Hello Bridget and all.
Susan Kleinz here - Phoenix, Arizona
Today it is going to be 113!
The heat is hard, but the cold is worse for me.
I have been on baclofen for 22 years. It has saved me from painful
spasms.
I take it every six hours.
neurontin also helps me. I take it 3 times a day.
Also Zoloft and Savella.
I know you can get the spasms under control! you must!
This is a strange disease, and I personally don't like talking about
it to outsiders.
I am grateful to have this website, otherwise, I might give up.
I feel sorry for my husband, who didn't "sign on" for a sick wife.
I have constant band pain and lower back pain. wa wa wa....
I try not to get down.
Good luck! you must be your own advocate.
love,
Susan
On Jun 25, 2012, at 5:16 PM, Bridget Skinner wrote:
A question is coming I promise:
I can relate to all of these different sensations. I live in texas
and am terrified about the cold weather which won't be coming for
quite sometime, but it scares me. Maybe that's because it was so
cold when in was diagnosed and my hands would feel completely
curled up in a ball and while I could pick things up I was unable
to set them down.
I take Baclofen for the spastiscity and muscle spasms and I am so
thankful that it takes care of that type of pain. After being
paralyzed and having to learn to walk again the feeling that was
coming back was pain I had never felt before and was so hard to
describe.
As far as nerve pain goes I take Neurontin. Has anyone been on
Neurontin and Lyrica at different times and can try to give a
description as to how one works better than the other.
My problem is that the Neurontin takes care of most of nerve pain
but my hands continue to twitch and when I wake up in the morning
my feet and ankles have such a horrible sensation that I feel like
I need to go to the hospital - it's that bad (i would not go to the
hospital again unless I ABSOLUTELY had to after the time I spent
there - a month was long enough for me) Has this happened to anyone.
Another question: Has anyone had any convulsions or seizures when
they wake up? Not sure what to call them but whenever I wake up, no
matter what time, My head thrashes forward than back a few times
and it almost seems I have no control over my body. I have to hold
onto the ceramic part of the sink so I won't hit it. I have already
hit the bridge of my nose and chipped a tooth in doing so. I don't
know what to call this but I have made an appt with my neurologist
but can't get in until August 1 and am really scared.
Also, I have a problem urinating. I have to push really hard no
matter how bad I have to go.
In conclusion, I would really like to know what works best for
nerve pain, whether Neurontin or or Lyrica. Neurontin works other
than the bottom bart of my legs. I should be grateful that it works
that well, it is much better than what I went through before the
scripts were ordered. But am curious about Lyrica. My neurologist
mentioned it as an alternative but as I said the neurontin was
working so well(other than the lower half that I didn't want to
change anything.)
Thank you for listening - I know we all have different experiences
with our own Transverse Myelitis and I appreciate your time. Wish
I could find a support group nearby. While I can't donate just yet
I will be able to do so in September and it will be very worth it.
On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols
<[email protected]> wrote:
I would start with Baclofen first - I think it works great.
You need to take all through the day, morning, noon and night.
It really does help a lot.
Janice
From: Elizabeth Clark
Sent: Monday, June 25, 2012 2:36 PM
To: 'Janet Dunn' ; [email protected]
Subject: RE: [TMIC] Looking for input.
Coincidentally, someone from a different TM support group recently
expressed similar difficulty and here’s a response that may be of
help…
>
> “Hi all,
> I am new to this group and was hoping you folks could give me
some advice. I am recovering from transverse myelitis. I was unable
to walk for six months and had complete paralysis from the waist
down for three months. I am now able to walk again, but have severe
hypersensitivity to hot and cold and get stabbing pain in my legs
particularly at night. What do some of you do for the pain? I am
looking to avoid narcotics and habit forming medications. Any
advice you have would be greatly appreciated.”
-----------
“My relief came from flexeral (sp) which helped the spasms and
cymbalta, which helped with the neuropathic pain. When I get
localized brutal nerve pain in my spine (rare), only tramadol helps.”
From: Janet Dunn
Sent: Monday, June 25, 2012 12:29 AM
To: [email protected]
Subject: [TMIC] Looking for input.
Hello Everyone - not sure who is on here anymore.
I have written in before, several times in fact, bemoaning the
issues that I have with the cold cold winters that we get up here
in northeastern BC.
Now, it is the heat. My question is this: does excessive heat
cause issues like the cold does? I have never noticed it before,
but this year I quit taking Lyrica, and I cannot get the spasming
in my leg to stop, no matter what I try. I am wondering if
stopping the lyrica has contributed to the increase in pain, or if
it is heat related?
Thanks for your input.
Janet
