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? Exercise for disabled PWCs with OI and PEM

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by xchocoholic, Nov 6, 2010.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi All,

    Ok, so I've been working on healing my body since 2005 and even though I still run into problems from time to time, I've seen a slow but steady improvement. I still have food intolerances, petite mals, disabling OI and mild PEM compared to the total Zombie like PEM I had prior to July 2010. All of the remaining symptoms aren't nearly as bad as they were even 2 years ago.

    My zombie like PEM went away back in July so I was walking for exercise but then figured out that my OI was probably causing me to experience an increase in petite mals aka staring episodes and slurred speech. And my OI wasn't getting any better from just walking either.

    I started exercising for 2 - 4 hours a day on October 12 and it appears to be going pretty well. I'm terribly deconditioned from having disabling ME/CFS/FM, ataxia, OI and PEM for all these years so I'm doing most of these exercises while laying on my back or while sitting up.

    My theory ... :D ... on exercising while laying down is based on the fact that my blood only circulates properly when I'm laying down so this is the only way I can rebuild my body. Muscles help our bodies circulate blood better so hopefully my OI should resolve this way too. Heck if I know though .. Pumping extra blood into my muscles, especially my heart and brain seems like a good idea.

    I don't start excercising until I can tell that my body has recovered from OI. Meaning, I can take a deep breath without feeling any tightness in my chest and I no longer feel the blood rushing into my head. I'm assuming that my kidneys, liver, etc have the appropriate blood by then too. I noticed a couple of years ago that the ability to take a deep breath without feeling any tightness is the last thing I feel before I feel HEALTHY enough to stand up and function normally again. This can take 20 - 60 minutes for me ... usually 60 though. And because of my OI, I still have to lay down every 3 - 4 hours to feel healthy.

    Since starting this, I've gone from barely lifting my head up off the floor for 1 - 2 seconds to 10 seconds. And I can do 20 girlly pushups whereas when I started I could barely do 1. I can do 100 side leg lifts per leg without taking a break now and I started at 5. The list goes on .... I even have some muscles now too ... :cool: Walking is much easier now that there are muscles too.

    I still can't do a real sit up but I can do 10 if I use my arms for leverage. And my legs still get too fatigued to go up the stairs quickly. Those leg lifts where you lift both legs at the same time and hold it are still hard on me but I can hold that for 7 seconds now. I couldn't have done that at all a few years ago. In fact that was a test that I failed totally before I could walk again. I couldn't even think how to lift my legs then. If that makes sense ? Gluten ataxia probably ...

    My question is ... Is exercising dangerous for someone like me ? I'm not sure if my body is healthy enough for this or if I'm setting myself up for cancer, stroke, etc etc ... I had an episode of severe head rushes where it felt like the blood was rushing into my head (like I suddenly went from standing up to doing a headstand) a couple of days ago but those passed within a couple of hours. I appear to be detoxing fine because I haven't had PEM or gotten sick yet ... kow ... As far as I can tell, I've been detoxing fine since my ability to sweat normalized.

    Has anyone with my level of disability tried this ? It's a little scary ... thanks ... x
  2. Esther12

    Esther12 Senior Member

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    I've been sitting on a balance ball recently. It's meant to help with core muscle strength and maybe some balance problems I've been having. I've only being doing it for a little bit so far.
  3. xchocoholic

    xchocoholic Senior Member

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    Hi Esther,

    That's great that you're doing that. I have one of those balls and need to strengthen my core, so I'll have to try that too. I can't really say I have balance problems anymore since my ataxia went away though. I can spin in circles and walk a straight line now. kow ..

    Do you have OI ? With my OI, aka blood pressure dropping as soon as I sit or stand, I want to avoid being upright as much as possible while working out. Just yesterday, I tried using this ball while laying down and I haven't got a handle on what to do with it yet. tc ... x
  4. Esther12

    Esther12 Senior Member

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    Lying on the ball sounds tricky!

    I'm actually just waiting to see a specialist about POTS, so don't know if I do or do not have it.

    I had something like that as a teenager - I had it so badly that when they tried to measure the difference in blood pressue from lying to standing I passed out, so they measured from lying to sitting. I had assumed it was just a growing pains thing, before reading about it being linked to CFS. Hopefully I'll find out more soon.

    I've only started having balance problems since I started getting vertigo & migraines about nine months ago. Hopefully the POTS guy will have some tips for that too. Good luck with your exercise.
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Of course you should ask your doctor first, but it sounds like you are making progress. Go slowly and be careful, sounds like you are doing that. I have POTS and I am trying to get my legs strong. It is so hard when the blood can't make it to the brain, but it is a viscous cycle. You need to have more muscle, but you feel awful trying to get strong.

    The right exercise is good for us all, we just have to be careful and not do wrong things like stand too long or do too much. It is not easy!
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi xchocoholic,

    I have also been working with a good exercise program for a few years and it really does help. I also have big OI issues and found a pilates teacher who also had regular sycope who actually is nearly OI-free through pilates. She was very helpful in helping me avoid activating an aerobic response while doing pilates. I first did mat pilates (lying on the floor!) but then found that using the pilates reformer worked better for me.

    I feel a lot stronger muscle-wise and being more fit with strong legs definitely helps with OI.

    Best wishes,
    Sushi
  7. xchocoholic

    xchocoholic Senior Member

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    My ball may not have enough air in it cause I can sit or lay on it easily. It feel like a bean bag actually ... hope you get some answers on your POTS symptoms. I never faint so I'm not up on what needs to be done for that. My BP just runs too low unless I salt load daily and it takes a dip whenever I sit or stand ... tc ... x
  8. xchocoholic

    xchocoholic Senior Member

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    Hi Sally,

    I ran this idea past my GP after I'd been doing it for a couple of weeks and she was good with it. She wants me to use a heart monitor and keep my heart rate under 120, but I've yet to pick one up. I'm really not pushing myself enough to get my heart rate up though. And I rest in between most sets ... so, I totally agree with you on this and I'm trying to be VERY careful this time. It's been really hard not to push myself ..

    FWIW. I was in PT for OI a couple of years ago and he had me doing leg exercises. While it made my legs feel better it didn't help my BP stay up so I'm working on the whole body now. I've had several whiplash injuries so the tendons in my neck and shoulders are crunching everytime I try to move them. I'm sure this isn't good for blood flow to the brain so I'm working on that too ... good luck with your exercises ... tc ... x
  9. xchocoholic

    xchocoholic Senior Member

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    Hi Sushi,

    Love the name ... yum ... lol ... Great to hear that this is helping you. I looked at the Pilates reformer and I may get there at some point. Right now I'm not ready for a major workout. I'm just doing some stretches, calestenics (sp?) and some yoga moves. Oh and I've discovered that sitting and bouncing a ball into the air while alternating hands or tossing my wrist weights into the air and catching them is a great mental workout. For some reason, just dribbling the ball on the ground doesn't force me to think ...

    It's interesting that you started out laying down too. It just makes sense to me. How else are we going to keep blood in our muscles if our BP is dropping when we're upright ?

    Did you have increased blood flow in your brain that you found a little scary ? That's why I'm concerned about all of this. I definitely feel better now that I'm a little stronger though ... tc ... x
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Xchoco, good you checked to be sure. I wear my heart rate monitor all day! It has been a wonderful tool for me! Good idea for you to get one. I have a very hard time keeping my heart rate under 120 unless I am sitting. I do walk around the house some and I keep watch on my monitor. 120 is the number I look for and then I sit. If not, I get really sick.

    It was funny today. My hubby pushed me in my w.chair and we took a walk. On the way home I thought I would try to walk home, ha, didn't get too far. I got to 120 pretty fast.

    I can walk into a restaurant now though, just not too far. I have made a lot of progress...plenty left though.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have had weird blood flow problems without always knowing why, so I also use a heart rate monitor and let my pulse go back to normal between exercises. Also, my autonomic specialist tipped me off that a very small dose of valium before exercise (half an hour--.5 mg or so) will prevent the pulse spikes. It works for me and I actually found some research on it but can't put my hand on it now. I notice the difference if I forget to take it. I have more stamina--probably because my pulse isn't fluctuating so much.

    Best wishes,
    Sushi
  12. Sing

    Sing Senior Member

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    xchocoholic,

    Thank you for starting a very specific, helpful thread on exercise and OI. I too do floor exercises and stretching, also massaging by means of my weight on smoothed sticks or a firm foam roller. I also do some upright exercises while on my knees or standing, after the floor ones. Then I do activities of daily living and walks sometimes. It would be ideal if I did a walk each day, even a short one.

    But the rub is my OI. My version is NMH rather than POTS. My bp is very low on standing still and often walking. It can be half the normal pressure, and when it is I feel struggle; it is hard to breathe; my chest is tight, my vision grays;; I cannot think and I am stumbling. It wasn't so bad until I had surgery last spring, a total hip replacement. This knocked my system back!

    Now I have a bp monitor and take Midodrine twice a day. Midodrine constricts small vessels, making more blood available for the core. It gives me cold hands, feet and an itchy scalp but it definitely will raise my bp. A problem is that it takes two and a half or three hours to kick in, for me anyway, so the first part of the day must be almost sedentary.

    I do not like what low bp is doing--how I slump and my back is starting to show it and feel it. I have the kind of body which needs movement particularly with all the myofascial contracting going on, so, like you, xchoco, I have to figure out ways and means!

    Onward!

    Sing
  13. xchocoholic

    xchocoholic Senior Member

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    Hi Sally,

    I found my old monitor yesterday but it looks like it needs a battery. That's great that you're feeling well to walk more on your own. My memory is terrible ... did you say that you're on a special diet too ? I wasn't sure if you were aware that Dr. Hadjivassilou (gluten ataxia) stated that it normally took his patients 1 year on the GF diet to eliminate their ataxia aka walking problems. This is what happened to me. Without any warning, my legs stopped feeling wobbly and my balance returned ... : ) ... tc ... x
  14. xchocoholic

    xchocoholic Senior Member

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    Thanks Sushi,

    I'm tired tonight but I'll look into why Valium might help with this later ... tc ... x
  15. xchocoholic

    xchocoholic Senior Member

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    Hi Sing,

    You're more than welcome. This thread is helping me a lot too ... I'm getting so many great suggestions here. Of course, leave it to those of us living this to know all the tricks ... ; )

    I'm confused about how the massage works but I REALLY like the idea. I was thinking it's an alternative to bouncing on a mini trampoline and would get our lymphs flowing ... right ?

    I can't seem to take any meds without feeling worse. Have you tried just taking a 1/4 tsp or 500 mg of salt instead of the Midrodine ? I noticed when I do this that my BP makes a steep climb. FWIW though, I'm still playing with this ... too much salt and I get a headache too ...

    Onward !!! love it ... tc .... x
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Xchoco, yes, I am gluten free. Glad your found you monitor. My husband took me to a nice med supply/pharmacy tonight. We bought a neat folding sling chair. I want be able to go some small places without the w.chair for my POTS. I have a sling cane chair, but it is so narrow, I don't feel safe sitting in it. I have used it and it is handy, but I felt I would fall backwards.
  17. hollie9

    hollie9

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    I've had 4 major surgeries in the past 5 years (hips, knees) and each involved lots of bed exercises which really did me a lot of good. I was able to strengthen my quads, glutes and abs, a lot with these. Wish I had a printout of them but they involved bridges (feet pretty close to butt then lift butt and hold), sit ups regular and to each side, quads was pretty much isometric...tighten and hold. You can get a little pilates ball, put it between your thighs and squeeze...for adductors. There is a lot one can do in bed for exercise.

    It does sound like Pilates would be very good for someone with OI since so much of it is in a laying down position. Most instructors can tailor their workout to your condition so it wouldn't have to be a hard workout.

    Good luck, Hollie
  18. Sasha

    Sasha Fine, thank you

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    I got a heart rate monitor a while back that I chose because it would vibrate if you went over a certain BPM. I wanted a vibrating one because I wanted to be able to wear it outdoors and didn't want to be beeping embarrassingly in public nor missing the alarm if I couldn't hear it over traffic noise, etc.

    Unfortunately it was fiendishly complicated - it was designed to be programmable for people doing workout programs at the gym etc. and I had to phone the company to ask how to set it. After a couple of days' break from using it I had to phone them again because I'd forgotten. I wrote it all down. Then I tried to do it again later but got confused and... you get the picture. :confused:

    Can anyone recommend a simple, simple, simple heart rate monitor that only does one thing - tell you your heart rate and alert you when you're over a particular threshold?! (ETA: Oh. That's two things. :() I'll have to put up with beeping. :eek:

    Am I right in thinking you have to have that strap round your chest, like the one I've already got? I wish there was one you could just wear on your wrist or something. I found the chest strap uncomfortable.
  19. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have a good Omron hr watch now with the chest strap. I wear it all day. I am about to order a new one, prettier, for women. I am looking at Amazon right now.
  20. Sasha

    Sasha Fine, thank you

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    Do you have to programme it? I want one that only shows current HR and only allows you to set an HR threshold in a very simple way rather than forcing you to go all round the houses.

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