EXERCISE AND BEB


Posted by Kelly Saffell , Apr 06,2001,21:16   Archive
After I "retired" a year ago I decided to join a women's health club and began exercising for the first time since I had my kids. My spasms seem to worsen while I work out. I quit using a treadmill when I almost flew off the back of it because my eyes wouldn't open. I now use an olyptical trainer but they still close alot. I take advantage of this and use this for my prayer time! I also lift weights (at 32 I weigh less than 100 lbs and was hoping to "beef up" a bit) and have noticed that my jaw and neck are worse-I have Meige. Does anyone else have problems when exercising?



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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by Shirley-Arkansas-USA , Apr 06,2001,21:49 Top of Thread Archive
Hi Kelly,
Before my BEB symptoms started, I routinely, or at least five days a week walked on my treadmill, 2-4 miles a day. I'd just put some music on or watch TV and walk. Actually had just gotten a brand new treadmill which was much nicer, wider and longer than the one that I had. With the developing blinking and eye closure, I found it more and more difficult to use the treadmill. My eyes get worse when I am on the treadmill. I used to walk with my arms swinging by my sides or half up and pumping for added arm exercise. I have tried numerous times to get started again. I have to hold on and I still seem to lose my balance and it all feels very awkward.
I keep telling myself that it is just my imagination and all I have to do is hold on to the bars and walk. But it has felt so weird and unpleasant, that I have been unable to make myself do it.

Shirley in AR. who at 49 weighs a little over 100 pounds (about 54lbs over) and was more interested in slimming down than beefing up.




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Re: EXERCISE AND BEB

Re : Re: EXERCISE AND BEB --- Shirley-Arkansas-USA
Posted by Mindy , Apr 06,2001,22:59 Top of Thread Archive
I remember my eyes closing while on the treadmill.
Don't throw it out yet, cause I do remember being able to be on there
with open eyes.
Kelly, the treadmill did bother my neck. I felt really good doing Yoga, stopped for a while, tried going back to it,had to stop because it hurt my neck.
Makes no sense to me cause I can do arobics and dance and my eyes
stay open.
Shirley, your sign off cracked me up - LOL
Mindy in NY



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Re: EXERCISE AND BEB

Re : Re: EXERCISE AND BEB --- Mindy
Posted by Shirley-Arkansas-USA , Apr 07,2001,17:23 Top of Thread Archive
Mindy,
I won't throw it away as others in my family use it. I wouldn't anyway. I have a hard time throwing anything away.
Probably once I got used to it again, it wouldn't bother me so badly. It's just getting that old motivation going.
I do remember being under 100 lbs. All through high school. Finally got up to 110 around college time. I still envision myself as a thin person-it just ain't so, anymore. I will blame it on having children.

Shirley in AR. where there is green yucky pollen, everywhere.




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Re: EXERCISE AND BEB

Re : Re: EXERCISE AND BEB --- Shirley-Arkansas-USA
Posted by grace anne , Apr 06,2001,23:13 Top of Thread Archive
My husband got me a treadmill for Christmas because now that I don't work, I'm not getting in the walking that was involved with my job. There's only so much walking you can do between the kitchen and the bathroom. I just tire out easily, especially my legs, which is why I really need to be on it. I even listen to my talking books while I'm on it. But I still can't make it a whole mile and really get dry mouth from it - and I have my bottle of water with me when I'm on it. I also have a Good Housekeeping exercise tape which I really like, mostly because it has NO floor exercises which are hard on my lower back. I've been trying to switch off between the two, but not real happy with myself that I can't go longer.

graceanne in port orchard




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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by Virginia , Apr 06,2001,23:50 Top of Thread Archive
Kelly,
I have the same problem. I always exercised regularly and miss it now, but the jaw and neck really act up and it gets hard to breathe (not like being tired and out of breath). I bought a yoga tape, but haven't tried it yet.
Virginia in AL, who doesn't even remember weighing less than 100 lbs.

P.S. I was in Dallas last month and went to the Arboretum for Dallas Blooms - it really is spectacular.




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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by June in Toronto (June Floyd,June in Toronto), Apr 07,2001,05:57 Top of Thread Archive
I seem to be the opposite of everybody else who has posted about exercise so far. Outside of a time before and after botox injections (when I can't move around much for fear of falling), I find exercise very helpful. My eyes are better whilst doing aerobics especially and the treadmill, which I find boring but use sometimes anyway, is fine as well. I haven't done much in the last 2 months, which is unusual, because of problems from the last botox injections, but in general I'm much better whenI exercise regularly.

June in Toronto who THINKS she might have been 100lbs at age 10!



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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by Peter Hillier , Apr 07,2001,06:24 Top of Thread Archive
Kelly, it may be that you are doing something you are not keen on but feel duty bound to do it, my wife, Yvonne, and I do a lot of walking with our dogs which she enjoys and this relaxes her eyes, she also does other things to relax her like spending money but she avoids the things that wind her up a bit (which includes me on occassions) or that she simply does not like doing which includes the sort of exercise you describe, so you might try just finding a more relaxing but equally beneficial activity.



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Re: EXERCISE AND BEB

Re : Re: EXERCISE AND BEB --- Peter Hillier
Posted by Carol Arp , Apr 07,2001,15:04 Top of Thread Archive
I have been able to keep running over the last 3 years. I think Peter is right in that it meant so much to me to keep running that I would take chances of falling etc to keep doing it. My eyes don't stay open while I run...but I get them open often enough to see most obstacles. I also only run where I am familiar with the terrain or with someone else who spots for me. I've run 2 marathons this way in the last 2 years. I notice if I don't exercise I feel much more tired during the day. I also lift weights. I see exercise as a form of freedom. Something I have control over. Some of us don't have alot of freedom now compared to our pre-disorder days so I take what I can get!



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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by Joanne Matuzas , Apr 07,2001,13:12 Top of Thread Archive
Kelly, thanks for the post re your experience with exercise. I love
to walk but can no longer do so not so much for my squeezing eye muscles, but my breathing difficulties from the diaphragm spasming or whatever is going on.
I started using the treadmill with my eyes closed but the breathing is
still a difficulty so I just go slower. I also have an exercise program with light weights which doesn't seem to bother me much one way or the
other. I do love to dance, though, and manage to handle that a bit better. I am also in a Yoga class which seems ok if I am not spasming--if I am calmed down from a med, I do pretty good. Guess I am
pretty stubborn and keep pushing through. Right now I am having a difficult time with this post. Take care. Joanne M. CA



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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by Kelly Saffell , Apr 07,2001,17:06 Top of Thread Archive
Thanks for the quick feedback. Looks like I am not alone. I honestly love exercising and especially lifting weights. That is why I am trying to figure out if it is causing my problem or if it is something else. My jaw and my neck are in constant pain now-causing headaches- and have been for about a year, around the time I began my exercise program. My neck was injured in a car accident 16 years ago so I don't know if that is a contributing factor. I REALLY want to keep lifting but it is not worth the pain that I have been in which seems to have gotten worse lately. I also have a nerve under my shoudler blade which began to tingle about six months ago while lifting. I am looking for a movement disorder specialist in my area now-maybe I have related dystonias I am not aware of.



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Re: EXERCISE AND BEB

Re : Re: EXERCISE AND BEB --- Kelly Saffell
Posted by Shirley-Arkansas-USA , Apr 07,2001,17:30 Top of Thread Archive
Kelly,
There was a lady at the last conference that had BEB due to a neck injury that she suffered in a car accident. Said that it involved her C2 and C3 (cervical spine). The neck injury, I feel, could be a contributing factor.

Shirley in AR.




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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by MaryNY (Mary,MaryNY), Apr 07,2001,20:45 Top of Thread Archive
(grumble,mumble) I've said this before....whenever the idea of vigorous exercise enters my mind, I lay down until the feeling goes away. And let's not talk about my weight..........Mary



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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by Delaine Inman , Apr 07,2001,22:21 Top of Thread Archive
I use to love to walk for exercise, but as my BEB progressed I could do it only if I had my dog with me on a lease, then even that got hard and not enjoyable. It is so strange I can get out in the yard digging, planting, weeding working really hard physically and if I have my cap on and 2 pairs of sunglasses I can get so involved I can work for hours and realize my eyes are open. It's my fibromyalgia that limits how much and how long I can do it more often than the BEB. When I first got BEB and I was still in that panic, I can't believe this, what a waste of a good nurse who loved her job, I would pray and ask God to please show me what to do. I'll do anything to be healed or to be led to do what you want me to do. I know you want me to do something great, something wonderful. This still small voice from within would whisper....."Maybe I just want you to plant flowers." Now I can take that literally or as a metaphor, but I got out there and started making flower beds and planting flowers. I feel almost normal for periods of time when I am working in my flowers. I also feel I've planted flowers by starting the support group and being part of this BB, and writing poems and stories. So now the hard work of making those flower beds and taking care of them is my favorite form of exerise. I do gentle stretches on the floor and on a ball and climb the stairs a zillion times a day. But my true love is making beautiful flowers. If you had told me that would be my love before I got BEB, I would have said no way. I had spent too many years in practice and in school learning to be the best nurse I could be. Now I'm more focused on just enjoying the day as the best person I can be and getting through the day as best way I can.
Delaine in TN where "the thermometer from any angle" took "weight on" to try to gain up to 100 pounds while in high school. I don't have that problem of wanting to weigh a 100 pounds anymore. Now my goal is to stop gaining the 5 to 10 pounds every ten years since high school, because all four grandparents lived to be from 85 to 95 and I'd prefer not to keep that up if I live that long.

--modified by Delaine Inman at Sun, Apr 08, 2001, 08:45:39




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Re: EXERCISE AND BEB

Re : Re: EXERCISE AND BEB --- Delaine Inman
Posted by Sally - in - Idaho , Apr 09,2001,00:39 Top of Thread Archive
Delaine ... I would feel honored to be one of your BB flowers. The warmth of your friendship is a blessing.

And ... I do believe you have a precious little grand-daughter blossoming in your home garden of love. That could be one of the ideas God had in mind for you.

Keep up your lovely writing.

Sally in North Idaho where it is cold and windy and I am coming down with a terrible cold.




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Re: EXERCISE AND BEB

Re : EXERCISE AND BEB --- Kelly Saffell
Posted by Judi in NC , Apr 10,2001,14:20 Top of Thread Archive
I don't have a problem with my eyes shutting when I exercise, but when the Botox is wearing off and worn off I have a problem with talkng and keeping my eyes open.



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