Izzy_marie220 Posted August 17, 2018 Report Share Posted August 17, 2018 Sometimes I have to take off work becusse my POTS symptoms are so bad, and my fatigue is so bad I physically and mentally cannot function. Usually a full day of sleeping on and off helps a little bit. Is this really bad for you? Does anybody else do this? Its awful because I have to take off work but if I don’t its like my symptoms worsen and are prolonged. Quote Link to comment Share on other sites More sharing options...
kafie Posted August 17, 2018 Report Share Posted August 17, 2018 I do have days like that. Because of my 1yo son I have to power through it for the most part and take as much time resting as he'll let me have. I don't think it's really bad for you, per se. If it happens a lot it could lead to deconditioning, which can exacerbate POTS symptoms. At which point you may want to take up some light exercise (pilates can be done from a bed) to try to avoid too much deconditioning happening (but I'd talk to your doctor first about it). Exhaustion will also definitely worsen symptoms, so if you're sleepy or feel like you're going to fall over, try to get some rest (even if it's just sitting down for a moment). Listen to your body! Quote Link to comment Share on other sites More sharing options...
jklass44 Posted August 17, 2018 Report Share Posted August 17, 2018 Yes I feel this way a lot. Fatigue and weakness are some of my worst symptoms. If I do take the day off work, I alternate between napping, sitting and light walks around the house. It's a vicious cycle and can be quite difficult to find a good balance that works well for your body. If I sleep too much it makes my symptoms worse, but if I don't sleep enough it also makes my symptoms worse... Quote Link to comment Share on other sites More sharing options...
Peter Charlton Posted August 17, 2018 Report Share Posted August 17, 2018 Now the weather has cooled down a bit, I am so exhausted all the time that I let myself sleep all day, maybe once a week. I get my eight hours, wake up for a bit, then fall back to sleep for the rest of the day, and still go to sleep again that night. It does make me feel better except that I have a back condition that does not respond well to lying down for long. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted August 18, 2018 Report Share Posted August 18, 2018 Yes. In fact I left work early on Wednesday and took the whole day off Thursday because of it. It is like I am exhausted and foggy all day. Until 9 at night then I am wide awake until 1 or 2 in the morning. It is frustrating to say the least. The good news is my kids are on vacation and my boss is really understanding. I know the reason my body is rebelling right now is because of all the work I am doing. We are in the process of moving our office and the company I work for is small. So I have to physically help out where I can. I am trying to not overdo it but it happens. I used to nap during the day but I have quit doing that about a year ago. I found it messes worse with my sleeping pattern. I have found if I stick to a schedule and sleep 12 hours I do OK. But it is so easy for my schedule to be messed up. It is a constant battle. Hope you feel better soon. By the way (assuming you are female) check your worsening of your symptoms by your cycle. You may be surprised how it lines up and you may be able to predict times it may be worse. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 18, 2018 Report Share Posted August 18, 2018 Yes - I used to have periods when I could not peel myself out of bed and had to literally drag myself to do anything. My doc put me on Ritalin and guanfacine for that and brainfog and I immediately improved. I now feel much more alert and sleep well uring the nicht and feel refreshed in the day ( mostly ). I agree with @StayAtHomeMom - napping during the day messes with your ability to get good sleep at night. I only nap for a short period after lunch if I feel fatigued. I used to sleep a lot during the day but that was not helpful to sleep at night. They say that developing a healthy sleep hygiene will improve you POTS and in my case it did. Having said that - there are times when yor POTS is bad and you NEED the extra sleep and rest. But if that happens you should gradually start to get up for longer periods every day and start to exercise in bed several times during the day. This will not only fight the fatigue but also strengthen your ability do be upright. Being in bed all day is one of the worst things we can do. --- Stay positive, stay active and feel better soon!!! Quote Link to comment Share on other sites More sharing options...
yogini Posted August 19, 2018 Report Share Posted August 19, 2018 A day of sleep can be helpful in a flare up. When I was very sick I used to sleep all day on the weekends so I could function during the week Quote Link to comment Share on other sites More sharing options...
WinterSown Posted August 19, 2018 Report Share Posted August 19, 2018 When I was first diagnosed I was sleeping a lot. It increased even more when I started PT--I was exhausted when I got home and would sleep through the rest of the day and most of the following day. Fifteen months later I have far less exhaustion. I still lay down six, seven times a day but it's just laying down until I feel stable and ready to get up a few minutes later. I did have a big increase in energy when, on my cardiologists orders, I stopped taking supplements and started to get all my nutrients from the foods I eat and drink. Eating a balanced diet was a huge and immediate difference--not weeks later but a couple of days later I started to feel much, much more alert and I was more active, less fog and more energy. Quote Link to comment Share on other sites More sharing options...
Apple86 Posted August 20, 2018 Report Share Posted August 20, 2018 I’m new to PoTS but have found the fatigue really crippling. Today has been a sleeping day: I’ve only been awake for about 6 hours all day! I’m a student so it’s OK for me to do this from time to time. But I’ve also been worried that the fatigue is something other than PoTS. I’ve been quite anxious that I’ve got something life threatening which hasn’t been detected as sometimes my whole body and mind hurt from the tiredness. I think, however, this may be my anxiety talking! Quote Link to comment Share on other sites More sharing options...
Jolina Posted August 20, 2018 Report Share Posted August 20, 2018 Yes, and I am on Modafinil for this Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted August 21, 2018 Report Share Posted August 21, 2018 7 hours ago, Apple86 said: I’m new to PoTS but have found the fatigue really crippling. Today has been a sleeping day: I’ve only been awake for about 6 hours all day! I’m a student so it’s OK for me to do this from time to time. But I’ve also been worried that the fatigue is something other than PoTS. I’ve been quite anxious that I’ve got something life threatening which hasn’t been detected as sometimes my whole body and mind hurt from the tiredness. I think, however, this may be my anxiety talking! I think that anxiety is the worst part of having POTS. I don't have my underlying cause yet so it bothers me. I am the type of person that wonders why. But there are tests to rule out the really bad stuff. Once those tests are run it is pretty much learning the tips and tricks to feeling better and adjusting to your new life Quote Link to comment Share on other sites More sharing options...
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