Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 My fingers curl sometimes and at times do stick but I can manage to straighten them out. I have seen fingers like yours at a CMT conference in the UK but as what to do about them I can't help. Just wanted to tell you you're not on your own. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Przybysz, ' ' Sent: Monday, October 15, 2001 1:44 PM Subject: [] fingers Hi everyone! Does anyone out there have problems with their fingers? I have 3 fingers that stay constantly bent and I can't straighten them out or move them. They are completely useless. Just wondering if anyone else has the same problem and what you do about it. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Thanks Sue! I just realized that I forgot to do my introduction. My name is and I joined the group about a week ago. I am 24 years old and was diagnosed about 12 years ago. My symptoms were pretty mild when I was first diagnosed so I pretty much ignored my situation. Now over the past 2 years I have gotten a lot worse and I'm now trying to come to terms with my condition. It really helps knowing that there are people like me out there! Thanks! -----Original Message----- From: Sue Horder-Mason [mailto:sue@...] Sent: Monday, October 15, 2001 9:02 AM Subject: Re: [] fingers My fingers curl sometimes and at times do stick but I can manage to straighten them out. I have seen fingers like yours at a CMT conference in the UK but as what to do about them I can't help. Just wanted to tell you you're not on your own. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Przybysz, ' ' Sent: Monday, October 15, 2001 1:44 PM Subject: [] fingers Hi everyone! Does anyone out there have problems with their fingers? I have 3 fingers that stay constantly bent and I can't straighten them out or move them. They are completely useless. Just wondering if anyone else has the same problem and what you do about it. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 , Welcome to the group we all wish we didn't have to join, but sure glad we did! I have been through spells, but with wrist braces it seems to help. A friend of mine worked at the CNV CTR and was familiar with this, when I ask her she said they would put socks stuffed in another over the patients hands to keep the hands open at night while their patients slept and it would help. I really don't know, but it's worth a try. They will do carpal tunnel surgery on me as soon as I feel good enough to have it. They are hoping this will solve my fingers, hand and wrist problems. If you could see me peck away and yes SPELL CHECK IS GREAT for when the fingers go where they want. LINDA SMITH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Hi Jenmifer, Owen here, I have had the same problems with my fingers you have had. I have had some surgeries on my left hand last April. The surgery has helped me a lot. You might consider seeing a ortoapedic doctor specializing in hands. Next March I'm going bach to have my other hand done. Happy Trails, Owen " Przybysz, " wrote: > Hi everyone! Does anyone out there have problems with their fingers? I have > 3 fingers that stay constantly bent and I can't straighten them out or move > them. They are completely useless. Just wondering if anyone else has the > same problem and what you do about it. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Thanks Owen! I appreciate the information! -----Original Message----- From: Owen [mailto:ofriewer@...] Sent: Monday, October 15, 2001 10:50 AM Subject: Re: [] fingers Hi Jenmifer, Owen here, I have had the same problems with my fingers you have had. I have had some surgeries on my left hand last April. The surgery has helped me a lot. You might consider seeing a ortoapedic doctor specializing in hands. Next March I'm going bach to have my other hand done. Happy Trails, Owen " Przybysz, " wrote: > Hi everyone! Does anyone out there have problems with their fingers? I have > 3 fingers that stay constantly bent and I can't straighten them out or move > them. They are completely useless. Just wondering if anyone else has the > same problem and what you do about it. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 My last three fingers (little pinky finger, ring finger, and index) fall asleep sometimes, and also curl up if I move them out without thinking ... CMT does do that to you sometimes. Your fingers more or less have atrophied, and that's what they do .. They start curling up, and you're unable to move them. It also happens with the toes. You (speaking of the 'general you') also can't feel them. I also occaisionally will have problems with my thumb. Sometimes my hand will spasm and go into a curling unmoveable cramp that is uncomfortable, almost painful, and I have to work it out by massaging it. When I type, my fingers usually stayed curled. I find that interesting, too. Physical therapy might help? - On Mon, 15 Oct 2001 08:44:21 -0400 " Przybysz, " <JDPrzybysz@...> writes: > Hi everyone! Does anyone out there have problems with their fingers? > I have > 3 fingers that stay constantly bent and I can't straighten them out > or move > them. They are completely useless. Just wondering if anyone else has > the > same problem and what you do about it. > > Thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Thanks ! That was very helpful! -----Original Message----- From: sylvershine@... [mailto:sylvershine@...] Sent: Monday, October 15, 2001 1:58 PM Subject: Re: [] fingers My last three fingers (little pinky finger, ring finger, and index) fall asleep sometimes, and also curl up if I move them out without thinking ... CMT does do that to you sometimes. Your fingers more or less have atrophied, and that's what they do .. They start curling up, and you're unable to move them. It also happens with the toes. You (speaking of the 'general you') also can't feel them. I also occaisionally will have problems with my thumb. Sometimes my hand will spasm and go into a curling unmoveable cramp that is uncomfortable, almost painful, and I have to work it out by massaging it. When I type, my fingers usually stayed curled. I find that interesting, too. Physical therapy might help? - On Mon, 15 Oct 2001 08:44:21 -0400 " Przybysz, " <JDPrzybysz@...> writes: > Hi everyone! Does anyone out there have problems with their fingers? > I have > 3 fingers that stay constantly bent and I can't straighten them out > or move > them. They are completely useless. Just wondering if anyone else has > the > same problem and what you do about it. > > Thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Hello, Yes I have difficulties with my fingers on my right hand my pinky is the worst and it is bent, my ring finger is bent and my middle is starting to bend. On my left hand my index finger is the worst and it is bent, my ring finger is bent and my pinky. I can straighten them but they do not stay that way. I do not do anything about it as the muscles have atrophied and that is the way they are going to stay for me anyway. I just exercising them by typing a lot and I do some writing also. I have not much feeling in my fingertip if any at all. Thanks, Heidi " Przybysz, " wrote: > Hi everyone! Does anyone out there have problems with their fingers? I have > 3 fingers that stay constantly bent and I can't straighten them out or move > them. They are completely useless. Just wondering if anyone else has the > same problem and what you do about it. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2001 Report Share Posted October 16, 2001 In a message dated 10/15/01 8:46:53 AM Eastern Daylight Time, JDPrzybysz@... writes: > Hi everyone! Does anyone out there have problems with their fingers Yes, My two index fingers are contracted. I am to the point where my wife has to button my shirts, etc. Absolutely no pincer grasp left. I am sure I will be using tools for buttoning, cutting, etc.in a short while. Have to be thankful though, no pain. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 > Hi everyone! Does anyone out there have problems with their fingers? I have > 3 fingers that stay constantly bent and I can't straighten them out Hi ! Yes, I have exactly the same problem with both my hands. First my little fingers curled, then the next and so on. I can not straighten any of my fingers. It makes it difficult/impossible to do things like shoelaces, buttons, handle coins, write and much other tasks. Just resently I had an appointment with a hand surgeon to see if surgery could help. He wanted another surgeons' opinion, so I am waiting for a new appointment. Thanks to these CMT pages, I got in touch with a friendly man, who has actually had surgery in one hand. He felt it was great help and he will do the other hand soon. If you would like to read what he posted about hand surgery; look back on messages around the very end of September. (Sorry, I can't remember the exact date.) Love, Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Thanks Nina! I've been thinking about surgery, but I wasn't sure how effective it would be. Your post really helped a lot! -----Original Message----- From: ninabrowninguk@... [mailto:ninabrowninguk@...] Sent: Tuesday, October 23, 2001 8:31 PM Subject: [] Re: fingers > Hi everyone! Does anyone out there have problems with their fingers? I have > 3 fingers that stay constantly bent and I can't straighten them out Hi ! Yes, I have exactly the same problem with both my hands. First my little fingers curled, then the next and so on. I can not straighten any of my fingers. It makes it difficult/impossible to do things like shoelaces, buttons, handle coins, write and much other tasks. Just resently I had an appointment with a hand surgeon to see if surgery could help. He wanted another surgeons' opinion, so I am waiting for a new appointment. Thanks to these CMT pages, I got in touch with a friendly man, who has actually had surgery in one hand. He felt it was great help and he will do the other hand soon. If you would like to read what he posted about hand surgery; look back on messages around the very end of September. (Sorry, I can't remember the exact date.) Love, Nina Foundation: http://www..org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 --- In Rheumatoid Arthritis , " gonzo_skye " <gonzo_skye@y...> wrote: > > Well I knew it would hit me hard sooner or later.Just didn't expect > sooner this soon.I awake and naturally the hands move,but it isn't > natural to awake and yell cuz your fingers wont' bend and they are > painful Been there...on my way back. Every morning they are a little stiffer, the longer I am off the MTX. Hopefully there is a medication out there that will do for you what the MTX did for me. It was like a miracle. Hopefully my blood test will allow me to go back on the MTX this week. I am a horseman...have been all my life. I teach riding, I train horses, I breed horses. When my hands became so sore I couldn't hold the reins, and my knees hurt so badly I coundn't mount or even walk around to give lessons, I was looking at the end of a carreer. However, I found something that worked for me and now I at least have hahope that if I cannot go back on the MTX at least there is something else out there that will help. I hope you find something. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 I know how you feel. I used to be a dog groomer and had to give it up. I was an avid hobbyist and did a lot of sewing. I now have to rotate my hobbies and sewing and do them when I can. Somedays I can do one hobby and the next day I can't. All you can do is find something to do that fits the condiction of hands that day. Look on the bright side though tomorrow you may have a guitar hand day. This is something we have to learn to deal with. It is hard and most people do not understand the agony we go through every day. The disappointments in not being able to do what you planned to do the next day because your body does not cooperate. Another important thing to do is try to move and exercise your fingers every day. I do even when they are locked up. My Rheumy always uses the phrase. 'Use them or loose them " Hang in their friend. Rue --- gonzo_skye <gonzo_skye@...> wrote: > > Well I knew it would hit me hard sooner or > later.Just didn't expect > sooner this soon.I awake and naturally the hands > move,but it isn't > natural to awake and yell cuz your fingers wont' > bend and they are > painful.I am not angry,but I am at a loss. I depend > on my guitar. It > carries me through the bad days and gives me a > hollar on the good > days. I have been playing ever since I first held > one at 6 years of > age. I am lost. I don't know what to do. I am sure > their are some of > you who play an instrument.How did you cope with the > loss? Friends > want to get together and kick it ,but I can't > anymore. I do not want > to keep my friends at bay but I don't want them to > see me cry when > they play.This may seem like a trivial matter but to > me it means > alot..Well thank you for allowing me to spout off. > On a brighter note, > it will be sunny and in the low 80's all week.Yes > spring has sprung in > Tucson..................................Skye > > > > BOXER DOGS ARE BEAUTIFUL maryrue@... Web Pages: http://www.geocities.com/bmtboxers/ http://www.angelfire.com/ms/beamartonsboxers http://f1.pg.photos./ph/maryrue/album boxerlovers beamartonraylynn boxerloverscollectiblescorner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 you will always miss playing I know I had to give up the one thing I love to do about 10 years ago do to the arthritis it was the hardest thing I ever hard to do that was taking care of kids and working in general I am now on disability I still midd my job and the kids I think about them and they are all growen up now and don't even think of me but I think of them all the time good luck I hope you will be able to play aganin Sherrie--- In Rheumatoid Arthritis , " gonzo_skye " <gonzo_skye@y...> wrote: > > Well I knew it would hit me hard sooner or later.Just didn't expect > sooner this soon.I awake and naturally the hands move,but it isn't > natural to awake and yell cuz your fingers wont' bend and they are > painful.I am not angry,but I am at a loss. I depend on my guitar. It > carries me through the bad days and gives me a hollar on the good > days. I have been playing ever since I first held one at 6 years of > age. I am lost. I don't know what to do. I am sure their are some of > you who play an instrument.How did you cope with the loss? Friends > want to get together and kick it ,but I can't anymore. I do not want > to keep my friends at bay but I don't want them to see me cry when > they play.This may seem like a trivial matter but to me it means > alot..Well thank you for allowing me to spout off. On a brighter note, > it will be sunny and in the low 80's all week.Yes spring has sprung in > Tucson..................................Skye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 Ohh Fingers, I think I know a bit about what you are feeling. I have just been diagnosed after three months with my orthopod trying various anti inflammatories that just made me sick, I had my scheduled physical-shakings of physicians head and lots of blood tests later I have a diagnosis-what I don't have is fingers that work (I am a soon to be grandma with a yarn stash you wouldn't believe) or a visit to the rheumatologist till the 11th-I have had pain before -surgeries, 2 knee replacements, but have never dealt with pain and immobility that seemed like it would have no end. Please tell me there is life after diagnosis I fight each day do do a few rows on my knitting-me who could knit all day if I had time---oh well I just want to be well enough to pick up the baby when it comes in July Kathy ScharkHamden CTkschark@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 (((( gentle hugs ))))))) My fingers being stiff and sore was what sent me to the doc and that was when I found out I had this horrid disease. I've only been diagnosed for 6 months but I've found that I just have to listen to my body and do when I can and when I feel up to it and NOT put myself down when I can't. Love - kins -------Original Message------- From: gonzo_skye Date: 04/04/05 06:57:33 Rheumatoid Arthritis Subject: Fingers Well I knew it would hit me hard sooner or later.Just didn't expect sooner this soon.I awake and naturally the hands move,but it isn't natural to awake and yell cuz your fingers wont' bend and they are painful.I am not angry,but I am at a loss. I depend on my guitar. It carries me through the bad days and gives me a hollar on the good days. I have been playing ever since I first held one at 6 years of age. I am lost. I don't know what to do. I am sure their are some of you who play an instrument.How did you cope with the loss? Friends want to get together and kick it ,but I can't anymore. I do not want to keep my friends at bay but I don't want them to see me cry when they play.This may seem like a trivial matter but to me it means alot..Well thank you for allowing me to spout off. On a brighter note, it will be sunny and in the low 80's all week.Yes spring has sprung in Tucson..................................Skye Nellum Designs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 I just want to be well enough to pick up the baby when it comes in July I wasn't able to pick up my new grandson last October, but I was able to hold him if I sat down and someone placed him in my arms. Now, after six months of MTX I can pick up the 20 lb six month old with ease. Hopefully they will find something that works as well for you. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 I hope you get sufficient treatment to go back to playing the guitar. There are a lot of medications out there and I hope you find the right combination and dosages for you. God bless. ----- Original Message ----- From: gonzo_skye Rheumatoid Arthritis Sent: Monday, April 04, 2005 4:57 AM Subject: Fingers Well I knew it would hit me hard sooner or later.Just didn't expect sooner this soon.I awake and naturally the hands move,but it isn't natural to awake and yell cuz your fingers wont' bend and they are painful.I am not angry,but I am at a loss. I depend on my guitar. It carries me through the bad days and gives me a hollar on the good days. I have been playing ever since I first held one at 6 years of age. I am lost. I don't know what to do. I am sure their are some of you who play an instrument.How did you cope with the loss? Friends want to get together and kick it ,but I can't anymore. I do not want to keep my friends at bay but I don't want them to see me cry when they play.This may seem like a trivial matter but to me it means alot..Well thank you for allowing me to spout off. On a brighter note, it will be sunny and in the low 80's all week.Yes spring has sprung in Tucson..................................Skye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Gail, my fingers have begun curling under as well. I went to the MDA clinic and they prescribed me some hand splints to wear at night to hopefully slow the progression. So far, I haven't gotten any worse and I have been wearing them for months. Tell your sister to check into them. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 I have been having that same sensation. Fingers falling asleep alot especially the fingertips. I have also been having slight tremors in my hands. Not alot but here and there. I have mentioned this to my neuro and thought he was taking this into consideration. I recently received a copy of my medical records from this neuro and he has actually stated in his office notes " patient has no complaint of any trouble with her hands " . I was appalled!! Just another reason for me to find another neuro. Mental note to self : call other doctor that someone has referred me to. Bit of advice to all: get copies of all of your medical records and check them for accuracy. In most states copies are free as long as you are requesting them for yourself. Usually if you are transferring out the current doctors practice they may charge you a fee to copy your records. Your medical records are as important as your credit reports. I couldn't believe the things that were left out of mine. Things that I specifically told my doctor because I wanted him to make note of them. Just to find out he disregarded them and made no mention or flat out said in his notes that I didn't mention such things. I should have realized this since I have worked in the medical field most of my life. Thanks for letting me vent and try to get this important point out to you all. Get copies of your records. Don't delay. Elaina. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi Gail, The way I found out I had CMT1A was from loosing total use of my right hand overnight. Woke up and thought it was asleep at first and after the ER (thought it might have been a stroke), the Dr. there said it was only a nerve palsey and would go away in a couple days. Six months later a chirocpractor and finally a neurologist, thus the diagnosis and the feeling came back after the six months, but that's how they found out I had CMT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 I have very little feeling in all my fingers. I wear splints to sleep in. I wear welding gloves to cook in since I have had so mny burns. My neurologist did a EMG of my hands and wrist and wanted to try something by having me have carpal tunnel sugery on one hand. Too bad I have no insurance and I can't get it done to see if it will help. In the mean time my arms are starting to tingle. But I don't give up. I exercise three times a week now but in the summer I exercise 7 days a week. I won't give up and I have learned the CMT can sure affect each of us in different ways. A word about medical records. My hubby is ill and has a terminal bone marrow disorder. He started having more problems so we wanted to get a second opinion. It took us three weeks and the threat of getting a lwayer to get his records. We are in shock at the things in there the doctor never told us. Seems like he may have something that could kill him sooner, and the doctor had a lot of errors abiut Larry's complaints. So I urge everyone to get their records now. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Gail, This happened to me when I was 14. I lost use of my arm for about 4 months. The doctors at the time really had no explanation. I am 31 and was just recently diagnosed with CMT. Quote Link to comment Share on other sites More sharing options...
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