Guest guest Posted November 23, 2011 Report Share Posted November 23, 2011 I take a low dose of Elavil and have no side effects, but maybe I would if the dose were higher which I think you would need to control the kind of pain you are having. Never heard of Elavil affecting bowel issues. Dee To: tetheredspinalcord From: Randeejae@... Date: Wed, 23 Nov 2011 18:04:41 -0500 Subject: Re: managing neuropathy 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 23, 2011 Report Share Posted November 23, 2011 Hi,I take Neurontin and Savella.Savella is an antidepressant used in fibromyalgia. I had all of my joint pain stop in 1 week after taking it, and it improved my back pain a bit also.The Neurontin has helped with that " electric " feeling for me. If you are having major pain in your legs while waking up, I was given Valium for that. After my surgery for MONTHS I would wake up with my legs in a spasm and feeling like someone hit me with a baseball bat. Not sure if you have that? It would last for 1-2 hours and I would not be able to walk. I took Valium for that. The side effects of Lyrica for me were severe swelling of the legs, and it did nothing for pain The Neurontin made me lose my memory a bit. esp number recognition. So I cut my dose down 6 months ago. I also took Cymbalta.. but did nothing. " and the side effects will exasperate bowel issues... any advice or insight is appreciated " Not sure what he is referring to here? I have had NO bladder issues on these meds. The Savella sometime causes nausea, but I just eat prior to taking it. I do take hot baths, use a heat pack etc.. But that in conjunction with the meds.  Subject: Re: managing neuropathy To: tetheredspinalcord Date: Wednesday, November 23, 2011, 5:04 PM  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 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 Carol, I'm sorry the SB clinic wasn't much help to you. Do you have a MSCIC near you? Here is a link to the site about MSCICs as well as a list of the facilities. http://www.spinalcord.uab.edu/show.asp?durki=104757 & site=1226 & return=21392 Even though they are Model SCI Centers, they also treat SCD as well. If you don't have one close, perhaps you can contact the one closest to you and see if they know of any physiatrists in your area they would recommend as being knowledgeable about SCI. The options for managing neuropathy are primarily rest (that usually helps most people's neuropathic pain) and meds. You can also try PT and acupuncture (I haven't tried it yet, although my physiatrist is certified in acupuncture and specializes in treating brain & spine neuro issues with it. He has recommended it for me, but I need to find a provider closer to me since it is something you do 2-3x/week and he is just too far of a drive for that. But, I look forward to giving it a try). Basically, if it makes it worse, don't do it. Great answer, huh? Savella is a med for fibro. I asked my MD about it, and he said that it is very closely related to one of the meds already used for neuropathy (I'm thinking Cymbalta, but I'm not sure) and thought that if that one didn't work, then the Savella wouldn't either. Additionally, it is quite expensive. You can't really take anyone's experiences with any of the neuropathy meds because the side effects vary so widely. I seem to have a problem with those classes of meds (anticonvulsants) and the tricyclic antidepressants. I rarely have negative side effects from any med, but these were just a problem for me. I know hordes of people that take Neurontin without any major issues. It is also the one that is probably most successful in treating neuropathy. Most MDs start with it. The nice thing about the tricyclics is that you take them at night. They do often cause drowsiness, but since they are taken at night, its not much of an issue - they will help you sleep. There really isn't a med for neuropathy that can be taken on an as-needed basis. The meds that help the mis-firing nerves are anti-depressants and anti-convulsants. Both classes take about 2 weeks for you to reach a therapeutic blood level. Just don't write off a med because it made someone else foggy, unable to concentrate or unable to stay awake. For every person out there that has these problems with them, there is at least one (if not more) who can take it without a problem. Its really just a matter of trial and error until you find that right one that works best to control the pain without side effects you can't manage to live with. I can't answer about increasing activity level with meds too much since I don't take any. But right after my second surgery, my neuropathy was through the roof. There was no way I would have been able to go back to school (I was d/c from the hospital the day before classes started) without the Tegretol. I may have been running in slow motion (or so it felt), but I wouldn't have been running in any motion without it. I would have been laying in bed trying to keep the mattress and covers from touching my legs instead. So, back then, yes, I was able to leave my bed with medication. I wish I had a better answer for you. Have you gone to PT? Maybe PT could use u/s or eStim to help with the neuropathy. Have you tried acupuncture or massage? Acupuncture is supposed to be quite helpful. I know a handful of people who have used it successfully to treat pain associated with their SCI Best wishes, Jenn > ** > > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2011 Report Share Posted November 26, 2011 , Sorry to hear you are having problems. I am curious if you had the constant toothache like back pain prior to surgery or did that start as a result of surgery? I sure hope you get good MRI results. > > > > > > From: Randeejae@ <Randeejae@> > > > Subject: Re: managing neuropathy > > > To: tetheredspinalcord > > > Date: Wednesday, November 23, 2011, 5:04 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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...
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