Hi Lana,
 
I believe my issue is CMT related.  The neurologist hasn't called it RLS.
 
As I understand it, the Restless Leg Syndrome is associated with a strong,
sometimes uncontrollable, urge to move the legs.  That's different than what I
experience.
 
I do hear many people with CMT talk about having RLS and I wonder if it's really
a separate disease state or just a result of the CMT nerve deterioration.
 
Angela

--- On Tue, 6/2/09, Lana Jarvis <fyfer1949@...> wrote:


From: Lana Jarvis <fyfer1949@...>
Subject: Re: [CMT-Support] i am in pain tonight
To: CMT-Support@yahoogroups.com
Date: Tuesday, June 2, 2009, 6:13 PM








Deep Irritation.  Core Nervousness.  It's actually restless leg syndrome. 
drives me nuts.
lj CMT2

--- On Mon, 6/1/09, Angela <agraham2k@yahoo. com> wrote:

From: Angela <agraham2k@yahoo. com>
Subject: Re: [CMT-Support] i am in pain tonight
To: CMT-Support@ yahoogroups. com
Date: Monday, June 1, 2009, 11:56 AM

Hi Michael,
 
I have all of these kinds of pain too and I also take Vicadin at times.
 
One of the things I've learned is that there are many things causing my pain. 
Some types of pain come from the nerves.  Other types of pain come from the
muscles/joints.
 
The degeneration of the nerves causes the burning pain in my legs/feet and
arms.  I also feel stinging, sharp pains throughout my feet and lower legs.
Sometimes I have to look at my legs to see if something is biting me or if it's
just the nerves.  Does that happen to you?  I take Neurontin for this type of
pain.  Others take Lyrica.  They are very similar.
 
At other times, I have a deep sense of irritation that seems to come from my
core and makes it hard to sleep or tolerate any heat, blankets, etc.  Can you
relate?  I take a low dose of Methadone for this irritation as well as
overall body pain and skin sensitivity.  When that's not enough to control the
irritation and I can't sleep, I take a half a Vicadin and that usually works. 
Ambien has helped in the past too.
 
Then there is the joint pain that comes from my joint/back degeneration and
arthritis.  I take Voltaren, a non-steroidal anti-inflammatory medication for
this.  When that isn't enough and the pain becomes severe in my back/hips,
radiating down the leg, I try to control it with ice (20 minutes several times a
day), Lidoderm patches, and Vicadin.  When that doesn't work, then I go to the
pain management doctor for an injection.  That usually will help.
 
Having a pain management doctor has made a huge difference in the quality of my
life.  He's been about to pinpoint exact problems and address them one at a
time.  He takes different approaches for different types of pain.  And, it's not
just all about medication.  He's educated me on other things that can affect my
pain level, like stress, lack of sleep, and overdoing activities.  I still have
pain every day, but overall it's much better than it used to be before I found
this doctor and I feel a greater sense of control now.  Sometimes just a little
bit of relief makes a big difference.
 
Do you have a doctor who's helping you to identify and treat all the sources of
your pain?  If not, can you get one?  Here's a site that can help you find a
Board Certified Pain Management Specialist in your area:  http://www.abms. org/
 
Chronic pain is difficult to handle, physically and emotionally.  I sympathize
with your situation and I hope you can find a doctor who can help you.  If you
need help, tell me your zip code and type of insurance and I will help you
locate a doctor.
 
Angela

--- On Mon, 6/1/09, Cassie Mahoney <cassiemahoney@ rocketmail. com> wrote:

From: Cassie Mahoney <cassiemahoney@ rocketmail. com>
Subject: Re: [CMT-Support] i am in pain tonight
To: CMT-Support@ yahoogroups. com
Date: Monday, June 1, 2009, 2:17 AM

ALL THE PAIN I TAKE VICDIN 750

--- On Mon, 6/1/09, Angela <agraham2k@yahoo. com> wrote:

From: Angela <agraham2k@yahoo. com>
Subject: Re: [CMT-Support] i am in pain tonight
To: CMT-Support@ yahoogroups. com
Date: Monday, June 1, 2009, 8:02 AM

Hi Michael,
 
I'm so sorry to hear you having pain tonight. 
 
What type of pain are you feeling?  Burning?  Shooting?  Aching?  Irritation?
 
Is this something you usually experience or is tonight worse than usual?
 
If worse, did you overdo your activity?  Or what do you think might have made it
worse?
 
Are you on any pain medication?
 
Tell us what you are experiencing and we can share what works for us.  We are
here.
 
Angela

--- On Sun, 5/31/09, cassiemahoney@ rocketmail. com <cassiemahoney@ rocketmail.
com> wrote:

From: cassiemahoney@ rocketmail. com <cassiemahoney@ rocketmail. com>
Subject: [CMT-Support] i am in pain tonight
To: CMT-Support@ yahoogroups. com
Date: Sunday, May 31, 2009, 11:24 PM

my legs and feet hert i am still looking for friends

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]