I Really Believe Exercise Is The Most Effective Treatment Currently.

[FarmerAmy]

I actually don't have pain with my POTS. My worst symptom is lightheadedness. I also have fatigue, weakness, shortness of breath, and tightness in my chest.

I know I need to exercise, but most things make me so dizzy. I can't imagine getting on a bike--I'd surely fall off! And a rowing machine would send me reeling. That's why I've been trying to think of things I can do that wont make me horribly dizzy.

On my hike yesterday I really had to keep walking *fast*. If I slowed down at all I got horribly lightheaded. It seemed like the trick for me was to walk fast enough to keep the blood going to my head. It was also cold out and I know that helped tremendously.

I have always had exercise intolerance. I was doing triathlons 10 years ago, but I always felt terrible during the training. I'd go for a 5 mile run in the morning then have to take a 2 hour nap afterwards. I always felt like something was holding me back. Now I realize it was my POTS!!

However, this is just my experience. I am convinced that we all have a myriad of different illnesses on this site. I try to pay attention to people who seem to have similar symptoms to me and then I try to see what works for them.

[badhbt]

I have a hard time thinking exercise is the cure for me. I think that is actually what triggered my flare. I was doing a 6 week intense boot camp. I was almost done and bam POTS hit me. I don't think I will ever work out like that again

[jangle]

Well contrary to my thead title I've actually found fludrocortisone + volume loading to be quite effective in ameliorating symptoms. I'd like to up the dosage of fludrocortisone, but finding a doctor to do that is proving to be quite challenging.

Exercise has its role, it takes time and a lot of commitment, and is heavily dependent on your current state of health. I would say when I was running 5-6 miles per day I was feeling about as good as I'm feeling on .1 mg/d of fludro. Maybe a little bit better. I really need to start exercising again.

[Relax86]

I've been slumping this week and haven't exercised in about 2 weeks. Every day I feel crappy I know I should try and move something but it's hard to push when you start feeling bad. I'm not POTSy but my other dysautonomia sx have flared a little. Tomorrow is my day for no excuses - I will move.

[looneymom]

I've read pros and cons about exercise for POTS. I am beginning to think that exercise is good as long as it is done in moderation. If you have not been exercising, you will have to start slow and build up. Exercise has made a difference for my son.

[SeattleRain]

Well contrary to my thead title I've actually found fludrocortisone + volume loading to be quite effective in ameliorating symptoms. I'd like to up the dosage of fludrocortisone, but finding a doctor to do that is proving to be quite challenging.

Exercise has its role, it takes time and a lot of commitment, and is heavily dependent on your current state of health. I would say when I was running 5-6 miles per day I was feeling about as good as I'm feeling on .1 mg/d of fludro. Maybe a little bit better. I really need to start exercising again.

That's very interesting. Do you think fludrocortisone would be appropriate for someone who does not have a drop in blood pressure? Sometimes my BP can be a little high. I'm reading the side effects and there seems to be a lot (potential, that is).

Have you experienced any negative side effects from it?

Also, when you say volume loading, does that translate to high water intake?

Thank you

[Altruism]

My doctor does not believe in Fludrocortisone and calls it "Expensive salt and water".

Anyway, I was curious how much exercise is too much? I do 30 min recumbent bike 5 days a week, but I'm housebound and bedbound on most days. Should I push myself more?

[badhbt]

Alltruism,

I think that is really good, especially for you and your symptoms. How do you feel after doing 30 minutes? I think you have to listen to your body. Have you ever done any leg exercises? I think that is helpful too.

[volo]

I agree, Altruism, 30 min sounds really good. I can't do that long at one time. I just got up to 10 minutes, then two 5 minutes later in the day. I also do floor exercises with weights, concentrating on core and legs.

The rule I've been using is to try to do as much exercise (and, in my condition, I include everything in that, including stairs, housework, etc., as well as floor exercises, bike) as I can such that the next day I can do the same amount. I found that too much activity in one day often set me far back for the next day or two. Once I found the amount that didn't set me back, I continued it, and very slowly tried to increment it up, with an emphasis on slowly.

It seems others push through more, but I got so sick a few times after increased activity, that I became cautious.

[Altruism]

Maybe I should define "Exercising". I'm not sweating all over and my hr does not go above 120-130. I use my recumbent bike on resistance level 5 out of 8 and I feel ok at the end of it. I don't push too hard, I actually feel guilty for not pushing enough compared to other people. Mine feels like a walk in the park compared to what other people do. But this is all I can do.

Badhbt, I tried leg exercises, but they tend to work on the same muscles, so I just do the bike and try to stand up as much and as often as possible. I force myself a lot these days. Probably stand up 20-25 times a day for 1-2 minutes.

[AllAboutPeace]

My doctor does not believe in Fludrocortisone and calls it "Expensive salt and water".

Anyway, I was curious how much exercise is too much? I do 30 min recumbent bike 5 days a week, but I'm housebound and bedbound on most days. Should I push myself more?

Altruism,

I just wanted to jump in about your docs comment about Florinef. I wont say it's a perfect drug (and I've yet to learn about a med used for Pots that is... ), but it made a huge difference for me. I did salt/water loading for 10 months and was functioning at about 20-25% despite trying many things to improve my situation (nutrition, exercise, rest, etc, etc). I started seeing small improvements in the first, second and third week, but after the fourth week, I was able to drive and participate in life again. I wasn't back to my previous level of functioning, but at the time I considered it about a 50% improvement. My previous inability to exercise even 10 minutes at a time changed to 25 minutes (which was also huge for me). I'm still playing around with the dosages now, but I found after the first four weeks I was able to drop down the dose to a maintenance level (presumably because my body was now retaining the salt and water). No amount of salt/water loading on its own was able to do any of this for me.

We are all really different so I know it doesn't work for all of us, but it has definitely made a huge difference for some of us. It annoys me that your doc would just dismiss a med that at least has the potential to significantly improve someones quality of life.

It's amazing that you are able to do that much exercise at this point! Have you noticed any improvements in your baseline hr, a reduction in adrenalin surges or symptoms in general?

[YolaInBlue]

I'm one of those people that can't push through symptoms with exercise. If I do, the next day I can't get out of bed at all.

I realize the importance of exercise, I'm a certified fitness instructor (though I haven't been working in that field for 2 years), and I was in great shape when dysautonomia hit me. I especially miss aerial acrobatics that I've been doing for 7 years. Sometimes I look at my silks and cry. I lost a lot of muscle initially (3 months bedridden). Doctor that diagnosed me at the hospital (nephrologist) asked me if I was deconditioned prior to my illness. I showed him my aerial pictures on my laptop and his jaw fell. He started laughing. He found it funny that a person like me would get this condition. He said not to worry, exercise and florineff can cure me and I can go back to hanging upside down in the air. I wish it was that simple.

At first I was pushing myself on my good days and didn't get anywhere. I started having episodes again and that put me back in bed for several days at the time. Then I visited dr. Thompson and he advised me to built up slowly but exercise every day, which I do now. He also added a beta blocker and midodrine which help me (especially midodrine).

My first goal was to alternate sitting and standing, and spend as much time upright as I could. I also started with 10 minutes of recumbent bike on the lowest resistance setting. Every 3-4 days I was adding more time and/or resistance.

Now my routine looks like this:

Mornings are the worst, so I start around noon with a 10-15 minute walk outside to get some vit.D. It's a slow walk with many stops. Around 2p.m. I make sure to get up and walk around the house for 10-15 minutes or until dizzy. On good days I do Pilates, Yoga or ab exercises on the mat instead. Sometimes I turn on music and try to dance around the living room, lol.

Around 4-5 p.m. I take a short walk outside again. Sometimes I can only sit on a bench outside. It's still good to get out of the house.

At 5:30p.m. I usually have to lie down for an hour or two. Then I take my afternoon dose of florineff, load on water and salt, and after about an hour I do recumbent bike. I'm currently doing 35 minutes on medium resistance (level 5-6 out of 12) while watching a movie. I keep my heart rate at about 120 which is 50 pts increase from just sitting on the bike. If I go higher I get very dizzy. I do free weights for arms while sitting and finish with stretching on the floor (trying to get my splits back ).

I have no visible blood pooling in my legs and compression hose do nothing for me. I am however dizzy a lot, especially after meals, so I suspect blood pools in my abdomen.

I wouldn't be able to function without florineff. Right after I noticed that IV saline helps me (ER visits before my diagnosis) I tried Pedialyte, water and salt but it just didn't stay in my body. Whatever I drank I peed right out and was constantly thirsty. They first tested me for diabetes insipidus. First month on florineff was tough but once my body adjusted I could get out of bed and start getting my life back. I know it doesn't work for everybody. It made a big difference for me, but it did take a month of blood pressure spikes and headaches.

Now I'm gonna get ready for my walk