Energy Levels ?? Stamina ??

[Confusedguy]

I'm curious if anyone has found a "magic" pill or something that works.

I go to the gym 6 days a week, do 30 minutes cardio and 2 hrs weights. People that aren't close to me think I could run a marathon. Now the fact is no matter how much exercise I do I cannot walk up a flight of stairs without being completely winded and extremely dizzy/lightheaded. Has anyone found something/anything that allows them to do more ?? Out off the issues I deal with this is the one that bothers me the most as I am very physical and no matter I do or try 1 flight of stairs does me in.

Suggestions ?

[Katybug]

I wish I did have an answer for this. If I could pick only one thing to fix, it would be this. My POTS neuro says it is a very common complaint with POTS patients and they have not been able to prove for sure what causes it. There is conjecture that it is caused by thoracic perfusion as our blood pools in our lower extremities and deprives our heart and lungs of enough blood even though they seem to be pumping away but, again, it's conjecture. I went from super fit to barely able to walk up the steps in my house what seemed like over night.

[cberau]

Common for me. I used to be a varsity swimmer in high school until I started getting the really bad migraines and nausea associated with my hyper-pots. Now I can't do any sort of physical activity without having some sort of adverse reaction to it, with a really long recovery period. Sometimes I break out in hives and get dermatitis that persists for month from one period of enough physical activity to get sweaty. Other times I mostly end up vomiting with excruciating migraines, and excessive urination...upwards of 4.5 liters per day (found that out on multiple attempts on some 24hr urine labs, had to throw them out and try again with 3 jugs on hand, so annoying.)

But yeah my sleep and stamina are totally the opposite of what I'd like them to be, and show no trend of improving.

[Guest Alex]

Count me in.

I'm constantly exhausted, even after a 10 hr sleep that I perceive as deep and refreshing. 30 min after I wake up I am tired. Exercising is not an option for the time being as I probably need a couple of days to recover from 30 min of exercise.

For a couple of days after my first IVIG infusion last month I did feel my energy levels to be a bit higher. Unfortunately it didn't last too long. I might have contributed to the "relapse" as I pushed myself to do more things than the usual (I had to take advantage of all that extra energy, right?! ....bad idea, lesson learned).

I tried B12 vitamins for a while but it revved up my POTS, and made me very agitated, so I stopped them.

I'm still looking for answers and I'm also open to suggestions.

Alex

[roxie]

Me too. My dr is a pots specialist and he very much believes in exercise. I have spent 2 ears focusing on exercise & the meds he's given me. I'm not better. I hardly function & most of my energy is used on exercise. My last appointment he didnt think that was good enough, he decided I have redo all the tests. Crazy frustrating. Then he made a comment about if the tests being good its bc I'm stuck in the mindset of thinking I'm sick. What the heck? It has terrified me. I'm do nervous & tomorrow is my ttt day. I woke up nervous today & can't imagine tomorrow, I'm just afraid. I know how hard I work but I also know how easily I get tired out, what am I supposed to do? Push till I'm in the hospital or try to pace somewhat.

At least I'm not alone in getting some exercise & still not feeling normal. But I'm so scared of tomorrow.

[Lethargic Smiles]

Adderall helps me, but you just have to be careful not to overdo it because it is what I call "fake energy". It is a bandaid, not a solution, but does allow me to be more alert during the little bits of time I can do things.

Also, d-ribose helps me. The reason it helps has to do with ATP -- the source of energy for our cells. Maybe research ATP production and recycling. I think it's pretty interesting and many believe our bodies are unable to do this properly, resulting in fatigue.

[Confusedguy]

Here's my take and my doctors. As you might have guessed I am a bit fanatical about exercise and weight lifting. I've been doing if for 25 years. I'm at the gym daily at 6:00am till 8:30am Monday through Friday than a light workout on Sundays. Does it effect me ?? **** yes, about an hour after most days i'm completely fatigued, light headed and dizzy. I work from my house so I can deal with this. Why you ask ? Well my doctor feels that if I stop the "disease" will progress faster. The main reason for me....... If I stop, it wins and frankly I just can't allow it. I won't let this control me or my life.

[Lethargic Smiles]

I'm happy for you that you are able to push through it! I was able to do that for about 4 of the 5.5 years I have been sick. Doctors would applaud my resiliency and devotion to school, part-time work, exercise, and healthy diet. Those around me saw me as the health-nut, fit girl and never imagined how ill I felt all of the time. Pushing through is the reason I graduated college and the reason I was able to get an awesome, satisfying job right out of college. It's the reason I still have muscles even though I've been unable to intensely exercise for 18 months. It is the reason for a lot of things.

In my case, I'm much worse off now for having pushed through and ignoring my body when it was telling me "no". I told it I knew what it needed, it didn't, so to shut up. I've seen cases where it has helped people and it sounds as though your doctor and you have pegged yourself as one of them. Knowing your body is key! Whereas I used to be able to push through as long as I needed to when my body was symptomatic, now my body takes that option off of the table by making it impossible for me to stand or by vomiting to the point of syncope. I'm happy you have the option to push through, I'd do anything to get it back!

[Chaos]

Talking to my POTS neuro last month he was saying static standing or TTT were the most stressful things you could do to the autonomic nervous system. Then he revised it and said, "actually doing stairs, or a stair stepper and then putting you on a TTT would be the most stressful thing you could do..." So apparently the stair thing is very common to just about all of us. When I was walking 4 miles a day in 53 min., I still couldn't go up the stairs in my house without a ton of symptoms.

Bananas- This is why I think the whole exercise thing is being looked at from a skewed position. The two day exercise tests being done at Ithica college in NY and at Workwell Foundation in CA (formerly Pacific Fatigue Labs) are showing that there are a group of us who look "mildly deconditioned" on day one of a cardio-pulmonary exercise test. BUT, when you do the test again 24 hours later, there are HUGE drops in function levels that are totally abnormal. Even in patients with severe cardiac and pulmonary disease you don't see more than a 6-8% variation between 2 days of testing. But for some of us, they are showing more than a 40% change between day 1 and day 2 testing. These are tests where they are checking gas exchange rates etc, VO2 max etc, so there's really no way you can "cheat" the test. They can tell if you are giving a good effort or not. So it's not just a matter of people not trying hard the second day.

If the POTS docs are only doing a 1 day test, it's no wonder we all just look deconditioned to them and they think we'll all just get better with exercise. That's not to say that exercise isn't helpful for some, if not all. I just think the way we approach exercise if you have this situation as described above has to be vastly different than if you have a normal cardiovascular response on both days. I spent 3 years doing cardiac rehab and then continuing to try to follow my POTS neuro's recommendation for 45-60 minutes of vigorous aerobic exercise everyday. It just made me worse and worse, despite my best efforts. And NO, I wasn't just stuck in a mindset of wanting to stay sick. What a stupid comment for any doctor to make.

I'm with Jackie...I pushed thru for years and now my body simply won't let me anymore. My immunologist has said that overdoing any activity at this point causes imbalance in my immune system and basically within hours of doing it, I feel like I have the flu and I'm back in bed for days afterwards. It's totally depressing to go out and do something you enjoy tremendously and know that you're going to most likely end up being sick (literally) because of it. Sometimes you just have to though. At least it gives you some nice memories while you're being miserable in bed later.