Guest guest Posted February 16, 1999 Report Share Posted February 16, 1999 le, Just a note on pain. My knees and calves hurt every night but I don't know if it relates to the RLS. That is, if RLS was absent, I don't know if I would still have pain. Since I can remember, my knees and legs have ached. I woke my mother many a night with this. Lynn 45 GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 1999 Report Share Posted February 16, 1999 le, Just a note on pain. My knees and calves hurt every night but I don't know if it relates to the RLS. That is, if RLS was absent, I don't know if I would still have pain. Since I can remember, my knees and legs have ached. I woke my mother many a night with this. Lynn 45 GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Hi Coco, your message reach us, welcome to the group, you wanna share the cure you discovered? Just kidding, these people are supporting, joking, fighting, competing,( who has the baddest rls )whatever you name, we do. Share you thing, Marleen, 52, Holland mainard@... wrote: > From: mainard@... > > I am fairly new to this group and computers so I don't know if I'm doing something wrong.I have been trying to get anybody to respond to me to see if I'm doing this right.I have some news I would like to share with the group.Please respond anybody? COCO > > ------------------------------------------------------------------------ > We are proud as punch of our new web site! > http://www.onelist.com > Onelist: The leading provider of free email community services > ------------------------------------------------------------------------ > This forum is for support only. The information posted to this List is for support purposes > and is not intended to replace the examination, diagnosis and treatment of a licensed > physician and no such claims are inferred. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Hi Coco, Your message came throught just fine! We are glad to have you join the rlssupport group. I would be interested in hearing anything you have to share. Jane hickorywind_98@...> ---mainard@... wrote: > > From: mainard@... > > I am fairly new to this group and computers so I don't know if I'm doing something wrong.I have been trying to get anybody to respond to me to see if I'm doing this right.I have some news I would like to share with the group.Please respond anybody? COCO > > ------------------------------------------------------------------------ > We are proud as punch of our new web site! > http://www.onelist.com > Onelist: The leading provider of free email community services > ------------------------------------------------------------------------ > This forum is for support only. The information posted to this List is for support purposes > and is not intended to replace the examination, diagnosis and treatment of a licensed > physician and no such claims are inferred. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Hi Coco, Your message came throught just fine! We are glad to have you join the rlssupport group. I would be interested in hearing anything you have to share. Jane hickorywind_98@...> ---mainard@... wrote: > > From: mainard@... > > I am fairly new to this group and computers so I don't know if I'm doing something wrong.I have been trying to get anybody to respond to me to see if I'm doing this right.I have some news I would like to share with the group.Please respond anybody? COCO > > ------------------------------------------------------------------------ > We are proud as punch of our new web site! > http://www.onelist.com > Onelist: The leading provider of free email community services > ------------------------------------------------------------------------ > This forum is for support only. The information posted to this List is for support purposes > and is not intended to replace the examination, diagnosis and treatment of a licensed > physician and no such claims are inferred. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 Tried logging into this site and was told it was no longer available. Is the address listed below correct? ne, 59, Lawrenceville, NJ On Wed, 31 Mar 1999 09:44:25 -0600 Meadows drmead@...> writes: > > >Ekbom, a Swedish neurologist established the causes of RLS in 1960, >but >the medical establishment has ingnored his conclusions. Try logging >onto >www.mdrestlesslegs.com >Author > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Dear Lorrie: I thought that I would give you my comments on what you mentioned in your post. Back in 1990, after my back injury and surgery, which was coincidentally when the RLS decided to become a permanent part of my life, instead of a once or twice a month aggravation, I was taking care of my mother, who had terminal bone cancer. Now, keep in mind, this was before I was actually " diagnosed " by a physician as having RLS. I was sitting on the couch one night and just rubbing the heck out of my calf muscles to try and relieve the spasms of the RLS and my Mom asked me what was wrong. When I tried to explain the feelings in my legs, she stopped me and told me that she had the same problem. Her doctor had told her to take Quinine pills to stop the " cramps " . At that time, you could get Quinine pills OTC without a prescription and she gave me some of hers. It helped somewhat for several months for me. I went to the pharmacy and did exactly what you did, talked with the pharmacist about the feelings in my legs and he directed me to the aisle where there were several products, Q-Vel and Legatrin. The ingredients were pretty much the same on both, and if I remember right, they were both about 90% Quinine. I used the Legatrin for several months with pretty good results, but like everything else, or with me, it's only temporary.At that time, they didn't have Legatrin PM, so I don't know what the ingredients are in that one. Probably close to the same as the regular Legatrin with maybe some sort of antihistamine like dyphenhydramine to help induce relaxation so that you can sleep. One thing that you need to keep in mind is that quite a few of us have learned that a good majority of antihistamines aggravate RLS, and in my case, the above mentioned one assures that I will have a really good attack if I take it. It's also the main ingredient in most of the OTC sleep aids, with the exception of Unisom, which is the only one that I can take and not have an attack. You also mentioned being on anti-depressants. As a new member of the group, you have missed our previous conversations about anti-depressants and it is a proven fact that most of them due contribute to RLS attacks. From what I've read from some of the members, there are a couple of anti-depressants out there that don't seem to aggravate it quite as bad, the one that comes to mind is Serzone. I've been on probably half a dozen of them right before my primary care doctor finally referred me to a sleep clinic. I know that she was basically prescribing the for their sedative properties to help me to sleep, but the RLS went out of control on me when I was on them. Some of the ones that I was on over a period of about 6 months back in 1994 are Paxil, Sinequan, Trazadone, Zoloft, Elavil (Amitriptyline) and Remeron, and each of these aggravated my RLS, so this is something that you need to consider about your RLS. You didn't mention what type of anti-depressants you were on, so I just thought that I would share my own personal experience and let you now what we as a group have also found out in our experiences about antihistamines and anti-depressants. Hope that this helps. Restful Nights, Jodi, 39, Nashville, TN bowlpoker@... wrote: > From: bowlpoker@... > > Hello everyone it is me Lorie sorry I haven't been updating you on my progress. I went to see a pharmacist to find something for my left leg due to which I'm certain is RLS. Have you ever heard of Legatrim PM it is for leg cramps and muscle spasms? I thought I would try this until I can afford to go to a doctor to get a diagnosis. It does seem to help me at night when I start to feel it coming on which for me is almost every night anymore. During the daytime I just try to live with it. I'm also trying to get some exercise in by taking walks which is hard to do sometimes because my left leg gets so weak. My problem is still the more tired I get the worse I know my night will be or the harder I work the worse it will be. I have also had to give up some more clients because it is getting to hard on my left leg anymore so, I'm gonna go find some medical help through the government if I can? I have a appointment at a Mental Health Clinic that I'm in right now to help me pay for my > anti-depressants so hopefully they can give me some advise on what I can do for further medical assistance. So, that is my story so far I really enjoy all the email I get on RLS I have learned a great deal from all of you. Thank -you for all your information and help!! Lorie > > ------------------------------------------------------------------------ > Start a new hobby. Meet a new friend. > http://www.ONElist.com > ONElist: The leading provider of free e-mail list services! > ------------------------------------------------------------------------ > This forum is for support only. The information posted to this List is for support purposes > and is not intended to replace the examination, diagnosis and treatment of a licensed > physician and no such claims are inferred. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Dear Lorrie: I thought that I would give you my comments on what you mentioned in your post. Back in 1990, after my back injury and surgery, which was coincidentally when the RLS decided to become a permanent part of my life, instead of a once or twice a month aggravation, I was taking care of my mother, who had terminal bone cancer. Now, keep in mind, this was before I was actually " diagnosed " by a physician as having RLS. I was sitting on the couch one night and just rubbing the heck out of my calf muscles to try and relieve the spasms of the RLS and my Mom asked me what was wrong. When I tried to explain the feelings in my legs, she stopped me and told me that she had the same problem. Her doctor had told her to take Quinine pills to stop the " cramps " . At that time, you could get Quinine pills OTC without a prescription and she gave me some of hers. It helped somewhat for several months for me. I went to the pharmacy and did exactly what you did, talked with the pharmacist about the feelings in my legs and he directed me to the aisle where there were several products, Q-Vel and Legatrin. The ingredients were pretty much the same on both, and if I remember right, they were both about 90% Quinine. I used the Legatrin for several months with pretty good results, but like everything else, or with me, it's only temporary.At that time, they didn't have Legatrin PM, so I don't know what the ingredients are in that one. Probably close to the same as the regular Legatrin with maybe some sort of antihistamine like dyphenhydramine to help induce relaxation so that you can sleep. One thing that you need to keep in mind is that quite a few of us have learned that a good majority of antihistamines aggravate RLS, and in my case, the above mentioned one assures that I will have a really good attack if I take it. It's also the main ingredient in most of the OTC sleep aids, with the exception of Unisom, which is the only one that I can take and not have an attack. You also mentioned being on anti-depressants. As a new member of the group, you have missed our previous conversations about anti-depressants and it is a proven fact that most of them due contribute to RLS attacks. From what I've read from some of the members, there are a couple of anti-depressants out there that don't seem to aggravate it quite as bad, the one that comes to mind is Serzone. I've been on probably half a dozen of them right before my primary care doctor finally referred me to a sleep clinic. I know that she was basically prescribing the for their sedative properties to help me to sleep, but the RLS went out of control on me when I was on them. Some of the ones that I was on over a period of about 6 months back in 1994 are Paxil, Sinequan, Trazadone, Zoloft, Elavil (Amitriptyline) and Remeron, and each of these aggravated my RLS, so this is something that you need to consider about your RLS. You didn't mention what type of anti-depressants you were on, so I just thought that I would share my own personal experience and let you now what we as a group have also found out in our experiences about antihistamines and anti-depressants. Hope that this helps. Restful Nights, Jodi, 39, Nashville, TN bowlpoker@... wrote: > From: bowlpoker@... > > Hello everyone it is me Lorie sorry I haven't been updating you on my progress. I went to see a pharmacist to find something for my left leg due to which I'm certain is RLS. Have you ever heard of Legatrim PM it is for leg cramps and muscle spasms? I thought I would try this until I can afford to go to a doctor to get a diagnosis. It does seem to help me at night when I start to feel it coming on which for me is almost every night anymore. During the daytime I just try to live with it. I'm also trying to get some exercise in by taking walks which is hard to do sometimes because my left leg gets so weak. My problem is still the more tired I get the worse I know my night will be or the harder I work the worse it will be. I have also had to give up some more clients because it is getting to hard on my left leg anymore so, I'm gonna go find some medical help through the government if I can? I have a appointment at a Mental Health Clinic that I'm in right now to help me pay for my > anti-depressants so hopefully they can give me some advise on what I can do for further medical assistance. So, that is my story so far I really enjoy all the email I get on RLS I have learned a great deal from all of you. Thank -you for all your information and help!! Lorie > > ------------------------------------------------------------------------ > Start a new hobby. Meet a new friend. > http://www.ONElist.com > ONElist: The leading provider of free e-mail list services! > ------------------------------------------------------------------------ > This forum is for support only. The information posted to this List is for support purposes > and is not intended to replace the examination, diagnosis and treatment of a licensed > physician and no such claims are inferred. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Hi everyone, I have always hadthe restless legs. I think even more so when I was a kid. I think that is what has kept me from sleeping good. Does anyone else have insomnia? Now I can be sitting watching TV & my legs get that feeling, & I have to keep moving them. Does anyone else have the painful callouses on the bottom of their feet? Mine on by the small toes as I run my feet over when I walk, I'm almost walking on my ankles!! I use a pumice stone on thecallouses. I have went to podiatrist before, but they come right back immediately, so that can be expensive. also my bone by the small toes isspreading out to the side making my feet much wider. I have a half-brother, whom I have never met, he lives in CO, & he has CMT, but we have talked to him, & his bones went right thru his foot in the same place. Are anyone ese experiencing this. It looks like a bunion, but on the small toe side. I have a 4E width shoe, I ordered thru Mason's shoes. They are pretty comfy. Its walking on hard surfaces that are a killer. The pain goes from the foot up my legs to my hips & back. When this happens, all I want is my feet cut off!!!! Then I feel really remorseful & thank God that I have feet to walk on!! Thanks everyone, I love reading all the posts, & it makes me feel better to know there are people out there w/ CMT. Most of my family have it. I have been noticing the generations. My dad had it, & his arches were very high. I think my children, it was girls were affected worse. My 2 sons could run & didn't have any problems with sports, Now my gchildren, it seems like its the boys are more affected. God Bless everyone, Patsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Dear Patsy. Insomnia has been a way of life for me. Even as a tiny baby. I was born out in Singapore and my mother tells me I used to be awake all day, sleep from 6pm - 10pm, awake from 10pm - 2pm and then sleep until 6. My parents were constantly exhausted. I still suffer from it but every now and then I crash and sleep long hours for a couple of days then it's back to normal. I used to take Amitryptline (again I don't know to spell it) 100 -125mg at night and still I didn't sleep. I have read though that insomnia is part of CMT. Who'd normal, it must be really boring. Sue RLS Hi everyone, I have always hadthe restless legs. I think even more so when I was a kid. I think that is what has kept me from sleeping good. Does anyone else have insomnia? Now I can be sitting watching TV & my legs get that feeling, & I have to keep moving them. Does anyone else have the painful callouses on the bottom of their feet? Mine on by the small toes as I run my feet over when I walk, I'm almost walking on my ankles!! I use a pumice stone on thecallouses. I have went to podiatrist before, but they come right back immediately, so that can be expensive. also my bone by the small toes isspreading out to the side making my feet much wider. I have a half-brother, whom I have never met, he lives in CO, & he has CMT, but we have talked to him, & his bones went right thru his foot in the same place. Are anyone ese experiencing this. It looks like a bunion, but on the small toe side. I have a 4E width shoe, I ordered thru Mason's shoes. They are pretty comfy. Its walking on hard surfaces that are a killer. The pain goes from the foot up my legs to my hips & back. When this happens, all I want is my feet cut off!!!! Then I feel really remorseful & thank God that I have feet to walk on!! Thanks everyone, I love reading all the posts, & it makes me feel better to know there are people out there w/ CMT. Most of my family have it. I have been noticing the generations. My dad had it, & his arches were very high. I think my children, it was girls were affected worse. My 2 sons could run & didn't have any problems with sports, Now my gchildren, it seems like its the boys are more affected. God Bless everyone, Patsy -------------------------------------------------------------------------------- -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Patsy wrote: Does anyone else have insomnia? Does anyone else have the painful callouses on the bottom of their feet? *************** Hi Patsy, I suffer with insomnia quite alot..... Can't clear my mind. I don't suffer with callouses on my feet, however my brother who also has CMT does. He never had any corrective surgery or AFO and so he ended up with his feet deformimg very severely. He walks on the outside of his feet. He has major trouble with his small toe. Take care, Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Patsy, the same thing happened to me on my big toe. I went to a podiatrist/surgeon and he shaved the bone down. Some stitches for a week, now no problems. patsy1128@... wrote: Hi everyone, I have always hadthe restless legs. I think even more so when I was a kid. I think that is what has kept me from sleeping good. Does anyone else have insomnia? Now I can be sitting watching TV & my legs get that feeling, & I have to keep moving them. Does anyone else have the painful callouses on the bottom of their feet? Mine on by the small toes as I run my feet over when I walk, I'm almost walking on my ankles!! I use a pumice stone on thecallouses. I have went to podiatrist before, but they come right back immediately, so that can be expensive. also my bone by the small toes isspreading out to the side making my feet much wider. I have a half-brother, whom I have never met, he lives in CO, & he has CMT, but we have talked to him, & his bones went right thru his foot in the same place. Are anyone ese experiencing this. It looks like a bunion, but on the small toe side. I have a 4E width shoe, I ordered thru Mason's shoes. They are pretty comfy. Its walking on hard surfaces that are a killer. The pain goes from the foot up my legs to my hips & back. When this happens, all I want is my feet cut off!!!! Then I feel really remorseful & thank God that I have feet to walk on!! Thanks everyone, I love reading all the posts, & it makes me feel better to know there are people out there w/ CMT. Most of my family have it. I have been noticing the generations. My dad had it, & his arches were very high. I think my children, it was girls were affected worse. My 2 sons could run & didn't have any problems with sports, Now my gchildren, it seems like its the boys are more affected. God Bless everyone, Patsy --------------------------------- --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Patsy, the same thing happened to me on my big toe. I went to a podiatrist/surgeon and he shaved the bone down. Some stitches for a week, now no problems. patsy1128@... wrote: Hi everyone, I have always hadthe restless legs. I think even more so when I was a kid. I think that is what has kept me from sleeping good. Does anyone else have insomnia? Now I can be sitting watching TV & my legs get that feeling, & I have to keep moving them. Does anyone else have the painful callouses on the bottom of their feet? Mine on by the small toes as I run my feet over when I walk, I'm almost walking on my ankles!! I use a pumice stone on thecallouses. I have went to podiatrist before, but they come right back immediately, so that can be expensive. also my bone by the small toes isspreading out to the side making my feet much wider. I have a half-brother, whom I have never met, he lives in CO, & he has CMT, but we have talked to him, & his bones went right thru his foot in the same place. Are anyone ese experiencing this. It looks like a bunion, but on the small toe side. I have a 4E width shoe, I ordered thru Mason's shoes. They are pretty comfy. Its walking on hard surfaces that are a killer. The pain goes from the foot up my legs to my hips & back. When this happens, all I want is my feet cut off!!!! Then I feel really remorseful & thank God that I have feet to walk on!! Thanks everyone, I love reading all the posts, & it makes me feel better to know there are people out there w/ CMT. Most of my family have it. I have been noticing the generations. My dad had it, & his arches were very high. I think my children, it was girls were affected worse. My 2 sons could run & didn't have any problems with sports, Now my gchildren, it seems like its the boys are more affected. God Bless everyone, Patsy --------------------------------- --------------------------------- Quote Link to comment Share on other sites More sharing options...
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