Guest guest Posted November 24, 2011 Report Share Posted November 24, 2011 For me, swimming is the one thing that doesn't flare up my pain, most of the time. Walking is limited to 15-20 minutes and can't do other cardio activities, so swimming is a life-saver. I also do pilates twice a week on the reformer machine with a physiotherapist. DeeTo: tetheredspinalcord From: cbrimhall@... Date: Thu, 24 Nov 2011 02:23:33 +0000 Subject: Re: managing neuropathy Thanks for the input. I need to know what questions to ask my doctor to discuss options. I really have not had any aftercare due to insurance changes and will be switching insurance/ drs after the new year, again. I attended the spina bifida clinic last week which was a waste of time. The dr at OHSU didn't listen to me. He felt that my neuro function had improved since when I attended clinic in 2004 my sensations in my legs were asymmetrical and now they are symmetrical. Well, the truth is that both legs have declined and my right leg caught up to my left. I feel like I have snow pants on all the time due the numbness. Furthermore, since I am not pooping in my pants, the dr didn't consider my incontinent - nevermind that my bowels have been leaking since my surgery. (I manage with fiber and probiotics.) We want to avoid any narcotics as narcotics constipate me. I do have a prescription of valium 2mg which does help especially at night if my legs are crazy after a hard day. But I only take this once a week as I am afraid to become addicted. I am curious about Neurontin and Lyrica if these would indeed help me increase my activity level. I currently use rest and limit my activity to avoid the neuropathic pain. I have gained weight due to lack of activity and want to get up and do something about it. I have never heard of Savella. I work full-time and do not want to take anything that will make me foggy. It would be best to find something that I can take as needed and not every day. Nonetheless, it sounds like people here have successfully managed pain with these meds, but are have you been able to increase your activity level? Thanks, Carol > > > Subject: Re: managing neuropathy > To: tetheredspinalcord > Date: Wednesday, November 23, 2011, 5:04 PM > > > > > > > > > > > > > > > > > Â > > > > > > > > > > The side effects of lyrica or neurontin? That has been very helpful for > > my daughter. Others use the old style anitdepressants for neuropathic pain > > such as elavil..good for sleep too. What meds does the MD want you to not > > take? Randee > > > > > > In a message dated 11/23/2011 4:35:42 P.M. Central Standard Time, > > cbrimhall@... writes: > > > > I am wondering if anyone will share how they have successfully managed > > neuropathy? I am a year post op. Every time I exercise my legs ache horribly. > > I am trying to remain positive and understand that nerves take time to heal > > after spinal cord shock. I am continuing pt despite the pain because I want > > to be strong again. I am wondering if people have had success with > > medication to treat these symptoms? Or, a simple hot bath after exercising/ > > walking? I can walk for 10-15 minutes before the neuropathy becomes intolerable. > > My Dr does not want to start a pain management regime since I am more or > > less managing daily activities and the side effects will exasperate bowel > > issues... any advice or insight is appreciated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2011 Report Share Posted November 24, 2011 Hi, Your struggle following surgery is very familiar to me. I had op in 2007 and for me the worst time was certainly in the first and second year - that sounds bad but this mail is to give hope as things can as was case for me settle down a bit. The reasons for this stabilising are difficult to identify for me - is it that my nerves have settled down following op and years of being stretched? Is it the fact that my mind is in a better place and if you are happier and more positive then pain and disability affect you less? Is it the fact that I have tried many drugs and the cocktail of Lyrica, Cymbalta and Sodium Diclofenic seems to help? Or is it a combination of all of these?? Sorry not to have answer and of course I know and accept that things can go down hill again and I still get periods of 3 to 4 days when symptoms are worse - but stick in there, try meds to see which help, keep exercising - I can only walk for 20 mins but swimming is excellent - hope things improve for you soon, All the best, Barry Sent from my iPhone > > For me, swimming is the one thing that doesn't flare up my pain, most of the time. Walking is limited to 15-20 minutes and can't do other cardio activities, so swimming is a life-saver. I also do pilates twice a week on the reformer machine with a physiotherapist. DeeTo: tetheredspinalcord > From: cbrimhall@... > Date: Thu, 24 Nov 2011 02:23:33 +0000 > Subject: Re: managing neuropathy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks for the input. I need to know what questions to ask my doctor to discuss options. I really have not had any aftercare due to insurance changes and will be switching insurance/ drs after the new year, again. Quote Link to comment Share on other sites More sharing options...
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