My exercise program

[Jody]

This may be a bit different from what you've seen before.

But it has worked for me in the past and I know if I get consistent with it again it will work for me again.

Haven't been doing any exercising with any regularity for some time.

I have access to my daughter's car most of the time so I don't do nearly the amount of walking I used to. I need to change that again and get walking.

But today the focus is on ... my weight-lifting program.

I have to start everything very small if I want it to work. And exercise is no exception.

Today I got out my 3.5 lb weights, and did -- count 'em! -- 1 curl, 1 raise from the side, 1 from the front, and 1 from the back.

That's it for now.

My shoulders and elbows are crappy these days (in part from doing too much knitting over the winter and in part from doing way too much typing since April.) So I have to be VERY careful or they really break down badly.

So, today, I lifted weights. Tomorrow I see whether my shoulders, elbows, wrists, hands or neck are traumatized. If not, I may do it all again. If they are, I will wait until they are better ... and do it again.

Sounds quite paltry and it is. And apparently that is why it works for me. I have started this way before and over time worked up to 2 half hour walks, morning and evening, a half hour of exercise including some pilates and yoga, and a half hour of weights every other day.

I've had to do this startover more than once because I've had a few crashes over the years. But they weren't precipitated from my bunny-slope of exercise increases, it was other factors. After 2 months of no activity though, I'd have to start again.

Like today.

 

[Angel]

Exercise program

Hi Jody:
Congrats on beginning your new exercise program. Your exercise design is exactly as my Pain Management and Injury Doctor (DO) would recommend for starting a program.
Throughout my ME/CFS years, I have reached what I felt was a normal exercise program about 5 times, maybe 30 minutes of walking a day, and lifting weights for 10 reps, etc., only to crash a few weeks later. I couldn't sustain it because it was too much.
It is very difficult to find that fine line between what you want to accomplish and what your body can handle.
After the crashes I would need a month or two of rest without any exercise before I could start again.
then he would recommend beginning again with 5 minutes of walking, or one lap in the pool. Skip a day to be sure the body is in agreement, and do it again on the third day. If after you have done it 3 times without a problem, then increase by one rep, or another minute or two.
for me the trick was not to do things two days in a row, in the beginning, and not to skip the exercise either. If I skipped a few days, I had to start over at the beginning.
After my last car accident I gained many pounds. Of course the inactivity slowed down my metabolism. Unfortunately they say the only way to increase your metabolism and to lose the weight is by exercise. Not easy with ME/CFS.
For now, I am doing great, which means the most exercise I've been able to sustain for the last 6 years, and minimal problems from it. I have managed to lose 9 pounds in the last 2 months, but not by cutting calories.
For me, I believe that exercising regularly is the most difficult accomplishment requiring my discipline.
I was wondering if there was another exercise that you could think of that would exercise your legs on the days that you are resting your arms. Maybe a 3 minute walk to start.
Also, in the summertime, it is a good time to get into the pool and let the water take off some of the strain. Many of my friends walk in the water, or do a few leg lifts in the water. My exercise is swimming the breast stroke in slow motion, or treading water for a few minutes.
Are you keeping a chart to help remember where you started and to track your progress?
Keep it up!

 

[Jody]

Angel,

I see we are on the same page about some things.

You asked about leg exercises, and there are a few I do. Squats are good -- actually, I do Sissy Squats as my knees are easily damaged and they can't take a lot of strain. You can do them by either standing by an open door and taking the doorknob on one side by one hand, and the doorknob on the other side by the other hand. That seems to help the knees. Then, ... squat.

Or you can do them with your hands braced against your upper legs, and only squat as far as feels comfortable. Especially starting out it doesn't take much to make a difference.

A variation on the squat involves holding 2 light dumbbells with arms hanging down. With feet spread apart, and turned slightly outward (helps the knees), slowly squat down, bending forward with the weights hanging down, till the weights touch the floor. Hold a few seconds, and come slowly up.

There's an exercise with a light dumb bell that is especially good for the back of your legs and your butt. Lie on your face across the bed, with the weight held between your ankles. Keeping your upper legs on the bed, lift your lower legs with the dumbbell, as far as is comfortable. Hold for a few seconds, again as long as is comfortable, and lower. Easy to do, and you can lay there and recuperate for a bit after you're done, if you feel the need.

Been awhile so that's all I can recall for the moment but those are ones I'd do regularly. I'll let you know if I remember others.

Swimming is wonderful for those with access to water. I haven't had the pleasure too often but it is great.

I kept a chart at one time. It was all so basic for a long time I haven't need to. But at one time I needed it because I was doing different muscle groups different days.

Angel, I wonder if you could put extra white space between your paragraphs? I still have issues with my vision and it would make it easier for me to read.

 

[Angel]

exercise

Hi Jody:

I'll try to remember the extra space.

Squats don't go well for me. They make me feel injured. The Dr does have me do a clam shell exercise.

I guess because of the swimming and walking I don't do any other leg exercises. Doing one or the other of those two is all they can handle. The swimming is almost always the frog kick. It's not without problems, but the longer I stick to it, the better it is, meaning less pain during, and after the swimming.

When I'm doing really well I go dancing, but need to rest inbetween dances, and it's best if I don't do the same type of dance all night. Variety works best.

I also cannot swim or walk during the day if I'm going dancing at night, or my legs won't let me dance. Oddly enough sometimes a slow dance is more painful or trying than a faster swing dance. I can't make it through a repetitious swing dance though or I get some doozy muscle cramps in the hips.

The great thing about the dancing is, it's so much fun it makes lots of endorphins and so you may hurt, but you feel really good about it.

 

[Jody]

Angel,

The extra white space works wonders for my eyes. Thanks.

Today I parked about a 15 - 20 minute walk away from my destination which was my bank. Very pleasant walk to the bank and then back to the car. I walk at a fairly leisurely pace because I can do it longer and because it is less likely to mess me up after.


Earlier I'd asked my husband Alan if he wanted to go for a walk with me. He's got FM and alot more pain than I do. But he's finding that lack of activity maybe makes it even worse for him, and he has no energy so he has agreed to start going for walks with me.

Initially it was every other day because he is prone to that 24 - 48 hr. smash-back so many of us get after exercise -- the delicately named post exertional malaise -- but there's nothing delicate about it, it's more like a sledge hammer.

Initially our walk would be to the stop sign, about a 3 minute (tops) round trip. That winded him though in the beginning so that's all we did for a few weeks, every other day. And we'd skip days he felt crappy.

Then, we moved up to around the block which is maybe a 10 minute walk. It winds him at this point but I am optimistic because I've been through this so many times myself. He is re-conditioning his body and though it takes time it can work.

So today after I'd been home awhile I asked him about maybe a walk together and ... we did. A nice summer's day walking around the neighbourhood with my Baby.

And that's my exercise program for the day.

 

[Sushi]

Hi Jody and Angel,

I've done similar things with minisculely upgraded exercise programs. I started with 5 minutes swimming and it was "pant, pant" all the way. I swam about 5 days a week then increased a whole minute the next week!

But it was slow and sure with no PEM. After a couple of years I am nearly a tri-athlete by our standards--one hour of pilates per week (with reformer), about one 45 minute outdoor bike-ride (flat), and several sessions of half hour lap swimming. For me the key is not to do two days of strenuous exercise in a role. For me the most strenuous is pilates and that requires a day's rest afterwards. Next on the strenous scale is the bike ride. That one is tricky as I live in a beautiful area and it is hard to discipline myself to come home.

But for me exercise makes a big difference. Before I was getting any formal treatment (cause nobody had anything to offer!) exercise and diet kept me ticking over, not at prime level for sure, but passing for normal. Course that was before the last crash!

Sushi

 

[Jody]

Sushi,

Interesting to hear what types of exercise other people are getting.

How is it these days, are you exercising like you were at your peak or is it different now? You mentioned the last crash changed things.

 

[Sushi]

Hi Jody,

The exercise I described below is what I am doing now and have very slowly worked up to over several years. I had my biggest crash in 2006 and was in pretty bad shape for a while there.

Pre 2006, I used to exercise more--and now I know it was often too much. But I didn't know about PEM then and just couldn't understand why I couldn't train and recover like others--so I tried!

I was riding with a bike club for a few years and could never manage their "normal" rides of 30 or 40 miles, but regularly went on 15 to 17 mile rides--but then I would be done in for a couple days afterward. Looking back, I think I did best with exercise (in the pre-crash days) when I did very regular and sustained low level aerobic or anaerobic exercise. This means a low enough level not to have to have recovery time. I have not been able to get back to this--and am certainly not going to push!

Sushi

 

[Angel]

the exercise crash

Hi Sushi:

You may have had the type of crash I was referring to earlier. You get into your ideal physical shape with a great exercise program and then suddenly you start going downhill and can't stop the downward slide.

Our brain constantly wants to do what was normal "before". We need to exercise at a level slightly lower than the one that causes us to crash, because the crash causes us to lose several months of quality exericise. Frustrating isn't it.

I'm doing quite well now, but I still get some strong reactions. Saturday I had done 30 laps at the pool instead of my usual 20. I didn't do them all in a row, but I've been paying for it ever since. I really hit the wall last night (Monday) physically and needed to take a nap at 9:30 in the evening.

I do my swimming in slow motion and concentrate on form and breathing over speed. Speed doesn't go well for chronic fatigue or FMS. I have both.

Kudos to you and Alan on walking. Keep it up. He will feel better. His instincts are correct.

Blessings,

 

[Jody]

This is fun.

Sushi,

It is a challenge to find what is enough and not too much in terms of exercise. Well, with most things I guess.

But it sounds like you're on a good solid track with what you're doing, and sounds like you know your body and what it can and can't do. (Mostly.)

I miss bike riding. Maybe I'll be able to do it again someday. I still have too much vertigo and sometimes it pops up real hard and almost knocks me over without warning ... not too good on a bike.

Angel,

Yes, taking it slow and making any increases very small and gradual is key. Hard not to get impatient but when you know it works, you stick to the bunny slope.

It actually wasn't Al's instinct it was mine. I think he's pretty discouraged these days and it's hard for him to rouse himself to do things that might help him. I know if I didn't ask him about a walk every day he wouldn't end up going. But he's been there for me to lean on for a long time and we do what we can for each other.

 

[Sushi]

Hi Angel and Jody,

Yes, that fine line of when enough is enough! I can now sense myself approaching that line (at least with excercise) by a feeling I get in my chest. It seems to be reliable for me, but of course hard to know what the sign might be for someone else. Still I bet we all get some subtle feedback on this in some form. It took a while to recognize what mine was. I am also experimenting with taking creatine before anaerobic exercise--no conclusions yet--but for "normal" people it seems to help muscles recover and help the process of generating ATP. The long muscles are very mitochondrial dense and this may be why we don't recover so fast--our mitos are often very compromised and can't crank out the ATP.

And Angel, I didn't crash due to exercise, though that would have been a factor. For me it was 2 devastating hurricanes, rebuilding, battling insurance, living in the wreck of a home while it was being rebuilt--plus a couple of other death and destruction scenarios going on at the same time for me. I definitely overdid on every possible level. And then wham! Crawling around the house unable to walk.

This was the first time I actually was willing to submit to drugs. I had known that I had dysautonomia for a long time, but the dysautonomia docs refuse to recognize that dys is part of the chronic fatigue spectrum. I didn't pass the "sudden onset" criteria and had never realized that I was in the ME/CFS category until I got fed up with the drug-only options offered by the dys specialists and started my own research. Also then saw that I passed the Canadian criteria for ME/CFS with flying colors. (incidentally, Cort's "The Perils of Standing"--hope I remember the title correctly--is one of the best narrations of OI I have ever read!)

And Angel, yesterday I tried combining my slow, rhythmic lap swimming with being aware of the delightful tactile sense of water. This was good. I definitely don't race back and forth in the pool, but try to mine all the benefits--like a backstroke while looking up at the stars at night.

Pilates is on the board for today. It has been a measuring stick for me as in the beginning I could only do about a quarter as much as others in the class and needed to sit and "look casual" for half an hour afterwards while I recovered enough to drive home. Now I can keep up with the class. It helps that my teacher also has a history of autonomic dysfunction and is fine with me keeping my own pace.

Yes, this is a fun discussion!
Sushi

 

[Angel]

exercise

I remember a Doctors appt several months after I had been diagnosed with FMS, and I believe the muscle spasms had finally ruptured a disk in my neck. They had been so strong for so long, and the medical Docs were "watching" but not doing the right thing for the neck. They were actually having me lift weights in physical therapy - connected to a computer. I was lifting heavy stuff too. It made me worse.

So I had been in some severe pain for several months and sitting in the Doctors appointment room, I was really feeling sorry for myself, and hanging on by a thread.

He walked in, took one look at me, sat down and said, "you need to know that every patient of mine who has chronic pain is depressed." Your endorphins are all used up by the pain and you have nothing left for mood."

He prescribed walking 30 minutes a day to get the endorphins produced. I've always remembered that, and his statement has given me the encouragement many times to go out and just do it, even though I didn't want to, or feel like it. Sometimes you can't, but I would do what I could. Eventually it all comes together and you are able to do more.

I wouldn't be doing as much exercise as I am now without help from the Prolotherapy treatments.

What a blessing the two of you are for each other for encouragement when the road seems to be too steep.

 

[Jody]

Angel,

I agree, getting some type of physical activity going is so helpful, if a person is up to it.

I know that there are many people who are NOT up to it and for them it is NOT a good idea. I have been one of those people many times in the last decade and I know all too well what can happen when I would try to get some exercise and got sicker because of it.

So if anyone who is too sick for exercise is reading this -- Don't do it! Seriously. Listen to your body and if it says, "No" you need to listen to it and save yourself some grief.

Having said that, when one is well enough for activity it is a big help. The endorphins, getting the blood moving, getting the muscles moving again, can create a sense of well-being. And I remember summers in particular when I was well enough to go for long walks (long for me anyway, maybe an hour at a time) but not well enough to be able to ... think. So I let the ol' body do what it could be happy with, and let it stroll. Not a thought in my head, I swear to God.

And yes, Al and I are very fortunate to have each other. It has been a long hard bunch of years for both of us but we are not alone and that is priceless. And when I feel like a shadow of my former self, he is there to remind me that he doesn't see me that way, and I can do the same for him.

 

[Cort]

Heart Rate

Does anyone notice whether heart rate makes a difference with regards tolerating exercise?

Staci Stevens - from the Pacific Fatigue Lab - believes that if we increase our heart rate too much we get step out of our aerobic safety zone. She finds out the safe heart rate by doing an exercise test and finding when their readings go kablooey. She finds the maximum safe heart rate for many people to be surprisingly low.

It makes sense to me on a personally level. I can feel my body stiffen up as I accelerate when I hike. I'm doing things to calm it down -which helps. I've wondered if Ashok Gupta is right and my subconscious is responding with a fear message when my heart rate increases or if there's something physical going on or both. Right now I think both are occurring.

Anyway Staci would suggest t hat slowing exercise down allows one to increase the its duration. Do you find that? Is heart rate important.

(This is really a fantastic thread (post)(discussion) - you can rate threads by the way - by clicking on the Rate the Thread tab on the first post on the page. I gave it an excellent rating.)

 

[Sushi]

Hi Cort,

Thanks for bringing that up. For me, heart rate has been the key. I have exercised strictly by a heart rate monitor and, for me, I had to stay in a ridiculously (for a jock or jockette) low range. I even wore one swimming. The damn batteries wear out fast though, so I am not using one at the moment. I need to keep my heart rate between about 90 - 100 for something like cycling or swimming. Tops would be 110 for a short sprint.

With pilates, which is mainly anaerobic, I need to pace the speed of the reps and take a short breather if we are moving into an aerobic zone. I never let myself into the hard breathing zone. It is amazing how slowly you can swim! But then with goggles (and even better a snorkel in the ocean) you can enjoy the sights and really tune into the feeling of your body's movements.

Maybe I shouldn't mention this, but in my adventures with ME/CFS/Dysautonomia I was prescribed valium--the doc thinking it was stress. Well, my heart rate monitor showed that it significantly lowered peak heart rates while doing aerobic exercise. So I did some research and found the reason for it (which of course I can't remember!), but I do now take 2 and a half mg of valium before what is strenuous exercise for me--cycling or pilates. It definitely, but definitely increases my endurance and prevents PEM--my guess is by slowing the heart rate. And, BTW, it doesn't slow your normal heart rate, just the heart rate under exertion.

I don't know what subset this would work for, but another friend who also has OI finds that it works for her too.

Though I had to start with the tiniest amount of exercise, once I can build up to a regular practice it seems to smooth out the hills and valleys of symptoms.

Sushi

 

[Frankie Dene]

Exercise not important

I'm in the Me/Cfs category where in my acute phase, which is now, I have to stop myself from trying to exercise. In the first 15 years of being sick - doing anything too much always brought on a relapse. Sometimes just walking 10 meters extra. I then became cured and was able to go to the gym etc with never a relapse, back fitter than ever. Now I'm sick again I am back not able to exercise and having to hold myself back from extra activity. We know there are lots of categfories and I believe I'm in the one which suffers particularly from PE relapses. We are all so different no wonder it is hard for Drs to give us good advice!

 

[Jody]

Frankie

I can understand how frustrating that restriction can be.

Many times I have been able to do much for months, even years at a time because each time I'd try I'd re-injure myself.

A year ago, I thought I'd start lifting my sissy weights again. Did too much -- like 4 or 5 reps instead of one, of too many types of lifts and the next day I'd messed up my neck, shoulders, elbows and hands.

It took months for the pain and inflammation to simmer down and it took till now, a year later, before I felt I could safely give it another try.

There's just no point in trying to hurry the process, as much as we might want to sometimes.

 

[Jody]

(This is really a fantastic thread (post)(discussion) - you can rate threads by the way - by clicking on the Rate the Thread tab on the first post on the page. I gave it an excellent rating.)

Why, we thank you very much, Cort.

It's fun too.

 

[Cort]

Heart Rate Monitor

That's fascinating Sushi. How did you determine your appropriate heart rate? I'm definitely going to try this. I think I'm already doing it actually and I have increased my endurance by about 30% I'd say. I did that by examining closely how my body was doing during my mindfulness exercises. Often I just stop and let things settle down and then slowly move on.

I'm going to whip your Valium experience by Staci Stevens and see if she'll respond.

 

[Sushi]

Hi Cort,

I found out what heart rate worked best for me by trial and error--mainly whether I needed to recover from my "health promoting" exercise!

I went into my pilates class yesterday with this discussion in mind. This is my most intense exercise and yesterday it turned out to be a private class (people on vacation) so she put me on a more challenging machine. Pilates was originally developed to use resistance machines called reformers, though most are now taught on the floor as mat classes because the machines are very expensive.

The whole principle of pilates is to stabilize the core of the body by breathing and using core muscles. This new machine we used yesterday actually doesn't allow you do the exercise until you have stabilized your core muscles. So this took a lot of mindfulness and also extra muscle work.

I was interested to see if I would get PEM. I didn't, but needed an extra hour's sleep. I had been careful to monitor breathing, muscle use, and heart rate during the class. This is good news, particularly as my fitness level has increased a lot without apparently getting into oxygenative stress.

I also went into my computer and found that article on valium (of course it was a study on rats!) but I'll quote it here as it has to do with oxygen and glucose regulation:

Neuroprotection afforded by diazepam against oxygen/glucose deprivation-induced injury in rat cortical brain slices

Lorenzo Riccia, Massimo Valotia, Giampietro Sgaraglia and Maria Frosini , a,
aDipartimento di Scienze Biomediche, Sezione di Farmacologia, Fisiologia e Tossicologia Universit di Siena, viale A. Moro 2, lotto C, 53100 Siena, Ital

Available online 19 January 2007.

Abstract

The aim of the present investigation was to assess neuroprotection exerted by diazepam (0.125 μM) in rat cortical brain slices subjected to oxygenglucose deprivation and reoxygenation. Neuronal injury and neuroprotection were assessed by measuring the release of glutamate and lactate dehydrogenase and tissue water content. Results demonstrate that diazepam exerted neuroprotective effects according to a U-shaped, hormetic-like, concentration-response curve, with an efficacy window of 0.55 μM concentration. Flumazenil (20 μM) fully antagonised neuroprotection afforded by 5 μM diazepam. In conclusion, the hormetic response of diazepam should be taken into consideration when designing experiments aimed at assessing diazepam neuroprotection against ischemia/reoxygenation injury.
Keywords: Diazepam; Brain ischemia; Oxygenglucose deprivation; GABA-ergic system; Flumazenil

http://www.sciencedirect.com/scienc...serid=10&md5=1a3928c6ee741c498b4b9514de938eed

Sushi