, 2021 Report Share Posted March 26, 2021 The worst part of all this for me is the fatigue. Im so tired of feeling so exhausted just from showering. I have learnt to pace myself. Its just draining and depressing me that I have to live like this at the age of 38. Is it 2 separate things pots and chronic fatigue syndrome or is the chronic fatigue just part of pots? Its been a particularly hard week for some reason. I always get tired easily but its been unbearable the past week. Hope it passes. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 27, 2021 Report Share Posted March 27, 2021 @Nin - I hear you! Yes, the fatigue from POTS can be debilitating. I too mind it more than some of the other symptoms. But I have found that when my POTS is under control the fatigue improves as well, and when I am in a flare it is really bad. Some days it feels like I actually have to force myself to take every single step! 1 hour ago, Nin said: Is it 2 separate things pots and chronic fatigue syndrome or is the chronic fatigue just part of pots? Some Doctor once said that not every CFS patient has POTS but every POTS patient has CFS. Yes, it is a part of POTS. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted March 27, 2021 Report Share Posted March 27, 2021 I can sympathise too - for years I was diagnosed with CFS/ME. No GP or other consultants I ever saw had heard of POTS but when I read an article one day I realised that I had almost every single symptom and the palpitations that I was repeatedly told were anxiety probably had another explanation. I remember asking the cardiologist who confirmed my POTS diagnosis whether I still had CFS or whether the fatigue was just a part of POTS and he said that when we had the POTS symptoms under control we would see... Unfortunately I have never managed to get the POTS symptoms under control but like @Pistol I find my fatigue is much worse in a flare so I definitely think a large part of the fatigue comes from the tachycardia. And of course in a flare you tend to sleep badly which doesn't help! Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 27, 2021 Report Share Posted March 27, 2021 Dysautonomia itself can cause horrible fatigue. I have fatigue and really bad post exertional malaise. One thing to note, if you shower with hot water it does mess up the autonomic nervous system and for many people makes them sick/fatigued; I've heard some patients take cooler showers and sitting on a shower chair. Dr. Thompson in Pensacola used to go around wearing an ice vest to keep himself cool, something about the heat is not good but we both live in Florida so... Quote Link to comment Share on other sites More sharing options...
Nin Posted March 28, 2021 Author Report Share Posted March 28, 2021 It must be a flare as I do feel much worse. I had the covid vaccine a week ago, I hope its not anything to do with that. I haven't had any other medication other than bisoporol and sodium tablets. I think they need to try me on more to see if I can control my pots. Then see if that helps my fatigue. Funny CallieAndToby22 said about hot water as I had to stop having a bath because of the heat. I do turn the shower on hot, so think its time to turn down the heat. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 28, 2021 Report Share Posted March 28, 2021 2 hours ago, Nin said: It must be a flare as I do feel much worse. I had the covid vaccine a week ago, I hope its not anything to do with that. I haven't had any other medication other than bisoporol and sodium tablets. I think they need to try me on more to see if I can control my pots. Then see if that helps my fatigue. Funny CallieAndToby22 said about hot water as I had to stop having a bath because of the heat. I do turn the shower on hot, so think its time to turn down the heat. Yea it's really hard to do but a lot of my friends have to take cool showers. Ugh.. One of my friends got into a hot spring one time and his heart was racing and he got really sick. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 28, 2021 Report Share Posted March 28, 2021 I find taking cool/cold showers has grown on me. Of course the initial couple of minutes are....breathtaking! But it gets easier. And I definitely feel better when I am not inducing tachycardia with the hot water. I'd also add @Nin that I had the covid vaccine a week ago as well and have been MUCH worse. Even after the 'immune-activation' symptoms (sore throat, spikey pains in lungs and head, heavy achey exhaustion) have lifted, I am finding that the POTS symptoms are MUCH worse still. I am normally pretty functional in terms of activities of daily living if I am careful. These last few days I wonder: did I make a huge mistake? Is this vaccine going to leave me bed-bound? Let's keep sharing on this one..... I know that some people are taking up to a month to clear the impacts of the vaccine, so maybe that will be the case for you and me too? Quote Link to comment Share on other sites More sharing options...
Nin Posted March 28, 2021 Author Report Share Posted March 28, 2021 Jyoti I'm thinking the same thing should I have had it done. Im worried I'm not gonna come out of this. I just feel good for nothing. I get sore throats often, but since the vaccine its been everyday since. Hopefully its just a coincidence. I got an appointment in the morning with a immunologist...not looking forward to that. Did u have the Oxford one? I did Quote Link to comment Share on other sites More sharing options...
Nin Posted March 28, 2021 Author Report Share Posted March 28, 2021 13 hours ago, CallieAndToby22 said: Yea it's really hard to do but a lot of my friends have to take cool showers. Ugh.. One of my friends got into a hot spring one time and his heart was racing and he got really sick. Omg if I went in a hot spring I'd be on the floor! Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 28, 2021 Report Share Posted March 28, 2021 2 hours ago, Nin said: Omg if I went in a hot spring I'd be on the floor! I just got back from taking my 17 year old for her vaccine. She has really severe asthma, so we have all been worried about Covid in her case. She had to get her shot at a healthcare provider instead of a mass vaccination event because of her age. For the same reason I had to be there--to give consent. I was too sick to drive so we had to have someone else to drive us. If it had been anything else, I would have cancelled. The place was empty but the wait was endless. We sat/paced for an hour and eventually I just had to lie down. On the floor. My heart rate was through the roof. No other choice. It was sort of funny to see the nurse's aide come into the exam room to give my daughter a shot and find me lying on the floor. "No, no, I am fine....just a touch of orthostatic hypotension, sweetie...." Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 28, 2021 Report Share Posted March 28, 2021 On 3/28/2021 at 12:42 PM, Nin said: I got an appointment in the morning with a immunologist...not looking forward to that. Did u have the Oxford one? I did Let us know how it goes and what you learn. When did you get the jab? I got Pfizer on 3/19. It is scary to consider that this might have been a bad choice. But...was there a good one? Here are some initial results summarized from Health Rising: https://www.healthrising.org/blog/2021/03/17/coronavirus-vaccine-poll-chronic-fatigue-fibromyalgia-severely-ill/ Quote Link to comment Share on other sites More sharing options...
Nin Posted March 28, 2021 Author Report Share Posted March 28, 2021 1 hour ago, Jyoti said: I just got back from taking my 17 year old for her vaccine. She has really severe asthma, so we have all been worried about Covid in her case. She had to get her shot at a healthcare provider instead of a mass vaccination event because of her age. For the same reason I had to be there--to give consent. I was too sick to drive so we had to have someone else to drive us. If it had been anything else, I would have cancelled. The place was empty but the wait was endless. We sat/paced for an hour and eventually I just had to lie down. On the floor. My heart rate was through the roof. No other choice. It was sort of funny to see the nurse's aide come into the exam room to give my daughter a shot and find me lying on the floor. "No, no, I am fine....just a touch of orthostatic hypotension, sweetie...." Oh yeah I totally get it when out in public then you got to get on the floor! That was me the other day in the supermarket & trying to phone my dad to come and save me. I tell you what the lights in these places don't help. I also have seizures (still don't know why exactly) so can't drive anymore, really miss my freedom. Are you in the UK or US? I got mine done on 03/18. I suppose we were dammed if we don't and dammed if we do to get the vaccine Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 28, 2021 Report Share Posted March 28, 2021 7 hours ago, Nin said: Omg if I went in a hot spring I'd be on the floor! Lol, yea I didn't do it!!!! Quote Link to comment Share on other sites More sharing options...
SMT883 Posted July 13, 2021 Report Share Posted July 13, 2021 Hello, I was reading the comments on this forum & I wanted to know how people were doing now? It looks like it’s been a few months since these comments were posted. I had my 1st P v over 2 weeks ago...flare up of CFS & dysautonomia. I’m due for the 2nd in a few days...dreading it! Thanks so much. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted July 13, 2021 Report Share Posted July 13, 2021 5 hours ago, SMT883 said: I wanted to know how people were doing now? I am totally fine (in terms of the jab and its side effects) and have been for a couple of months now. Really glad I had it/them, and also glad the post-vax misery is over too. On 3/28/2021 at 4:52 PM, Nin said: I suppose we were dammed if we don't and dammed if we do to get the vaccine Yup. Agreed. It is a tricky path to tread. How are you doing @Nin? Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted July 14, 2021 Report Share Posted July 14, 2021 I have horrific chronic fatigue and if I do any small activity whether mental or physical I crash and feel like I'm dying. I've had fatigue since I was a teenager and I'm confident that autonomic dysfunction in itself causes horrible fatigue. I saw a 96 year old woman dancing on tv and I looked at my mom and said, "she has more energy than me". So I understand what you're saying, it's very sad. Quote Link to comment Share on other sites More sharing options...
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