Hi Barbara & all,
It is so varying what we all go thru w/ TM. Life can completely change and
I've actually talked to a man who fully recovered from TM when mine hit. He
was kin to my son-in-law & he gave me hope. Needless to say by the time they
removed my spinal cord stimulator from me, in order to diagnose my TM by an
MRI, it was too late for steriods to work, even tho my dr. tried.
I had 3 surgeries in last 2 years on L5/S1 and I thought well if I'm
paralyzed there I won't have pain any more (been in constant pain for 15 plus
years or more. But, once things settled down & the original onset pain was
over; I was left w/ 24 hr. burning feet/shock pain or buzzing in my feet. Day
before yesterday my leg and feet spasms were all the way up to my hip. I was
in severe excruiating pain. But my husband hates for me to go to ER, so I
fought it w/ pills. By Friday, I called him to come home I couldn't take it
anymore as it has settled in my feet. This is the first time, he called 911
for me. I was "out of my head in pain). In the driveway they gave me
morphine, but at the hospital they gave me dualdid (sp?) 2 times IV. I was not
even sleepy. But it did help on the pain. It bothers me I have to have the
hardest drugs there are, but 15 to 20 years of 24 hour pain from my spine, has
indeed taken it's toll. My husband tell's me "I could never go
through what you do Natalie - I would not do it". I had to take a Fiornal
today because my headache from all this pain did not go away as I slept last
night. Now, live is back to normal today, as normal as it can be. I just have
thought all these years of him having to take me to ER and now the ambulance
coming for me due to my wheelchair inability at the time of such pain; that's
what makes me stronger I hope to live for a better day for him as well as for
myself. Sorry for the novel, Natalie
[EMAIL PROTECTED] wrote: Kevin,
I am sending this to the list and not to your email address as I want the
entire list to know how proud I am of you for sending in this email. It is so
wise of you to listen to your body, and get the aids that will help you to live
your life in as full a manner as possible. Like you, I have had to purchase my
own Hugo, but am so glad that I did as I use it everyday.
After having TM for eight years, I have learned many things, and still have
trouble with some. There are so many things available to us to help us with
our everyday lives. If we use them, we can go out of our homes and enjoy our
lives as much as possible. This is true for some of us more than others, but
we owe it to ourselves to make use of these aids.
I'm one of the walking wounded, and still have many aids. I have 2
wheelchairs, one for inside and one for outside. I have 2 sets of canadian
crutches, a scooter, 3 canes, a Hugo and a walking stick. I rotate between the
manual wheelchair and scooter for shopping malls, traveling, warehouse stores,
fairs, anything that requires more than 1/2 block of walking or standing for
more than 10 minutes. I use the crutches or cane in the house, the Hugo if I
need to carry anything or tired, and the sometimes the walking stick when my
brother's around since he made it for me. I use the wheelchair in the house
when I've really overdone it and need to give my body a rest or I'm sick and
not functioning at all.
I have one of the canes in each car at all times, since I've gone out without
one a few times and gotten myself stuck being too tired to walk without one a
few years ago. And, it's easier to put a cane in a shopping cart than crutches.
But, I still haven't been able to agree to have a lift installed on the back
of my vehicle for my scooter. I don't want to drive around town with it
dangling back there saying "here I come, disabled on board"! I don't drive
around town with my disabled placard dangling from the mirror either, although
many do. You really aren't supposed to since it obstructs your view, but I've
forgotten to display it a few times.
I don't "tell all" when people ask how I am doing. Actually, I don't think
most want to really hear about all the aches and pains that we have. If I'm
having a really bad night, my husband knows that it may follow with a bad day.
He doesn't know all that I go through, but does hear my crying in the middle of
the night sometimes in pain when the spasms get really bad. He knows most of
what is going on with me, but most don't.
I have very bad pain in my left leg on some days due to 2 DVT's that have
caused poor circulation. All I can do for that is take some pain medication.
I manage my nerve pain during the day pretty well with Neurontin, but during
the night it's a different story. I'd say that most nights I am awake at 3am
with the heebie jeebies in my legs, where the skin is so irritable that I
cannot allow the other leg to touch or any fabric either. So, sleep is
impossible at that time. There are many nights that I do not get to sleep, but
fall asleep around 6am out of exhaustion or due to a Vicodin.
I take 20mg Baclofen for spasms. I take the Neurontin and Baclofen at about
11:30 pm in an attempt to keep the legs "quiet" during the night. This used to
work, but hasn't recently. Sometimes I take another 1/2 tablet (I have 10mg
tablets) after a few hrs if it doesn't seem to be working. Sometimes the
spasms start around 8-9pm, so I'll take it then, and then I won't take again
unless it gets bad.
Does anyone have any ideas of a better way to take care of these problems,
other than the mj? I'm really not wanting to use it if I can find another way.
Hugs to all, Barbara A in Auburn, CA
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