Dr Staci Stevens Exercise Protocol For Cfs

[roxie]

Has anyone heard of or tried Dr Staci Stevens exercise protocol for cfs? I've read a little bit about it on this site (scroll down to the 4 or 5th post in the first link)

http://forums.aboutmecfs.org/showthread.php?5522-Postural-orthostatic-tachycardia-syndrome-P.O.T.S./page4&highlight=Pilates

http://forums.aboutmecfs.org/showthread.php?3894-CFS-anaerobic-exercise-protocol-(Staci-Stevens)-Can-anyone-explain-it&highlight=Stevens

It sounds really interesting & I wonder if it would help POTS patients too?

[firewatcher]

Having just come in from my Pilates session today on the reformer, I'll add my two cents. I can do more while supine, but certain exercises (like the supine walking or jumping) will spike my HR into the 140+ bpm range. To keep my HR below 110, I'd have to lay there and just wiggle my toes, even on a BB. For me, the post exercise pain is just as bad. HOWEVER, after two years of this, my core and legs are stronger and I do not need to wear compression daily. My muscles are now doing most of what the compression was doing. I do have protracted recovery and will often have a two day crash where I am very shaky and tachy post exercise with adrenaline surges. My physical therapist says that my anaerobic threshold is just too low. We both would have thought that two, dedicated years would have made it better, but it hasn't...yet. It isn't easy and I highly recommend personal sessions with a licensed instructor on the equipment before you put any money towards a reformer or other equipment. It helps to have someone spot you and tell you when to back off so that you don't hurt yourself. I'm still at it and have no intention of quitting, I would have loved doing all this if I were healthier. Pilates creates a beautiful body.

[roxie]

Props to you for not giving up firewatcher! I know it's hard & I struggle keeping up with exercises. It is not easy & like you my heart go over ?100 just lifting my arm and stuff. I think if you only have CFS your heart isn't as reactive so thats why it may be more beneficial for them.?

I have tried little bits of it- the meditative breathing in between exercises & it's helps some but not a miracle?

[Sallysblooms]

I can't do much extra excercise yet, but just more walking and doing things around the house and that is exciting!

I have an eliptical and pilates machine I used to use and I am hoping to use soon. I use exer. bands now. For the core, I put my hands on a cabinet in my living room and just bend over, straight legs and hold. I do leg lifts too. Standing, only when my hubby is here. Only a few of those.

I do flex my feet forward and back a lot. I remember this time last year I could barely do that.

I just took a bath. This is really neat. I filled it way up and used the jets. Hot water too! I used to only use lukewarm water, a couple of inches. I got too hot and dizzy with more.

I have CFS and POTS and I could walk and do more with CFS once I got better. NOW, with POTS I have had to start from nothing again.

[jem15]

Ha, this is so funny that you mentioned this.. believe it or not, I did attempt to try her program years ago.. .maybe over 6 or 7 yrs ago, after reading about her in one of the CFS magazines. Before the recent POTS diagnosis, for years they just told me it was CFS. Anyway, she's out of CA, but I spoke with her by phone/email... and she sent me instructions in the mail. I didnt realize she was still out there doing this...

I dug into my files and found I kept a little packet of stuff she sent. She used to be with something called the Workwell foundation.. the website was www.workwellservices.com Ha, but when I tried that now.. the screen was blank.. but the title said something with "porno" in it.. ha, so dont know what happened there. I actually still found that I had her email: staci@workwellfoundation.org but dont know if that works or not either.

Anyway, I cant remember why I didnt stick with the program for too long. I cant remember if i thought it wasnt doing anything.. or if I just wasn't consistent with it due to working and feeling sick already... I do remember touching base with her by phone a few times.. but sorry, cant remember much...

What I do remember vaguely... was that the philosophy of the program, was designed to try and avoid the "post-exertional malaise", that CFS-ers experience.. Now I hear POTs people mention that too.. .so it might be beneficial if you are currently doing no exercise and want to work up slowly.

I cant remember exactly what it meant, but she called it an "anaerobic exercise program".. and the basic idea was, that patients cant just exercise all at once.. something with the aerobic/anaerobic thing.. and basically she felt we quickly go into debt.. and the more we push it, the worse we get..so the program had you do a simple strengthening exercise.. .then stop and rest for at least a minute in between or until you feel "recovered".. and then slowly start again.. It went very slow.. with very few reps and rests after each one... and very few stretches... they didnt want you doing alot.. or increasing it soon... gradually you would, but not by much.

Ha, eventhough I always feel too sick to exercise and feel even worse when I do.. I remember kinda being inpatient with it.. wanting to push it more, then crash.. instead of starting and stopping each time... I wonder though, how i'd respond to it now.. i"m much more committed/consistent with exercise since I've had to be on disability.. i force myself thru, even though i feel so ill, in hopes that it will help.. i've been doing it for over a year now.. the recumbent bike and leg strengthening, with no improvements yet. I was just looking into seein if i could try Dr. Levine's thing. but maybe if it doesnt work out.. i should change it up and see if somethin like this would work... I seem to gain no endurance from exercise and always feel sicker with it.... I wonder if it's cause i'm just pushing too much and have to do the kind of exercise she describes, at least first. It would be interesting to talk to her again, now that she's been doing this for years... it was relatively new when I contacted her.. or at least it was just being recognized more.... curious to see if she's learned anything new or has had success with patients...

Let us know if you contact her. I'm curious to hear what she's doing these days.. And maybe less is more... maybe that's why I havent improved yet... who knows;-)

[roxie]

That's interesting!

I want going to call her just try to do the exercises as listed by the woman on the other forum. She has POTS too & feels its helped her. It may be good prep/stepping stone to Dr Levine's program.

It's funny you say you felt impatient bc I feel that way stopping to do the breathing. Want to get on with it but it's not like I have anything else to do

[jem15]

Ha, yea. for me, it was kinda like I rather push thru it all and get it over with quickly since I'm already so tired.. then when I rest, I can just rest.. having to stop and start again.. it kinda dragged it out more..cause when I rest i want to stay resting, having to gear up again was kind annoying;=)