Derek1987 Posted April 2, 2019 Report Share Posted April 2, 2019 Whenever i do a small tasks such as go to the doctor im overwhelmingly fatigued. Today I dropped my kid off to school. Dropped my 24 hour urine test off. I went and got gas. Picked up my kid from school and then went to the store. That's way more than I usually do. My wife is sick so I'm picking up some slack. I battled through the fight or flight feelings all day. As usual. The adrenaline surges and shaking etc. When I got home and sat down, this overwhelming fatigue hit me after about 5 minutes of sitting down. It's actually scaring me. It's not like I'm sleepy. It's like my body wants to give out. Is this something to be concerned about or just another part of this disease? Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted April 2, 2019 Report Share Posted April 2, 2019 I do that. I take it to mean that I have reached my limit and I sit on the couch with my feet up or relax in bed with my feet up. Often the next day is worse and my feet, ankles, legs are swollen. I usually don't sleep well despite being so exhausted I don't have the energy to lift my arms. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted April 2, 2019 Report Share Posted April 2, 2019 @Derek1987 I know exactly how you feel - body wanting to give out and all!! It's such an awful symptom and I have been debilitated by it many times. From what I've read and heard, fatigue is one of the top complaints from POTS patients... My cardiologist who diagnosed me said a lot of her other POTS patients also have chronic fatigue syndrome ON TOP of this. Do you have a friend or family member that could help you and your wife out during these times? My advice - don't do too much in one day! (Easier said than done, I know...) Best wishes. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted April 3, 2019 Report Share Posted April 3, 2019 I do that as well. I do OK during the day. Get things done slow and steady. Then I get home and sit down. Within 10 minutes I have nothing in my tank and supper doesn't get done. It has something to do with sitting down after doing all day. Usually if I plan on making dinner (my hubby and kids help out by cooking most days) I have to do it before I sit down. If I do I am OK. Fatigue has been my worst symptom these last few weeks. I thought it was because of my keto diet taking its toll. But I had a mountain dew today (first one in 6 months) and it still wasn't enough. When I got home from work and sat down, I was done. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 3, 2019 Report Share Posted April 3, 2019 Yes I have been severely fatigued to the point of being bed/couch bound for hours or days or weeks. It can be a symptom of POTS. I do think it can be triggered by overdoing physical activity when in a bad POTS flare. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 3, 2019 Report Share Posted April 3, 2019 @Derek1987 - although I am relatively good controlled on my meds I still am mostly housebound due to the fatigue you are describing. I would be flat in bed for a week if I did all that you packed into one day!!! Whenever I HAVE to go anywhere like doctor appointments I rest the day before and at least 2 days later. A week ago I went to the doc and was useless for the whole rest of the week. --- Many activities that are optional - like school activities, sports events or even church - have to take the back seat. If I go to church on Sundys I cannot cook or do anything else that day. ---- I agree - is there anyone who could help out with some of the errands? Do you live in a town where you could do online shopping? Some major grocery stores will take online orders and all you have to do is pick it up and pay - that is really a valuable invention!!! In my case my husband does all the shopping. If I need to go anywhere I go in my wheel chair, which helps tremendously. ---- https://www.sciencedirect.com/science/article/pii/S1566070217303284 This is an article about how to save up your energies , it is very interesting Quote Link to comment Share on other sites More sharing options...
Spiders from Mars Posted April 4, 2019 Report Share Posted April 4, 2019 I agree with the sitting after being active thought. The other day after going to doc, picking up prescription and trying to do a couple dishes, I sat down but kept my feet on the floor, my back straight and not supported (I always sit on my feet and sink into the couch), which kept my blood pressure up and I didn’t crash like I usually do. It might have just been a good day, but I’ll keep experimenting. Normally, if If I feel well enough to be active, I will crash as soon as I sit/lie down. I’m assuming because my heart rate and blood pressure drop when sitting just as fast as they spike when standing. If I’m active even part of the day my body will be jello the next day and I’ll have bad leg pain like I ran 10 miles. It’s hard not to feel guilty or lazy when you are so drained you only have enough energy to stare at a wall. P.s. Also just did a 24hr urine test for tremors, but the lab messed it up by not putting preservative in the container. Have to do it again now! Quote Link to comment Share on other sites More sharing options...
p8d Posted April 4, 2019 Report Share Posted April 4, 2019 I have severe fatigue most of the time and it’s got me house bound for 4.5 years now. Going to Dr or PT appointments is all I do and very difficult. I have to take anywhere from 1-4 days to recover. I do light workouts after one complete rest day and try to rest the day before. This has almost always been my most debilitating symptom. I take modafinil on bad days which helps somewhat. I tried Adderall but that gave me tachycardia. Going on plaquenil for a newly discovered autoimmune disease helped. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted April 4, 2019 Report Share Posted April 4, 2019 Fatigue is a symptom. My EP added Mestinon to my drugs six weeks ago and it's been a big help. I saw him yesterday and asked to increase the dose so we doubled it. I drink a lot of coffee, addict level, but it helps. If you can find a stimulant that gives you some extra alertness give it a try but a little at a time. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted April 4, 2019 Author Report Share Posted April 4, 2019 1 hour ago, WinterSown said: Fatigue is a symptom. My EP added Mestinon to my drugs six weeks ago and it's been a big help. I saw him yesterday and asked to increase the dose so we doubled it. I drink a lot of coffee, addict level, but it helps. If you can find a stimulant that gives you some extra alertness give it a try but a little at a time. I was on mestinon for about 3 months. No positive effects. My specialist took me off and put me on carvedilol. Only slows my heart rate if I do nothing. It's helped my palpitations I feel like. I mean i still get them but thus far that's the only positive thing so far in my treatment of this disease. Pretty depressing so far. I can take a hint of caffeine here and there. Otherwise I'm shaking and feeling Ill. Funny because 10 years ago I'd throw down energy shots and feel amazing. I think I actually drank a bit of coffee and a 12 oz Coke when I made this thread. My wife had a shingles outbreak plus she has other health issues so I've been going overboard this week. And the way I felt scared me. I've rested today so I feel better. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 5, 2019 Report Share Posted April 5, 2019 @Derek1987 - at some time in my 10 year POTS career the fatigue was unbearable and I truly suffered from it ( so did my family, which is unacceptable ). My specialist put me on a very low dose - 5 mg - of Ritalin. I still take it to this day - it helps me a lot. It gives me enough of a boost in the morning that I can do some chores around the house as well as do mild exercises. The activity also helps with better, healthier sleep which in turn also helps the fatigue. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted April 7, 2019 Report Share Posted April 7, 2019 I have fatigue that hit's me suddenly , I know I have to stop immediatly or a flare begins. I do pacing anyway which has lessoned the fatigue attacks but I still gave them mutiplied times daily they just don't last as long now. I don't know if you have sleep issues but once I got control of my insomnia things improved. I take antihistimes and my Dr changed me to one that makes you drowsy , along with sleep hygiene I have managed to turn my sleep pattern back to 7 hours apart from bathroom visits! I believe this has been had a huge impact on improvement in a number of symptons for me Quote Link to comment Share on other sites More sharing options...
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