Akgirl Posted July 17, 2013 Report Share Posted July 17, 2013 I have been going to pt and the minute I start getting fatigued I begin to faint and get really spacey and brain foggy. I have been sick with this flare up for about 8 months now so I really need to get my muscles back!! It's so frustrating because its feels nearly impossible. I was wondering if anyone else has had any experiences like this? So far I can only stay in one position because if I turn from side to side or go up a d down it makes things much worse! Quote Link to comment Share on other sites More sharing options...
corina Posted July 18, 2013 Report Share Posted July 18, 2013 What works for me is to avoid getting symptomatic. It means I can't do much but I've learned that (since I'm on octreotide) I can build stamina. When I cross my boundaries I get in trouble which for me means that I have to recover for days. When at rehab I exercized walking (standing), biking (sitting) and floor (lying). Hope this helps! Quote Link to comment Share on other sites More sharing options...
TCP Posted July 18, 2013 Report Share Posted July 18, 2013 I don't exercise because it makes my symptoms worse and having ME means I'm exercise intolerant. My HR surges and my breathing and BP go haywire. I feel very sick and weak, so I know my limits. Recovery takes so long that I keep mobile but don't exercise. Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted July 19, 2013 Report Share Posted July 19, 2013 I'm sorry you're having such a tough time. I too have been unable to exercise for quite a while. I get dizzy and out of breath an my heart races all day. But I agree that you have to pace yourself, do whatever, alittle at a time. In whatever position is comfortable for now. Start below what makes you tired. Work yourself up. I was doing that and then I had these other problems and my whole exercise program fell apart, so I'm trying to start all over again, even five minutes on the bike, or lifting your legs while lying down. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted July 19, 2013 Author Report Share Posted July 19, 2013 That's kinda where I am now!! I am at about 2 minutes before I start to faint. Currently I haven't even made it off my back. I am just working with my PT with Thera bands on resistance on my legs. Yeesh!! It's just so hard when everything I google and read and everyone else seems to be able to exersize for 20 minutes minutes at a go!!!!! IN MY DREAMS Sorry about the rant I am just a tad bit jealous. Quote Link to comment Share on other sites More sharing options...
corina Posted July 19, 2013 Report Share Posted July 19, 2013 I'm sorry AKgirl, I didn't realize it took only two minutes for you to start fainting! Before I was on my best working combo so far, I tried exercizing but couldn't do it at all. It took several attempts for me to realize that it just wasn't for me at the time. I hope that in time you will make progress! Quote Link to comment Share on other sites More sharing options...
clairc Posted July 19, 2013 Report Share Posted July 19, 2013 I can't exercise either. Walking makes my joint pain flare up, cycling kills my knee, I can't do a recumbent bike because of my hips and swimming puts me in bed for two days. It is frustrating because I want to improve my strength and fitness but it only makes things worse. I feel like I'm in a catch 22 because everyone says I must exercise to get better but every time I try I end up being able to do less than before.One thing I have started doing it Pilates with a private instructor. I am able to do some of the level 1 exercises and it doesn't affect me like other forms of exercise. I am lucky to have a great instructor who is also a physio and she adapts any exercises that I struggle with. It does make me feel a little light headed sometimes as it's all done on the floor but last time I used a wedge so I was more uprigth and that felt better for me. Maybe it's something you could look into? Quote Link to comment Share on other sites More sharing options...
Freaked Posted July 19, 2013 Report Share Posted July 19, 2013 Last time I exercised consistently I started getting increased skipped beats, which may have actually just been a sign that my heart rate was slowing, but that freaked me out enough to stop until I get proper guidance. Now I'm pretty bad with it. I did surprise myself when I was wearing an event monitor though. I managed to stand up and walk around for half an hour, twice, without fainting or losing my vision much or anything. Then some days I can't walk two steps. Can be quite unpredictable. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 19, 2013 Report Share Posted July 19, 2013 I could not tolerate any exercise beyond walking for about 5-12 minutes, depending on the day. I finally said to HECK with this!! I don't need to do formal exercise, I already get my heart rate up just being upright. So, I started using those 5 minutes here and there and did actual housework. Or, I helped my husband with our business doing light-duty work. I decided if I was going to "exercise" my system, I was going to be doing something productive. Afterall, what do I gain from walking or riding a bike? Nothing. I decided I was going to get a meal cooked in 10 minutes here or there. I was going to get my sheets washed early in the day, and the bed re-made later in the day. After doing things like this, I have slowly built up more stamina and can "work" around our business or house for an hour or two. I do incorporate sitting within that time frame for 10 minutes here and there, but I get alot done. After sitting for 7 years, this is a great boost for me. It's like my cardiovascular system quit freaking out right away like it used to, but I do still reach a point where I know I've reached my limit. Strange, but that point shows up for me when I feel alot of pressure in my lower chest/upper abdomen. I guess maybe pooling, I have no idea. Quote Link to comment Share on other sites More sharing options...
volo Posted July 19, 2013 Report Share Posted July 19, 2013 I'm sorry you are having such a tough time. Just consistently doing what you can with exercise or even just with moving and/or doing things, and trying not to overdo it, is what worked for me. Maybe what you can do at PT before you become fatigued is a starting point. When I started, I felt like what I was able to do couldn't possibly make a difference in my fitness. Well, it probably didn't make a difference in my fitness, but it was a starting point for slowly building up more stamina and it did eventually lead to me being able to do things that do affect my fitness. I hope it will be the same for you. Over a period of 6 months, I was able to slowly build up from exercising in bed by lifting my arms and legs (first without weights and then with weights), to a minute on the recumbent bike at low resistance, to now being able to really exercise. When I overdid it, I'd have several days where I couldn't do anything. I learned my boundaries and slowly built from there. The starting point, the time frame and where one gets to, may be different for everyone and some here have said they benefitted by "pushing through" even when exercise made them feel worse. However, I rested when activity made me feel worse, rather than pushing through. That resting, learning my boundaries, and consistently doing what I could do without making symptoms worse and *very* slowly building up from there, worked for me. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted July 19, 2013 Author Report Share Posted July 19, 2013 Wow!!! Is so comforting to realize I am not alone in this illness!! I so greatly appreciate your experiences!! Sue1234 I really feel like that is the conclusion I am drawing on my own! Thank you all!!!! Quote Link to comment Share on other sites More sharing options...
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