Trying To Understand

[corina]

For some time now I'm working with an exercise physiologist to try make progress in exercising. I'm "training" wearing a hr monitor and data are sent to a lap top. Today we've analyzed the data and there are a few very striking things. One of them is that biking is much harder on my body than walking. I get higher heart rates and HRV (Heart Rate Variability) is very irregular (where being active a fluent line is expected). Walking my heart rate is much lower also showing an irregular HRV but more "in line" with hr. Extra octreotide (subc.) made the HRV much more fluent (esp walking) AND I felt much much better exercising.

My question is, why is biking harder on my body than walking? My physiologist hadn't seen this in any of his patients. The only thing I could think of is that walking activates the heart more (pumping). Do any of you experience the same? Biking being harder on my body was very noticeable for me. Extra octreotide helped make me feel better but the figures still say the same thing. I'm trying to understand esp as since having surgery last July I'm doing so much worse. In trying to understand I hope to get a lead from where we can work in trying to get better.

My other question is, why would octreotide make me feel better while exercising, could it be the constricting properties?

I hope my post makes sense as I'm having lots of brain fog atm (subc octreotide only works for 3 1/2 to 4 hours)

[gjensen]

Corina, I am going to guess the range of motion. I wonder if high stepping while you walked would not give you a similar response. Maybe it is a lot for us to adjust to. Otherwise I do not know.

I noticed that the oddest things give me fits. I tried to get behind a tiller to show a son how to operate it. It put me down, and I was actually concerned for a bit. Something about the vibration. I had not had a chance to really operate it.

Hopefully someone sharper than myself will have a better idea or explanation.

[Chaos]

Sounds like a good question to pose to the docs for the newsletter Corina.

From what I've been seeing on studies from Exercise Physiologists and ME/CFS patients, they are finding all kinds of results they "never see with any other patients". They're still trying to figure out the why's and wherefores and what it all means. In your particular situation with the ocreotide, maybe some of DINET's medical advisors will have some ideas.

[little_blue_jay]

If you were biking outside I'd guess you were riding into the wind and having to struggle to push against the wind, but if this is exercise therapy being indoors sans wind then I don't know! Good suggestion to post that question for the newsletter.

[Katybug]

Are you riding a recumbent bike or a reular upright stationary bike? I'm ok recumbent but have a hard time on an upright bike because something about bending forward at the waist over the handle bars does not agree with my body. It almost feels like it cuts off/greatly reduces my circulation.

[corina]

Thanks everyone for your input! I think I can't do the question as it's a personal question (esp re octreotide) and we need to keep it more common (our doctors can't give medical advice nor diagnose!). I did find more dysautonomia people who've found biking harder on their body so I will make it a more general question, thanks for the tip Chaos!

I've been using an indoors upright stationary bike Katie, and decided to try a recumbent next time. I tried biking outside (which I was able to do before surgery) but came home after 5 minutes feeling quite nauseous and very faint. I'm having lots of difficulty finding a breathing pattern while biking (which is easier with the extra octreotide) as I keep getting out of breath no matter how "fast" or slow I go.

Gjensen, I'll try the high stepping you mentioned, just to find out if it works the same!

I'm quite desperate for answers. I got 2 1/2 "good" years (for me good that is, not for healthy people but I was very very happy ) after being home and often bed bound for about 10 years, but surgery set me back. I thought I could handle being worse but in fact I cannot. I SO love life, I want to participate for as much as I can!

[BeforeTheMorning]

Hi,

I also found biking harder on my body than walking, and I was using a recumbent bike. I can definitely keep going for longer without crashing if I'm walking rather than biking. Maybe partly for me it's the fact that I can make myself walk slow, but I tend to get carried away and go slightly faster when biking. Probably it is also to do with the fact that when you walk your legs are pumping the blood back up better. Anyway, for whatever reason, I definitely find walking a lot easier.

Lyla

[yogini]

I think some of the others are right. Biking tends to be more of a strenuous exercise than walking. You get the benefit of being seated, but it may be too challenging of an exercise for your body. If you tried to run (as opposed to walk) you may find that even more difficult than biking because it is in the standing position.

I have had much more success using forms of exercise that are not vertical and don't focus on increasing the heart rate: yoga, pilates, walking, stretching. My HR increases too much when I do cardio and sometimes it takes days to calm down. The POTS cardio exercise protocols wouldn't work for me. I have improved and am now med free through yoga.

If you want to try biking maybe you can start with other forms of exercise and build your way up.

[bellgirl]

I would think it may have something to do with how our bodies were designed, which is to walk on two legs, bipedal and upright. Like others said, biking makes it harder for the blood to be pumped back to your heart, and that also makes it more difficult to breath when you're bending over and exercising. The ostreotide is a vasoconstrictor, like you mentioned above, which helps with cardiovascular return. I've heard that your calves are considered your second heart, so to speak, because they help to pump blood back to the heart.

[gjensen]

I hope that you get your answers corina.

You are a friendly and encouraging voice here.

[Chaos]

Corina- given how many people are having similar experiences I think your question would be very appropriate for the newsletter. And I don't think any of us would be damaged by learning something about how ocreotide works either. I'd love to hear what the docs would have to say on this topic personally.

[corina]

Thanks everyone! I have send my question for the newsletter. Yesterday I used a recumbentbike and noticed a big difference. Riding that one makes you use the calves (almost as in walking!) which is much easier on my body (hr staid lower) and felt much better. I may use this one for the time being and will try an upright stationary bike later on. I have low blood volume so my best guess is that Kim is right and I need my "second heart". I still have to work out the HRV thing but will work on that! Oh and thanks gjensen, for your kind words!

[Goschi]

Hi Corina,

I experience exactely the same phenomenon! I can walk for some minutes without too many problems, also exercising in a recumbent position is mostly fine. But exercising on an upright bike brings me close to syncope in less than 40 seconds!

I am absolutely sure that leaning forward blocks blood circulation and also makes breathing more difficult.

I am looking forward to the answer of the medical advisors.

I really hope you already feel much better with exercises in a recumbent position now! You will very soon feel some benefit from it, don't worry!

All the best wishes!!