Exercise Intolerance

[Mydoggielovesme2]

I am wondering how others deal with this problem. I have to admit that I had all but given up on exercise. Before I got sick, I was so active, hiking, biking, gym ect. But for the past few years, exertion of any kind has meant even more down time.

Now that I know I have dysautonomia, I am reading that exercise is so important. My Dr has sent to a physical therapist. I have had 5 appts so far, and let me tell you, it's been awful. Passing out is bad enough, but to pass out in front of others ( other patients and workers) is so humiliating. I had warned my therapist this might happen, but it still scared her. ( I am her first dysautonomia pt.) Now she is almost as afraid as I am. Does anyone have any suggestions? I really want this to work.

[SaraC628]

I can't speak from experience, I have not tried to begin any exercise yet. I am already so exhausted. I have read a few things about trying to begin an exercise routine that is really light and starting at only doing a couple of minutes at a time and trying to work up from there. I'm not sure if it would work for you, but it might be worth a shot. Good luck!

[volo]

What kind of exercise does your physical therapist have you do?

When I was bed-bound, I did leg, arm and core exercises in bed, as I was able, using light weights. Then when I was able, I moved these to the floor and added planks and pushups. This worked fairly well on most of my muscles. I tried going on the recumbent bike but within 30 seconds at low resistance my heart rate was over 140 (I'm 58) and I'd feel dizzy and out of breath, so I gave up on that. Now that I am on meds, I am slowly increasing my time and resistance on the bike as well as adding some exercises standing up.

While one can't do much cardio lying down, I feel like having stronger muscles is helping me now that I am building my way up to a bit of light cardio. I did a bit of cardio lying down by just cycling my legs in the air while on my back. I think it is important to find what one can do and build from there. I don't think it is good to be passing out, so I would try to start from some type of exercise where you don't pass out.

I certainly had the experience of exercise setting me back for days and making me sick. In those cases, when able, I just started again from a much lower level. Always looking for the level where I would be able to exercise the next day as well. When I find that, I keep that level for a week or two and then increment just a tiny bit to see if that works.

[Mydoggielovesme2]

I agree passing out is nooooo good.

The therapist was having me do recumbent bike and lower body exercises. Now we are just doing lower body stuff that I can do while lying down. These I can also do at home. We were told to try to strengthen the calf muscle, as this helps to bring the blood flow back up to brain.

I think I just need to remember how long it's been since my body was in " motion", so it's going to slow going.

[volo]

I think building up your muscles could help you on the bike later. Also, if there is some level you can safely do on the bike without passing out, I would do that. I started with things that didn't seem like "cardio" from any definition of cardio I was used to (very low resistance on bike for very short times) but by consistently do them, I am slowly building up. For me, my heart rate gives a pretty good indication of whether I am doing too much, so wearing a heart rate monitor for all exercising works well for me. Don't know if that would help you, as maybe your issue is low blood pressure than heart rate.

[looneymom]

Exercise is good for you. My son sees a physical therapist twice a week. When he first started out, he did 30 minute sessions and he was wore out. Our physical therpist knew nothing about POTS but was willing to learn. I brought her articles from Dinet. My son was bedridden for several months but learn to sit up and walk again. Because he was so severe, he did pt every other day Monday, Wednesday, and Friday. He does rest on the weekends. Our PT also will take his blood pressure and monitor his pulse during during the sessions. As you become stronger and your body adjust to POTS, you may be able to exercise more days. My son has had the flu, so he has had to back off when he was so sick. Sickness does take a toll on your body. On days he does not see the pt, he uses a stationary bike and does exercises for core muscles and exercises on posture ball. Hang in there, exercise has its benefits. Just go slow and be patient with your body.

[spinner]

With my personal condition, i call my issues exertional intolerance. If I suddenly spike my BP i geet sick. If i lift something heavy i get sick.

I take it easy and walk or bike ride, start slowly, and try to go for 45 min or an hour if i can. Most days i can.

Occasionally i just feel too dizzy or weak and head home.

I always make sure i dont get too far from home or the car. Sometimes i walk along pushing a bike in case i need to pedal home quick.

[bkweavers]

Like Looneymom's son,my daughter wasn't upright at all for 3 and a half years. She went to therapy once a week and did exercises for arms, legs, and core when at home. There was very little she could really do at that point as sitting up at all was out of the question. Due to extensive vestibular therapy in the summer of 10', she became upright again and began to do more little by little. Since that time, she is in phy ed class again. She does everything all the other kids do except if she's beginning to really get overall tired or dizzy, she asks the teacher to be able to take a break. She has always been very good at listening to her body when it's at the breaking point but she also works her body as she knows that it helps her to stay healthy. She is so strong now from all those years of lifting weights and doing core exercises that she can do 20-30 reps of push ups! She impressed her male cousin not to long ago when he dared her to show him!

For my daughter and her physical therapist, it was a constant checking in to see how much or how little to do with her. The therapist would always ask how my daughter had felt after the last session. If we said that she felt awful for days on end after, she would pull back on some of the exercises. If she just felt bad that night, then she would continue with the same ones. If you are constantly passing out, I would think it's time to pull back a little. Swimming was another exercise that really helped my daughter and the place where she did therapy had a pool. Very easy on the body and I know lots of others on here have done that.

I so wish I could give you the name of my daughter's 2 therapists. Unfortunately, both have left and one has moved. I always told them they should do their doctorate on POTS!. Dan Millrood was one physical therapist that we contacted. He has worked with a lot of people with autonomic disorders and I even have a paper written by one of his students. I think he is on the east coast. I would also just keep giving your physical therapist as much info as you can on your disorder. (I don't know if you have POTS or another similiar to it) I gave my daughter's therapists lots of reading material and I know they also went online to some of the forums as well.

I hope some of this info helps or feel free to message me.

Brenda

[bkweavers]

Just thought of something else. The therapists connected with my daughter's doctor also to get more info and help. Her one doctor was really no help when it came to the exercise part of it but the other was.

Just another thing that may help your therapist. Tell her/him not to be afraid of this with you. Obviously, it's not fun to pass out but no exercising is only going to make you worse! I hated having to push my daughter at times and it was so difficult to watch her but it sure paid off in the end and it has made her a stronger person in more ways then one.

Brenda

[Mydoggielovesme2]

Thank you Brenda, Just had therapy today, and it went better. We talked about backing off, just a bit. Which she admitted was hard for her to do.

But I did not pass out and was able to walk out on my own. I just need to get used to educating others, until they understand--we know what we are talking about--its my body!