Re: Chronic Pain and Exercise

[Guest guest]

Joe- Hello! I live up in central Fl and envy your beaches. I have a pool and

was swimming with my 11yo daughter and her friend yesterday and today is a

huge payday for the fun. From wrists to feet. Polio survivor- had left leg

paralysis which was left weaker,but now is dominant leg due to an ocean of

fluid in both knees. Also 3 failed back surgeries that left me with a rare

spinal cord disease. I wont go into the details and put every one to sleep.

Seven blocks is pretty good- certainly whoops my butt. With Post Polio we

are taught to conserve to preserve. I think the tricycle sounds great (or

even a power chair/scooter) so you can get to the beach. Exercise in water

is said to be of the best type and alot less stressful than other types.

Walking in the sand, no matter the distance, will also build up muscle- just

don't push it, don't wait for it to hurt.

Anyway, that's my 2 cents. I hope it is helpful, if not the intention is

good.

Take care,

Diane

[Guest guest]

Hi Joe, I have to admit I don't really understand what you are going

through physically, except I do definately understand the pain

issues. I have had various recumbent bikes, (My husband likes to

trade in and switch up toys ) The recumbent bikes are easy on the

arms and shoulders, especially the ones with underseat steering if

you can master it. (your arms just hang and then hands are at

handles) But recently we have been looking into a trike for me and

the biggest thing I noticed is how nice it is to not put the stress

of balancing the bike into the equation. While moving balancing is

okay, but when you stop the bike, sometimes it's harder to get

control and it's not an issue with a trike. I feel like I've been

rambling-I hope I got my point across! Good luck--Kimmer

[Guest guest]

Diane,

Can I ask what the rare spinal cord disease is? Is it possibly syringomyelia?

This is what I have where the spinal fluid runs through the middle of the spine

itself instead of in the spinal canal like it is supposed to, and the spinal

center is actually destroyed.

Re: Chronic Pain and Exercise

Joe- Hello! I live up in central Fl and envy your beaches. I have a pool and

was swimming with my 11yo daughter and her friend yesterday and today is a

huge payday for the fun. From wrists to feet. Polio survivor- had left leg

paralysis which was left weaker,but now is dominant leg due to an ocean of

fluid in both knees. Also 3 failed back surgeries that left me with a rare

spinal cord disease. I wont go into the details and put every one to sleep.

Seven blocks is pretty good- certainly whoops my butt. With Post Polio we

are taught to conserve to preserve. I think the tricycle sounds great (or

even a power chair/scooter) so you can get to the beach. Exercise in water

is said to be of the best type and alot less stressful than other types.

Walking in the sand, no matter the distance, will also build up muscle- just

don't push it, don't wait for it to hurt.

Anyway, that's my 2 cents. I hope it is helpful, if not the intention is

good.

Take care,

Diane

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[Guest guest]

,

I have arachnoiditis. It sounds like it is similar to yours. The arachnoid

space is between the pia and dura coverings for the cors and looks kinda

like a spider web (hence the name) it transports CSF up and down the cord.

However, during one of my awful surgeries, the arachnoid was damaged, nicked

or whatever. Now the bottom of the cord (cauda equina) is all dried up.

Also, because of all of the surgeries, I have tremendous scar tissue. That

is choking the rootlets at L4-L5. There is absolutely nothing that can be

done and the outcome is inevitable. Also, I got 2 infections during my back

surg's and one was in the bone. Due to this, no one will touch me

surgically. Apparently there is a chance of the infection coming out of the

dormant state. I am missing a disc at l4-l5 and have 1/2 at l5-s1. so I am

riding bone on bone constantly. Nothing is easy.

Please tell me about your situation.

Regards,

Diane

wrote:

Can I ask what the rare spinal cord disease is? Is it possibly

syringomyelia? This is what I have where the spinal fluid runs through the

middle of the spine itself instead of in the spinal canal like it is

supposed to, and the spinal center is actually destroyed.

[Guest guest]

Diane wrote:

<<,

I have arachnoiditis. It sounds like it is similar to yours. The arachnoid

space is between the pia and dura coverings for the cors and looks kinda

like a spider web (hence the name) it transports CSF up and down the cord.>>

It does sound similar Diane. I have a cyst (pseudomeningocele) between the dura

covering and the brain tissue of the . I imagine I will

have scar tissue at the site of my surgery, but not sure. I have a condition

called arnold-chiari malformation. It is a congenital deformity yet I didnt

know I had it until a year ago. It is when the back of your skull is too narrow

for the cerebellum, and your cerebellum slips down into your neck and on the

spinal cord, and the spinal/brain fluid can not run its normal course from

around the brain and down into the spine. In my case, it bore a hole into my

spine itself at the C2-C5 area and is actually inside my spinal cord instead.

The cerebellum on surgery was actually basically " connected " to my C1 disc so

they ended up taking the top portion of my C1 disc off as well as the back of my

skull. They put a small dural augmentation (kind of a plate, but made out of

artificial bone) in the area where the skull covered the cerebellum, but I still

have a " hole " in my head LOL! My outcome is pretty sure too unfortunately.

Most people with syringomyelia (hole in the spine) end up paralyzed by the time

their life is over. Also the damage done to the cerebellum causes a lot of

nerve damage since that is the nerve center of the brain. I have short term

memory loss, very very poor reflexes and grip (lose all my good china, thinking

about switching to Tupperware LOL). Anyway, physical therapy helped after

surgery as they did some relaxation/massage on the back of my neck near the

surgical site but not on it. And I agree, nothing is easy. I developed the

cyst on my cerebellum when I was told there was a 5 percent chance. I now have

a severe sinus cyst encompassing almost all of my right sinus cavity and I was

told there was a 3 percent chance of malignancy, and I laughed at the doc when

he told me. I told him I have defied all the odds so far, that 3 percent does

not make me feel too good right now. But so far I have refused to have another

surgery so soon to remove it. What do you do for the bone pain? Fortunately a

lot of my pain is not actual bone on bone pain (sound awful BTW) but I would not

know what to do if that happened. It is not like a muscle thing where you can

get a massage or take muscle relaxers. I wish you pain free days ahead!

[Guest guest]

Geeze , I would be having nightmares about my brains leaking out of

my ears! How do you deal with that? You cetainly have a good sense of

humour, even in its darkness! I woud be very afraid - I think you are a

very brave person.

It does sound like we do have some similarities in our back issues. I am

always waiting fot the other shoe to drop.

You will be in my thoughts and I will be waiting and wondering what you

decide to do.

Warm Regards,

Diane

[Guest guest]

Its not really that bad They did put an augmentation in and the tissue on

the back of your head is really tough, so no worries about my brains leaking

out, except when I am in so much pain I :*want * them to leak out I do try

to keep my sense of humor about me, if I didn't I would lose it!

[

[Guest guest]

Appreciate all the responses to my question and am very glad others

brought in other issues related to their illnesses. I am currently

taking a break from exercise (well, not completely but almost) to

try and get my back to feel better.

Regards,

Joe

[Guest guest]

Hi all, I do exercise and honestly can't say it helps my chronic neck and

shoulder pain

(C2,3,4,5,6 T-1 all displaced) but it helps me to maintain a nice figure and

feel like I am

moving and using my body. You know the old expression about use it or lose it.

I do lift weights but only once a week now because the muscles get so irritated

and

inflammed the next 2 days afterward and I pay for it. But I don't want to be

flabby so I

suffer a bit. Yoga is wonderful too. It helps me to stretch and strengthens

your muscles

just by using your own body weight and holding the poses.

I am not saying this is for everyone because no one knows YOUR pain but you.

Believe me,

I know. I have been living this way for 12 years now and have only had it under

control

(sort of) for 3 years now. But if you move whatever you can, legs, arms, etc.

you will feel

better and have more energy and feel alive.

Just getting the extra oxygen into your lungs and blood stream is a wonderful

feeling. I

try to do 45 to 60 minutes of high cardio (heart rate up to 137) 3-4 times a

week on the

elliptical rider, treadmill or anything. Even just take a brisk, long walk to

start. I promise

you if you can, you will feel better. OK, I am off of my soap box now.

Love to you all.

-

Joe wrote:

> Appreciate all the responses to my question and am very glad others

> brought in other issues related to their illnesses. I am currently

> taking a break from exercise (well, not completely but almost) to

> try and get my back to feel better.

[Guest guest]

Hi Joe!

Have you looked into seeing a physiologist (physical medicine and rehabilitation

specialist). They are a little different from pain managemnet and the visits

are covered by the copay. They can do accupuncure, water excercises as these may

be avenues that can help you as I also suffer form the " can't walk more the

7-blocks " syndrome as well. It its worth checking out.

Jan

Joe wrote:

What do you think? Open to other means of exercise, or giving up on

idea. Should I buy trike or just take paratransit and bus (live in

urban area). Could just exercise by walking around zoo, up and down

6 flights of stairs in building, etc. Cheaper. Hate to give up on

exercise cuz pretty isolated and its a way to get out.