In my first two years of illness, I was more mildly ill and able to exercise regularly which I love. Big mistake though. I'm pretty sure it's what caused me to go downhill the 3rd year of illness. Am coming out of that now and being much more careful this time round. Please be very cautious M Paine.
Getting back into exercise (Running)
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ghosalb
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there is one more thread started today about a research paper about physiological effects of exercise on CFS patients.....I don't see any good effects...mostly bad.
I used to be a 7...then 6....then 5......eventually 2. I did sports thruout because it was addictive. But now I wish I stopped long ago. Today I am so happy when I can just walk for decent amount of time.
I used to be a 7...then 6....then 5......eventually 2. I did sports thruout because it was addictive. But now I wish I stopped long ago. Today I am so happy when I can just walk for decent amount of time.
panckage
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Please mention this stuff! Most people are good on this forum but there are a few bullies here. Its important that we be able to share our experiences so we can help each other
*GG*
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I had my CPET testing done with Betsy Keller in Ithaca, NY. I think they found I was at 60%.
I was around the time when the whole XMRV thing was going down as well.
GG
What rang true for me was quite the opposite of being obsessive of pursing running, it was not realizing at the time that it was actually making me worse long term. Running is a drug. I did not experience PEM for 6 years of having M.E.until I started to feel improved enough to start running again. This was also when my cognitive issues started which wasn't much of problem before.
I'm not sure what you mean by 'invisible threshold". Is this another form of denying all the literature that high intensity aerobic exercise in contradicted for M.E? Did you watch the whole video I posted?
There was nothing that helped me improve back then, it was spontaneous improvement that fooled me into thinking I was recovering.
'Has anyone else managed to get into careful exercise?'
I have kept up my gardening throughout 10 years of illness - some patches worse than others, and so the amount of gardening has varied. I garden on a hill, and some of it is surprisingly physical (e.g. emptying the compost bin, cutting things back), though I do employ someone to do the heaviest bits. I think it's helped with my basic strength and flexibility.
I have also managed to come and go from a performing dance/theatre group for people with disabilities doing mostly dance work. Over 10 years I have been in and out 3 times depending on how things are going for me. Currently I am in, and the person who leads has a daughter with ME and is very understanding - I can come late to the practice, and miss if I need to. There is a lot of sitting down and watching other people, so frequent breaks. Some weeks I have PEM and some I don't - hard to keep track of that one I admit and know why, but having a quiet 48 hrs before and following does help. That one's harder in the gardening season.
I am 63 yrs old now, so don't know how long I will manage with the group, but we have a man with Downs Syndrome who is almost 75 in the group and he's still going! Also a woman of 85 who just stays for about an hour.
I have kept up my gardening throughout 10 years of illness - some patches worse than others, and so the amount of gardening has varied. I garden on a hill, and some of it is surprisingly physical (e.g. emptying the compost bin, cutting things back), though I do employ someone to do the heaviest bits. I think it's helped with my basic strength and flexibility.
I have also managed to come and go from a performing dance/theatre group for people with disabilities doing mostly dance work. Over 10 years I have been in and out 3 times depending on how things are going for me. Currently I am in, and the person who leads has a daughter with ME and is very understanding - I can come late to the practice, and miss if I need to. There is a lot of sitting down and watching other people, so frequent breaks. Some weeks I have PEM and some I don't - hard to keep track of that one I admit and know why, but having a quiet 48 hrs before and following does help. That one's harder in the gardening season.
I am 63 yrs old now, so don't know how long I will manage with the group, but we have a man with Downs Syndrome who is almost 75 in the group and he's still going! Also a woman of 85 who just stays for about an hour.
ScottTriGuy
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Unusual to have ME for 6 years without PEM. What ME symptoms did you have? And then why did you keep running if it was making you sicker?
"Invisible threshold" is my personal term for the amount of exertion (the threshold) that I can do before triggering exertional malaise (I feel the malaise during exertion, if the exertion is too much). For example, yesterday I walked 45 mins on flat ground, no problems. If it had of been hilly, the extra exertion of going up hill would have put me over my exertion threshold. Its invisible because I can't see the threshold, only feel it.
I never mentioned high intensity. I shared that I started by implementing 15 seconds of jogging every 5 minutes during a 60 minute walk. Obviously low intensity.
We are all n=1. Hope you find what works for you and will share that too.
ScottTriGuy
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@M Paine
Keep in mind reports on here are biased because few healthy people hang out here.
I can also see from replies how important it is to listen to your body. If not, you can get worse.
The corollary is true too: You can't get better without listening to your body. And part of that includes finding your own limits (or thresholds
).
Good luck with your recovery!
Keep in mind reports on here are biased because few healthy people hang out here.
I can also see from replies how important it is to listen to your body. If not, you can get worse.
The corollary is true too: You can't get better without listening to your body. And part of that includes finding your own limits (or thresholds
).Good luck with your recovery!
I was diagnosed by an M.E specialist back in 1992 as having atypical M.E. I had a sudden viral onset and was vaccinated several times soon after the onset. I was advised not to exercise by my doctor, but when I started improving I was so happy to be able to run again I just kept doing it over and over again. Everything he advised me went right out the window! This was back in the late 1990's. I didn't have the internet to educate myself what the consequences were. I did not understand why I felt so terrible 16-18hrs after running but would eventually recover, so I assumed this was ok.
I am able to power walk now a couple of times a week for an hour. I do not miss running- done- finished with it. I don't experience PEM because I have found my 'energy envelop" and feel good the next day after my power walk. I don't advocate this for anyone though, it took me a long time to figure out what works for me.
I don't feel malaise during exercise unless my immune system is reacting to something, virus, allergies etc. I experience post exertional distress which comes on the next day, or for some, a couple days or week after over doing.
Most of us here can't see the threshold until the next day, week etc it just creeps up on us, and that is the distinctive element of this illness.
Glad you can get out and walk, but if you are experiencing pay back, you might want to consider doing less more often until you feel ok.
ScottTriGuy
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Good observation. I find it best to avoid those that are always right, on every topic.
BurnA
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For those who are engaging in exercise, does your heart rate go higher than you would expect or is it the same as before you got ME ? Before I got sick I was very fit so my heart rate was low ( 40s) and even under mild exercise would stay relatively low. I could cycle long distance with average heart rate of 140bpm. Now a brisk walk brings my heart rate to 130bpm which will result in PEM.
When I walk I have to walk very slowly to keep it around 100 -110or so. Recently my average no of steps is about 4000 a day. Physically I can walk faster or further than I do but I know I will get PEM if I do so I don't.
For those of you who were active prior to ME do you ever associate exercise with onset ?
If so there is a separate thread for this here.
When I walk I have to walk very slowly to keep it around 100 -110or so. Recently my average no of steps is about 4000 a day. Physically I can walk faster or further than I do but I know I will get PEM if I do so I don't.
For those of you who were active prior to ME do you ever associate exercise with onset ?
If so there is a separate thread for this here.
M Paine
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I'm interested to know more about people's bad experiences too. Is, or was your exercise intense, moderate, mild? What was your routine? Did you experience PEM, or manage to avoid it?
My story is that I had been having issues with fatigue for many years, along with a range of other CFS related symptoms, but for the purpose of staying on topic I won't go into that.
As per the normal advice for anyone looking to improve their energy levels, I took up lifestyle changes like eating better, and taking up more exercise. I swam once or twice a week for many years, experiencing PEM semi-regularly, usually after intense swimming sessions, or other particularly stressful events. I later took up running perhaps once or twice a week.
Over the years, I noticed that my fitness progression was slower than some of my friends who did similar levels of exercise, however through perseverance and even harder work I managed to progress past them. I won't lie, I'm a competitive person. I was improving over time. I was the healthiest, leanest, and fittest I have ever been.
I stepped up my training schedule earlier this year, and because I was exercising more frequently, I would more often exercise while in the midst of PEM. I didn't know at the time that how detrimental that was going to be, I took the no pain, no gain approach to fitness.
Eventually I started to encounter new CFS symptoms which I had not previously suffered from, and that lead me to obtaining a diagnosis for ME/CFS.
After a crash unlike anything I've experienced, I'm now out of the woods it seems. It's been an exercise in itself to stop myself from exercising. I think some of you will relate to being very driven when it comes to fitness. However I don't think I would be where I am now, had I not spent many hours resting, bored stiff, even when I felt well enough not to be.
I hope that exercise can be a positive thing, when done cautiously. In the short time I've been feeling comparatively well again, the times which I have exercised and managed to keep below my threshold have been followed by deep, restful sleep, and subsequent days of elevated mood and sense of well being. Unfortunately as I mentioned in my original post, the opposite has also recently occurred where I have crossed my own boundaries.
I hope more people will share their stories in more detail
My story is that I had been having issues with fatigue for many years, along with a range of other CFS related symptoms, but for the purpose of staying on topic I won't go into that.
As per the normal advice for anyone looking to improve their energy levels, I took up lifestyle changes like eating better, and taking up more exercise. I swam once or twice a week for many years, experiencing PEM semi-regularly, usually after intense swimming sessions, or other particularly stressful events. I later took up running perhaps once or twice a week.
Over the years, I noticed that my fitness progression was slower than some of my friends who did similar levels of exercise, however through perseverance and even harder work I managed to progress past them. I won't lie, I'm a competitive person. I was improving over time. I was the healthiest, leanest, and fittest I have ever been.
I stepped up my training schedule earlier this year, and because I was exercising more frequently, I would more often exercise while in the midst of PEM. I didn't know at the time that how detrimental that was going to be, I took the no pain, no gain approach to fitness.
Eventually I started to encounter new CFS symptoms which I had not previously suffered from, and that lead me to obtaining a diagnosis for ME/CFS.
After a crash unlike anything I've experienced, I'm now out of the woods it seems. It's been an exercise in itself to stop myself from exercising. I think some of you will relate to being very driven when it comes to fitness. However I don't think I would be where I am now, had I not spent many hours resting, bored stiff, even when I felt well enough not to be.
I hope that exercise can be a positive thing, when done cautiously. In the short time I've been feeling comparatively well again, the times which I have exercised and managed to keep below my threshold have been followed by deep, restful sleep, and subsequent days of elevated mood and sense of well being. Unfortunately as I mentioned in my original post, the opposite has also recently occurred where I have crossed my own boundaries.
I hope more people will share their stories in more detail
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My heart rate will increase a lot quicker if I'm fighting a viral infection(?), so I keep my 'exercise'/activities during that time to a minimum.
I would say my heart rate is in the normal range for a person who is power walking. If I can talk while I'm walking then I feel I'm ok.
I would say my heart rate is in the normal range for a person who is power walking. If I can talk while I'm walking then I feel I'm ok.
Sea
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For those who are not severe (ie they are not pushing themselves into PEM just by the activities of daily living), it is possible to live without experiencing PEM by pacing well and living within your available energy. Just like a diabetic who no longer has high blood sugar because they take insulin and watch their diet carefully, it doesn't change the fact you still have the illness.
I don't think many patients achieve that because most of us fight against the restrictions to some greater or lesser degree. Unlike the psychs characterisation of us as people who are afraid of exercise I think most of us are chafing at the bit to do more than we are able to. It takes wisdom to make the decision to live within our restrictions.
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I just bought Garmin Vivosmart HR. The best thing about it is 24/7 heart rate measurement. I plan to use it to avoid PEM, see if there is changes in HR before PEM and also to track that I get enough deep sleep.
M Paine
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Thanks @Doublepush, that Garmin looks really great.
Another one which has caught my eye from the Facebook Group posted earlier is the Polar A360
And also empatica seem to do wrist monitors that measure additional health statistics as well, which can also help people who suffer from seizures, pretty neat https://www.empatica.com/index
Another one which has caught my eye from the Facebook Group posted earlier is the Polar A360
And also empatica seem to do wrist monitors that measure additional health statistics as well, which can also help people who suffer from seizures, pretty neat https://www.empatica.com/index
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panckage
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For me, my heart stays lower than it should be for exercise. If I push myself too much I feel like I'm going to pass out.
OTOH if I take ritalin my heart rate goes up to near normal and I can exercise fairly normally for 30mins or so
@M Paine Exercise w CFS is an art if you still have cfs. Is very long to explain but I will give you a short version if you are still interesting and want more detail let me know
1) Find your AT by test if not do it by the formula (google it).
2) You have to start and increase every 2 weeks if you DO NOT get any additional Symptoms. start with 3sets with 3 rest sets sets in the middle. Example mine were (5min on, 5 min laying down ) 3 times, add a set every 2 weeks. Stay under your AT all first days. When you are stable you can stay in the AT and increase a few points BPM(that will be mooooonths in) then increase very slowly.
3) Start vertical before going horizontal: recumbent bike, Swimming, rowing?!!!. The idea is not to fight gravity at the beginning to avoid bad OI.
4) You can increase duration every 2 weeks after you complete going up in sets.
5) when relapse you start all over.
6) if you crash or have symptoms go back to the intensity that you were that did not give you symptoms.
7) on bad days (like if u get a cold or other virus / sickness) pause and restart low and slow.
I hope this tips helps.
1) Find your AT by test if not do it by the formula (google it).
2) You have to start and increase every 2 weeks if you DO NOT get any additional Symptoms. start with 3sets with 3 rest sets sets in the middle. Example mine were (5min on, 5 min laying down ) 3 times, add a set every 2 weeks. Stay under your AT all first days. When you are stable you can stay in the AT and increase a few points BPM(that will be mooooonths in) then increase very slowly.
3) Start vertical before going horizontal: recumbent bike, Swimming, rowing?!!!. The idea is not to fight gravity at the beginning to avoid bad OI.
4) You can increase duration every 2 weeks after you complete going up in sets.
5) when relapse you start all over.
6) if you crash or have symptoms go back to the intensity that you were that did not give you symptoms.
7) on bad days (like if u get a cold or other virus / sickness) pause and restart low and slow.
I hope this tips helps.