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godslyric

Delayed Exhaustion

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I had a POTS crash in 2002 and was laid up for almost 2 years. Prior to that crash I was hiking canyons 4 time a week, boxing on and of, and weight lifting. Well needless to say after the crash my conditioning went south in a very big way. I went from 180lbs training every day to 125 lbs and in bed for months on end. The doctors were very close to worthless in my case. I knew I just had to get out of bed and move at all costs. I started with walking down the hall, then down the stairs, and then around the block and so on. It took me a year to get to where I could walk a mile in a park again. I weened of all my meds (with a doctors help) and got myself to 160 lbs and could reengage with the world again after a few years.

But it seems I just cant get my body to do labor again without being hammered a few days later with severe exhaustion and pots symptoms. I have had Stress tests, Echo Stress test, all kinds of Blood work, all of which come out normal for the most part. My adrenaline output is way over the top if I'm not concentrating on relaxing my body, and the area in my frontal lobe where the hypothalamus is located which tends to relax the whole body if I do it right. But never the less if I wash my boat (that I live on) it takes a few hours of labor, then I will get knocked on my butt 2 days later every time. It seems to be worse in the winter time when the sunlight is scarce. Then in the summer I get a bit hypo manic. If I take Vitamin D3 my pulse goes up and I get jerked out of my sleep as I'm falling into REM state. So D3 is out along with B12 folic acid and a host of other supplements my body doesn't seem to want to receive.

It dose seem as if when I push myself physically to a point having these problems and just keep pushing at it, I tend to get use to the new area of conditioning and my body excepts the new parameters after a wile. But it is a rocky road with all of this. Any insights?

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No insights (sorry) ...but I share your frustration. I too find that if I really push myself to be more 'up and about' that it is better in the long run. I get about an hour of feeling 'better' at 11pm after a day of making myself do more than I thought my will could cope with. On the days I just can't, I feel worse.

I have seen a few people post about vitamins on here. What is the rationale behind taking supplements? I saw a documentary which said that taking any supplements that aren't present in foods or in their own natural form is almost useless to the body. Anyone else got some info on this?

Wishing you some answers!!

Rachel

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Post exertional malaise is very common if you have CFS or POTS/CFS combo (Chronic fatigue syndrome)

i have days I can't push (can't be upright) other days I have fatigue I can push through but pay for it hours/day later. Can be quite normal for many.

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Yeah, I was up and about Thursday and Friday and really pushed myself. So it's all I can do this weekend to feed myself and walk a bit. We know to plan on a worsening of symptoms after much exertion or stress, especially stress!

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I tried to be normal for the holidays and had company I'm all flared up. I wouldn't trade one precious memory of fun for any of this though. : ) bellamia~

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As best as I can, I usually try and pace myself. That means that if I have an "outing" today, I will not voluntarily have one tomorrow. Of course, sometimes "life happens", and I wind up crashing later.

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I feel for you. I used to be very athletic too. I think just working on stretching your parameters like you said is a good idea and accept when you really need a break. My biggest problem is gathering up the mental strength to be consistent about exercising. If I'm consistent I deal with much less fatigue. It's a real challenge to get out of bed to work out for sure.

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It dose seem as if when I push myself physically to a point having these problems and just keep pushing at it, I tend to get use to the new area of conditioning and my body excepts the new parameters after a wile. But it is a rocky road with all of this. Any insights?

After my previous relapse I got to the point where I was running 3 miles three days a week, doing weights three days a week and swimming every morning. Quite surprising given my current relapse where a 400 metre walk is a challenge LOL.

The key from trial and error (ive had three relapses so ive had practise) is waiting until your at the point where 'payback' becomes less of an issue and then pushing hard. Its a precise time in the cycle of POTS and if you get it wrong you'll pay.

Ive found the payback symptom when your very Potsie is a killer and it will set you back bigtime; whereas if you build up slowly, longer walks, faster walks and then small runs increasing intensity at a slow pace eventually you seem to be able to dampen down the after exercise malaise. Then when your doing fairly well and just getting occasional crashes a few days later the key for me anyway was to push hard. I pushed hard, and I exercised again and again before the payback came back and I got myself to a fairly good state fitness wise. So Id be out running two days later after hitting it hard and instead of the expected pain my body really responded and I improved dramatically. Its happened twice and had my back been less painful recently I think id be in a similar boat now.

Still get dizzy most days though.

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Also for me I found that part of the payback symptoms seemed in part due to glucose. When your brain is starved of oxygen from lack of blood flow, the first thing it does is stop the mitochondrial from metabolising glucose properly and then your brain gets build up of lactate. Eat a lolly every now and then and see if that helps (unless you,ve got blood sugar probs).

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I feel for you. I used to be very athletic too. I think just working on stretching your parameters like you said is a good idea and accept when you really need a break. My biggest problem is gathering up the mental strength to be consistent about exercising. If I'm consistent I deal with much less fatigue. It's a real challenge to get out of bed to work out for sure.

I find working out in the early part of the day leads to problems for me. My hydration doesn't kick in till after lunch, so I tend to labor after eating my noon meal. By then my system tends to be hydrated, that is, if I have put the right amount of h2o n salt into the system.

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