MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
I have been disabled with ME/CFS for 12 years. Things are starting to change for me but I have hit a road block. I have been taking high doses of vitamin B-1 (1500 mg) for the past 7 weeks. I definitely feel better and want to do more. I think the biggest thing it helped with was orthostatic intolerance. I can sit and stand for much longer periods of time now without feeling like I was dizzy or just needed to lay down.
I have many good days and if I did nothing with those days I would probably have more good days. But of course as soon as I started feeling better with more energy, I wanted to do more and I wanted to take it slow. So I joined a health club that has a Silver Sneakers program. Silver Sneakers is designed to help keep senior citizens fit and mobile. the average age in the class is probably about 70 (I am 53). It is kind of like chair yoga and does not include any aerobics. The classes are 45 minutes long and I am able to do the classes without perceiving any strong exertion.
After each class I feel hopeful that I am finally going to lead a better quality of life. But then about 36 hours later I start to feel that ME/CFS dead weight on my shoulders, my brain becomes disengaged, and I feel that I need to lay prone.
I am going to try it one more time and take my heart rate monitor with me. But I don't really think I am over exerting myself in the moment. I think it is probably the length of the classes. I guess I just have to decide if I am willing to leave the class early. It feels kind of like giving up to do so.
Oh, on another note about the B-1. I have a recumbent bike that I use once in a while and monitor my heart rate. I make sure I am not going above 100 BPM to keep in my range. I usually do about 10 minutes on it. It used to be a fairly gentle exercise keeping within that heart rate. Since taking the B-1, I have noticed that it feels like I have to work much harder to get my heart rate up to 100. It feels like I am exercising pretty hard. So something has changes there as well, but I am not sure what.
If anyone has any more advice on building up endurance and avoiding PEM, I would love to hear it.
Lynn
Stopping doing something that causes harm is not giving up - it's being rational and realistic. The fact that exercise can cause harm goes against norms that everyone has absorbed and are even ingrained in sayings like 'hard work never hurt anyone'.
Pacing and resting take a huge amount of willpower, and some people find that dietary changes do too. We are constantly fighting the urge to do more. That is not giving up!
To avoid PEM you need to reduce activity, pace it carefully, go more slowly than you would like to, switch between different types of activity (e.g. from using your arms to using your legs to using your brain), and resting any part of your body - or your brain - when they feel fatigued. It's hard, and it never stops being hard, but it does get a bit more instinctive with time.
Many of us also find that diet and supplements help, and you can find info on these in the relevant forums. I have found that with the right diet and supplements my excess fat has been replaced by muscle, so that I am stronger and can do more.