Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Hi : In regard to your daughter's lower back pain, there is a good chance that it is a result of the way she is walking or standing. I was diagnosed with " a hereditary neurological disorder " (not labeled CMT until this year - 15 years later) at the age of 16. I remember having back pain as a teenager because I didn't realize I had CMT and I would stand for long periods of time or walk without any orthotics in my shoes or AFO's. I still some times do not wear orthotics or AFO's but I know my limits more and I know that I will get lower back pain. amongst other things, if I overdo it. Like many with CMT, my feet have very high arches. I also have small feet and walk on the outside edges and balls of my feet; this provides me with very little surface area and support to stand for long periods of time and thus my back will feel the effects. I've noticed that I have less back and other pain since I began taking dietary supplements to aid with muscles and joints (Glucosamine and Chondroiton). Although may have just been diagnosed this past month, it is quite likely that she has had CMT for a while prior to the diagnosis - it's hard to say what symptoms are common for " newly diagnosed " people because many of us have CMT for decades before we are diagnosed. The effects of walking inccorectly or standing on ailing feet can cause back problems but can also cause knee and hip problems. These problems may not be due to the CMT itself, but due to the body putting too much pressure on other parts that try to compensate. Good luck with 's situation; these pains could be reduced over time by using devices to improve walking (shoe inserts, etc.) and by being more aware of physical limitations. The second part can be pretty tricky some times (knowing limits). Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2001 Report Share Posted April 26, 2001 Hi Marti: Good Morning!! Thank you so much for your response on 's back. I think whats going on is exactly what you're saying. She has the orthodics and they help some, but I'm taking her to my Chiropractor tomorrow and I think that will help. He is a wonderful guy and works with alot of people with CMT. has also been running a low grade fever everyday for the past week and she's not sick or anything, Have you heard about this with CMT? -----Original Message----- From: mmc3737@... [mailto:mmc3737@...] Sent: Wednesday, April 25, 2001 7:41 PM Subject: Re: [] Lower back pain... Hi : In regard to your daughter's lower back pain, there is a good chance that it is a result of the way she is walking or standing. I was diagnosed with " a hereditary neurological disorder " (not labeled CMT until this year - 15 years later) at the age of 16. I remember having back pain as a teenager because I didn't realize I had CMT and I would stand for long periods of time or walk without any orthotics in my shoes or AFO's. I still some times do not wear orthotics or AFO's but I know my limits more and I know that I will get lower back pain. amongst other things, if I overdo it. Like many with CMT, my feet have very high arches. I also have small feet and walk on the outside edges and balls of my feet; this provides me with very little surface area and support to stand for long periods of time and thus my back will feel the effects. I've noticed that I have less back and other pain since I began taking dietary supplements to aid with muscles and joints (Glucosamine and Chondroiton). Although may have just been diagnosed this past month, it is quite likely that she has had CMT for a while prior to the diagnosis - it's hard to say what symptoms are common for " newly diagnosed " people because many of us have CMT for decades before we are diagnosed. The effects of walking inccorectly or standing on ailing feet can cause back problems but can also cause knee and hip problems. These problems may not be due to the CMT itself, but due to the body putting too much pressure on other parts that try to compensate. Good luck with 's situation; these pains could be reduced over time by using devices to improve walking (shoe inserts, etc.) and by being more aware of physical limitations. The second part can be pretty tricky some times (knowing limits). Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 4/26/2001 8:55:20 AM Pacific Daylight Time, khampton@... writes: > . She has the orthodics > and they help some, but I'm taking her to my Chiropractor tomorrow and I > think that will help. He is a wonderful guy and works with alot of people > with CMT. has also been running a low grade fever everyday for the > past week and she's not sick or anything, Have you heard about this with > CMT? > > > How many people have CMT where you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 I'm not sure how many but I know he speaks at different groups. -----Original Message----- From: Mommy2Adam@... [mailto:Mommy2Adam@...] Sent: Thursday, April 26, 2001 8:09 PM Subject: Re: [] Lower back pain... In a message dated 4/26/2001 8:55:20 AM Pacific Daylight Time, khampton@... writes: > . She has the orthodics > and they help some, but I'm taking her to my Chiropractor tomorrow and I > think that will help. He is a wonderful guy and works with alot of people > with CMT. has also been running a low grade fever everyday for the > past week and she's not sick or anything, Have you heard about this with > CMT? > > > How many people have CMT where you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2009 Report Share Posted May 15, 2009 Hi Mark.. Get help as soon as you can. Your condition might get better, but it might get worse. Do not say to " that powers that be " now,,,, that you are just fine. You may not be " FINE " .... 6 months from now??? Be very careful. My condition tried to kill me when I was 31 years old. Spine problems are very serious stuff. JMO in NH lower back pain... Hi all, I have posted a few times, mostly about my cervical fusion lst year, but I am now (and have been really for years to a lesser extent than my neck) dealing with lower back issues. I have not had an MRI or x-ray in a whaile of my lumbar region, but am experiencing significatn pain affecting my ability to get up form a seated position, and to stand up and to walk...both legs are affected, but my left has tingling on the upper part of my foot. I had PT for this (much less pain, and limitation before with some improvement after, but the PT said that I had plataued and thought I wopuld not get any more improvement with PT at that time) about 6 months ago, but I did gardening yesterday (FOOLISH, I know) and now I am unable to get through anything even with a rigid support brace (Bauerfiend), a low dose of Hydrocodone (5-500)and motrin (400) ...so I guess other than looking for support I am hoping someone can tell me - " don't worry it is just muscle... " I know you can't but hoping is what I have right now... I have had some continued pain form my neck over the last few months ( i had C4-7 fused last year) and this is causing me to tense upo and have more pain there too - I have DDD and know I had some disc issues about two years ago in the lumbar region that my regular Orthopedist saw on my hip x-rays ( I have a THR on the left side (twice!) Should I just wait this out and see if it calms down?, or get to a doctor ASAP? - I could probably get to see my orthopedist early next week, but I doubt the spine surgeon until I have an MRI and more info! Thanks for reading and all the support I get just reading all your posts...any recommendations are greatly appreciated...I pray for all of you to have pain-free days often! mark Quote Link to comment Share on other sites More sharing options...
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