Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Sue, I have enjoyed your postings. You are so positive to have gone through, and continue to go through the whole ?? CMT ordeal. I do hope and pray you find the answers you so deserve, and that one day your pain will ease. Take care. ----- Original Message ----- From: " Sue Horder-Mason " <sue@...> < > Sent: Thursday, August 23, 2001 4:37 PM Subject: Re: [] Hip Pain > 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 Thank you . When I'm away I will get rest because I won't have to walk we're staying in a gite all on one level - bliss. I've a flight of stairs in my house and don't have a downstairs bathroom - you want to see me coming down on my bum - very slowly and very gently - not a pretty sight. LOL Take care Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer ----- Original Message ----- From: Sent: Friday, August 24, 2001 7:20 AM Subject: Re: [] Hip Pain-To Sue Sue, I have enjoyed your postings. You are so positive to have gone through, and continue to go through the whole ?? CMT ordeal. I do hope and pray you find the answers you so deserve, and that one day your pain will ease. Take care. ----- Original Message ----- From: " Sue Horder-Mason " <sue@...> < > Sent: Thursday, August 23, 2001 4:37 PM Subject: Re: [] Hip Pain > 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...
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