exercise, heat and compression clothing

[Allyson]

this is just a note and a query

I have noted i feel better sometimes after going to pilates class

i lie on the floor there under the airconditioner for an hour and do all the recumbent exercises

And always wear stretchy clingy clothig to the gym - leggins and singlets

I have noted I feel better too after art class - where i also hog the aircon

in fact i feel better for longer after art class than I do after pilates.

SO just a note to anyone doing/reviewing /citing exercise studies on ME/EDS to consider

- have they or could they please control for these factors as it may be the cool temperature of the gym and the compression clothing that are making any temporary improvement - due to the peripheral vasoconstriction /pressure they cause...... which increases venous blood supply availability for the major organs like heart and brain.
Thanks

 

[golden]

My compression stockings were amazing. They helped mee loads - not exactly sure how...

Until....

My legs just hurt and hurt and at least two weeks I think now I just cant bear them on...

It surely cant be post compression stocking malaise can it ???!! lol

 

[ukxmrv]

I never feel better after exercise. Attending a gym in tight clothing in aircon still leaves me with severe PEM. Makes no difference.

Water is where I do feel some benefit but it must be very cold and deep. Heated or water in a warm climate (like a warm sea) has no effect. Very cold, deep water leaves me feeling almost human and a little stronger but I cannot exercise in it.

 

[Allyson]

I st

I never feel better after exercise. Attending a gym in tight clothing in aircon still leaves me with severe PEM. Makes no difference.

Water is where I do feel some benefit but it must be very cold and deep. Heated or water in a warm climate (like a warm sea) has no effect. Very cold, deep water leaves me feeling almost human and a little stronger but I cannot exercise in it.[/quote

I stress tht i only do RECUMBANT exercis it these classes - standing - esp like yogoa power stances will still make me crash.

THus i mihgt only do half a pilates class - the part lyig down but spend an hour int he aircon

the clothing is not tihgt but comression - like lycra or clingy cotton

aquaa helps a lot of people for th same reasons
Dr D Lewis in his book claims it helps us as it pushes the lymph back into the venous system thus boosting our blood volume

so i just wated to be sure that naone who claims theieecercies was beneficial ahd controlled for thsee 2 factors inthe experiment

exercise boosts blood volume too
too much makes me very ill but i can tolerate soe light recumbant and i do enjoy exercise a lot

 

[ukxmrv]

No I've tried the recumbant stuff as well - pilates, machines, yoga for the "disabled" - still the same PEM

It's only the very cold and deep water that does anything for me sadly. Even then I can't exercise. Just feel better after that sometiems but soon wears off.

 

[Allyson]

No I've tried the recumbant stuff as well - pilates, machines, yoga for the "disabled" - still the same PEM

It's only the very cold and deep water that does anything for me sadly. Even then I can't exercise. Just feel better after that sometiems but soon wears off.

do you use D- ribose?
I stopped it recently after 2 years on it and within weeks all the horrible aches everywhere returned
back on it now - I know it works for me -
I used to ache like that all over all the time

 

[Starfive]

how much ribose and how often? I would love to have some relief from the awful aches in my legs, really bad. Last night I was thinking of even trying to steroids as I heard that can help the pain. My Gp who is now retired told me to buy some D Ribose but I have not really tried it. Any help is much appreciated. Thanks

 

[Allyson]

Hi Starfive


yes d-ribose was like a miracle for me

take i teaspoon 3 times a day for 2 weeks then one teaspoon twice a day

it is just like sugar so i have it in my morning tea and evening cocoa
it took about 3 days to sork for me the - miracle - no muscle aches !!!

i buy it form i herb - 27 dollars per tub
you can buy the same tub here in Australia for 80 dollars !!!!!

it is a natural sugar drived form corn but muscle builders use it
some people with ME it gives more energy
not me but it stopped my aches so i am happy
it does not work for everyone.
best of luck

 

[Allyson]

how much ribose and how often? I would love to have some relief from the awful aches in my legs, really bad. Last night I was thinking of even trying to steroids as I heard that can help the pain. My Gp who is now retired told me to buy some D Ribose but I have not really tried it. Any help is much appreciated. Thanks

I will re-post that D- Ribose info in a separate post as i think it is tragic if everyone does not get to try it
i was SO glad to be finally rid of my muscle aches and in a natural way.

 

[Allyson]

No I've tried the recumbant stuff as well - pilates, machines, yoga for the "disabled" - still the same PEM

It's only the very cold and deep water that does anything for me sadly. Even then I can't exercise. Just feel better after that sometiems but soon wears off.

interestign that a deep cold pool helps you X - alistair Lynch is very famous here as a football player and he has ME - he wrote a book about it and said Barry sheehan - the also famous motor cycle rider now deceased, who also had it - used to have deep cold baths with him and it hellped them both.
I also noteed in hsi book he hasd severe relapses when he 1 travelled a lot by plane - eg brisbane to parth for weekly matches and back
and in 2 very hot weather spells - so say over 35 celsus every day
all of these are compatible with EDS stcthy viens theory as the heat and high altitude vasodialate - plus pward posture in a plane wiht mo movement for hours is bad
and cold vasoconsticts and deep water forces lymph back into the venous system where it boosts bolld volume
Onn the opposite
I know for sure if i got out even briefly on say a 38 degree day i will have a total meltdown within 20 minutes - as happenend recently - fine lying down at home a quick trip to the GPs and i was like a nervous wreck by the time i got there- fine again after a cool bath at home.

 

[L'engle]

There have been threads on this forum about people doing better in colder weather or from immersing in cold water. It seems to be common to many of us. I feel bettwr in hot weather if I can go to a creek or the ocean and wade in for a few minutes.

 

[Sherlock]

Here's something that I experienced a few weeks ago, during a time when I'd been ramping up the weightlifting. I woke up in the middle of the night (as usual), but my muscles were feeling really bad. This was unusual for me, and the first time that it was to such a degree. It was as if muscles were torn and super-tired and almost burning. I did think, "this must be what the people with CFS feel like when they complain about bad post-exercise results".

I tossed and turned for a few hours and it got no better. So, I decided to try an experiment and I started dosing myself with baking soda in water. The principle involved neutralizing intra-muscular lactic acid. Well, it worked (for whatever reason) - and rather quickly at maybe 2-3 hours.

Since I saw this exercise thread just now, I decided to pass this on - you never know who it might help.

 

[Allyson]

strange sherlock i take sodi bic in water t often for gastric reflux but lately have been trying nexium so have stopped it

- i wonder if that is why my muscle aches are recurring rather than stopping d- ribose - though d ribose definitely helped

do you not normally get post-exertional muscle pain and malaise?

 

[taniaaust1]

No I've tried the recumbant stuff as well - pilates, machines, yoga for the "disabled" - still the same PEM

It's only the very cold and deep water that does anything for me sadly. Even then I can't exercise. Just feel better after that sometiems but soon wears off.

Same here.. I have issues with recumbant exercise too... any kind of "repetitive exercise" or on feet exercise affects me negatively.

Cold air con thou certainly does help (I nowdays keep my house so cold that others on entering it will complain its too cold and go and put a jumper on).. its getting warm with exercise that is also a big issue for me. I cant get warm as as soon as I do.. Im not as well.

 

[Allyson]

Same here.. I have issues with recumbant exercise too... any kind of "repetitive exercise" or on feet exercise affects me negatively.

Cold air con thou certainly does help (I nowdays keep my house so cold that others on entering it will complain its too cold and go and put a jumper on).. its getting warm with exercise that is also a big issue for me. I cant get warm as as soon as I do.. Im not as well.

i always have to be right near the aircon or fan - or both in the gym to survive a class too Tania.

 

[Allyson]

There have been threads on this forum about people doing better in colder weather or from immersing in cold water. It seems to be common to many of us. I feel bettwr in hot weather if I can go to a creek or the ocean and wade in for a few minutes.

yes it seem to be common L'engel and I think it is to do with vasoconstriction imporving our blood supply an d vice versa see this thread if you have not already for more on that topic and some more tips tht may help http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/#post-310872

 

[ukxmrv]

I tried the baking soda in water to see if I helped with PEM after exercise but for me it made no difference.
Also tried D-Ribose but even at one scoop it left me shaky and the PEM was the same.

Always assumed that the cold water was vacoconstriction. Cold baths aren't enough. Needs to be a deep immersion for me. There's a rich PWME I know who has installed a cold water pool in his home for that reason.

Neither of us can increase our exercise though sadly.

 

[Allyson]

try the d ribose after a protein meal x -
it is just like sugar - on an empty stomach it may affect your sugar levels but taken after a protein meal or snack I so not get the shakes
it takes at least 2 weeks to workd for most and it does not help PEM - just th muscle aches for me and gives some people more energy

 

[baccarat]

d-ribose although is a sugar it's hypoglycemic, it actually lowers blood sugar. If anybody suffers from hypoglycemia you must take it with something that brings up your blood sugar level. I found that out the hard way years ago when I used to take it.
For anybody who suffers from pem or adrenal insufficiency using ribose long-term might make things worse, much worse (short term you definitely get an energy boost) which again I found that out the hard way.

As a former cyclist, I can relate to the cold/warm weather issue. In cooler weather, endurance is always higher than in warmer weather. It's just not a question of perspiration and hydration but also of adrenal function. The cold is more supportive of adrenal function and stamina.
Regarding the diversity of response to exercise it just goes to show how useless the current way of diagnosing ME is.

 

[Sherlock]

strange sherlock i take sodi bic in water t often for gastric reflux but lately have been trying nexium so have stopped it

- i wonder if that is why my muscle aches are recurring rather than stopping d- ribose - though d ribose definitely helped

do you not normally get post-exertional muscle pain and malaise?

I did in the beginning, which was a year or more before I'd even considered that I had CFS.

After exercise, I would pay the price for one or two days afterward. Then I'd do it all over again. These days, I can do pretty much anything - except for those rare occasions when it catches up to me, which is now and I'm thinking that maybe some allergy or virus cold puts me is a state where I shouldn't exercise until that passes.

These days, I see people here talking about starting out with 10 or 20 minutes. But I started with 30 or 40 seconds. Of weightlifting. E.g., one set of deads, then I'd stagger to the couch to collapse there and catch my breath. (I suppose I had the intuitive sense that doing any kind of aerobic activity would only result in more of a buildup of whatever bad biochemicals that would keep me down.) If I wasn't up to doing deadlifts, then I'd do one set of dumbbell curls instead which was much less taxing.

Sometimes now, every 2 months or so, I get a period where just normal weightlifting gives DOMS and very slow recovery afterward. During the exercise I feel as if my muscles just aren't working right.

These past months, I've had for the first time bad tendon injuries (mostly in my fingers), and I'm trying to see if baking soda helps with that.