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futurehope

Update On My Exercise Program - I Have Pots And Mcas - Six Months Have Gone By

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FYI, I will be 61 years old in a few days, and I have had severe POTS symptoms, that necessitated withdrawing from the workplace since 2003. I have had strange symptoms and problems throughout my life but I finally obtained a medical reason for much of my suffering. I was diagnosed with Mast Cell Activation Syndrome this year.

After a cardiac work-up, I was given Dr. Levine's three month exercise program that he has suggested for POTS patients. Dr. Levine is a cardiologist. After the three month program, I was given an additional three month suggested cardio work out (by Dr. Levine's office) which was not part of the study. The goal was to increase my cardiovascular fitness. In this post I will share my thoughts now that I have doggedly and religiously followed a cardiovascular fitness program for six months with no let up. They are my thoughts about my experience. Hopefully, they will be useful for someone else, but are not meant as a suggestion for others to follow. This post is for informational purposes only.

I was extremely motivated, regimented and disciplined in how I approached this. I began in March of 2012. As the weather got warmer, and the second floor of my fitness center (where the cardio equipment was) became increasingly uncomfortable, I had to come up with ways to continue. Being hot makes me extremely ill. I have MCAS and I do not handle heat well at all.

Once the temperatures were up there, I took it upon myself to wake up very early in the morning, and arrive at the fitness center by 5:30 AM, opening time on weekdays, or 8 AM on weekends. I found out the hard way that at 8 AM on the weekends it was already too hot for me, but I doggedly did what I could, sometimes with bad effects.

I took three bottles of water, two at room temperature, and one that had been refrigerated. I drank constantly throughout the work out. If I was smart (again, this was learned the hard way), I prevented heat exhaustion and MCAS degranulation by using the refrigerated bottle as a "cold pack". I would touch my forehead, back of neck and face with it to help my body keep cool. It helped immensely. I found out the hard way that I am unable to drink refrigerated water while I am very hot because I get bad intestinal cramps from doing so.

Most weeks I was at the fitness center for 5 or 6 days. Weight training was twice/week, usually with 3 - 4 days in between. If I had enough stamina, I could append the weight training to after the cardio work out.

I went out of my way to avoid illness, as any illness would set me back quickly and necessitate falling back. I avoided people with coughs and colds as best as I could. I used disinfectant wipes on my cardio equipment before use, and disinfected my hands by using a bottle of gel I keep in the car at all times after each work out.

Every day, whether that was a weight training day or not, I did sit-ups on the equipment. I also did back exercises which involved leaning over a saddle with my feet held in place on the equipment so that I had to use my back to bring my torso up from leaning over. At the beginning of training, this exercise made me very dizzy and was extremely difficult. I still do this one only 10 times. I started at 5 times and very slowly so I would not pass out.

I also hang on a piece of equipment by my forearms, and do leg raises to the 90 degree position and slowly lower my legs so as to work the lower abs. This exercise is done every time I am at the fitness center whether it is a cardio day or a weight day.

All this was extremely difficult.... I dare say, more difficult now that my body is malfunctioning.

The sets backs happen rapidly. The gains are slow and difficult. I am still an ill person that has poor stamina. I still require much rest and sleep. I try to avoid chemicals and preservatives in my food. I try to avoid sugar-laden junk foods. I cannot tolerate heat and will douse myself with water and stay in the shade or avoid the heat at all costs.

This program was no cure. It enabled me to have goals to feel that I was working towards a possible improvement. I would say after all this work I am partially improved. I can stand for longer periods. I can work out for longer periods. But, standing still and standing in the heat will still be uncomfortable. It was mentally challenging and physically difficult. But, I did feel like I accomplished something. What it is worth in terms of my health? I really don't know.

It will be interesting to see what I decide to do once the six months is up to maintain my accomplishment. This will happen at the end of next week. I am able to jog intervals. The last one I did this week was after warming up, I did 10 2 minute slow jogs with a one minute rest in between. There is a long cool down and recovery done after this. I can stay on the equipment for 60 minutes, but it is tough and tiring. Now I know the full meaning of WORK out. It is hard work.

So, I do not feel cured. I feel like I can be set back rapidly, more rapidly than if I were functioning normally. I am doing the best that I can with what I have realizing that there is no magical cure here. I strive. I fail. I try again. I live.

I have no idea what I am going to be doing for maintenance here on out, but I do feel like I deserve an Olympic medal for pushing and striving through a very challenging six months.

I wonder if all this has done my cardiovascular fitness any good? I suppose, but maybe I was harming myself? Anyway, all for now.

I thought someone out there might be interested in my escapades.

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Thanks so much for sharing. It's great to hear you have had some improvements.

I am one of those potsies who feels better when I move around and worse when I stay in any position for too long. I get dizzier and more short of breath the longer I stay in any one position.

I think this is part of the reason why exercise might help me. I now exercise for 1 hour every day. It took my 8 months to build up to this point. I do not exercise in the heart rate zones that the levine people do, but regular, lighter cardio works better for me.

It is not a cure, but it has helped me manage my symptoms.

We are all different. It is a mystery why it helps some and makes others so much sicker. I judge no one and only replied to this thread to share my own experience.

I only discovered this year that I probably have MCAS which is why everytime I tried exercising in the past I felt like I was going to stop breathing afterwards and during. I'm able to do much more exercise now that I'm on tiny doses of H1/H2 blockers and singulair which stops the near anaphalactic episodes I have during and after exercise.

I know that when I was very ill unloading the dishwasher or loading my washing machine was my aerobic activity done for the day. All I think exercise has done is helped me to tolerate standing and walking for longer, and conditioned me to activities of daily life, but I still have the underlying problems which if I stopped exercising would become much worse again. Not that this is anything to scoff at, but still, it has done far less than was promised to me by my ignorant doctor who suggested all POTS was due to deconditioning.

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Thanks for posting this - food for thought!! It's interesting to see how some people find exercise so incredibly beneficial, while for others, it's not really clear to what extent it helps.

I'm in the latter camp. I know too much exercise can demolish me for days, but I feel it's crucial that I don't get so deconditioned that any exercise becomes problematic. I can do non-aerobic activities (lying-down type of exercises), so I do some sit-ups or leg lifts every single day. It's the aerobic ones that are very hard. Because of that, I try to walk whenever I can, even if it's just for 10-15 minutes at a time. If I can't get outside, I walk up and down the stairs. It's very little, but I think it's better than nothing.

I give you so much credit for your perseverance with the exercise. Please keep us posted on your progress.

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