Re: managing neuropathy- Carol

[Guest guest]

Hi Carol,I understand your apprehension regarding meds.Let me give you my

personal med breakdown for the last 3 1/2 years:Current: Oxycontin ER (60Mg3),

Morphine Immediate release (15mg x2), Neurontin 600mg x3, Savella 50Mg x 2,

Baclofeb 20Mg. For narcolepsy Adderoll and Ambien and amitriptyline.Stuff

before: Lyrica. Cymbalta, Dilaudid, Norco etc

It's quite a list.

Personally I have not had any side effects and have worked etc while taking

these meds. The only thing I have had are nausea if I don't eat with Savella,

and a bit of a memory issue with numbers, but that is all gone now.

So it really depends on how you respond to medication. No one could tell if I

was on these meds, I live my life and even started school. No problems for me.

Lyrica is a great medication, but has some side effects. My doc told me it

either works, or not. The only thing that happened to me is the leg swelling, so

I stopped taking it and called my doctor.

Neurontin helps with that electric and burning pain. I have been taking it for 2

years, and only when I got to the max dose did I have issues. I think the max

was 1100 MG x 3. I think it was ME messing up and not taking it every 8 hours,

so sometimes I would overlap and have weird issues with it, like being dizzy

etc.

Overall before my medication I have a pain level of 7.. maybe 8 if I do too

much. So I am PHYSICALLY unable to sit, concentrate etc with that kind of pain.

But pain level wise we are all different too So you may have less pain. I

have a constant toothache like pain in my lower back, drives me NUTS.

Savella is an antidepressent, but it is used for fibro like pain, I don't belive

it is a first line treatment, I think you have to fail Cymbalta etc and then get

a script. From the website: selective serotonin and norepinephrine reuptake

inhibitors (SNRIs). It works by increasing the amount of serotonin and

norepinephrine, natural substances that help stop the movement of pain signals

in the brain.I was told it produces more serotonin than a regular SSRI or

something along those lines.

Only you can determine what is right for you. I do a lot of deep breathing, take

breaks, walk around etc. However that has caused some issues in my work life, my

employer was always on me for getting up What can I say? I'm a rebel! You

def. want a doctor who is comfortable discussing these medications with you, and

going over the side effects.

I am not groggy on a daily basis and I try to do all I can, without the

medication I was not sleeping at night, taking baths at 3am and could hardly

drive.

We discussed addiction here, and really it's about taking the dose you are

prescribed, at the time you are told to do so. People get in trouble when they

add a pill here and there. I don't get a " high " from any of these meds. The

other thing is that there is a huge difference in dependence/tolerance of a

medication, and addiction. Tolerance is physical, while addiction is a mental

issue.You will get tolerant to any med, and you may have to increase your

dose, but that does not mean you will rob a pharmacy to get your meds.

I hope you find the best solution for you, we are all here to answer your

questions if you have any.

All the best,

Subject: Re: managing neuropathy

To: tetheredspinalcord

Date: Wednesday, November 23, 2011, 8:23 PM

 

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

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> Subject: Re: managing neuropathy

> To: tetheredspinalcord

> Date: Wednesday, November 23, 2011, 5:04 PM

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> The side effects of lyrica or neurontin? That has been very helpful

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> my daughter. Others use the old style anitdepressants for neuropathic pain

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> such as elavil..good for sleep too. What meds does the MD want you to not

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> take? Randee

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> In a message dated 11/23/2011 4:35:42 P.M. Central Standard Time,

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> cbrimhall@... writes:

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> I am wondering if anyone will share how they have successfully managed

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> neuropathy? I am a year post op. Every time I exercise my legs ache horribly.

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> I am trying to remain positive and understand that nerves take time to heal

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> after spinal cord shock. I am continuing pt despite the pain because I want

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> to be strong again. I am wondering if people have had success with

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> medication to treat these symptoms? Or, a simple hot bath after exercising/

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> walking? I can walk for 10-15 minutes before the neuropathy becomes

intolerable.

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> My Dr does not want to start a pain management regime since I am more or

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> less managing daily activities and the side effects will exasperate bowel

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> issues... any advice or insight is appreciated.

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