Just an idea? What do you all think.

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Just an idea? What do you all think.

Postby preciousheide » Wed Mar 19, 2008 7:18 pm

With all the reading I have been doing on SM, I was thinking, if I am not suppose to strain anything, overwork it etc. I was thinking of asking my doctor to put me in a neck brace, maybe just wear it when I am up and moving around. It seems my head gets real heavy on my shoulders and maybe the neck brace will help it to relax.


hmmmmm........ just trying to help myself as much as possible. hopefully i can be that 1% that has total recovery.

Today I am optimistic!!!!!!!!!!

Thanks for any input. OH AND THANKS TO ALL FOR WELCOMING ME WITH SUCH OPEN ARMS. I NEED THIS WEBSITE ALMOST AS MUCH AS MY PAIN MEDS :lol:
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Postby SMLady » Thu Mar 20, 2008 3:00 pm

Hi PH! I just have SM as well, and I use a neckbrace when we travel far in the car. It helps support my head in case we hit bumps and things like that. I really helps a lot, but that's the only time I wear it. And now I'm wearing a postural brace to help keep my back straight. I have scoliosis, but from the pain I've been in the past few years, I've drawn my shoulders forward to the point where they are starting to stay that way! They said it was common in people who have back pain.

So anyway, I hope this helps!
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
----------------------------------------------
The Man who walks with God always gets to his destination.
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Postby Vagreeneys » Sun Mar 23, 2008 11:26 pm

Yes a soft collar is what i like to use while in the car. But true over use will weaken the muscles so please be careful. Glad your spirits are up today you sound great!!!!!!
SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
Rhuematoid Arthiritis
Neck Fusion C-3 to C-6
Tavlor cyst
Tethered cord
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Postby rose » Mon Mar 24, 2008 2:47 pm

hi
i am a new member
i was wondering what defines strain and overdo it
the only time i feel less pain is sitting
anytime i go to do something i feel done in
is this normal
ra
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Postby Janice » Mon Mar 24, 2008 3:21 pm

Hi Rose,

You didn't indicate what your dx is but I have Syringomyelia only and as soon as I begin doing anything, even a shower, I feel completely exhausted and my pain level increases. Especially with activities, chores or other things that require full body movement.

The only thing I can do (and even suggest) is take baby steps. For instance, take a shower then rest a bit, do a little dusting or cleaning, then rest a bit.

My job each day is to rest when needed and keep my pain level from increasing. This is a full time job and worth it's weight in gold.

Basically, only do what you can without increasing pain or causing total exhaustion. If you're straining to lift an item you probably shouldn't be lifting it. If you're involved in an activity, chore or other that is causing an increase in pain, you probably should not be involved in these things or at least limit the amount of time doing them and then allow yourself frequent rest breaks.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby cash71 » Mon Mar 24, 2008 4:08 pm

HI preciousheide

, I was prescribed an Aspen collar by Dr. B at TCI last summer but the source of a lot of my most disturbing symptoms is brainstem compression from the cranial settling. So for me the collar helps keep my skull up off of my brainstem. Dr. B advised me to wear it when I was in the car and when I was doing things around the house that I knew would be aggravating. Such as housework etc. It would depend on your diagnosis how much it will help you, but I think it would be worth trying.

You should not just wear it all day though b/c you will just make things worse. Your own neck muscles will atrophy and you will be in worse shape.

Along with the collar Dr. B also advised me to get into physio to strengthen my own neck muscles which would basically act like an internal collar to support my head better. This may also be beneficial for you. Both the collar during strenuous activities and the strengthening exercises.

With cm and related disorders though it is VERY important to do gentle exercises and in small incements. Any physio should be aware of your diagnosis and work with you to gently strengthen things. And if it hurts don't do it!!! I have had a very bad experience with a physio being to aggressive with my neck and it gave me an attack of vertigo so bad I was in bed for a week. When you have what we all do you need to be extremely careful with anything to do with you neck.

Oh, and you don't need an Aspen, a soft collar would be fine to try and see if it will be beneficial to you.

Good luck,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby rose » Mon Mar 24, 2008 4:20 pm

janice
thankyou for your responce
i was diagnosed with syringomyelia 2 years ago
after i had a really bad fall
i had back surgury last year which didnt work- i now have scar tissue
L4-L5
the syrinx was found T3- 4
the only thing i was told was not to worry until i wet myself
i have so many symptoms but i dont know if it is injury or the cyst which is causing my pain
any ideas
ra
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Postby Vagreeneys » Mon Mar 24, 2008 10:49 pm

Rose every person is different with symptoms. I have neck shoulder and arm pain sometimes lower back pain. I shake in my arms and legs now with alot of jerking. also have lost muscle and reflexes in all areas so far except my left leg. I am no longer able to work or drive because of it. what are your symptoms?
SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
Rhuematoid Arthiritis
Neck Fusion C-3 to C-6
Tavlor cyst
Tethered cord
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Thanks to all!

Postby preciousheide » Wed Mar 26, 2008 1:40 am

Thanks to everyone for the input, I suppose I should just wait to see a neurologist or a neurosurgeon to make sure, but I do think a soft collar would help every now and then.

Just wanted to say thank you. The information does give me some direction(in case I cant get to see a doctor soon) My neck just gets so tired sometimes.

My shoulders, arms, legs etc. I guess its my whole body but especially my neck and shoulders.

Thank you all!

Heide
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