Is Exercise Dangerous?

[IDreamInColor]

My doctor told me I need to exercise, but aside from feeling extremely weak these days I'm worried about my pulse. When I do something as simple as climbing my stairs at home my pulse races to 140. I can't imagine what exercise will do to it, I'm afraid. Has your doctor also told you to exercise?...are you afraid? Do I have reason to be afraid or am I being a worry wort?

[Katybug]

Hi. My cardio and my neuro (POTS specialist) have both encouraged the same type of exercise...recumbent bike. In fact, I just spoke to the neuro about it specifically today. He suggested the protocol from a study in Boston starting at 10 min on the bike 6 days a week. Each week I am to increase the time by 5 min up to a total of 45 min. (There is another exercise protocol out there from a study in TX but he said that should really be monitored by a cardiologist.) He said only increase the time from week to week if I am able to tolerate what I am currently doing without ending up in bed afterward. He also said that I should keep walking my dog as often and for as long as I can, which at this point is 10-20 min 5-6 times a week (I usually have one or two days when I can't do it at all.) Maybe your doctor can suggest something that would be safe that is specific to your health status.

[Ernie]

Hi,

Many of my doctors suggest it and I do exercise. I am afraid but I still do it.

[yogini]

If you can find a way to exercise without making your symtoms too much worse, it can help your recovery. Try non-cardio exercises where you are sitting or lying down.

[kclynn]

My son was also told when starting out to just go sit on the bike. This is for if you are having lots of anxiety about it. Then start and don't use any resistance for 5 minutes and then increase as you go. It will help! Go slow but if they didn't tell you to be concerned about your heart rate, then don't worry about it too much. If your heart itself is healthy it can handle those elevated heartrates when exercising but maybe you would feel better if you asked your Dr. just what would the top heart rate be for you, then you will know to slow down when you reach that.

Good Luck!

[Brye]

My big fear is hurting myself if I faint. Recumbant bike is perfect for me because if I feel lightheaded I can still push through a little bit since I'm already sitting. If you have a healthy heart a HR in the 140's shouldn't be a problem. I do wear a HR watch when I exercise and I've gotten better about figuring out what HR I begin to feel lightheaded so I know when I need to back off. I've been exercising for about 1.5 years and it's probably been the best thing I've done!!! I've overcome a lot of fear!!

[Chaos]

Both cardiologists I've seen for this and my neurologist insist on exercise. The cardio I saw at CC recommended a cardiac rehab program which helped me a lot.

I tried to tell them that I could go from 60 to 145 just by changing from lying down to standing up and it should count as interval training but they didn't buy it!

[Frugalmama]

For those that have seen improvement, do you have PD or hyper POTS? And any idea if this is as effective for those that have CFS? ( I know there's a lot of debate about overlap between the two, but even before I had POTS I had years of being almost housebound after exercise/activity )

[potsyturvy]

I have hypovolemic POTS... I don't see a huge improvement from exercise. It mainly just helps me to maintain my current activity level. I use the recumbant bike 6 days a week. I also make sure to do exercises that strengthen my arms and abdomen. My doctors have also suggested swimming as a good exercise but I find it takes to much energy just to get to the local pool and having a recumbant bike in my house is much easier!

Frugalmama, I've been diagnosed with CFS by a couple of doctors. I try to exercise in the early evening so if I have side effects from it, it doesn't interfere with things I have to get done that day. It took a while to learn to listen to my body and learn how much to exercise and what kinds of exercise I could do without aggravating my POTS or CFS. It's a pretty delicate balance, but I know exercise is crucial so that my POTS doesn't become worse from deconditioning.

[kayjay]

If your heart is healthy even "normal" people can tolerate have high heart rates. i asked my cardiologist for a range. She basically told me that even if my heart rate pops up to 200... ( ugg yes it has) I am safe as long as it doesn't stay high. It is really scary and I used to be obsessive about wearing my heart rate monitor. What has really helped me is pool exercise. i joined the ymca indoor pool and have natural compression! I can do so much more in the water safely. I have to get out very gradually and carefully though. Although I am always the youngest person in every class, many people have health issues ( MS, knee, back etc.) It is a good workout for me and I hate to get out of the water because I feel so good in it... even can do "cardio". I guess mermaids don't get pots

[lgtaylor100]

Kayjay -Interesting about the pool. This summer in an unheated pool I felt great. While I was in the pool I had no symptoms and like you I didn't want to get out. I do have access to a heated pool now that the weather is getting chilly. Is the pool that you go to heated and do you feel good in the heated pool?

[MightyMouse]

For most folks with POTS/NCS, no exercise is NOT dangerous. Dr. Grubb is a strong proponent of swimming as a good way to get started. He also suggested a recumbent bike, which I used for a long time, but recently donated to a friend b/c I can do yoga now. It took me years of work to get myself there.

Nina

[kayjay]

I am in PA so the water is heated but not too warm. I feel cold when I get in ( I think it is 80 or 82 ) and warm up as I move around.

[ramakentesh]

I currently run 5 kms every second day without ill effects, but it took me (this time) a long while even doing this to get a good recovery in terms of strength and less fatigue. I dont think exercise really effects the primary causes of POTS. But it might help the symptoms a little.

[Daveb]

For most folks with POTS/NCS, no exercise is NOT dangerous. Dr. Grubb is a strong proponent of swimming as a good way to get started. He also suggested a recumbent bike, which I used for a long time, but recently donated to a friend b/c I can do yoga now. It took me years of work to get myself there.

Nina

My son did Dr. Levine's exercise protocol and it helped him a great deal....so much so that he is back in school after missing his sophomore year. It starts out recumbent (bike), keeps the patient in a target heart range designed for that person, and gradually moves to more intense and upright exercise. Lower extremity and core strength training is sprinkled in there as well. The downside is now that he's back in school, he doesn't have the energy after the day to continue the maintenance program and we're starting to see him backslide.

We've always read how great swimming is, and I thought I'd comment. My son was a varsity swimmer before becoming ill. Flip turns caused him to get migraines and nausea at the outset of POTS. Now when he tries to go back to swim, it is the most difficult exercise for him. His theory is that the use of his arms cause his heart rate to skyrocket. He does ok on the ex. bike and elliptical machine.

Edit to add: If you're Dr. is recommending it, I don't think you have to worry. Ask more questions about target heart rate and buy a quality monitor. Take it slow.

Good luck to you.

[ramakentesh]

Swimming generally lowers BP.

[jknh9]

My cardiologist recommends doing the recumbent bike for 40 min 4-5 days a week, or subbing a couple of those days with other exercise such as a long walk, water aerobics, or cardio aerobics if I can tolerate it. I can't do intense cardio for very long but I do the recumbent and take a long walk frequently. I used to do yoga, but even on meds I faint now from routines that have a lot of up-and-down pose switches. Lately I've started doing dance workouts based on hula and Tahitian dance, which are so much fun. They are great for muscle tone but don't have a huge range of intense movement like aerobics.

My doctor also recommended the elliptical, but I worry about that since if I faint on one of those, there are a lot of things I could hurt myself on.