exercise, heat and compression clothing

[Sherlock]

I tried the baking soda in water to see if I helped with PEM after exercise but for me it made no difference

Hi, did you test with urine pH strips? I've been finding that sometimes it takes a lot to get the color to move to the blue end, much more than usual. (Always on an empty stomach, of course.)

Then the next day, things will respond normally. It seems as if sometimes I get a real buildup of acidity that needs to be tamped down.

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.

Do you get that crushing feeling of pressure in the chest during cold immersion? I don't know how that might relate, but I do think that I might get it more strongly than average.

Neither of us can increase our exercise though sadly.

Have you alternately tried lots of antioxidants beforehand? Or anti-inflammatories?

 

[Sherlock]

Btw, a warning on baking soda: it's well known that too much gives a laxative effect. Come to think of it, if a person never got that effect, then that might be a good sign that you didn't have enough.

 

[Sherlock]

d-ribose although is a sugar it's hypoglycemic, it actually lowers blood sugar.

Interesting, which would explain the shakes that others reported in this thread (adrenalin release to raise blood glucose)

As to mechanism:

The effect of D-ribose (ribose) on insulin secretion and plasma glucose has been
investigated since 1957... the blood glucose lowering effect of ribose appears to result from a combination of factors including indirect stimulation of pancreatic insulin secretion, stimulation of humoral effectors causing secretion of minor, but important, amounts of insulin from tissues in the hepatic-portal pathway, and delayed glucose recruitment in the liver, likely due to competition for phosphoglucomutase activity.

http://www.bioenergy.com/pdf/mf/sl/Ribose & Blood Sugar/Ribose_Blood Sugar_Science 070303.pdf

So that explains why people take it for energy during exercise, and better energy-recovery after. But why would it help prevent muscle soreness?

 

[Allyson]

thansk sherlock, yes tendons and ligaments are connective tiisue too so anyone with EDS or CTDs is prone to damage there as well

 

[Allyson]

thanks bacca

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.

thanks baccarat
yes i notice nonw for league footaballers they are putting them in refrigerated units in game breaks so the cold must do something - or stopping the heat . Not sure how it works just read a passing reference to it and found it interesting as the old thery was to stay warm to keep your muscles warma dn prevent muscle injures - the cold myust improve perfomance or they wouldn't be doing it.

 

[lastgasp]

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

Ugh, you're kidding. Lying down makes NO difference at all to the effect of muscle activity (or cognitive or sensory input) in ME. ME is partly a muscle disease not simply an orthostatic problem.

It really annoys me that there are some CFS "experts" now telling people exercise is okay as long as we lie down. So now we're hearing people saying they exercised lying down and couldn't understand why they relapsed.

Same with art. Repeated muscle activity, even if individually very small, together with loss of fine motor control and cognitive problems = exacrbation. Some people it's within their ability tho.

I'd be working from bed if none of that was true!

And cool temperatre makes little difference, I usually feel sicker in winter or in a current of cool air and may or may not slightly improve in mild summer days. Sometimes i've felt sicker when it's very hot, other times I even felt it helped while it lasted.

But just staying upright enuff to travel + sensory overload + communication would be unsafe for me without a severe pressing reason nowadays.

 

[lastgasp]

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.

How on earth did you get food, go to the bathroom, fetch your mail, deal with emergencies if you rigidly kept to 40 seconds, which you instead spent on an unnessential activity of lifting an object that had no other purpose?

From where else did you "steal" the forty seconds from? If I spent 40s lifting a weight I'd have to spend at least 40s less time here, probably much more because the weight is the bigger impact. This is something that the GET/GA people need to understand. With ME, the total energy pool really is finite because it's not deconditioning that's pressing down on the sufferer, it's the disease process. And what if you spend 10s longer eating or something one day, I find it hard t believe people can conform to each second of the clock.

Was the bad effect DOMS only or something else (such as severe spinal pain, feeling feverish or chilled, feeling fluey, profoundly intense toxic feeling, temporary paralysis, loss of cognitive ability, even worse stuff I can't think of right now?)

Did you have transient paralysis at all, i.e. sometimes you couldn't move? Do symptoms fluctuate markedly within a day? Do you have fasciculations, myclonus, clumsiness?.

If you have ME, guess what, your muscles aren't working right!

 

[lastgasp]

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.

Well partly, you only covered muscle problems and said they were "almost" burning
Muscle pain in ME might be due to tearing as well as lactic acidosis.

Although often the only muscle limitation in late stage ME is weakness. You've got all the general, multi-systemic symptoms I mentioned in the other post as well and a lot more besides. And while it's taking a very long time to improve (if it does) you're at increased risk of compounding it.

 

[taniaaust1]

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.

D-Ribose doesnt do anything for me either. (I hope I havent already said that).

 

[taniaaust1]

How on earth did you get food, go to the bathroom, fetch your mail, deal with emergencies if you rigidly kept to 40 seconds, which you instead spent on an unnessential activity of lifting an object that had no other purpose?

From where else did you "steal" the forty seconds from? If I spent 40s lifting a weight I'd have to spend at least 40s less time here, probably much more because the weight is the bigger impact. This is something that the GET/GA people need to understand. With ME, the total energy pool really is finite because it's not deconditioning that's pressing down on the sufferer, it's the disease process. And what if you spend 10s longer eating or something one day, I find it hard t believe people can conform to each second of the clock.

I think its all about choice.. spending 40 seconds doing a weight routine could be more worthy to many then spending 40 seconds here. My body became VERY WEAK at one point cause my muscles etc had gone so long without being able to be used properly (eg bedridden for much of the time)... the result of that was I hurt my back just picking up a wee thing from the ground due to my then weakened back muscles. That then resulted in me having to be in hospital for a week (I discharged myself after a week, doctor wanted me in longer) as I couldnt even mov my back slightly (without screaming in pain and passing out in pain). I dont think you should knock someone for doing bouts of 40 second weight training exercises.. If I had done even a short time like that each day. my back muscles probably wouldnt have become so weak and I wouldnt have injured myself due to that.

With the very sick and those who muscles can be a big issue. even just going 10 seconds over ones limit CAN cause issues. I know going 10 seconds over my limit if Im scrubbing clothes in a laundry trough with my arms.. can then end up causing me pain for hours (and can affect my arms into the next day). I reach my point where I should stop scrubbing about 40-45 seconds and 10 more seconds can make a huge difference on my outcome of whether I will have after effects or not. ( I can thou scub "ok" (its still challenging!!) for 60 seconds if I take a small break ..usually I need several small breaks towards the end of that time eg 6-20 seconds in that 1 min period).

 

[rosie26]

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.

Hi Baccarat

Can you tell me what might get worse ? when taking D Ribose long-term. Are you meaning hypoglycemic problems. ?

You said anyone who suffers from pem or adrenal insufficiency using ribose long-term might make things worse.

I would be interested to know what you mean as I take D Ribose. Thanks.