Miracle swim cure

[thegirlwiththedog]

I have a bizarre symptom and a bizarre treatment for it, and I'm curious whether anyone has related experiences. I sometimes have a great deal of difficulty walking. It's as though my feet weigh a thousand pounds, or as if my brain can't quite communicate right with my legs. I don't have any obvious neurological stuff like tingling, and neurologists have said that I'm neurologically normal. It's somewhat worse on my left than my right, and it can come on rather suddenly and dramatically, leaving me stranded if I'm out.

So here's the bizarre cure: If I go swimming in the middle of an episode, it cures me for the rest of the day. It doesn't take a lot of swimming, either: a single lap, I think, would do it. I feel it working in the first few strokes. I stagger to the pool, barely able to make it at all, creeping forward a couple of inches and grunting with effort at each step, I swim for a few minutes, and then I get out and walk away normally.

It doesn't work prophylactically: If I swim in the morning, I may well have an episode later in the day.

The other thing that makes a difference is massage of my lower back and buttocks, but it's not as effective. It doesn't last as long and it's not as complete.

So, anyone have any similar experiences?

 

[Sushi]

Hi Girl,

Great thread title!

I am trying to remember a similar experience to this, but of course remembering things can be as difficult as standing and walking!

Best I can do is remember a clue. I also used to get (more in the past than now) the thousand-pound-leg syndrome. I experimented with using my heart-rate monitor in the swimming pool. There is something about swimming (or being in cool water? or holding your breath for part of each swim stroke?) that effects your heart rate. I remember that there was a dramatic change but I can't remember the science behind it.

I asked my autonomic specialist about it and he told me the reason, but I have forgotten. Maybe someone else can remember?

Sushi

 

[ukxmrv]

I can't swim due to intolerance of chlorine and too weak. Even trying a few strokes makes me worse with severe exercise intolerance and vomitting later.

However, cold water is good for me. Massage doesn't do anything.

Ideas

1. Is it cold water
2. Is it circulation (because the massage works for you a little)
3. Is it co-ordination i.e. does swimming somehow "connect" your brain to your legs

Anyway, do you have one of those heart monitor or blood pressure machines that you could use before and after the swim?

 

[calzy]

I can't swim due to intolerance of chlorine and too weak. Even trying a few strokes makes me worse with severe exercise intolerance and vomitting later.

However, cold water is good for me. Massage doesn't do anything.

Ideas

1. Is it cold water
2. Is it circulation (because the massage works for you a little)
3. Is it co-ordination i.e. does swimming somehow "connect" your brain to your legs

Anyway, do you have one of those heart monitor or blood pressure machines that you could use before and after the swim?

Dr. cheney encourages all of his patients to "hang" vertically in the pool, apparently drains the lymph system, it really works for me when i do it. It may be the water pressure helping you?

 

[Dufresne]

I've always noted great benefit shortly after a quick swim in the lake. Specifically a sharpening of consciousness. It's not even a matter of swimming, I dive under and then stand for a minute and that's enough. Recently I read a post referring to an old Cheney recommendation of hydrotherapy as a means of down-regulating inflammatory cytokines. Maybe that's it.

 

[thegirlwiththedog]

For me, it clearly has to do with the motion in the water. Taking a bath, or sitting in a hot tub, don't do it, and I seriously doubt that being still in a pool would do it either. I do get the sense that swimming somehow gets the brain and legs talking to one another again. I wonder if there's some kind of neuro-inflammation that in some odd way gets suppressed by being in the pool. I also wonder if there's something about the uniform resistance of the water that makes a difference.

I swim quite slowly, and my heart rate stays below my AT.

Interesting, Sushi, that you too have had the "thousand pound leg" syndrome. I'd love to hear more about what that's like for you, what makes it come on, what makes it go away, what it feels like to you, etc. I haven't heard of anyone else who's experienced the same thing, and doctors have seem pretty puzzled by it. Even when I saw Klimas, and my walking difficulties were in full force, she seemed a bit surprised.

 

[undcvr]

Holding your breathe while swimming tricks your brain into thinking that you are running short of oxygen. The body then pumps more blood into the brain. This floods the brain cells with oxygen rich blood which gives you clarity in thinking. I assume it must boost the functioning of many other cells in the brain too.

This is similar to the yogic peacock pose where you do and handstand. It rushes blood to your head due to gravity. The handstand position also means that gravity is doing the lymphatic drainage for you, which is another benefit. The insights you gleen while in this position can be amazing.

 

[Francelle]

No experience with the water-swimming thingo but certainly I have had what I call "legs which feel like tree trunks" because of their weight and difficulty moving them. So hard to walk - I could just plod along at snails pace! I have this 'symptom' less now but I did have this frequently especially in the couple of years before, as well as, after I first came down with M.E. full blown!

I still get a lot of leg symptoms but different ones, like relentless pain+++, aching++ burning++ and stiffness.

 

[Marco]

Yep - Works for me!

I've heard it explained in terms of heat shock proteins and its the relatively cool water that seems to do the trick which doesn't rule out other mechanical benefits of boosting the circulation.

I recall seeing a Russian paper advocating regular ice cold showers throughout the day as a treatment for ME/CFS.

 

[Sushi]

Interesting, Sushi, that you too have had the "thousand pound leg" syndrome. I'd love to hear more about what that's like for you, what makes it come on, what makes it go away, what it feels like to you, etc. I haven't heard of anyone else who's experienced the same thing, and doctors have seem pretty puzzled by it. Even when I saw Klimas, and my walking difficulties were in full force, she seemed a bit surprised.

Hi Girl,

I know a bunch of people who say their legs feel like that. I think it goes more with those with a lot of autonomic problems. For me it comes whenever my other symptoms are worse and goes when they are better.

Regular, mild exercise seems to help me. I used to do very slow swimming wearing a heart rate monitor. Then I did pilates with the reformer machine and that was good too. My pilates teacher also had autonomic dysfunction and reduced her symptoms to nearly nil with pilates. She used to pass out several times a day!

I've moved recently and haven't found another pilates teacher so have been using weight machines at a gym--low weights, heart rate monitor--but keeping muscle tone in my legs helps pump the blood back up to where it is supposed to be!

Sushi

 

[thegirlwiththedog]

Quite interesting, Sushi.

 

[m1she11e]

That is interesting Sushi. I used to teach Pilates. The year I got licensed was a bad one and my legs were so weak I could barely walk. (Who decides to get certified to teach Pilates when they can barely walk?? I guess I was always hopeful of being well one day...) Anyway, I only learned to teach Pilates on the mat. (Not the machines) I had to perfect the 10 basic Pilates moves and although there are MANY more, they are the 10 that work every single muscle of your body. I pushed through and did them daily and my whole body did get stronger. My legs got stronger and stopped feeling like I was walking through quick sand. I also feel better when I do my squats and weights. I know we are all different but laying around always seems to get me sicker. I guess it is knowing how far to push yourself and when to stop that is key. Back to Pilates for me!

I love the swimming thing too. I came to stay a few days at my boyfriends just so I could use his pool and give it a try! Thanks girl with the dog!!

 

[Alexanderbell]

Hi,,,
I have read your whole case history.I have not experienced the same but I noticed a few people in the surroundings with the similar signs.You have told that the doctors are quite confused.Can you please tell me either you have consult this issue with the psychiatric or a medical specialist?

 

[m1she11e]

Hi,,,
I have read your whole case history.I have not experienced the same but I noticed a few people in the surroundings with the similar signs.You have told that the doctors are quite confused.Can you please tell me either you have consult this issue with the psychiatric or a medical specialist?

Well of course we all have, and we are all just crazy and making up our symptoms...FUN STUFF!!!!!

 

[Sushi]

That is interesting Sushi. I used to teach Pilates. The year I got licensed was a bad one and my legs were so weak I could barely walk. ( Anyway, I only learned to teach Pilates on the mat. (Not the machines) I had to perfect the 10 basic Pilates moves and although there are MANY more, they are the 10 that work every single muscle of your body. I pushed through and did them daily and my whole body did get stronger. My legs got stronger and stopped feeling like I was walking through quick sand. I also feel better when I do my squats and weights. I know we are all different but laying around always seems to get me sicker. I guess it is knowing how far to push yourself and when to stop that is key. Back to Pilates for me!

Hi M1shelle,

Yes, pilates suits me well and my teacher (cause she knew the disease from experience) encouraged me to work at my own pace. She had machines, and though I also worked on the mat, I found the machines were less aerobic, and thus better for me. She no longer passes out! And was able to stop taking the drugs that she so hated.

Sushi

 

[cherlyn]

Sushi,

This is quite interesting about the Pilates reformer. My daughter has definitely found that keeping her leg muscles in shape is helpful with her orthostatic issues. She is able to go to the gym and do squats, etc. If she gets lax with it, she starts getting more lightheaded, more headaches with standing, etc. My son is not able to tolerate the exercise overall to be able to do that. Just this week we've been discussing trying to find a way that he can just work on his legs to see if that would be of benefit to him with some of his severe orthostatic issues. After reading your post I was watching a video of the reformer and that seems like something that could be a definite possibility - I love the fact that it is done lying down. I wonder if there are any places where they have these where we could try it out. Did your instructor have one that you used? Was this a private instructor or a gym type of place? I'm curious how to search for possibilites of being able to have access to one for my son to try it out. I will be doing some searching online - if you have any suggestions as to how to locate something like that, I would appreciate it.

Thanks for sharing this.

 

[Sushi]

Hi cherlyn,

I do like the reformer and found it better for the OI symptoms. I went to a private studio: http://www.facebook.com/pages/Proper-Pilates/163901128023

The teacher there is Heather and she could probably answer more of your questions--you could leave her a message and tell her where you are located. If you wanted to mention me as a reference, that would be fine. I think she knows the name I use here but if you mention her student & neighbor with OI who moved to Albuquerque, she would know who I am. She helped me especially as she had helped herself so much with pilates.

Best,
Sushi

 

[Questus]

Girl with Dog...Dr. Cheney has been recommended 'pool walking' for many many years. (Although he specifies that the temp. of the pool be very specific, much cooler than I like a pool) He recommended it for lymphatic drainage.

My husband is a serious athlete and many runners will get in the pool when it's very COLD and water walk after a swim. They do it to flush the lactic acid, it's very popular with runners. It only works when the pool water is very cold. I wonder if they're ALSO getting the results Dr. Cheney understands as well as the lactic acid flush.

Also, though I've had CFS since 85, (without lapses or relapses)...5 years I started doing a weight program called Super Slow. (google it, it's fascinating...there are videos that show it too)...Anyway one 20 minute a week session is equal to working with weights five times a week. This program was invented at the University of Florida as a SAFE way to work with weights, (as well as for other reasons) and Nautilus developed very specific weight machines that are only used for Super Slow. This weight program is always done with a certified Super Slow trainer, not in a regular gym.

My trainer has kept me on lighter weights than what other women my age do, but even so it has had an exceptional result. My muscles are very toned, and with increased muscle strength it takes less energy to move from A to B! It was difficult starting this program because I was so deconditioned, but slow and steady, it's been very beneficial!

The resistance weight training and extremely refining my diet (NO sugar, and no processed foods) has helped me more than anything else.

Michele, you can come to my house and swim anytime...It's funny we live so close and haven't met! Seriously though, I have a pool and hot tub, and you're welcome to use them.

 

[ukxmrv]

I find that it is only the cold water that helps me. Warm water does nothing. Exercise such as swimming causes PEM so only very slow walking, very slow paddling or mixed with floating helps. Anthing that uses my arms and legs like swimming causes PEM, floating on my back and kicking or dog paddle causes PEM.

Interestingly after I suffered muscle damage after an accident the cold water being helpful stopped. Instead the cold caused my muscles to become stiff and much more painful.

We are all different. Just sharing my experience.

XMRV+

 

[cherlyn]

Sushi,

Thanks so much for the info. I will contact her. I am also doing some searching online and find that "pilates studio" brings up places that have these as part of their program.

I really appreciate your input on this.

Cherlyn