In a message dated 1/7/2006 10:17:36 PM Central Standard Time,
[EMAIL PROTECTED] writes:
Heather,
I completely understand needing 9 hours of sleep - and preferrably 11
hours - because we lose so much with this darn hot and cold thing going on
with our legs and feet. Plus, when I wake up, then I have to cath on top of
that, so I am UP. I also use lotion on my legs and it helps for a while,
but I don't know what to do about this hot and cold thing waking me up at
night. What is a good night's sleep - does anybody know anymore???? Good thing
I no longer work - I'd get fired.
Blessing to you and all TMers
Linda in Bothell, WA
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Original message --------------
From: Heather & Pieter
<[EMAIL PROTECTED]>
Hi Linda,
Thank you for mentioning the cold and hot of
your feet. I have that problem all the time only it is usually the
feet and then my left leg which can be so hot and cold. I can get into
bed and my legs will be burning up. After a while I get cold so cover
up. Get to sleep then wake up a few hours later to go to the bathroom
and find my legs are burning again. A lot of the time I will just sit
up until my legs get cold again then start the cycle all over. At
night we turn out temperature down to 15 degrees celcius so the house get
quite chilly. It can take about 30 mins sometimes to cool off the
legs. I do use a cream called Aveeno and the one I use has a menthol
in it and it helps itchy skin and I do find that the menthol sometime helps
cool the legs faster. No wonder I am now needing between 9 and 11 hours
sleep a night. Usually 9 is good (broken of course) but there are
times when I find that 1! 1 hours is better. Feel like I'm sleeping my
life away sometimes.
Heather in Calgary
----- Original Message -----
Sent: Saturday, January 07, 2006 8:53
PM
Subject: Re: [TMIC] mechanisms of
pain
Hi Jude,
That was me (Linda) talking about the miracles of Lyrica. My
neuro gave me a one month supply, started me slowly until I reached the
maximum dose (2 pills a day total 100mg), I had NO side effects and almost
NO pain at all! I could not believe it. I had some of my life back! He had
weaned me down to almost no neurontin by then. He then gave me a
prescription for Lyrica but my insurance company would not cover it.
The doctor appealed 3 times - still the answer was NO. It is an
absolutely great drug and you do not have to take neurontin once you reach
the max dose of Lyrica.
I am going to do what Sally suggested. Call the company who makes
Lyrica and explain to them what has happened and plead my case for all
TMers. Maybe they will feel generous and give us a good deal on the cost
or even give us some for free! That's even better.
I was up half the night last night first with legs and feet that were
so cold I simply could not get them warm. Then I woke up after a whole 2
hours of sleep with legs and feet that were on fire. They still
are.......so very painful........I feel like screaming : -
)
Hope that answers your questions. I will let everyone know what I
find out from the makers of Lyrica.
Love to all
Linda in rainy, windy Bothell, WA
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Original message --------------
From: [EMAIL PROTECTED]
In a message dated 1/7/2006 6:31:09 AM Central Standard Time,
[EMAIL PROTECTED] writes:
Sally, you are also very fortunate not to have pain. I can't even
imagine. I have had pain since 1988, starting with the joint pain, and
then TM hit 4 years ago. The first year was the "best" (if there could
possibly be one!) because I didn't have any feeling from my chest
down. Then after about a year, wowser - exploding neuropathic pain. I
did get a month supply of Lyrica a few months ago from my doctor - I
could not believe the difference. Almost NO pain. Oh - and I had no
side effects, lucky me. However my insurance company won't cover it!
So I'm back to neurontin which quite frankly only just barely takes
the edge off.
And I agree, I continue to pray for those in pain and for those
with other related symptoms that go along with TM.
Love you all
Linda in Bothell, WA - yep, still raining!
--------------
Original message --------------
From: [EMAIL PROTECTED]
I am with Alton as far as the pain goes, I have
never had any of that with TM. I do feel so sorry for the ones that
have the pain you can't get under control. I have had pain in 79 and
nothing took it away. It went on for several weeks in the beginning
and then 4 weeks at a time off and on during 5 mos or so. I pray all
the time for those of you in pain, even those that don't and yet
have other types of not really pain but so so.
Hope you take care and have a better day
today.
Love ya all
Sally
NC
Hi,
I am not sure if I am replying to Linda or Sally, so
please forgive me. I seem to be missing a lot of emails and only a
few come through giving me only a portion of the communication going on
between TM members.
My doctor just gave me a script for Lyrica.
Linda, are you the one who is now taking it? Can you give me a bit
more feedback about it? Are you having more side effects and is it
still working so well on the pain??
My pain level is way up these days, with two broken
legs to tend with as well as the neuropathic pain from TM. My doc
told me to back off of the Neurontin while on the Lyrica. Did you
notice any effects from not taking the Neurontin any longer? I've
been on it so long now, I am afraid to be without it.
Please get back with me as soon as you have the
time. I really need help with my pain and probably ought to start
the Lyrica.
Thank you so much,
Peace and Love,
Jude
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One good thing about having this closed
indwelling catheter in, because of the difficulty of trying to cath with two
broken legs, is that I only have to set my alarm every four hours, in order to
turn myself to avoid pressure sores.
It takes half the time to turn myself as it does to cath, so I
am getting twice as much sleep as usual. I cannot understand why more of
us do not have these kind of bags. I need to discuss it further with my
doctor as I would like to continue with it after my legs have healed. I
would certainly be more mobile because I can only cath after coming back to bed
to undress etc. My lesion is up too high in order for me to wriggle up and
down in my chair to remove clothing etc. when readying myself to
cath.
Anyway, I would like to hear more from others regarding this
matter.
Peace,
Judy
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