Re: solutions for severe pain

[Guest guest]

Yes, i too have severe pain, i have it in my legs,back.. its unbearable most of

the time, i too take narcotics and gabapentine and soma, i still am in pain!!

the narcotics take just the edge off, they do not get rid of it all together

tho, but if not for them i really don't know what i would do. the gabapentin

helps some i guess, i have taken it so long i really couldn't tell you.

as for the muscle relaxer it helps some of the time, i have come to the

conclusion that the rest of my life is gonna be pretty much pain. as for the

chiropractor i haven't tried that yet. maybe that should be my next option?? i

don't like to do the EMG's either, the last one i had i had to make them STOP, i

couldn't take it anymore!! i was laying on the table Crying... it was just too

much... i do hope that you find some relief..

i have CMT type 2, osteo-arthritis, severe pain in my lower back, just had neck

surgery, i had 3 herniated discs that they removed,and i just don't know where

to start next for the pain?? anyone with any suggestions i would appreciate

them.

May GOD BLESS YOU.. HAPPY NEW YEAR...

Tracey

[Guest guest]

Hello Tracey,

I am very much in your same situation, so you are far from alone. I have pain in

my feet, legs, and hands. I take Cymbalta, Gabapentin, and a narcotic. Like

yourself....the combination of the three only takes the edge off and there is

NOT a day where I have total relief. Some days are worse than others but I try

to plug along.

The frustrating part is that I really don't want to stay home and on disability

right now so I am working a job. The meds make me tired and my brain just does

not hold attention or process things as fast as I would like. Without the

medication I feel as sharp as a tack and keeping up [mentally] with the best of

them.......but then I feel the burning and other negative sensations in my

appendages. So, there is a trade off.

I am hoping that this will not place me in a space where I will no longer be

able to work but I may have to face that reality one day. In the meantime, I do

feel rather blessed in that I can get up, walk, and do daily functions. The life

of a CMT' er .....eh

Rashid

[Guest guest]

Rashid/Tracey,

I know this has been discussed before, but have you tried alpha lipoic acid? I

did some time ago without result. About four months ago, a new doctor asked me

if I'd tried it. He said studies are showing best results with 350 SUSTAINED

RELEASE ALA morning and night. It's a bit hard to find, but Vitamin Shoppe can

order it if it isn't in stock.

Anyway, I tried the new dosage and I'm having less pain. I really haven't

changed anything else, so I'm giving ALA the credit!

If this doesn't help, I hope you find something quickly!!

Jim

________________________________

From: Rashid <rashidbinquadir@...>

Sent: Fri, December 31, 2010 5:02:11 AM

Subject: Re: solutions for severe pain

 

Hello Tracey,

I am very much in your same situation, so you are far from alone. I have pain in

my feet, legs, and hands. I take Cymbalta, Gabapentin, and a narcotic. Like

yourself....the combination of the three only takes the edge off and there is

NOT a day where I have total relief. Some days are worse than others but I try

to plug along.

The frustrating part is that I really don't want to stay home and on disability

right now so I am working a job. The meds make me tired and my brain just does

not hold attention or process things as fast as I would like. Without the

medication I feel as sharp as a tack and keeping up [mentally] with the best of

them.......but then I feel the burning and other negative sensations in my

appendages. So, there is a trade off.

I am hoping that this will not place me in a space where I will no longer be

able to work but I may have to face that reality one day. In the meantime, I do

feel rather blessed in that I can get up, walk, and do daily functions. The life

of a CMT' er .....eh

Rashid

[Guest guest]

Jim,

i have never heard of that before but i will be sure to write it down and check

w/my neurologist and see what he says about the drug interactions and if there

would be any? THANKS for mentioning that to me.

To Rashid, i am happy to hear that you are still in the work force, i

unfortunately haven't been now for about going on 9 years.(WOW, i didn't realize

it had been that long.) but i like you have those issues... i do miss working

dearly.. as to the meds well, i too do not have a day that i am totally

painfree. i guess you are right,maybe it is the life of a CMT'er.. i don't

know..HAPPY NEW YEAR to BOTH OF YOU!!

Tracey

[Guest guest]

Go Rashid Go! Keep that positive thinking flowing and your faith will take you

great places. I am still working, but surely feel more and more of the effects,

and the daily fatigue is greater and greater. Of course, it makes me wonder, if

I am so tired, why can't I sleep? Different kind of tired I guess.

Mark in NJ

>

> Hello Tracey,

>

> I am very much in your same situation, so you are far from alone. I have pain

in my feet, legs, and hands. I take Cymbalta, Gabapentin, and a narcotic. Like

yourself....the combination of the three only takes the edge off and there is

NOT a day where I have total relief. Some days are worse than others but I try

to plug along.

>

> The frustrating part is that I really don't want to stay home and on

disability right now so I am working a job. The meds make me tired and my brain

just does not hold attention or process things as fast as I would like. Without

the medication I feel as sharp as a tack and keeping up [mentally] with the best

of them.......but then I feel the burning and other negative sensations in my

appendages. So, there is a trade off.

>

> I am hoping that this will not place me in a space where I will no longer be

able to work but I may have to face that reality one day. In the meantime, I do

feel rather blessed in that I can get up, walk, and do daily functions. The life

of a CMT' er .....eh

>

> Rashid

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks for the encouragement Mark. Question: Do you find yourself getting tired

while at work?? Hmm, are the levels of pain keeping you up at night??

Rashia

Go Rashid Go! Keep that positive thinking flowing and your faith will take

you great places. I am still working, but surely feel more and more of the

effects, and the daily fatigue is greater and greater. Of course, it makes

me wonder, if I am so tired, why can't I sleep? Different kind of tired I

guess.

Mark in NJ

>

> Hello Tracey,

>

> I am very much in your same situation, so you are far from alone. I have

pain in my feet, legs, and hands. I take Cymbalta, Gabapentin, and a

narcotic. Like yourself....the combination of the three only takes the edge

off and there is NOT a day where I have total relief. Some days are worse

than others but I try to plug along.

>

> The frustrating part is that I really don't want to stay home and on

disability right now so I am working a job. The meds make me tired and my

brain just does not hold attention or process things as fast as I would

like. Without the medication I feel as sharp as a tack and keeping up

[mentally] with the best of them.......but then I feel the burning and other

negative sensations in my appendages. So, there is a trade off.

>

> I am hoping that this will not place me in a space where I will no longer

be able to work but I may have to face that reality one day. In the

meantime, I do feel rather blessed in that I can get up, walk, and do daily

functions. The life of a CMT' er .....eh

>

> Rashid

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Jim: I will check into alpha lipoic acid, 350 SUSTAINED RELEASE ALA morning and

night and see what I can find out. Thanks for the lead.

Tracey: You know what is interesting is that I was at a conference recently and

the neurologist, who I respect a whole lot, mentioned that pain is not a

'normal' part of a CMT'er. So, I took that to mean that....you and I may be more

an exception to the general rule than the norm?? That may be the case but I

sometimes feel that the medical field does not talk much about neurological pain

from the CMT perspective.

From the diabetic side, sure....but do you sometimes feel that we are sorta

over-looked?? I am currently in the work force, only He knows the future, and

for some odd reason I get this gut feeling that I will not be there to see

retirement age?? I think the meds and fatigue will just take over some day and I

to will be forced to not work.

I am one who likes to financially support\contribute to my household so it will

be hard for me to give that up on the level I can today. But if that will be the

reality, then I will accept it.....what can ya do. How did you deal with it??

Rashid

[Guest guest]

I must say that this neurologist is not up on the statistical data, for every

time statistical data is compiled on CMT with reference to pain, the results are

an increase in the awareness that pain is a significant feature of CMT. Pain had

not been traditionally associated with CMT until about the past decade, and I

have actually had people tell me to my face that, " according to their perusal of

CMT material, there is no reason I should need large amounts of strong

medication, " followed by the accusation of me thereby being a " junkie " ,

particularly since I lived in Holland.

And I also must say that neurologists are not the best place for dealing with

pain issues. A pain management specialist is.

Neurologists often say of themselves that their job is " diagnose and vaminos, "

This means, once s/he gives you a diagnosis, s/he is no longer relevant.

After diagnosis, there is nothing a neurologist can do, and CMT care is

transferred over to a group of specialists.

Personally I have an internist, a pain management specialist, and a CMT

specialist if necessary.

Then there is yoga, which is equal to physical therapy.

On Jan 1, 2011, at 12:50 PM, Rashid wrote:

>

>

> Tracey: You know what is interesting is that I was at a conference recently

and the neurologist, who I respect a whole lot, mentioned that pain is not a

'normal' part of a CMT'er. So, I took that to mean that....you and I may be more

an exception to the general rule than the norm?? That may be the case but I

sometimes feel that the medical field does not talk much about neurological pain

from the CMT perspective.

[Guest guest]

Rashid, you are so right on, on this, i remember my neurologist saying that to

me that last time i did see him about 2 + years ago now.(he is the same Neuro

that diagnosed me in 1994, & i trusted him as well,til he said that to me,then i

kinda looked at him in a different light,b/c when he originally diagnosed

me,he was a whole different story and attitude) So, I think that you are right

in saying that we may be the exception to the rule, i don't know. I DO KNOW

however that I DO Suffer Significant Pain. The dr's now a days look at me as if

i am from some other planet b/c I know my body and what the meds are that I

take. It's like i am NOT supposed to know what i do, about my body and my meds.

They WAY OVERBOOK themselves so as to NOT have to actually LISTEN to the patient

anymore. I happen to live in a semi-large city where we have a teaching hospital

here and a University that is Always having more and more drs to come out of it.

And yet i have to go

to another smaller city 45 mins to an hour away to see just a general dr,and

about another 45 mins away another way to a pain management clinic. I have

called the State Board here in my state to make complaints about the way i was

terminated from my general dr's office.(that was here within 5 mins of

me) there was NOTHING done. but yet i was the one who suffered. the dr's

now days just don't have the one on one time anymore nor do they have any what

they used to call " bedside manner " at all. or at least not around here. the

hospital has gotten so big that you are now a number and no longer a person. i

guess the BIBLE is coming true alot faster than i had thought that it would,

(not that i am trying to bring religion of anyones faith into this,this is just

me and my opinions) but i think that we might be out of the norm or maybe others

just haven't come to terms with it yet? i don' t know??  i have been through

spinal injections,facets and then to

be told that the next step would be a resotomy (not sure if i spelled that

right) but that the anesthesiologist wouldn't do it,b/c of my CMT,that he said

in his words that he could mess me up more than i already am. SO for that i am

Thankful that he didn't do it. I am now going through another pain clinic tho,

and i am afraid that they are gonna want to start pokin around in my spine as

well,and IF i don't consent then they will take away what pain meds i do get

now?? its a double edged sword to me.. anyway if you can think of anything that

you think i might could do i am open to ideas..also, Rashid, How old are you? if

you don't mind me asking? as for the NOT working,well that STILL BOTHERS ME

DEEPLY, somedays are worse than others, but i just can't do it anymore, my brain

keeps saying go,go,go, and my body is saying NO,NO,NO!!! so honestly i admire

you for working, i did too for 10 yrs after my diagnosis and could still do

things around the house, now

it is getting to the point that i am unable to do more and more around the

house as well.. my hands cramp really bad. sometimes i can barely sign my own

name.. the pain in my lower back is excruciating when i stand to the sink to do

dishes, sometimes i have to holler for someone to come to me,and set a chair

behind me so i don't hit the floor, i am unable to move. anyway, take care, GOD

BLESS....tracey P.S. you are also right in saying that the medical field

usually LOOKS over us, i have found that when i see a dr and tell them that i

have CMT, they usually say UH-HUH as IF they really know what it is...when

sometimes i really don't think they have a clue?? also as for dealing with it, i

almost completely LOST IT, when i was first out of work,and as i already stated

some days are worse than others,even now!! so, i honestly don't have an answer

for you on that one. it plays with your mind really hard..

From: Rashid <rashidbinquadir@...>

Subject: Re: solutions for severe pain

Date: Saturday, January 1, 2011, 3:50 PM

 

Jim: I will check into alpha lipoic acid, 350 SUSTAINED RELEASE ALA morning and

night and see what I can find out. Thanks for the lead.

Tracey: You know what is interesting is that I was at a conference recently and

the neurologist, who I respect a whole lot, mentioned that pain is not a

'normal' part of a CMT'er. So, I took that to mean that....you and I may be more

an exception to the general rule than the norm?? That may be the case but I

sometimes feel that the medical field does not talk much about neurological pain

from the CMT perspective.

From the diabetic side, sure....but do you sometimes feel that we are sorta

over-looked?? I am currently in the work force, only He knows the future, and

for some odd reason I get this gut feeling that I will not be there to see

retirement age?? I think the meds and fatigue will just take over some day and I

to will be forced to not work.

I am one who likes to financially support\contribute to my household so it will

be hard for me to give that up on the level I can today. But if that will be the

reality, then I will accept it.....what can ya do. How did you deal with it??

Rashid

[Guest guest]

And , you are NOT alone. Without the 5 medications I take for pain, all are

necessary and none may be missed, otherwise I am miserable and cannot

concentrate. Or I must stay in bed.

CMT pain is real.

My pain doctor looked at me on the first day and said, " We can see you've got a

real problem here, and we are going to take care of you. "

Many states have had to pass laws to ensure that patients are not denied pain

control, and in fact during the period I lived abroad, i.e. 14 years prior to

2007, there was a revolution in thinking in both the medical followed by the

political community… legislation was passed which guaranteed one, at least in

certain states, the rights to opiate medication for palliation if the patient so

chooses.

I had determined that opiates worked very well on my pain after my tendon

transfer operations when I was 15 and 16. When I would need pain medication for

accidents thereafter, sprained ankles and dislocated knees, I asked for one I

knew worked… Percocet… which is one of the drugs that helped me during the late

90s and 2000s, albeit by another name.

The doctors answer was, “no, I think people like to take those.” And he

proceeded to give me something less effective.

By 2007, the doctors had no problem with 40 mg of OxyContin per day. Thank God

the pain has receded somewhat, and I don't have to use that drug anymore. It's

effective, but it side effects are difficult to endure and the delivery method,

a pill, is inherently flawed as a delivery method for palliative substances

taken on the long-term basis.

Just a few thoughts in support.

[Guest guest]

Thanks ,

Is there somewhere i could find this data and show it to my pain management dr?

maybe i could possibly print it out to take with me to my next visit. You are

right tho, in my opinion they ONLY want to diagnose you and then be done with

you.. on to the next one i guess.. my neurologist thinks there is NO PAIN

associated with it either,but HE ISN'T The ONE living with it. Also the last

time i had a EMG done, the " specialist " that done the procedure wasn't thrilled

when i had to tell him to STOP, it was just Hurting way too much!! he acted as

if i were Lying to him. and you are also right in them thinking that you are a

" junkie " b/c you want some kind of relief.. this is totally Unacceptable, what

can we do?? anyone with any suggestions?? thanks so much everyone so far for

responding to me, i see that i am NOT alone in my quest here for some Pain

relief...MAY GOD BLESS US ALL.

Tracey

>

>

> Tracey: You know what is interesting is that I was at a conference recently

and the neurologist, who I respect a whole lot, mentioned that pain is not a

'normal' part of a CMT'er. So, I took that to mean that....you and I may be more

an exception to the general rule than the norm?? That may be the case but I

sometimes feel that the medical field does not talk much about neurological pain

from the CMT perspective.

[Guest guest]

Rashid,

I am very fortunate because I cannot blame much of my pain on the CMT at the

moment. I am having some pretty bad back issues at the moment, so if anything is

keeping me awake, it is that more than anything.

I have noticed more and more often a stabbing pain feeling in my toes. It is

sharp, comes on out of no where, and goes after only a few minutes. These only

happen when I am awake, and usually right after waking up. I have had more and

more leg cramps, mostly in the calf, and mostly in the right leg. None of this

is all the time and I consider myself extremely fortunate for that.

As to the fatigue at work... tough one. I am doing ok now that my schedule has

stabilized some. There were several months where I was working some rotating

hours, and it was getting to me pretty bad because it just totally wrecked any

regular sleep patterns. One week up very early, one week working later into the

evening so when I got home, I had too much to do and was too wired to wind down

for bed, but it was not late enough to really sleep in when morning came. That

was the worst part of it.

Now that my schedule is more stable, I get around the building pretty well, and

I certainly attribute a lot of that to my Blue Rocker braces. I have far more

spring in my step with them over the Richie braces. I am very fortunate because

when I need to be up, I can be, but when I am reaching a limit, I can head back

to my desk and do computer work.

By far, my biggest and most recent issue is my hands. In August when my son and

I went to Wayne State, Dr. Shy felt I had carpal tunnelin my left hand. I have

no real pain, but considerable numbness. After our blizzard last week and

spending 4 1/2 hours on the snowblower and a shovel, I was awakened with the

WORST pain ever in my RIGHT hand. It woke me up repeatedly during the night, I

took some Advil and it helped, but I truly wanted to cut off my thumb and get it

over with! Since that night, not nearly has much pain, but far more numbness now

in my right (dominant) hand.

Through all this, when my feet or legs are the worst (or my back) I do take

vicodin. That is the strongest I have taken. I did use something from my local

neurologist for a while, but I do not remember the name and I stopped it because

I did not like one of the side effects.

One of the most confusing things about CMT is how different it impacts each

individual, even within the same family but different members. We just have to

remember this, understand this, and let it help us as we try to help others.

Mark

> >

> > Hello Tracey,

> >

> > I am very much in your same situation, so you are far from alone. I have

> pain in my feet, legs, and hands. I take Cymbalta, Gabapentin, and a

> narcotic. Like yourself....the combination of the three only takes the edge

> off and there is NOT a day where I have total relief. Some days are worse

> than others but I try to plug along.

> >

> > The frustrating part is that I really don't want to stay home and on

> disability right now so I am working a job. The meds make me tired and my

> brain just does not hold attention or process things as fast as I would

> like. Without the medication I feel as sharp as a tack and keeping up

> [mentally] with the best of them.......but then I feel the burning and other

> negative sensations in my appendages. So, there is a trade off.

> >

> > I am hoping that this will not place me in a space where I will no longer

> be able to work but I may have to face that reality one day. In the

> meantime, I do feel rather blessed in that I can get up, walk, and do daily

> functions. The life of a CMT' er .....eh

> >

> > Rashid

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks for the info , i too am the same way,if my meds run out or i have

trouble getting them then i am NOT someone you would want to be around. The dr's

here obviously don't see this as a TRUE PAIN, i don't know why? as to the states

that approved that bill, or passed that law, how would i find out IF i am in one

of those? i mean i have been through Immortal Hell (please excuse me) but it is

so true! just trying to keep from hurting,( i also have severe lower

back pain,osteoarthritis) and to get something to help me with the pain. i

too take percocet, it works ok for me, i do not like the oxycontins i have only

taken them once but it made me SO SICK i thought i was honestly leaving this

world at the time. It was awful,and it hit me within a matter of just a few

mins, not even 5! when i had my neck surgery, they gave me dillada (?spelling)

but it didn't work for me, it only made my face feel like it was on fire, i

asked for morphine which is NOT

supposed to be as strong but works much better for me, WE all ARE different,

and our bodies react differently.. if i am not mistaken, the oxycontin is

supposed to be a stronger drug than percocet? but the percocet works better for

me, it does NOT however get rid of the pain as i have stated before, but it does

make it tolerable to a certain level.. the surgeon i had did NOT feel that i

needed pain meds, although i had just had major surgery, (cervical fusion of 3

discs). do hope that you have found some kind of relief.. May GOD BLESS & KEEP

YOU... Take care... tracey

From: <erj66@...>

Subject: Re: solutions for severe pain

Date: Sunday, January 2, 2011, 3:03 PM

And , you are NOT alone. Without the 5 medications I take for pain, all are

necessary and  none may be missed, otherwise I am miserable and cannot

concentrate. Or I must stay in bed.

CMT pain is real.

My pain doctor looked at me on the first day and said, " We can see you've got a

real problem here, and we are going to take care of you. "

Many states have had to pass laws to ensure that patients are not denied pain

control, and in fact during the period I lived abroad, i.e. 14 years prior to

2007, there was a revolution in thinking in both the medical followed by the

political community… legislation was passed which guaranteed one, at least in

certain states, the rights to opiate medication for palliation if the patient so

chooses.

I had determined that opiates worked very well on my pain after my tendon

transfer operations when I was 15 and 16. When I would need pain medication for

accidents thereafter, sprained ankles and dislocated knees, I asked for one I

knew worked… Percocet… which is one of the drugs that helped me during the

late 90s and 2000s, albeit by another name.

The doctors answer was, “no, I think people like to take those.†And he

proceeded to give me something less effective.

By 2007, the doctors had no problem with 40 mg of OxyContin per day. Thank God

the pain has receded somewhat, and I don't have to use that drug anymore. It's

effective, but it side effects are difficult to endure and the delivery method,

a pill, is inherently flawed as a delivery method for palliative substances

taken on the long-term basis.

Just a few thoughts in support.

[Guest guest]

hello all i was reading some older messages and found the pain management

discussion so heres my 2 cents worth. i have had pain all my life in my feet and

legs, cramps, restless legs, tingeling, knubness,weakness, bad balance,

stumbuling, tripping and on and on. i think my tolerance for pain is high and i

take percocet 10/325 to get through my days, it helps the pain but never gets

rid of it! i dont think anything can completely alleviate my pain! i fought my

doc for about 3 years about disabilty, i needed to provide for my family even

though he was telling me i am doing damage working but was bullheaded!( i am

still bullheaded by the way) we fused my right ankle trying to correct they way

the foot landed, walked on outside of foot which caused a sore-open wound- that

wouldnt heal, the surgery made the ankle roll out worse sooooooooooo after much

thinking and sleepless nights i agreed and went on disability, hardest thing i

have done so far cause in my mind i was giving up! depression quickly followed

and i felt worthless, my mind has gotten better with time but i still feel

guilty about so if your doc is suggesting disability you need to consider it and

take the advice it isnt gonna be easy!! my doc said what i have today is better

than what i will have tomorrow! something to think about, so disabilty i got

approved for and i became a housewife( i hate housework) but i also got to spend

more time with my boys! a major plus, since the ankle was still a problem, i had

repeated infections, amputation i brought up to my doc and august 09 it

happened, boy that was a tough decision also, depression followed and doubt

about did i do the right thing, over time the stump healed and a robot leg( my

son named it) i got and hey i am walking really good! so now we are working on

the left foot, it turns out also, had an open sore, sept 10 my doc removed

little toe, infection in the bone had turned the bone to powder, and got the

open spot to close up, it was done to extend my time with the foot, we both

agree that i will loose it someday. a readers digest story of my life.........i

am sure others have been down this road and i think its all worth it in the long

run, if the doc is suggesting to you listen and consider it! and pain is such a

part of my life is there any hope to be painfree?, i wonder how much other

people hurt or ache at the end of the day? people who have no physical problems,

anyhow i just wanted to let anyone new to this group they are not alone and

talking about it sure helps me, reading info on this cmt mess helps me! keep

your head up, never loose your drive! thanx for reading this i needed to vent,

jim.

>

>

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>

>

[Guest guest]

Bonnie,

Have you tried just plain tylenol? It isn't much, but it is something which I

found helped in the run up to my first pain drug which was nortriptyline, a pain

signal scrambler. And if you are in one of 15 states, cannabis works well on

neuropathic pain in the peripheral nervous system.

Also, if they gave you a huge dose of gabapentin to start, you may have suffered

severe side effects, as did I, but when ramped up, as it was a decade later, it

proved to be helpful and indispensable.

Just some thoughts.

[Guest guest]

I only use Advil. I am hit so hard by pain meds I can't stand to use

anything else.

[Guest guest]

I agree, . After trying so many pain meds that hit me like a rock

too, I only use Advil and cold packs for the burning pain. It's hard

to live with but live with it we must, it seems. EVERY pain medication

I have ever tried, and most have been prescription, has left me either

in a brain fog or in something like shock: cold, clammy and feeling

terrible. Even little old Tylenol leave me with a major hangover.

At one time I grew and tried marijuana. After all of that, with a

licence to do it from our government, it did not help. Then I tried

Sativex, a marijuana derivative in spray form. It helps only a little

and was terribly expensive.

It seems you are either without pain and without your ability to think

and do or with pain and suffering while you think and do. There has to

be something but those of us terribly sensitive to drugs that will let

us think and do without pain.

> ,___

[Guest guest]

My pain management doctor has me on Hydrocodone, it works for me. Definitely

helps with the pain. When I first started taking it, it made me what I call

" loopy " but not so much anymore now that I am used to it. I could not go on

without it. I am not one that handles all of this CMT pain very well. I want to

still have a life and I can if I am not in so much pain.

They also have me on Gabepentin, I really don't think that one is doing anything

for me. Then at night I take Cymbalta, a muscle relaxer and Requip.

I had gastric bypass surgery and my body does not absorb medications like normal

people, so I need more powerful pain meds for it too work.

Diane

[Guest guest]

WOW Jim what a story. I am glad to hear people venting here. Those of us with

CMT really need to vent sometimes just to keep our sanity. So you go for it! It

also helps use to learn what others lifes are like with CMT and how they are

coping with it. Jim thanks for sharing your story.

Diane

[Guest guest]

,

Thanks for the suggestion of Tylenol. I generally take Ibuprofen

since I sometimes have inflammation, but I will give Tylenol a try.

Bonnie