Update: Neuropathy

[treebranches]

I disappeared from the forums for a while.  I was in limbo from October until late January of this year.  I don't have MS but I do have neuropathy.

My neuropathy remains constant and has had its fair share of flairs where what you thought couldn't get worse does.  I take 300mg gabapentin 3x a day and it basically makes me feel high to where I still feel the symptoms but can't feel the pain.  It makes me foggy and aloof but happy and it allows me to get through the work day.

I'm fine with the physical aspects of neuropathy.  I'm fine with the burning, the electrical shocks, the dizziness and the lack of coordinating motor skills.  This morning I spilled coffee all over myself.  Twice.  I'm fine with it.

The worst part about having neuropathy, for me, is two-fold.  The first is knowing that the family members who aren't here to see me every day just don't know how it is and not realizing how hard it is to work full-time and go to school.  The second is my boyfriend, whom I live with, having to put up with my anger.  It hurts and I get mad.  He's the one there and I always take it out on him but he doesn't let it get to him, he knows it's just the pain making me hurt to the point of having to be angry at it through being angry at him.

I still live my life, but I feel kind of like I'm missing out because of this fog I put myself in to not feel the physical pain and that brings me emotional pain.  I feel like it's the drugs or me.

-treebranches

[jensequitur]

I wonder if you've got fibromyalgia, which has many of the same symptoms as MS, including neuropathy and disturbed sleep.   People with fibro often have irritable bowel syndrome.

Just my 2¢!

[treebranches]

Thanks for the replies.  While I was happy about having an answer at first, my neurologist could not explain my neuropathy and only diagnosed me with it as she couldn't call it anything else, which is not grating on my nerves.

I've been on the gabapentin since January and when I see my doctor here in a month or so, I'm going to ask about taking something else.

I'll start checking back in, I just needed some time to adjust to things.  :D

[Quixotic1]

Hey!!! You're back!!! YIIPPPPEEEEE!!!!!!!!!!!!!!!

I'm waiting for some meds to take effect, but I had to jump in here and say that gabapentin and Lyrica are NOT the only meds used to try to treat neuropathic pain.  In fact, one of the few that is FDA approved is carbamazepine (brand name Tegretol)  Specifically it is approved for Trigeminal neuralgia, but is used for other types also.

Also used are meds like amitriptyline, and Lidocaine patches, and other antidepressants.  

If you are so fogged out byt the gabapentin, then consider asking your doc for something to use with it so they can both be used at a lower dose.  The Tegretol makes you zooey for a couple days , then most people tolerate it really well.  Often two will work together and at lower doses than either one does alone at the higher dose.

It doesn't have to be a no-win situation.  I can't do it now, but will look at some of the data combining other drugs.

Maybe we can help, but not if you're a stranger.

((((HUGS)))) Quix

[shoshin]

I'm sorry to hear about your ongoing suffering. I am feeling worse myself recently and sometimes wonder if I should try some sort of med for symptomatic relief. Although I don't exactly have pain, certainly not excruciating pain, I find the constant burning, pressure, and stiffness to be wearing (and this also makes me irritable). On the other hand, I'm terrified of living in some kind of drug-induced fog. I'm spacey enough without medical help. It just seems to be a no-win situation. I'm sorry I don't have anything more helpful to say.

What tests did they do to dx the neuropathy? Do they have any idea what caused it? For me, "idiopathic" was a hugely frustrating dx.

sho

[Fluffysmom]

Welcome back; I showed up while you were gone.  

I understand about the pain and anger; my roommate and I both have pain issues and we take turns barking at each other.  We took stress reduction mindfulness classes together, and I took a pain management class, but the teacher isn't there when the pain is electric and doesn't go away.  Only the other person is, and some times it hurts when they're nice, when you just can't stop from lashing out.

We are best friends and have weathered the storms so far.

I took gabapentin for restless legs, and couldn't tolerate a higher dose for pain control.  I switched to Lyrica when a doctor told me it was a "cleaner" drug, doesn't gunk up the system.  I wonder if switching to Lyrica could help you, since you take a lower dose.  I used to take about 800 mg of gabapentin a day; now I take 50 mg. of Lyrica three times a day.

Some insurances don't want to pay for it, but you might ask your doctor about it.

I have been dealing with fatigue, which also puts my teeth on edge. I am undiagnosed and searching for answers. I am trying to stay positive, and the people here have really helped tremendously.  I hope coming back here helps you find your way through the fog.  I also hope you can find away to dampen the pain without dampening your spirit.

Wishing you the best,

Kathy

[sllowe]

Hey!  Only have a minute, but wanted to say HI....

WOW, has it really been that long since we've seen you ! Man, we are slippin'!

When did you start the meds?  Maybe some of the fog will wear off. .. I pray...

hang in there, stay w/us...What did the Doc say the Neuropathy was caused from?

miss ya,
SL