Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 In a message dated 10/31/2000 7:02:07 PM Eastern Standard Time, rmax@... writes: << >>>>>Hi , on one site I read it stated that a person can feel the nerves/muscles dying and that causes pain, maybe thats what is going on? I have a lot of thigh pain, also burning in thighs. I will find that site later and post it, getting ready to take 10 and 7 yr.old trick or treating! ~>Becky M. >> Becky Hopefully soon I can find out what's going on. I appreciate your help on the rheumatoid arthritis. It doesn't sound like that's my problem. After I walk, for instance, going to Dr. or shopping, the thigh hurts much worse. I have to put heat on it. At least the heat feels good.LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 -----Original Message----- From: ktbugg54@... <ktbugg54@...> egroups <egroups> Date: Tuesday, October 31, 2000 2:14 PM Subject: [] muscle pain >Hi all >For 9 months, have been in extreme pain in left thigh, a few times during the >9 months, it has gotten a little better. I feel like it is inflammation, have >tried Celebrex, didn't help. Just wondered if anyone out there knows if >CMTers have such problems. If so, is it a common occurrance. > > >>>>>Hi , on one site I read it stated that a person can feel the nerves/muscles dying and that causes pain, maybe thats what is going on? I have a lot of thigh pain, also burning in thighs. I will find that site later and post it, getting ready to take 10 and 7 yr.old trick or treating! ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 >-----Original Message----- >From: ktbugg54@... <ktbugg54@...> >egroups <egroups> >Date: Tuesday, October 31, 2000 2:14 PM >Subject: [] muscle pain > > >>Hi all >>For 9 months, have been in extreme pain in left thigh, a few times during >the >>9 months, it has gotten a little better. I feel like it is inflammation, >have >>tried Celebrex, didn't help. Just wondered if anyone out there knows if >>CMTers have such problems. If so, is it a common occurrance. >> >> >>>>>>Hi , on one site I read it stated that a person can feel the >nerves/muscles dying and that causes pain, maybe thats what is going on? I >have a lot of thigh pain, also burning in thighs. I will find that site >later and post it, getting ready to take 10 and 7 yr.old trick or treating! >~>Becky M. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 In a message dated 10/31/2000 7:20:01 PM Eastern Standard Time, rmax@... writes: << >Hi , on one site I read it stated that a person can feel the >nerves/muscles dying and that causes pain, maybe thats what is going on? I >have a lot of thigh pain, also burning in thighs. I will find that site >later and post it, getting ready to take 10 and 7 yr.old trick or treating! >~>Becky M. >> Becky Have you had time to look for that site. Interested in reading it if you can find. I do believe you can find anything on the web. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 -----Original Message----- From: ktbugg54@... <ktbugg54@...> egroups <egroups> Date: Thursday, November 02, 2000 5:49 PM Subject: Re: [] muscle pain >In a message dated 10/31/2000 7:20:01 PM Eastern Standard Time, >rmax@... writes: > ><< >Hi , on one site I read it stated that a person can feel the > >nerves/muscles dying and that causes pain, maybe thats what is going on? I > >have a lot of thigh pain, also burning in thighs. I will find that site > >later and post it, getting ready to take 10 and 7 yr.old trick or treating! > >~>Becky M. > >> > >Becky >Have you had time to look for that site. Interested in reading it if you can >find. I do believe you can find anything on the web. > > >->>>, glad you reminded me! Will look it up tonight, thought I had it bookmarked, but didn't. Will for sure get it booked in this time! LOL, ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Hi Barb,  The pain you describe can be related to CMT.  Scoliosis can be CMT related, as can the hip degeneration you describe. I have both of these problems also and they are CMT related in my case.  I've had one hip replaced and the other needs to be. I also share the standing intolerance and other issues you describe.  Regarding your question about how the hip degeneration feels...for me the pain started as an occasional ache and stiffness after sitting or standing in one place for awhile. After I got moving, the pain would feel better...typical arthritis type of symptom, common with degeneration. For many years, it was more of a nuisance than an impediment. I continued being active, doing lots of dancing, and just took anti-inflammatories to cope with it. The pain got increasingly worse over a 10+ year timeframe, until finally my activity was curtailed and I had to have the hip replaced, when I was 38 yrs. By the time it was replaced, the hip socket was bone-on-bone and even walking across a room was incredibly painful with each step.  With my second hip, the degeneration has been slower, likely because I favored that leg for many years due to an early knee injury and I've been a lot less active in recent years.  In that hip, I get the typical pain/stiffness after being stationary for awhile.  When walking, I get a clicking, mild discomfort, and an occasional sharp pain grab. Pain increases substantially with more walking, i.e. 100+ ft, so I use a scooter for distance.  I've taken Voltaren (a non-steroidal anti-inflammatory) since my early 20's. When I have to go off of it, like before an injection or surgery, I begin to feel like the Tin Man in dire need of some oil within a couple of days. The difference between being on and off of this medication is huge for my joints. At some point, you may want to give a non-steroidal a try, if your pain gets bad enough that it can't be ignored or it keeps you up at night. I also get hip injections, which help a great deal as well.   - CMT1A From: Barb Bartz <bartz.barb@...> Subject: Muscle pain Date: Monday, September 27, 2010, 11:51 PM  Hi, I just joined the CMTA and received their Sept-Oct newsletter via PDF. I was reading one of the stories and noticed that someone with CMT- who had been out walking all day- had difficulty sleeping that night because of the lower back, hip and leg pain he was experiencing from overdoing it. This got me to thinking, because my neurologist during my initial exam asked me if I had any pain. I thought she was referring to my hands and feet, and I have no pain in those areas. But I do experience lower back discomfort/pain and have off and on for 30 years. I have always contributed it to my scoliosis which was diagnosed when I was 22. I have found if I walk every day and exercise it is better, but if I sit all the time it is worse. That is one of the main reasons I got into exercise. In the past few years, I have also started to feel lower back pain if I have to stand for a period of time on a hard surface such as a concrete floor (usually more than 30 minutes). My lower back muscles tighten up. I thought this was due to growing older. And my right hip has hurt for years- now my left hip is hurting in the past week or so. I saw an orthopedic surgeon about the right hip 5 or 6 years ago. He said it might be the beginnings or arthritis and that the Tae Bo I was doing was only aggravating or even causing the problem (so I quit doing that). All of these aches and pains are manageable and the lower back pain comes and goes. I do not need any pain killers- I just notice they are there, but they do not really bother me. All of that to say, after reading that article, I'm wondering if all of these aches and pains are in fact due to the CMT and also scoliosis. I have read some on hip dysplagia, which I understand can happen to people with CMT, but do not fully understand it or its symptoms. Just wondering what you think and if you have any suggestions. Blessings, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 Hi Barb, I can get back and hip aches. I have been really fortunate in that I am very active and I have surrounded myself with people as committed as I am to me doing - and staying able to do - sport. This has meant that I have participated in CMT research studies, worked with physiotherapists, and along the way have tried to understand why I might be sore, and what about CMT may be adding to that soreness so that I can learn to manage it. One thing I learned from my physiotherapists at the National Hospital for Neurology in the UK is that CMT patients tend to use their hip flexors for walking (as opposed to quads, or calves to push). This compensation can lead to very tight and tired hip flexors. Which then causes other muscles like the the small ones connecting to the lower back to work hard when the hip flexors get tired. To take over and try to assist when the main muscles we use want a break. For me trying to find exercises to focus on strengthening my hip flexors and lower back has been good. It has helped me to build stamina and feel stronger. I am not saying my approach would work, but perhaps it is something you could think about building into your routine to see if it would help? I would also ask a physiotherapist or doctor or trainer for exercises that would help to strengthen those muscles. I do leg lifts, reverse sit ups, things to strengthen my core muscles. All of it has helped. And like Gretchen said, ice and rest can help too. Good luck, Donna from London www.myfitnessyear.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2010 Report Share Posted October 1, 2010 Wow Donna, that makes so much sense! I have experienced that pain for quite some time now. My PT always wants me to stretch the hips and lower back, but it sounds like I could benefit from adding strengthening exercises, too. Thanks for the tip! > > Hi Barb, > > I can get back and hip aches. > > I have been really fortunate in that I am very active and I have surrounded myself with people as committed as I am to me doing - and staying able to do - sport. This has meant that I have participated in CMT research studies, worked with physiotherapists, and along the way have tried to understand why I might be sore, and what about CMT may be adding to that soreness so that I can learn to manage it. > > One thing I learned from my physiotherapists at the National Hospital for Neurology in the UK is that CMT patients tend to use their hip flexors for walking (as opposed to quads, or calves to push). This compensation can lead to very tight and tired hip flexors. > > Which then causes other muscles like the the small ones connecting to the lower back to work hard when the hip flexors get tired. To take over and try to assist when the main muscles we use want a break. > > For me trying to find exercises to focus on strengthening my hip flexors and lower back has been good. It has helped me to build stamina and feel stronger. > > I am not saying my approach would work, but perhaps it is something you could think about building into your routine to see if it would help? I would also ask a physiotherapist or doctor or trainer for exercises that would help to strengthen those muscles. I do leg lifts, reverse sit ups, things to strengthen my core muscles. All of it has helped. > > And like Gretchen said, ice and rest can help too. > > Good luck, > > Donna from London > > www.myfitnessyear.com > Quote Link to comment Share on other sites More sharing options...
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