hip pain

March 14, 2000

,

I have a lot of experience with hip pain, but I took the " easy " way out.

I've had them both replaced. Do you have joint destruction in the joint?

Most surgeons won't do the surgery unless there is obvious destruction along

with pain. Unfortunately, I'm not much help in trying to alleviate the pain

without surgery. I've tried heat/cold like we do for other joints, but I

don't think it could ever get deep enough to reach the source of the pain.

Of course the obvious, pain medicine, would take the edge off, but nothing

would help much once the pain was constant and extended down my leg. On the

bright side, my replacements have gone GREAT! I have NO PAIN in either hip

and can walk normal (except for my painful ankle, now!) Anyway, good luck

at the rheumy.

Kim

September 5, 2000

thanks kathleen for the info on piriformis syndrome. will talk to the dr at

my next appt,

julee

September 5, 2000

carolyn,

thanks for sharing your thoughts on hip pain. according to my pt, my hip

doesn't pop, it klunks. going back to the dr for xrays soon.

julee

September 5, 2000

In a message dated 9/5/00 7:20:23 PM, ebbwater@... writes:

<< thanks kathleen for the info on piriformis syndrome. >>

Sorry, you were one step ahead of me.

Good luck.

Kat

September 6, 2000

Hmmm. Never thought of a " klunk " rather than a " pop. " I'll have to

check that out myself! Maybe we can start our own percussion section!

LOL, Carolyn

> carolyn,

> thanks for sharing your thoughts on hip pain. according to my pt,

my hip

> doesn't pop, it klunks. going back to the dr for xrays soon.

> julee

October 6, 2000

In a message dated 10/5/00 8:23:33 PM Central Daylight Time, cat926@...

writes:

<< I am now wondering after reading all the previous posts if my hip pain

and thigh pain is due to the CMT >>

, Two years ago there was an article in QUEST,(I think) that addressed

hip problems associated with CMT. It was waiting for me with all my mail that

had piled up while I was having a hip replacement! I had also had a lot of

thigh pain and it turned out to be caused by the way I would instinctively

protect my hip from movement. Apparently the way that we walk, limp, hobble,

etc. has a major impact on the entire body, not just the " affected " areas.

C

October 6, 2000

In a message dated 05/10/00 10:22:11 PM Pacific Daylight Time,

C1520@... writes:

<< Apparently the way that we walk, limp, hobble,

etc..

C >>

your so poetic.

jenny

October 6, 2000

,

This is so true and probably one of the biggest unrecognized problems out

there. Another example of an issue that just has that common sense ring to

it. How we compensate for weakness in one part of the body can, over time,

cause damage to another part, even if that part (knee, hip, etc) is ot

originally affected.

Ruth

>From: C1520@...

>Apparently the way that we walk, limp, hobble,

>etc. has a major impact on the entire body, not just the " affected " areas.

> C

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

October 6, 2000

In a message dated 10/6/00 9:15:36 AM Eastern Daylight Time,

warrenre@... writes:

> How we compensate for weakness in one part of the body can, over time,

> cause damage to another part, even if that part (knee, hip, etc) is ot

> originally affected

Hello the House,

Remember the song, " Them Bones. " The hip bones connected to the thigh

bones, the thigh bones connected to the leg bones and so on. There you have

it.

Come to think of it you might be to young to remember that song.

E

April 9, 2001

I have at times had bad hip pain,I have had to take tylenol with my

other medicene;ultram and it helps,also a heating pad helps me.

April 9, 2001

In a message dated 4/8/2001 10:05:43 AM Eastern Daylight Time,

Vivien529@... writes:

<< My husband is having really bad pain in his left hip right now. He has

CMT

type 2. Does anyone else have hip pain, and if so what do you do to alleve

it >>

I too have bad hip pain. Usually in left hip, for two days now, right hip has

been hurting. I take Ultram for pain, use heat and ice alternately, this

helps some.

April 9, 2001

In a message dated 4/9/2001 5:48:37 AM Pacific Daylight Time,

ktbugg54@... writes:

> << My husband is having really bad pain in his left hip right now. He has

> CMT

> type 2. Does anyone else have hip pain, and if so what do you do to alleve

> it >>

>

When my hip hurts I get an adjustment at the chriopractor.

jenny

April 10, 2001

i too suffer from bad hip pain and i can't seem to do anything about it. i

don't take any pain meds because i can't seem to find any to help me out

right or the right doseage. i use heat sometimes but it doesn't help, i

can't seem to get the heat bag in the right spot. it gets so bad that i

don't go anywheree because it hurts too much, i stay at home and rest. after

i get home from school i am so tired and then usually i have to cook dinner

because my mom is at work but my other sisters won't help at all so i get

pushed to the limit. i don't know what would help maybe a hot bath? heat

pads? pain meds? i am at a loss

alisha

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

April 10, 2001

I would certainly cook for myself and your Mom to send

your sisters a message.

I just stiched from vicodine to fentanyl pain patch and

now on oxydonel. So far seems of although back and hip

pain still prevelant but bearable.

I will probably got to the pain pump soon.

> i too suffer from bad hip pain and i can't seem to do anything about it. i

> don't take any pain meds because i can't seem to find any to help me out

> right or the right doseage. i use heat sometimes but it doesn't help, i

> can't seem to get the heat bag in the right spot. it gets so bad that i

> don't go anywheree because it hurts too much, i stay at home and rest. after

> i get home from school i am so tired and then usually i have to cook dinner

> because my mom is at work but my other sisters won't help at all so i get

> pushed to the limit. i don't know what would help maybe a hot bath? heat

> pads? pain meds? i am at a loss

>

> alisha

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

April 11, 2001

In a message dated 4/9/2001 9:54:17 AM Central Daylight Time,

ktbugg54@... writes:

> << My husband is having really bad pain in his left hip right now. He has

> CMT

> type 2.

Has he had his hip x-rayed? For 2 years I had a doctor tell me that there was

nothing wrong with my hip, that it was " just " CMT pain and I should learn to

live with it! What a jerk! My primary care doctor sent me to another

orthopedic doc and he x-rayed immediately. My right hip was bone on bone!

They think I developed Arthritis from the unnatural strain on the hip joint

from the way I walk. I had a hip replacement and it's the best thing I ever

did to help myself. C

April 11, 2001

In a message dated 4/10/2001 2:14:05 PM Central Daylight Time,

fivertherabbit@... writes:

> . i don't know what would help maybe a hot bath? heat

> pads? pain meds? i am at a loss

>

Alisha, try icing it for 20 minutes at a time. That will help with pain and

inflammation. But, you really need to get that hip checked out. It could be

bursitis and that can be treat very easily with a cortisone injection. It

could be arthritis or a number of other things. Get that hip checked out!

C (Hope it gets better.)

April 11, 2001

Hi Alisha:

I too have lot's of hip pain, as well as nerve pain which shoots up & down

my entire body. My hip pain is deep inside my body. Message, heating pad

wouldn't help. I did use a heat orpment called " ice " . Atheles use it for

sore muscles. It is sold in drug stores. For the longest time I just took

advil for all my pain, I advised my doctor this was helping me manage the

pain. He gave me a limited dose of advil, I could take in a day. Even with

this advil, I noticed my qualaty of life was becoming non-existed. When the

time came that even the maximum dose of advil as not help, he put me on

Neurontin 400mg. Wow; this was wonderful. I was up and about just like my

old self. Neurontin, gave my a new lease on life.

I understand when you say you don't want to take prescription drugs,

Alisha. I hate taking pills, I would do everything and anything to avoid

taking drugs. Sports were my life, I love to be active and live a clean

natural life.

We all have the right to live our lives the way we wish. This is just

what helped me.

Alisha; has your doctor x-rayed your hips. With this disease sometimes

if it show symptoms early in children, their hips sockets do not develop

fully. My son doctor @ children hospital has x-rayed his hips twice now.

This was the last time, because he is 14 yrs. now.

Alisha please remember, you are the most important one. We must do what

is best for us, or we can not take care of any one else. Dinner can always

be postponed, order-in, buy froze, even make your own sandwich will do.

Love Lee

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

April 14, 2001

lee, alisha here,

i have been on several different pain killers, and none have been effective

on me. it doesn't matter the dose, my body just doesn't take to it, i also

give plenty of time to get used to taking it, over several months but its

like taking sugar pills to me. i have had my hips x-rayed and had a bone

density test done, all normal. i have used gels that athletes use and

nothing, heat, cold, baths, soaks, run downs, reflexology, imagary and the

list goes on and nothing. i am in agony and can't voice it because people

hate to hear me complain about it all. when asked how i am i either lie or

say i am terrible but i am not going to talk about it but for the sake of my

sanity i am ok!! my friends r used to this but they can't understand at all,

no one really understands it at all. i am a 17 year old that is in so much

pain that to get up every morning is a chore. i push myself because its

expected of me too. i am saving any money i get to buy my meds and anything

else, my parents got mad when they had to refill, my dad's meds cost more

than mine and they made a big deal out of it. now i am almost broke and have

been unlucky to get employed. i can't get disability because there is a 4-6

month waiting list and i need money now!! i am also tried of buy meds that r

suppose to work and they don't for me, its a waste and i get so depressed

after that. i am afraid though because my knees r hyperextended that i am

causing damage to my knees and hips but i am told that i am not but its not

making my feel any better. i am becoming more dependant on my walker, i

don't want to but i have too. i don't do much at all and when i do i am

pushing myself further. well in my family, i am the only one to do anything

when my mom is at work, no one else will, they r off busy with their lives

with friends, boyfriends and work. that just leaves me, i have my friends

but i am too tired and in too much pain to do anything with them. my time

table at school has me isolated from everyone and its depressing. well if

dinner is post-poned then i will have to explain why and i am never in the

mood too at all. i just want to get it done and over with at that time. then

i head to my room to just sit on my bed and take a breather, i usually cry

then or just write in my diary. i got one when in 1994 for christmas, its a

1 year one, well its 2001 and i am just half way now!!

well this is long enough, talk to u later

alisha

" I am not crazy, I am just a teenager! "

http://home.talkcity.com/OceanBlvd/cmtx/index.html

ICQ # 47695812

for information on CMT go here

www.cmtint.org/

are u a kid or teenager with CMT???

join here if ur interested

CMTchildren-subscribe

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

May 4, 2001

Hi Alisha;

Thanks for the e-mail, it sure is good to hear from you. I am here and

when ever you feel like talking with someone. Please feel free, you can

e-mail me direct if you wish @ eemarilee@... or my ICQ 53339861.

This pain is unbelievable, I know. Here is some good news, I just got new

AFO's. These braces are new twisty one, an article in the CMT NEWSLETTER

Dec.1999. The material is very strong, the new shape is very supportive &

really helps with standing straight and steady. I find they make my thighs

and butt mucsle work to hold me up. Instead of my upper body holding me up.

Now learning to walk all over again, using the lower body only. I am

going to physio, to help with my lower back & hip pain.

Alisha; my heart just bleeds for all your difficulties. Keep your chin

up kiddo. Try not to spread yourself too thin. If you don't take care of

you, you'll be no good for anyone. I know it is easier said then done.

I'm a single mom with one son. We both have CMT. I look after me and

only do what I can. Even before I knew of this illness. If you take care of

yourself, will you be able to help others and they will have respect for

you. I love most of all, doing things I enjoy. Everyday I have fun,

whether it's volunteer work, joking around with my friends or a walk along

the ocean.

I like to share a little story with you. There are four of us kids in my

family. When we were teens, my older sister took it upon herself to look

after the household when mom was working later. Because it was done, there

was no issue. If she didn't mom would have to delicate chores. To this day

she still complains about that, she is 40 something. No one asked her to do

it & if she really didn't want to, she should not have. She believes that

if she didn't do it, no one would have. Wrong. If she didn't, we would all

have to pitchin. Everything was taken care, nothing left for anyone to do.

If you want to help out & you can, then great. It's wonderful you are so

responsible @ such a young age, but as we become adults we are our only

caretakes. Remember, you are the child in this family unit, the parents are

responsible for making it work.

Alisha; I hope I didn't hurt your feelings, this is not my intent.

These are my feelings and background.

I hope to hear from you soon. Take care of yourself, kiddo

Lee E.

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

August 22, 2001

-----Original Message-----

From: Sue Horder-Mason <sue@...>

< >

Date: Wednesday, August 22, 2001 3:48 AM

Subject: [] Hip Pain

.

>>>>Hi Sue, maybe its sciatica (sp) ? I had that 2 years ago and the pain

dropped me flat to the floor. I had to have bed rest, ice packs first two days

then heat plus take Celebrex. Or since its your strong side, maybe its

tendonitis (sp) from over use of those muscles and tendons, they are working

harder to help the weaker side. If thats the case the same treatment above will

help temporary, until something can be done to help correct it if possible.

Loss of mobility may be due to CMT progressing or pain. Are bodies sometimes

react to pain by favoring the injured part and we don't know its happening,

until pain is removed, then we gain back the full use. Full use meaning what

ever you had just before what ever is causing the pain. Full use is different

for some of us, due to CMT, what ever the reason, get it checked out ASAP so

(1) you and we, (I'm nosey) will know the cause and (2) you will get help for

it, ~>Becky M.

Hi everyone

Help. Hip pain and more loss of mobility has struck again. If I twist my leg

only slightly a searing pain goes through my hip and I must admit it does cause

me to yell out. Any ideas. This has happened before and when the pain finally

goes away I've even less movement in my hip. It only affects the right one

(which was always my stronger side) the left hip although it is painful at times

I still have pretty good movement in it.

I know this is secondary CMT caused by lack of treatment but it does hurt.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

August 22, 2001

Becky thanks for reply. (What on earth are you doing up at this time in the

morning?) It's not sciatica (I've had that before) and I don't know about

tendonitis (never heard of it). What has happened and I am quoting from CMT - A

Practical Guide is 'The effect of bending forwards at the hips and the knee beng

pushed backwards (a physio told me my knees were going backwards 3 years ago) is

a severely distorted position when standing, and it is not uncommon for people

to complain of pain in th knees (mine are useless) because of this. This bendng

forwards at the hips also affects the upper body by putting additional strain on

the lower back (mine hardly moves) which causes problems in this area.

This is all due to having no support to help my muscle wastage and my body over

compensating due to it. Regarding getting it checked out I can't - I don't have

a doctor who can do it. They all keep chucking me off their lists. I'll have to

wait until I see Hilton- and I still haven't got an appointment yet and I'm

driving to France on Saturday. Just the dry land bits, we're crossing the

channel on a ferry. LOL.

Thanks again though I will rest it as much as possible.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

----- Original Message -----

From: Maxwell

Sent: Wednesday, August 22, 2001 10:34 AM

Subject: Re: [] Hip Pain