ana_22 Posted February 3, 2009 Report Share Posted February 3, 2009 hi,just wondering if exercise has made anyones condition & symptoms worse in the longrun. i mean exercise aimed at getting you reconditioned, not going off and running a marathon!thanks Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 3, 2009 Report Share Posted February 3, 2009 This is definitely one of those "in moderation" answers. There are several (not really many good ones) that state that getting rid of the "deconditioned" part helps, but anything much after that can actually make it worse. Dr. Biaggioni at Vanderbilt told me (in response to exactly the same question) "remember, marathon runners are prone to fainting..."I know Pilates is kicking my tail, 30-45 minutes (I am working with a PT twice a week) and I am worthless for the rest of the day: complete stupor, exhaustion, shaking, headache. Some days aren't as bad, yesterday was awful. My worst BP reading was post-exercise (87/80) it has been explained by stopping too suddenly combined with the vasodilation created by the walking. I used to be super-fit (martial arts/ bodybuilding) but I have NEVER been able to maintain sustained aerobic activity (jogging.) I am slowly doing better with the Pilates, I feel stronger, look better, but it hasn't really helped my ANS responses (just like my neuro said) I hate feeling like a blobby noodle.In theory, increased tone and muscle strength should help. I am guessing that we should aim for fit enough to maintain our weight and volume expansion, but not so fit as to drop our BP. Just enough that we FEEL good, but realizing that there will be both good and bad days.Hey, if I can get tone enough to to look good in really tight jeans, I won't need the compression hose! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 3, 2009 Report Share Posted February 3, 2009 It makes me feel worse many times in the short term (i.e. during and immediately after, and sometimes for a few days), but has helped me incredibly in the long term. I worked with a personal trainer for 2 years 2x a week... now I do yoga regularly (not Bikram yoga, as that's done in a very warm room).Nina Quote Link to comment Share on other sites More sharing options...
mkoven Posted February 3, 2009 Report Share Posted February 3, 2009 Let me second the importance of moderation. I have slowly built up to 30 minutes on the treatmill most days, slow speed, steep incline, and lower-body strengthening, and find I ahve more energy generally. but at first, if you do too much, it can wipe you out. I immediately drink a beverage with electrolyes and make sure my heartrate is within ten beats of my baseline before leaving the gym. I don't take my bp cuff, but one could. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 3, 2009 Report Share Posted February 3, 2009 Exercise training and orthostatic intolerance: a paradox?Johannes J van Lieshouthttp://www.pubmedcentral.nih.gov/articlere...i?artid=2343225In patients suffering from pure autonomic failure, cardiovascular reflexes are malfunctioning; the carotid baroreceptor unloading by orthostatic stress is not or is inadequately translated into enhancement of sympathetic vasomotor outflow, leading to orthostatic hypotension with symptomatic cerebral hypoperfusion. By contrast, there are subjects who, when standing, develop symptoms suggestive of cerebral hypoperfusion despite well maintained mean arterial pressure. Related signs are a postural tachycardia and a normal to excessive increase in vascular resistance. This entity is called idiopathic orthostatic intolerance to underscore that we do not know what the defect is ? whether it is deficient peripheral vascular responses, noradrenaline (norepinephrine) transporter deficiency, abnormal baroreflex responses or a reduced blood volume. Notwithstanding fundamental pathophysiological differences, patients with autonomic failure or orthostatic intolerance may benefit from the same therapeutic approach aiming at expanding extracellular fluid and plasma volumes.Improving the aerobic capacity of moderately fit individuals increases the plasma volume and is usually associated with improved orthostatic tolerance (Wieling et al. 2002). The beneficial effect of a training programme in improving orthostatic tolerance was elegantly demonstrated by Allen et al. (1945) in identical twins who fainted on the tilt-board. After a three-week training programme consisting of abdominal and trunk exercises applied to one of them, a subsequent head-up tilt faint could be elicited in the untrained twin only. This observation contrasts to the propensity of highly trained individuals towards a lower tolerance to orthostatic stress than untrained people. ?Trained men can run, but they cannot stand? may be common knowledge but we are still in search for the how and why.......To summarise the present view, orthostatic intolerance in deconditioned subjects is related to hypovolaemia and possibly to cardiac atrophy (Pawelczyk et al. 2001) and to attenuated carotid baroreflex responsiveness and a larger compliance of the heart in the highly fit. The debate as to the effect of physical training on an individual's tolerance to orthostatic stress may come to an end by accepting the existence of an ?optimal level of fitness?, ill-defined as it is, located between the deconditioned and the highly trained state. To advise people who do not easily tolerate standing to exercise seems logical but to what extent they should exercise is less certain (Wieling et al. 2002). Intuitively leg resistance training may reduce venous pooling by increasing muscle tone but e.g. swimming training does not lead to greater orthostatic tolerance than running training (Franke et al. 2003). Tensing the leg muscles attenuates the postural reduction in cerebral perfusion (van Lieshout et al. 2001) and the instructions given to students in military schools to ?walk? in their shoes and to stand on the balls of their feet during parade may also be of relevance to athletes.Where are the crossroads of aerobic fitness and orthostatic intolerance to be found? Given the results of Ogoh et al. (2003) we have to realise that three hours of aerobic training each day is apparently capable of establishing a new operating set point for human cardiovascular function that may be of disadvantage for orthostatic tolerance. Quote Link to comment Share on other sites More sharing options...
futurehope Posted February 3, 2009 Report Share Posted February 3, 2009 hi,just wondering if exercise has made anyones condition & symptoms worse in the longrun. i mean exercise aimed at getting you reconditioned, not going off and running a marathon!thanksFor me:short term - more fatigue, exhaustionlong term - more orthostatic tolerance and ability to do other normal activities for longer periods of timeIt is a fact of life that if you are sedentary you will lose muscle mass and make it even more difficult to move. I am not talking about very ill POTS people who cannot exercise despite numerous attempts, or other severely incapacitated people. To the severely incapacitated ones, I pray good health to you (and please ignore this post as I do not want to offend you).Also, I suggest you mention whatever ideas you have for exercising to your physician before beginning a new regimen. Quote Link to comment Share on other sites More sharing options...
jjb Posted February 3, 2009 Report Share Posted February 3, 2009 hi,just wondering if exercise has made anyones condition & symptoms worse in the longrun. i mean exercise aimed at getting you reconditioned, not going off and running a marathon!thanksI have been reading through this book, Autonomic disorders and came across info specifying leg resistance exercise can help to improve symptoms. I have always found exercise where I have to push off with my legs to be extremely helpful ... but if I have slipped into a "de-conditioned" state I have to gradually get myself into a routine. Otherwise if I push to hard, I will be sick for days. My fave activity is hiking up a steep hill. Otherwise I use a stationary recumbent bike. Quote Link to comment Share on other sites More sharing options...
mkoven Posted February 3, 2009 Report Share Posted February 3, 2009 I'm gradually able to increase speed and decrease incline over time-- and find I react more normally to exercise-- such as sweating profusely when appropriate. There are still moments around my cycle and at the ends of the day when I feel out of breath with a pace that I normally tolerate. Now I just have to keep my joints behaving-- much trigger point and myofascial release. Yesterday I did 2.6/mph at an incline of 8, whereas earlier I had to have an incline of 12-15, but could only go 1.3 mph. Because I wear a hr monitor, I notice that there is a lot of variability day to day in what will raise my hr and how much. I let my hr get as high as 160 and feel okay--again this feels okay, because it's me response to exertion, not just standing. Over time, I can do more before my hr gets that high. ? Walking around outside at a leisurely pace gets me at around 100-110. But standing still is another matter. I have to keep moving. Quote Link to comment Share on other sites More sharing options...
flop Posted February 3, 2009 Report Share Posted February 3, 2009 I agree with the "in moderation" statements. When I first became ill my cardiologist actually told me not to exercise as I was too fit and it was making my BP even lower. (I wouldn't advise anyone to totally stop exercising, just reduce the intensity).Last year I started working with a personal trainer and although I enjoyed the sessions (I am a bit of an adrenaline addict), overall it added to the stress that my body was under and left me feeling more exhausted.Since I stopped working and have been concentrating on my health I have started working with my trainer again. Now we focus on energising exercises, core stability, balance and do only a little cardio and weights. I have also started learning Tai Chi which I am finding really helpful.Flop Quote Link to comment Share on other sites More sharing options...
tsampa Posted February 5, 2009 Report Share Posted February 5, 2009 hi,just wondering if exercise has made anyones condition & symptoms worse in the longrun. i mean exercise aimed at getting you reconditioned, not going off and running a marathon!thanksin short term i'm very tired but in long term i'm feeling better .but if i was in a worst time like now it is very difficult to do sport i'm to much tired but i think i must perserve to do ....for becomming better then some month. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 5, 2009 Report Share Posted February 5, 2009 It is only a problem when I have overdone either other daily activities or overdone exercise. It is a day to day thing to monitor. I also have to be careful like others, when fighting a cold or virus. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted February 6, 2009 Report Share Posted February 6, 2009 Exercisehas kept me from being totally bedridden.now granted, sometimes I feel so badly I don't get to the gym to workout (My workout is finished in 15 minute..mostly lower body except for a pec fly and deltoid exercise) for 3 or 4 weeks. But I try to go 2 times a week, and in good spells, 3 times a week.Its a 90 second car ride down a hill from me.BUT POST exercise i can feel worse if I have over done it and get achy flu like symptoms and or very low BP while resting.But when I saw Grubb in 2001 he agreed my exercise was helping me fight gravity. Now somedays I CAN NOT. Somedays i don't get out of night clothes for three days. But I do consider exercise CRITICAL.Even if it's just leg lifts while stuck in bed.But if you constantly over do it, yes you will be sicker. Start off VERY SLOWLY and check HR...I try to keep mine under 135. If I am breathless or dizzy I will stop and go home. Listen to your body but force it to do something. Especially for bone building in us older women. Quote Link to comment Share on other sites More sharing options...
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