Exercise - How Much Can You Tolerate?

[davecom]

I was bed bound two months ago for two weeks. I now am up to recumbant biking 30 minutes 5 days a week, doing light weight strength traininig the other two days, and walking 60-90 minutes spread out over 6-7 walks spaced every 2 hours every day. I wear a heart rate monitor during everything. Have I seen improvement? Minor, which is better than nothing but it's hard to tell how much is the exercise and how much is medication. I feel keeping at it and continuing to increase it as I can tolerate is my best option even if it is extremely uncomfortable and leaves me in a state of constant headache and pain.

[POTLUCK]

I put moderate to heavy. I can do a lot but the limitation is the rising heart rate. It goes over 200 and so there is a limitation.

[Kay107]

I exercise heavy 5-6 days a week. I usually do a combination of weightlifting and metabolic conditioning (crossfit), and faint a lot during the weightlifting portion. Recently I have shifted my focus more towards the weightlifting with fewer metabolic conditioning workouts and I have been fainting WAY less, huge difference. So before I spent about 1 hour on weights + metcon every day, and fainted a lot; now I spend 2-3 hours on just weightlifting every day with a 7-10min metcon every other day and almost never faint.

[blueskies]

I was an aerobic queen back in my 30's and early 40's - an hour every day - even taught a little - now, nothing - some days can walk a little - try to walk about 5-10 minutes every day just to keep moving some - can't bend over without nearly passing out - can't do more than a little stroll otherwise, will be stretched out in a neighbor's yard - climbing stairs is OK for one flight, after that, nothing doing - MD says not to worry about exercise and just do what I can - still bothers me that I have less strength and endurance than my 88 year old mother!

That sounds a lot like me. I was always fit and worked out a lot. plus day to day stuff, incidental exercise was huge. eg I'd walk to most places I had to go to. Often hours long walks and big hikes too. Then pots hit hard. I took up swimming at advice of doctor. Up until 2 summers ago though I was able to keep fit swimming -- 2 kms a day. But we moved away from the beach and getting there and back is now impossible. We are moving back to the beach for next summer (I'm in Australia) as I have to do exercise and swimming is the most pleasant, the most easy.

I'm pretty deconditioned. Not really bad but compared to when I was swimming my condition is not good at all.

I realize that not being able to go swimming is a possible reason for the ongoing severe depression I have. I was talking to one of my sons last night, the older one and it's rare that we get a chance to catch up and we were talking about his, his brother's and my love of the ocean. They both surf. He said that swimming keeps him calm, less anxious etc. I told him that going swimming in the ocean (it's all in the salt water for me) was like rubbing medicine all over my body that made me feel good for at least a few hours afterwards. And he said, "exactly. mum.'

blue

[spinner]

The key to it seems to be controlling all triggers. No heat, no sudden exertion or BP spike. Nothing after a heavy meal, caffeine etc.

I do a walk/bike/swim 6 days a week unless im flaring. Its a slow consistent plodding workout, but i love it.

I make SURE theres no stress or multi tasking going on. Keep the phone at home. No radio or conversation.

Just solitary relaxing event. Consistent, same time,.

Swim is best for antigravity and cools your inner core. Also de stresses completely as all muscles are

involved.

[clairc]

I can't seem to increase my physical activity at all. Even the simplest things make my symptoms much worse. I recently started doing Pilates and even 5 minutes of level one exercises can leave me wiped for the rest of the day. I did them yesterday and now I'm paying for it with pain, weakness and feeling like I have the flu. I've been advised to do swimming, water aerobics and tai chi but they are all too advanced for me and if I try it makes me quite poorly, I shake uncontrollably, my skin goes clammy and my strength is wiped out.

I really want to try and improve my fitness, I can barely walk 50 yards with a walking stick but I feel like I'm taking one step forward and two steps back.

[pink1975]

It totally depends on the day for me. Some days I can't even walk from my car to my office and others I can walk all over (not really heavy exertion however, that is just a no no for me every day.)

[BSmith85]

I recently decided to dive in head first & have survived almost 3 months of crossfit which can be about as intense as exercise gets at times. Felt MISERABLE the first 6 weeks or so but kept pushing & it's to the point now that I think the overall health benefits outweighs the additional symptoms I am forced to deal with. My biggest issue now is trying to get my body to shut down enough to fall asleep at night. My biggest complaint would be that pounding heart feeling when lying down making sleep more difficult.

[xRobin]

I have chronic fatigue syndrome, and exercise has always caused a significant flare up of flu like symptoms - fever, sore throat, lymph nodes, flu aches, sheer and utter exhaustion. I'm a very severe patient at this point in time and struggle to get around my house. So when I first learned I had POTS, too, and read that exercise is a good treatment I felt pretty hopeless.

Still, I started researching exercising recommendations for CFS. (Smaller, for now, studies point that there are problems with oxygen extraction, and muscle abnormalities at the cellular level as researchers try to understand why ability to exercise is so badly affected.) A lot of people can't tolerate graded exercise so the suggestion is to just start with whatever feels OK, and then keep careful notes the next day or two and see if there are any symptoms. If not, exercise at that level every other day, adding more very carefully. If not, cut back and try again.

I bought a set of floor pedals and do that lying flat. For someone who used to love doing ten miles hikes, it's embarrassing how little I can do. But, I have to try. After experimentation I learned I can do 30 seconds of pedals, 3 times a week. I've been able to sustain this for two weeks, and I'm moving (carefully) up to 40 seconds. Alternately, I can do about three minutes of walking (about 150-200 steps.)

I'm putting this here because there is an overlap between CFS and POTS, and maybe another patient might read this and feel, like me, there is no such thing as too little. (Maybe the POTS specialists would feel that is too little, but I'm not well enough to see them, ha.)

[kds]

I voted that I put in more than 30 min a day at mild to moderate, but most of that is pretty mild and spaced out over the day. I spend the most time on restorative and stability focused yoga/Pilates, and walking as much as I am able. I have found my autonomic symptoms are helped the most by short bursts of interval training (on an elliptical or recumbent bike) that get my heartrate to 90% of max for a total of 4 minutes. This usually requires 8-15 minutes of total exercise, 4-5 days per week. When I try to do more, I injure myself and end up relapsing.

[TCP]

I have taken advice from a doctor who treats people with neuropathy. I've been told to basically move around and if I do any exercise at all to do gentle yoga, tai chi or swimming. For ordinary neuropathy then exercise can be tolerated but if you have autonomic neuropathy then exercise is not advised because of heart, BP and respiration issues. I know personally that if I exert myself just a bit I get very out of breath and my heart feels like it's going to burst. The doctor said that he has known of cardiac arrest with over-exertion and caution is needed. Elsewhere I have read that exercise can rebalance the autonomic nervous system, but I feel that this is not ideal at all. I think care must be taken at all times.

As with all people with ME/CFS there's always pain and recovery is slow and hard. I feel too unwell now to do more than short walks around the house daily. Going outside is a chore and yet walking was something I greatly enjoyed.

I'm still thinking that POTS and ME could very well be one and the same thing.