Re: Is pain normal?

[Guest guest]

,

I wish I could understand better this pain...You said that you feel

pain while you are in bed? what kind of pain is that? heavy pain?

Are you able to walk a bit?

I think it is a great idea to see a good doctor , you need

to find out why this pain is so bad...need to find the cause! I had pain before,

but mine was because I did walk too much or having the wrong shoes, etc... So

many reasons could be there. I really hope that you could find a good doctor to

help you finding the cause of it first...

Please, feel free to email me anytime!

All the best wishes to you.

Joana

[Guest guest]

,

While you are waiting to see your doctor, try to have some feet

bath...with warm water, sea salt and apple vinegar...make some good

massage there...relaxing as long you can...

Another good thing would be Arnica cream...massage with it...If you

have anyone that could give you a very gentle massage...it may help

you with the circulation... Those things could help you for some moments , but

it is not a cure...It was just an idea.

Take Care and Good Luck!

Joana

[Guest guest]

Hi :

I too have a great deal of pain in my feet, legs, hands and fingers. I also have

the burning sensation, normally on the top part of my feet, and the pain is

quite severe.

I have been taking 800 mg of Neurontin and 50 mg. of Amitriptilyne before going

to bed at night. This has helped me a great deal. I have never been to a pain

clinic but my family doctor is very knowledgeable about pain and how to manage

pain. He actually did a study on pain and what medications are best for what

pain. He believes Tylenol 3s may do a better job at dealing with neuropathic

pain, but Gabapentin (Neurontin) does a GREAT job without the side effects of

Tylenol.

Is pain normal? I would have to say yes for anyone who had CMT. That is my

opinion after learning more about CMT in the past few years.

This site is one of the best sources of information on CMT and its related

symptoms.

Regards,

[Guest guest]

Thanks for the information. I currently use Mobic, Darvacet and Quinine. Even

with that cocktail I have pain. I'm awaiting a new ankle brace. Hopefully, that

will help some. The guilt bothers me more than anything else. I know I'm not the

best person to live with. I'm unpleasant most days because I don't get enough

rest.

Rosie

[Guest guest]

,

I can really relate to the pain you are having. Years ago I had plantar fascia

surgery on the left foot which took away most of the pain I was having at the

time. Now I only have the " tired, achy " feeling in that foot. A little over a

year ago I started having the same pain in the right foot. I thought okay no

problem..I'll have the same surgery and be feeling great in no time. During the

past year I was diagnosed with CMT type 2 and had the plantar fascia surgery on

the right foot. I had really high hopes to be out of pain. No such luck.

It seems the surgery didn't work for me this time and as I go back to work

tomorrow, (after being off for 10 weeks and going through 6 weeks of physical

therapy), I am right back at the beginning with a huge amount of pain in the

right foot, heel, and calf. I have a mostly sit down job but was informed this

weekend that I will be on overtime until October so I'm looking at an extra 17

hours of work per week.

Needless to say I had a slight breakdown this weekend feeling like I had surgery

for nothing and am not looking forward to the exhaustion and fatigue that I know

is going to hit me like a ton of bricks this week.

I don't have the burning sensation like I used to but I didn't really feel that

until the winter months for some reason. Like Gretchen said, I too take every

opportunity to get my feet into cold water. I've been on Neurontin for months

and months, always upping the dosage as it seems to lose it's effectiveness for

me after a few weeks. I've been on Mobic since the surgery with no results. I

wear orthotics in my sneakers and as long as I have them on I can

manage for a few hours.

However, at bedtime I truly suffer. I have my boyfriend massage my feet ALOT!

Getting to sleep is difficult because I can't stop moving

my feet and legs and they ache for hours. I've never been to a pain clinic but I

am always willing to try anything to stop the pain. I think you should go and

see what they have to offer. You never know what could be the one thing to stop

the pain. Good luck to you.

Elaina/NY

[Guest guest]

Hi ,

I have severe pain with my CMT and other diseases, and have been to a

Pain Clinic. The pain clinic did not do me any good because the doctor

decided to try injections in my back to help with the pain and I ended up not

being able to walk or feel ANYTHING even pressure for almost a month and was

completely bed-ridden during that period unless my husband brought my wheelchair

up to me and got me downstairs that way.

The doctor then decided that my PCP could dispense my pain medications and so

after visiting with her 3 times I have not seen her again, nor will I because I

WILL NOT submit to those injections again.

On the bright side, my pain is being controlled to some extent with

opioid pain medications and antiseizure medications that help with

neuropathic pain. Granted my pain is NEVER below a 6-7 but for someone that was

in 8-10+ pain levels for 22 years the lower levels of pain are more than enough

to keep me happy and functioning to some extent at home, so that I can take care

of my children and be a wife to my husband.

If you have any questions please feel free to contact me off-group at

guppyaddict1871@....

Hugs,

ita

[Guest guest]

Hi again Gretchen and ,

For me the burning pain is the worst when my feet and hands get COLD,

but no matter how comfortable the temperature is my feet feel like they are on

fire but are far from actually being hot. My neurologist informed me the last

time that I saw him that the burning pain is called " causalgia " .

ita