Guest guest Posted August 22, 2001 Report Share Posted August 22, 2001 That won't do you any good Becky - you know that. So come on girl get horizontal LOL Love Sue PS I think it is more in my hip because the pain goes sometimes to my groin almost like it's grinding - it is weird? But it hurts. As I've said I have had this before. I find it difficult to life my leg up normally but when it's like this. I can't lie on my back and lift my legs off the bed either - they just won't go. The registrar of the consultant I saw last time - he knew I've got CMT but couldn't go against his boss, when he asked me to lift my legs whilst lying on my back, I tried but couldn't. He said 'he thought I wouldn't be able to do that'. He was also the one who said my problems were axonal and definetely not demylinating. CMT 2! but as I said, he couldn't say that. Cover up is the word. 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 6:14 PM Subject: Re: [] Hip Pain -----Original Message----- From: Sue Horder-Mason <sue@...> < > Date: Wednesday, August 22, 2001 5:16 AM Subject: Re: [] Hip Pain >>>>Add S-1 disc. to my other post, and I think that's the one that hurts the worst! Hey I'm working on 3 hours sleep here, LOL, forgive my sleepy brain, ~>Becky M. . 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 -----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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2001 Report Share Posted August 22, 2001 Hi Sue, Yes, the hyperextended knees is what drove me to get my first AFO (brace), although the pain was in the KNEE. However, I'd been hyperextending my left knee for 30 years without any pain - amazing. The horrific back & hip pain I just got over was due to misalignment - some excessive padding in my footplate raised my leg up too high. Sue, you need an orthopedist or a physiatrist, bad. Please take care, Melody > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > Date: Wednesday, August 22, 2001 5:16 AM > Subject: Re: [] Hip Pain > . > > >>>Well ya didn't mention the hyperextended knee's! LOL... I have them too, plus they meet in the middle like this ><. Yes that could cause hip pain, been there done that one too. Didn't think about that early this morn. And Lamars post about the disc's could be the problem too as I have been there done that too, geesh, sounds like I'm falling apart! LOL... I have lumbar 4 & 5 to slip out quite often, and once is too often let me tell you! They slip or do what ever they do, and I'm on the floor with legs/hipe to weak to get up and have to have help. Isn't there some kind of Dr. close to you (orthopedic) that you can see? Even the emergency room at the hospital is better than waiting in pain. ~>Becky M. > 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 > @y... > Sent: Wednesday, August 22, 2001 10:34 AM > Subject: Re: [] Hip Pain > > > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2001 Report Share Posted August 22, 2001 Oh Melody The number of times I wish I'd landed up in the states is innumerable because I really believe that I would have stood a better chance in the US. I spoke to my mother recently and she said the doctors were clapping their hands that I remained out of callipers and yet that is what I needed. As I said I have never worn any type of AFO's but after reading Paolo's book 'Rehabilitation Management of Charcot-Marie-Tooth Disease I know that help is what I needed. However I bought the book for my sons rather than me because after reading the book I know my condition has gone to far but it hasn't for my children. That is not meant to be negative but I do miss being able to walk. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer ----- Original Message ----- From: mel2mars@... Sent: Wednesday, August 22, 2001 9:11 PM Subject: [] Re: Hip Pain Hi Sue, Yes, the hyperextended knees is what drove me to get my first AFO (brace), although the pain was in the KNEE. However, I'd been hyperextending my left knee for 30 years without any pain - amazing. The horrific back & hip pain I just got over was due to misalignment - some excessive padding in my footplate raised my leg up too high. Sue, you need an orthopedist or a physiatrist, bad. Please take care, Melody > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > Date: Wednesday, August 22, 2001 5:16 AM > Subject: Re: [] Hip Pain > . > > >>>Well ya didn't mention the hyperextended knee's! LOL... I have them too, plus they meet in the middle like this ><. Yes that could cause hip pain, been there done that one too. Didn't think about that early this morn. And Lamars post about the disc's could be the problem too as I have been there done that too, geesh, sounds like I'm falling apart! LOL... I have lumbar 4 & 5 to slip out quite often, and once is too often let me tell you! They slip or do what ever they do, and I'm on the floor with legs/hipe to weak to get up and have to have help. Isn't there some kind of Dr. close to you (orthopedic) that you can see? Even the emergency room at the hospital is better than waiting in pain. ~>Becky M. > 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 > @y... > Sent: Wednesday, August 22, 2001 10:34 AM > Subject: Re: [] Hip Pain > > > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Sue, you are not being negative. I am sure had I not had the good dr.s that I did at the time I got braces, I would certainly be in your shoes. When the first bad brace was prescribed by a dr. who wasn't up on this stuff, I was horrified at the physical restrictions I might face. I now remember the fear. I am so-o-o sorry this is happening to you...hope better days, or better doctors, will come. Hugs to you, Melody > > > > -----Original Message----- > > From: Sue Horder-Mason <sue@h...> > > @y... <@y...> > > Date: Wednesday, August 22, 2001 5:16 AM > > Subject: Re: [] Hip Pain > > . > > > > >>>Well ya didn't mention the hyperextended knee's! LOL... I > have them too, plus they meet in the middle like this ><. Yes that > could cause hip pain, been there done that one too. Didn't think > about that early this morn. And Lamars post about the disc's could be > the problem too as I have been there done that too, geesh, sounds > like I'm falling apart! LOL... I have lumbar 4 & 5 to slip out quite > often, and once is too often let me tell you! They slip or do what > ever they do, and I'm on the floor with legs/hipe to weak to get up > and have to have help. Isn't there some kind of Dr. close to you > (orthopedic) that you can see? Even the emergency room at the > hospital is better than waiting in pain. ~>Becky M. > > 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 > > @y... > > Sent: Wednesday, August 22, 2001 10:34 AM > > Subject: Re: [] Hip Pain > > > > > > > > -----Original Message----- > > From: Sue Horder-Mason <sue@h...> > > @y... <@y...> > > 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 In a message dated 8/22/2001 3:56:24 AM Central Daylight Time, sue@... writes: > I know this is secondary CMT caused by lack of treatment but it does hurt. > Love > Sue > Sue, I'm no doctor, but what you have described sounds a lot like my right hip was before I had a hip replacement. The problem was that over a period of years my muscles had tightened as a defense mechanism. I could not turn my ankle out or in without horrible pain. This was when I was NOT WALKING ,but sitting or in bed. Walking was a whole different set of pain. Anyway, after surgery and a very long period of physical therapy, it got better and I'm fine now. I know you are in a chair most of the time and maybe it's the immobility and lack of movement causing your muscles to hurt. Anyway, that's my 2 cents worth. Maybe if you could get someone to help you move your legs while you lay down it would help. Good luck, C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Hi : Sorry, I don't recall from previous posts, are you affected with CMT and had a hip replacement? The muscles " tightening as a defense mechanism " is interesting. Please tell me more. Melody > In a message dated 8/22/2001 3:56:24 AM Central Daylight Time, > sue@h... writes: > > > > I know this is secondary CMT caused by lack of treatment but it does hurt. > > Love > > Sue > > > > Sue, I'm no doctor, but what you have described sounds a lot like my right > hip was before I had a hip replacement. The problem was that over a period of > years my muscles had tightened as a defense mechanism. I could not turn my > ankle out or in without horrible pain. This was when I was NOT WALKING ,but > sitting or in bed. Walking was a whole different set of pain. Anyway, after > surgery and a very long period of physical therapy, it got better and I'm > fine now. I know you are in a chair most of the time and maybe it's the > immobility and lack of movement causing your muscles to hurt. Anyway, that's > my 2 cents worth. Maybe if you could get someone to help you move your legs > while you lay down it would help. Good luck, C > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Hi I've had my hips x-rayed recently and the bone structure is perfect no signs of damage at all. It is muscle damage that is causing my problems because my muscles have had to work even harder than normal. I don't know if this has anything to do with it but the muscles in the top of my legs and in my 'bum' are rock hard even though I'm overweight. has nothing to squeeze LOL. Maybe Paolo can answer why this is because to me it doesn't make sense and I don't have cellulite - crazy. Fat, forty and a solid bum. Seriously though I do show muscle loss in the top of my legs when I run my hands over that area there are gaps. It ain't 'alf fun this CMT you never know what will happen next. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer ----- Original Message ----- From: C1520@... Sent: Thursday, August 23, 2001 8:39 PM Subject: Re: [] Hip Pain In a message dated 8/22/2001 3:56:24 AM Central Daylight Time, sue@... writes: > I know this is secondary CMT caused by lack of treatment but it does hurt. > Love > Sue > Sue, I'm no doctor, but what you have described sounds a lot like my right hip was before I had a hip replacement. The problem was that over a period of years my muscles had tightened as a defense mechanism. I could not turn my ankle out or in without horrible pain. This was when I was NOT WALKING ,but sitting or in bed. Walking was a whole different set of pain. Anyway, after surgery and a very long period of physical therapy, it got better and I'm fine now. I know you are in a chair most of the time and maybe it's the immobility and lack of movement causing your muscles to hurt. Anyway, that's my 2 cents worth. Maybe if you could get someone to help you move your legs while you lay down it would help. Good luck, C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Melody in my posting to do I describe what you're talking about? Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer ----- Original Message ----- From: mel2mars@... Sent: Thursday, August 23, 2001 9:01 PM Subject: [] Re: Hip Pain Hi : Sorry, I don't recall from previous posts, are you affected with CMT and had a hip replacement? The muscles " tightening as a defense mechanism " is interesting. Please tell me more. Melody > In a message dated 8/22/2001 3:56:24 AM Central Daylight Time, > sue@h... writes: > > > > I know this is secondary CMT caused by lack of treatment but it does hurt. > > Love > > Sue > > > > Sue, I'm no doctor, but what you have described sounds a lot like my right > hip was before I had a hip replacement. The problem was that over a period of > years my muscles had tightened as a defense mechanism. I could not turn my > ankle out or in without horrible pain. This was when I was NOT WALKING ,but > sitting or in bed. Walking was a whole different set of pain. Anyway, after > surgery and a very long period of physical therapy, it got better and I'm > fine now. I know you are in a chair most of the time and maybe it's the > immobility and lack of movement causing your muscles to hurt. Anyway, that's > my 2 cents worth. Maybe if you could get someone to help you move your legs > while you lay down it would help. Good luck, C > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Becky I've been thinking about what you said regarding emergency rooms. There have been to many nights that I have cried with pain and bless him has held me, talked to me etc until 5 in the morning when sheer exhaustion has forced me to sleep. But I can lie in the mornings but he has to go to work. And thinking about it why not call an ambulance and go to the hospital, 'normal' people would not not accept or cope with the pain. I had to rush my mother to the hospital one night with severe pain but I just shut up and put up with it - very silly really and in doing so maybe the med pros would take me seriously. It's not a scam because I even had to change my car to one that was easier and lighter to drive because the old one was so heavy and after driving it for 60 miles caused me serious problems which were confirmed by my GP. It's fine to look at finding an 'easy' life but it is expensive. That is not fair. I'm still in pain with this hip but nothing I can't manage and I'm still going to France on Sat - what the hell I've lived in pain all my life. Regarding walking the pain I had with that (due to ignorance of CMT) I put down to the fact that man was not expected to walk on two legs and it wasn't until I met that I felt safe enough to ask whether walking hurt him and in the nicest way he laughed at my theory. LOL. This goes back to what we conceive as normality or not. I had a doctor recently ask me if the things he was doing felt normal and because of knowledge and understanding I was able to answer him truthfully. 'I don't know what normal means' That was liberating. Sorry to go on but you know me - LOL 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 6:09 PM Subject: Re: [] Hip Pain -----Original Message----- From: Sue Horder-Mason <sue@...> < > Date: Wednesday, August 22, 2001 5:16 AM Subject: Re: [] Hip Pain . >>>Well ya didn't mention the hyperextended knee's! LOL... I have them too, plus they meet in the middle like this ><. Yes that could cause hip pain, been there done that one too. Didn't think about that early this morn. And Lamars post about the disc's could be the problem too as I have been there done that too, geesh, sounds like I'm falling apart! LOL... I have lumbar 4 & 5 to slip out quite often, and once is too often let me tell you! They slip or do what ever they do, and I'm on the floor with legs/hipe to weak to get up and have to have help. Isn't there some kind of Dr. close to you (orthopedic) that you can see? Even the emergency room at the hospital is better than waiting in pain. ~>Becky M. 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 -----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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Sue: please act on what Becky said (after France!)- ANYTHING to get someone to listen to you. You are one tough cookie - I know it's hard to whine. I know the 2 times in my life that were 'crisis' times medically, I was basically a self-referral. Can you have your sweet husband drive you to emergency without calling the ambulance? If that's what you've got to do to get some attention, go for it. That's what they're there for. <<. 'I don't know what normal means' That was liberating.>> Boy, I think I've said that in my mind hundreds of times. Take care my dear, Melody > Becky I've been thinking about what you said regarding emergency rooms. There have been to many nights that I have cried with pain and bless him has held me, talked to me etc until 5 in the morning when sheer exhaustion has forced me to sleep. But I can lie in the mornings but he has to go to work. And thinking about it why not call an ambulance and go to the hospital, 'normal' people would not not accept or cope with the pain. I had to rush my mother to the hospital one night with severe pain but I just shut up and put up with it - very silly really and in doing so maybe the med pros would take me seriously. It's not a scam because I even had to change my car to one that was easier and lighter to drive because the old one was so heavy and after driving it for 60 miles caused me serious problems which were confirmed by my GP. > It's fine to look at finding an 'easy' life but it is expensive. That is not fair. > I'm still in pain with this hip but nothing I can't manage and I'm still going to France on Sat - what the hell I've lived in pain all my life. > Regarding walking the pain I had with that (due to ignorance of CMT) I put down to the fact that man was not expected to walk on two legs and it wasn't until I met that I felt safe enough to ask whether walking hurt him and in the nicest way he laughed at my theory. LOL. > This goes back to what we conceive as normality or not. I had a doctor recently ask me if the things he was doing felt normal and because of knowledge and understanding I was able to answer him truthfully. 'I don't know what normal means' That was liberating. > Sorry to go on but you know me - LOL > 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 > @y... > Sent: Wednesday, August 22, 2001 6:09 PM > Subject: Re: [] Hip Pain > > > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > Date: Wednesday, August 22, 2001 5:16 AM > Subject: Re: [] Hip Pain > . > > >>>Well ya didn't mention the hyperextended knee's! LOL... I have them too, plus they meet in the middle like this ><. Yes that could cause hip pain, been there done that one too. Didn't think about that early this morn. And Lamars post about the disc's could be the problem too as I have been there done that too, geesh, sounds like I'm falling apart! LOL... I have lumbar 4 & 5 to slip out quite often, and once is too often let me tell you! They slip or do what ever they do, and I'm on the floor with legs/hipe to weak to get up and have to have help. Isn't there some kind of Dr. close to you (orthopedic) that you can see? Even the emergency room at the hospital is better than waiting in pain. ~>Becky M. > 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 > @y... > Sent: Wednesday, August 22, 2001 10:34 AM > Subject: Re: [] Hip Pain > > > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Bless you Melody you're so right. I have a choice of two hospitals in my area. One I wouldn't go to because I've shouted at their resident Neurologist (he's the guy who first said I didn't have CMT although he knows nothing about it) and I'm going to sue them. But I haven't started on the other yet LOL. And yes would drive me in not a problem but to be honest it's not something we've thought about doing before. Sometimes I've called the doctor out (not in the night - they only come out if you're dying and then they ask if you can wait until morning) but he doesn't know anything about CMT either so I'm on to a loser then. Ah - well. Do you know that song from the sixities 'We shall overcome' we will 'one day.' Take care and thank you Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer ----- Original Message ----- From: mel2mars@... Sent: Friday, August 24, 2001 1:53 AM Subject: [] Re: Hip Pain Sue: please act on what Becky said (after France!)- ANYTHING to get someone to listen to you. You are one tough cookie - I know it's hard to whine. I know the 2 times in my life that were 'crisis' times medically, I was basically a self-referral. Can you have your sweet husband drive you to emergency without calling the ambulance? If that's what you've got to do to get some attention, go for it. That's what they're there for. <<. 'I don't know what normal means' That was liberating.>> Boy, I think I've said that in my mind hundreds of times. Take care my dear, Melody > Becky I've been thinking about what you said regarding emergency rooms. There have been to many nights that I have cried with pain and bless him has held me, talked to me etc until 5 in the morning when sheer exhaustion has forced me to sleep. But I can lie in the mornings but he has to go to work. And thinking about it why not call an ambulance and go to the hospital, 'normal' people would not not accept or cope with the pain. I had to rush my mother to the hospital one night with severe pain but I just shut up and put up with it - very silly really and in doing so maybe the med pros would take me seriously. It's not a scam because I even had to change my car to one that was easier and lighter to drive because the old one was so heavy and after driving it for 60 miles caused me serious problems which were confirmed by my GP. > It's fine to look at finding an 'easy' life but it is expensive. That is not fair. > I'm still in pain with this hip but nothing I can't manage and I'm still going to France on Sat - what the hell I've lived in pain all my life. > Regarding walking the pain I had with that (due to ignorance of CMT) I put down to the fact that man was not expected to walk on two legs and it wasn't until I met that I felt safe enough to ask whether walking hurt him and in the nicest way he laughed at my theory. LOL. > This goes back to what we conceive as normality or not. I had a doctor recently ask me if the things he was doing felt normal and because of knowledge and understanding I was able to answer him truthfully. 'I don't know what normal means' That was liberating. > Sorry to go on but you know me - LOL > 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 > @y... > Sent: Wednesday, August 22, 2001 6:09 PM > Subject: Re: [] Hip Pain > > > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > Date: Wednesday, August 22, 2001 5:16 AM > Subject: Re: [] Hip Pain > . > > >>>Well ya didn't mention the hyperextended knee's! LOL... I have them too, plus they meet in the middle like this ><. Yes that could cause hip pain, been there done that one too. Didn't think about that early this morn. And Lamars post about the disc's could be the problem too as I have been there done that too, geesh, sounds like I'm falling apart! LOL... I have lumbar 4 & 5 to slip out quite often, and once is too often let me tell you! They slip or do what ever they do, and I'm on the floor with legs/hipe to weak to get up and have to have help. Isn't there some kind of Dr. close to you (orthopedic) that you can see? Even the emergency room at the hospital is better than waiting in pain. ~>Becky M. > 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 > @y... > Sent: Wednesday, August 22, 2001 10:34 AM > Subject: Re: [] Hip Pain > > > > -----Original Message----- > From: Sue Horder-Mason <sue@h...> > @y... <@y...> > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 In a message dated 8/23/2001 3:20:09 PM Central Daylight Time, mel2mars@... writes: > Sorry, I don't recall from previous posts, are you affected with > CMT and had a hip replacement? The muscles " tightening as a defense > mechanism " is interesting. Please tell me more. > > Melody > Yes, I have CMT and I had a hip replacement 2 years ago. That was after 2 years of excruciating pain that my then doctor told me was from CMT. I kept telling him that he was not the regular pain, but he wouldn't listen. Told me that I just needed to learn how to live with pain! I told him I had been living with pain for years, but this was different. My primary care doctor got furious and sent me to another doc who x-rayed me that day. He said he couldn't believe I was actually walking around. A few months later I had the replacement and wish I had done it 2 years earlier. And yes I did let that first doctor know what happened and that I was telling everyone I knew about it. It was the physical therapist who explained about the muscles and worked with me for months to get them right again. It's weird though, because now if I stumble, those same muscles tighten up and get sore. I guess it's a reaction that they haven't unlearned! C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Here's a question for you all. I know that gallbladder problems are associated with pain in the upper back and right shoulder area, but is it ever also associated with pain in the right hip? I'd had problems with my right hip but the doc couldn't find anything actually wrong with it. The pain went away for no apparent reason and comes back periodically. It just occurred to me that maybe there is a connection. I will pay more attention to the coming and going of the pain from now on. But in the meantime I thought I would pose the question out here to see if anyone else has ever experienced anything similar. It isn't debilitating pain or anything - just discomfort. Thanks in advance, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 In a message dated 20/1/02 19:47:52 GMT Standard Time, Rachd1961@... writes: This sounds more like sciatica than gallbaldder problems. Does the pain/discomfort go right down the leg as well? nne > Here's a question for you all. I know that gallbladder problems are > associated with pain in the upper back and right shoulder area, but is it > ever also associated with pain in the right hip? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 In a message dated 1/20/02 3:01:11 PM Eastern Standard Time, marianne2406@... writes: > This sounds more like sciatica than gallbaldder problems. Does the > pain/discomfort go right down the leg as well? > nne > No, it's just right in the hip area. My chiropractor couldn't find anything! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 In a message dated 1/20/02 3:12:31 PM Eastern Standard Time, westoo@... writes: > I have cured myself of sciatica by alternating hot and cold water over the > area.....one minute as hot as I can stand, then one minute as cold as the > water could get...about 7 alternations, ending with hot. This works > miracles.....Betsy > Thanks, I will keep this in mind if I have ever have a problem with sciatica. If the hip pain recurs I will try that also. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Thanks for your thoughts and the website reference. I did see a chiropractor - one that I would trust with my life - when the hip pain was happening and he didn't find anything misaligned with my spine. It has come and gone and that's why I just had a fleeting thought that since it was on the right side it might be somehow remotely connected with the gallbladder symptoms. I'll take note of it if/when it comes back again and see if it correlates with anything else. Thanks again, In a message dated 1/20/02 4:58:15 PM Eastern Standard Time, adriennelynn1@... writes: > Thought I'd take a stab at your question. I guess there could be many > reasons for hip pain, one of them being, as Dr. says, a toxic > liver. Another reason that immediately comes to mind that could cause > hip pain is misaligned vertebra, which would cause undo pressure on > nerves leading to your hip. Over time, like a car that has it's front > end out of alignment, your hip joint wears out. Check out this website > for more info: www.idealspine.com > Betsy gave a remedy for acute hip pain that works well, because it > causes increased blood flow to the area, helping to flush out damaged > tissue. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 ----- Original Message ----- From: <marianne2406@...> <gallstones > Sent: Sunday, January 20, 2002 1:58 PM Subject: Re: hip pain I have cured myself of sciatica by alternating hot and cold water over the area.....one minute as hot as I can stand, then one minute as cold as the water could get...about 7 alternations, ending with hot. This works miracles.....Betsy > In a message dated 20/1/02 19:47:52 GMT Standard Time, Rachd1961@... > writes: > > This sounds more like sciatica than gallbaldder problems. Does the > pain/discomfort go right down the leg as well? > nne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Hi , Thought I'd take a stab at your question. I guess there could be many reasons for hip pain, one of them being, as Dr. says, a toxic liver. Another reason that immediately comes to mind that could cause hip pain is misaligned vertebra, which would cause undo pressure on nerves leading to your hip. Over time, like a car that has it's front end out of alignment, your hip joint wears out. Check out this website for more info: www.idealspine.com Betsy gave a remedy for acute hip pain that works well, because it causes increased blood flow to the area, helping to flush out damaged tissue. Adrienne --- Rachd1961@... wrote: > Here's a question for you all. I know that gallbladder problems > are > associated with pain in the upper back and right shoulder area, but > is it > ever also associated with pain in the right hip? I'd had problems > with my > right hip but the doc couldn't find anything actually wrong with it. > The > pain went away for no apparent reason and comes back periodically. > It just > occurred to me that maybe there is a connection. I will pay more > attention > to the coming and going of the pain from now on. But in the meantime > I > thought I would pose the question out here to see if anyone else has > ever > experienced anything similar. It isn't debilitating pain or anything > - just > discomfort. > > Thanks in advance, > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 HELLO BARB, I AM THINKING ABOUT THIS PAIN ON THE HIPS. I HAVE DONE MY BONE SCAN BUT DONT'T KNOW THE RESULTS YET.I HAVE BEEN TAKING FOSAMAX FOR 2 YEARS BECAUSE OF A MILD OSTEOSPOROSE. ANYWAY. MY DOCTOR TOLD ME THAT OSTEOSPOROSE DOES NOT CAUSE ANY PAIN..HUMMM? I DO NOT KNOW ABOUT IT VERY WELL, BUT MAYBE THAT COULD BE THE CAUSE OF MY HIPS PAIN...WHO KNOWS? TALK TO YOU LATER! JOANA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2005 Report Share Posted June 5, 2005 Joana, My right hip hurts a lot lately - I think the pain is greater when I have to walk more than usual or even if I sit a long time in one position (as in car for long trip). I have attributed it to arthritis but who knows - could be part of CMT. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2005 Report Share Posted June 5, 2005 Dear June, How long you have been having this pain? Have you seing a doctor? It would be a good idea to see why you are feeling like that June. Are you taking any medication for the arthritis? I am sorry to hear about it. I do know that arthritis cause pain but surely you need some help with this. I wish you all the best! Take care Joana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2005 Report Share Posted June 5, 2005 Joana, I take aspirin for the arthritis. My primary Dr. isn't concerned - but then he never is. He seems to think it is part of the aging process, and for the most part it probably is. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 Hello everyone, Regarding hip pain - my brother was told that hip displasia was very common in those with CMT. He had hip replacement surgery at age 55 in February at NYC center. He is for the first time in years, remarkably pain free! Also, I take Neurontin 400 mg twice a day for pain. Also take Etodolac (an old NSAID) twice a day and Effexor 37.5 mg once a day. This combination helps a lot with nerve pain. Remember that when we use our muscles inefficiently there is a domino effect. For example, we don't use our lower legs properly so that effects the knees and then the knees effect the hips which effects the spine, etc. I was told that the fatigue is very real and comes from having to think all the time about body position and where to put our feet, how to use the hands, etc. Also, the " double-jointedness " comes from the muscles not working together to hold the joints in proper position. Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2005 Report Share Posted July 19, 2005 Thanks Penny, That surely make a lot of sense. I have double joint everywhere...and can not be on my tip toes anymore... only when I am inside the pool. So funny because before I used to walk on my tip toes...can you imagine it? That is to show how this syndrome somehow progressed. I do not take any painkiller because my pain is not so bad, but I do take many supplemments to help me...like alpha lipoic acid, malic acid, magnesium, black strap molasses, manuka honey, vitamins C and E, seeds, fish oil, and linseed oil! Found that those suplemments has been great so far. Yes, there are days I feel a bit down and the weather plays a lot with me too. Realized also that when I do not sleep well my muscle gets a bit ache. I do take Peruvian maca for energy! Take Care Joana Quote Link to comment Share on other sites More sharing options...
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