Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Mike, I am sorry to hear that your Dad is having so much trouble with neck pain. I wish that I could tell you how to make it better. My sister also has the pain in her neck and shoulder area. It is there all the time and NEVER lets up. She is on 4800 mg of neurontin and it doesn't even touch it. I hope that someone on the list has some ideas for both your Dad and my sister. I have tried everything that I can think of. Good luck Mike and I know just how you feel. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Jane, Thanks for your hint. We have one of those herbal wraps that one puts in the microwave. It is comforting at times for Chrissie and sometimes an ice pack helps a bit. Thanks again, & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Jane, Thanks for your hint. We have one of those herbal wraps that one puts in the microwave. It is comforting at times for Chrissie and sometimes an ice pack helps a bit. Thanks again, & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Mike, This is a method that helped my Dad with this. There are these handmade bean bags that you place in the microwave, and drape the heated bag like a collar around your neck and shoulders. Some of these bags have different herbs and fragrances in them.....Dad ended up using them for his hands too. My sister and I found these in a mall in one of the booths set up outside of the stores in the malls..... I hope that you find them.....they are reasonably priced and provide some relief. Regards, jane Neck Pain > To the group or anyone getting the e-mail; > > I need some ideas on how to help my Dad with his terrible neck pain. > We haven't been able to find much relief. Medicine dosn't seem to > help. Setting up, standing, laying down it's there most of the day > until the mid afternoon. He is going on his 5th year with SDS. > It the neck pain was controlled, he would be able to handle most all of > the other problems. > If anybody knows of any tricks that they have used please pass them my > way. > > Wanting to help Dad have better quality of life, > Mike > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Mike, This is a method that helped my Dad with this. There are these handmade bean bags that you place in the microwave, and drape the heated bag like a collar around your neck and shoulders. Some of these bags have different herbs and fragrances in them.....Dad ended up using them for his hands too. My sister and I found these in a mall in one of the booths set up outside of the stores in the malls..... I hope that you find them.....they are reasonably priced and provide some relief. Regards, jane Neck Pain > To the group or anyone getting the e-mail; > > I need some ideas on how to help my Dad with his terrible neck pain. > We haven't been able to find much relief. Medicine dosn't seem to > help. Setting up, standing, laying down it's there most of the day > until the mid afternoon. He is going on his 5th year with SDS. > It the neck pain was controlled, he would be able to handle most all of > the other problems. > If anybody knows of any tricks that they have used please pass them my > way. > > Wanting to help Dad have better quality of life, > Mike > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Mike, I have terrible neck and shoulder pain.. If i can keep it down the extra strength tylenol helps alot.. Ask his doctor about that.. I take 2 before I go to bed at night. And then when needed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Mike, Often the pain in the neck is caused by muscle spasm in MSA. Muscle relaxers or anti-spasm meds often help more than pain meds for this pain. Charlotte takes Baclofen for it. Range of motion exercises for the neck also help some people, talk to a physical therapist about them. And as someone else suggested, heat can help also, usually moist heat is slightly better. DO BEWARE - if you have orthostatic hypotension (OH), long hot showers are not good for people with OH. Take care, Bill and Charlotte Mike Ditty wrote: > To the group or anyone getting the e-mail; > > I need some ideas on how to help my Dad with his terrible neck pain. > We haven't been able to find much relief. Medicine dosn't seem to > help. Setting up, standing, laying down it's there most of the day > until the mid afternoon. He is going on his 5th year with SDS. > It the neck pain was controlled, he would be able to handle most all of > the other problems. > If anybody knows of any tricks that they have used please pass them my > way. > > Wanting to help Dad have better quality of life, > Mike > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Heating cloth-only oven mitts also helps with hands. My wife learned this trick when helping music majors before concerts. I also use heated towels, which can be molded to other parts of the body. However, I really like the bean bag approach, since it will do a better job of retaining heat that just fabric. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 My husband suffers from MSA, and experiences severe neck pain. He has seen a neurosurgeon who is looking at surgery to remove protruding discs. The literature on MSA on the Web lists neck pain as a symptom. How is this related, and what is cervical dystonia? Thank-you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Greetings Bill & ! Hope you don't mind my jumping into the conversation here ... Even if you do, here I am, anyway! ;-) Neurontin is an anti-convulsant used by persons with Epilepsy to help control symptoms. Doctors also noticed it helps manage nerve pain. The is an 'off label' use of the medication. Sometimes, nerve pain can be so intense it causes cramping. ly it can be hard to sort out one from the other. For instance, I have nerve pain in my feet and hands. They also cramp. Does that result from the pain? Are my muscles just attempting to flex away from the pain? Or does cramping trigger the nerve pain from over stimulated nerves? Right now for me, the neurontin helps control the awful tingling and electric shock sensations. It does not reduce (at least to my knowledge) the cramping. But I'm definitely not willing to stop the neurontin to check this hypothesis !! I can live with this, but my bet is that by next March (next scheduled neurologist visit), I'll look into medication for the cramping. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 , Jump in any time! Charlotte uses both Baclofen and Amantadine, but not Neurontin so I don't know a lot about it. On the cramping of the muscles. I have talked to several doctors and they feel it is the muscles cramping because of a lack of nerve impulses to keep the muscles active. That is why they recommend the range of motion exercises. The MSA itself tends to cramp the muscles. The exercises have several benefits. * Keeping range of motion * Tightening and loosening stomach muscles helps food move through the system * Exercise helps cut depression (according to a large study) * It helps concentration Charlotte complains most about tingling and burning pain (feet and legs) at end of dose on the Sinemet. The pain in the neck (who me?) is usually later in the day. It could also be stress. Take care, Bill and Charlotte ------------------------------------------- Fisher wrote: > Greetings Bill & ! > > Hope you don't mind my jumping into the conversation here ... Even if you > do, here I am, anyway! ;-) > > Neurontin is an anti-convulsant used by persons with Epilepsy to help > control symptoms. Doctors also noticed it helps manage nerve pain. The is > an 'off label' use of the medication. > > Sometimes, nerve pain can be so intense it causes cramping. ly it can > be hard to sort out one from the other. For instance, I have nerve pain in > my feet and hands. They also cramp. Does that result from the pain? Are > my muscles just attempting to flex away from the pain? Or does cramping > trigger the nerve pain from over stimulated nerves? > > Right now for me, the neurontin helps control the awful tingling and > electric shock sensations. It does not reduce (at least to my knowledge) > the cramping. But I'm definitely not willing to stop the neurontin to check > this hypothesis !! > > I can live with this, but my bet is that by next March (next scheduled > neurologist visit), I'll look into medication for the cramping. > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Hi , I haven't talked with you in awhile but I'm back to relating to what you are saying. I got my medical records from the neuro I was seeing (this is the man without the BP cuff.) Anyway, I thought it interesting because he, of course, mentions that I do not have MSA. He also mentions that I must use " fall precautions. " That's one on me. He never told me that, although I kind of figured that out myself. As far as the cramping, I have noticed that just a little bit of writing will make my hands cramp up. Something (not sure) is wrong with my right thumb. A few days it will be almost okay, but then trying to turn on the shower and the position of it makes all the pain come back. I have the feeling like it's arthritis in that one joint or at some point I sprained it and it's never healed. Can't say for sure, especially since I don't know what arthritis feels like. I am used to using my hands (typing, court reporting school, letter writing, etc.) so I know it's not right for my hands to cramp when trying to write a few checks. The neck thing is really weird. I have what feels like to me a pulled muscle (ripping, burning sensation) from the same part of my back/neck/shoulder area. I get the sensations more when I'm tired and feel like it must be stemming from the neck. The new neuro says it may be a nerve that's acting up. The one thing that aggravates me is that I have been taking the Neurontin now for about 3-4 months and the new neuro just told me that it was an 8-hour medicine, so I could be taking it during the day for the pain. The old neuro told me to only take it at night. So last weekend I tried it during the day to see how it would do for me and it didn't knock me out like I thought it would. I think I will get so much better care here than where I was. Prayers and hugs, Re: neck pain >Greetings Bill & ! > >Hope you don't mind my jumping into the conversation here ... Even if you >do, here I am, anyway! ;-) > >Neurontin is an anti-convulsant used by persons with Epilepsy to help >control symptoms. Doctors also noticed it helps manage nerve pain. The is >an 'off label' use of the medication. > >Sometimes, nerve pain can be so intense it causes cramping. ly it can >be hard to sort out one from the other. For instance, I have nerve pain in >my feet and hands. They also cramp. Does that result from the pain? Are >my muscles just attempting to flex away from the pain? Or does cramping >trigger the nerve pain from over stimulated nerves? > >Right now for me, the neurontin helps control the awful tingling and >electric shock sensations. It does not reduce (at least to my knowledge) >the cramping. But I'm definitely not willing to stop the neurontin to check >this hypothesis !! > >I can live with this, but my bet is that by next March (next scheduled >neurologist visit), I'll look into medication for the cramping. > > >Regards, >=jbf= > > B. Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Thanks again, Bill, I will be off to the store after work tomorrow for the silly putty. That is a great idea. Say hi to Charlotte for me. Re: neck pain >> >> >Greetings Bill & ! >> > >> >Hope you don't mind my jumping into the conversation here ... Even if you >> >do, here I am, anyway! ;-) >> > >> >Neurontin is an anti-convulsant used by persons with Epilepsy to help >> >control symptoms. Doctors also noticed it helps manage nerve pain. The is >> >an 'off label' use of the medication. >> > >> >Sometimes, nerve pain can be so intense it causes cramping. ly it can >> >be hard to sort out one from the other. For instance, I have nerve pain in >> >my feet and hands. They also cramp. Does that result from the pain? Are >> >my muscles just attempting to flex away from the pain? Or does cramping >> >trigger the nerve pain from over stimulated nerves? >> > >> >Right now for me, the neurontin helps control the awful tingling and >> >electric shock sensations. It does not reduce (at least to my knowledge) >> >the cramping. But I'm definitely not willing to stop the neurontin to >> check >> >this hypothesis !! >> > >> >I can live with this, but my bet is that by next March (next scheduled >> >neurologist visit), I'll look into medication for the cramping. >> > >> > >> >Regards, >> >=jbf= >> > >> > B. Fisher >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 , For your hands, get some Silly Putty. Two eggs of it at Toys R Us @ 99 cents each make an extremely good exercise medium. Just squeeze it over and over as you are watching TV for 15 minutes or so. Enough that you feel you have worked, but not to the point of pain. It has always worked well for me when I broke fingers playing softball. Take care, Bill and Charlotte -------------------------------------------------------------------- Bushnell wrote: > Hi , > > I haven't talked with you in awhile but I'm back to relating to what you are > saying. I got my medical records from the neuro I was seeing (this is the > man without the BP cuff.) Anyway, I thought it interesting because he, of > course, mentions that I do not have MSA. He also mentions that I must use > " fall precautions. " That's one on me. He never told me that, although I > kind of figured that out myself. > > As far as the cramping, I have noticed that just a little bit of writing > will make my hands cramp up. Something (not sure) is wrong with my right > thumb. A few days it will be almost okay, but then trying to turn on the > shower and the position of it makes all the pain come back. I have the > feeling like it's arthritis in that one joint or at some point I sprained it > and it's never healed. Can't say for sure, especially since I don't know > what arthritis feels like. I am used to using my hands (typing, court > reporting school, letter writing, etc.) so I know it's not right for my > hands to cramp when trying to write a few checks. > > The neck thing is really weird. I have what feels like to me a pulled > muscle (ripping, burning sensation) from the same part of my > back/neck/shoulder area. I get the sensations more when I'm tired and feel > like it must be stemming from the neck. The new neuro says it may be a > nerve that's acting up. > > The one thing that aggravates me is that I have been taking the Neurontin > now for about 3-4 months and the new neuro just told me that it was an > 8-hour medicine, so I could be taking it during the day for the pain. The > old neuro told me to only take it at night. So last weekend I tried it > during the day to see how it would do for me and it didn't knock me out like > I thought it would. I think I will get so much better care here than where > I was. > > Prayers and hugs, > Re: neck pain > > >Greetings Bill & ! > > > >Hope you don't mind my jumping into the conversation here ... Even if you > >do, here I am, anyway! ;-) > > > >Neurontin is an anti-convulsant used by persons with Epilepsy to help > >control symptoms. Doctors also noticed it helps manage nerve pain. The is > >an 'off label' use of the medication. > > > >Sometimes, nerve pain can be so intense it causes cramping. ly it can > >be hard to sort out one from the other. For instance, I have nerve pain in > >my feet and hands. They also cramp. Does that result from the pain? Are > >my muscles just attempting to flex away from the pain? Or does cramping > >trigger the nerve pain from over stimulated nerves? > > > >Right now for me, the neurontin helps control the awful tingling and > >electric shock sensations. It does not reduce (at least to my knowledge) > >the cramping. But I'm definitely not willing to stop the neurontin to > check > >this hypothesis !! > > > >I can live with this, but my bet is that by next March (next scheduled > >neurologist visit), I'll look into medication for the cramping. > > > > > >Regards, > >=jbf= > > > > B. Fisher > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Wow, That is exactly what I have too Donna Maggard Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Greetings ! Glad to hear you are getting better answers with your new neuro. Yes! Neurontin can and should be used night and day. I take three pills. One morning. One mid-afternoon. And one at night. By the time the next dosage is due, if I forget one, the symptoms appear, and I notice it. By the way, you might find you are better able to cope if you can control the nerve pain. Without neurontin, I do not function well ... often curl up into fetal position because the sensations are overwhelming. But with it, I function quite well. > The neck thing is really weird. I have what feels like to me a pulled > muscle (ripping, burning sensation) from the same part of my back / > neck / shoulder area. I get the sensations more when I'm tired and > feel like it must be stemming from the neck. The new neuro says it > may be a nerve that's acting up. I have the same sensation in my arm. I think it's some carpal tunnel syndrome. My doctor thinks it's something else. Who knows! Point is that rest really is the best cure for that. It never really goes away. But when it flares up, it's time to at least rest it. If I can't stop typing, then it's time to put on the splint. I would think a neck collar / brace would also help you. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Greetings ! Glad to hear you are getting better answers with your new neuro. Yes! Neurontin can and should be used night and day. I take three pills. One morning. One mid-afternoon. And one at night. By the time the next dosage is due, if I forget one, the symptoms appear, and I notice it. By the way, you might find you are better able to cope if you can control the nerve pain. Without neurontin, I do not function well ... often curl up into fetal position because the sensations are overwhelming. But with it, I function quite well. > The neck thing is really weird. I have what feels like to me a pulled > muscle (ripping, burning sensation) from the same part of my back / > neck / shoulder area. I get the sensations more when I'm tired and > feel like it must be stemming from the neck. The new neuro says it > may be a nerve that's acting up. I have the same sensation in my arm. I think it's some carpal tunnel syndrome. My doctor thinks it's something else. Who knows! Point is that rest really is the best cure for that. It never really goes away. But when it flares up, it's time to at least rest it. If I can't stop typing, then it's time to put on the splint. I would think a neck collar / brace would also help you. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Greetings Bill! > For your hands, get some Silly Putty ... I LOVE it! Toys R Us, here I come! ;-) Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Greetings Bill! > For your hands, get some Silly Putty ... I LOVE it! Toys R Us, here I come! ;-) Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 yeah and u can press it on the comics and make pics:) lolol thanks for making me smile! nancy m. Fisher wrote: > > Greetings Bill! > > > For your hands, get some Silly Putty ... > > I LOVE it! Toys R Us, here I come! ;-) > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 , Sorry that you did not hear that from me before, I put that up on the list every once in awhile. In 1961 I broke two fingers playing softball and had one of them in a weird traction cast for 5 weeks. They would not move at all when the cast came off. The PT gave me a small container of Silly Putty and said more would cost $5. I found it in a five and dime store for 19 cents. After 2 months of PT, the doctor said I would never be able to completely close my fingers and that I was considered a 20 % loss of movement. At my last PT session the PT said keep up the exercises with the Silly putty. About a year and lot's of squeezing, I could completely close my fingers. I can not quite open those two all the way so I ended up with about a 5% loss. The opening muscles are much harder to exercise than the closing muscles (as you should know by now). I did push ups against the wall to try to gain range of motion to open my fingers. Charlotte's hands are closing up too, so remember to do opening exercises of some sort as well. Take care, Bill and Charlotte -------------------------------------------------------------------------- Fisher wrote: > Greetings Bill! > > > For your hands, get some Silly Putty ... > > I LOVE it! Toys R Us, here I come! ;-) > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 , If you take a newspaper picture of a politician you don't like and put the silly putty on it, you can have a lot of fun distorting him (or her) ) Take care, Bill and Charlotte ----------------------------------------------------- nancy wrote: > yeah and u can press it on the comics and make pics:) lolol thanks for > making me smile! > > nancy m. > > Fisher wrote: > > > > Greetings Bill! > > > > > For your hands, get some Silly Putty ... > > > > I LOVE it! Toys R Us, here I come! ;-) > > > > Regards, > > =jbf= > > > > B. Fisher > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 , You are describing exactly what my sister seems to be experiencing. It is all in the shoulder and neck area. She sometimes says that it is pulling. She has been on 4800 mg. of neurontin for the last 6 months and I am guessing that it makes it somewhat better. She is, for the most part, in agony most of her waking hours. Just this last week, we tried her on celebrex and gave it up today as it did zip for her. Now I am wondering if perhaps baclofen might bring her some relief. This has been going on for 2 years and I feel totally helpless. You may or may not recall that Chrissie also has Down Syndrome which complicates things somewhat. So many seem to have this same complaint and it seems that nobody has really found relief for it. It is always good to read your posts. By the way, you and Chrissie are the same age. Hang in there, & Chrissie Quote Link to comment Share on other sites More sharing options...
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