how do you deal with the pain?

I have horrible nerve pain and it has been even worse these past few days.  How do those of you that have the pain deal with it?  It is the worst in my left arm.  I try to not use my arm at all but it hasnt seemed to help.  It was so hard to work today (im a second grade teacher) I do not even want to go in to work tomorrow!  I just want to lay in bed all day and wave my wand so my house will be clean!

 

ooooh Elaina!!

Teaching is such a physical job too!!!  I am so sorry.  I can't help much here.  I don't often deal with pain.  If I do, it is at the end of a busy day that I over did on and I can just rest and take strong meds that knock me out.  I just thought I would add my support.  You are really having a rough go right now.  Hang in there and know that I am thinking of you!!

Love and prayers,

Hi, I'm kinda curious about this too as I experience nerve pain but I've been using Tylenol #3 and it seems to work well for me, though only when I go to sleep at night as I could not function all day on it, or drive a car. The problem is that codeine gets built up or addictive and I guard against that so I use it only when I'm at the intolerable point but it works well.

Hubby actually got a virus in his long thoracic nerve last spring... it was the only thing that touched it.

I'm going to talk to my GP tomorrow about Neurontin... have wondered if it would help on a regular basis... keep me from feeling on fire all over.  Somedays I don't even want to be in this body the way it hurts!

 

Hi Elaina, I too have had L arm pain (and left hand stiffness/pain). I started Neurontin last summer during a flare where the left arm pain was excruiating. It was very hard to do anything. I really feel for you having to be at school working thru the pain. I am a stay at home mom now, so at least I was at home with it, but it was still so hard to lift my little one, cook, most anything. I'm left handed too so it's my dominant side. At first, my dr. only gave me a 30 day supply so I took that to mean that my attack and pain should be over by the end of the prescription, but the month came to an end and pain was not gone. Needless to say I called and they phoned in refills, but I noticed everytime I tried to wean myself off of it that my pain would worsen. Then I went to ms specialist several months later and when I told him how the pain was worsening even on the med and how tired I was, he suggested trying to come off the Neurontin. I did try and did so very slowly (over a week or so) and noticed that at first my pain got worse but after the 5th day I noticed it was getting better and then finally no more pain. I just figured at that point my flare was over and just didn't need it anymore. Definitely hard to know that when you are on it. Anyways, I am back to having some arm pain again with this new flare...seems as if all my old symptoms are taking turns in coming back for a visit with this one. I have a whole bunch of Neurontin left if I need to go there again, but hopefully not. On the plus side, I never slept better than with that medicine. :) Anyways, I hope you continue to have good days. I am sorry you are having so much trouble with finding the right medicine for you. Take care...Kathy

LOL Mojo I like your synopsis alot! I've always wondered about the side effects cautions and the cymbalta seems to be a tricky way to get the antidepressant into us when as you said, if we didn't recognize the potential for depression with this disease, we'd be a little crazy too!

Barb Luckily for me I'm good with codeine but I'm allergic to Demerol so that sometimes presents a new set of problems for pain killers in that "family" of drugs which just makes horrendously ill on top of the pain.

Everything is so individual about our nervous systems. That's why I just smile when someone says to me after asking exactly what's going on, and I try to briefly explain a few symptoms, they say... "oh well I get that too!"... I'm so glad for them they really don't!

gretchen...i so don't want to step on anyone's toes, or cause anyone to fear "potential" side-effects...i hope all other readers noted my "strictly personal" disclaimer as well. again, this is just my opinion...and my frustration with regard to meds:

when i had my first attack, i just wanted to take a pill that would stop all the symptoms. now, 12 years later i'm no closer to receiving a cure-all rx than i am to gettting that unicorn i'd asked for on my 9th birthday. doctors can tell us (or neglect to tell us) only what benefits / side-effects may or may not occur with a particular course of treatment. learning what others experience and how they manage their ms is invaluable...what works for each varies, but it gives us a "human" reference point when considering options. i choose doctors who assist me in evaluating symptoms vs side-effects based on my individual medical history to avoid compounding existing or creating new health problems.

the medical profession as a whole, seems to overlook non-pharmaceutical ms management options. because we're terrified of what our bodies are doing to us, we allow it....and that scares me too. out of necessity given my negative experiences w/meds, i've learned some effective alternatives to ease both my ms and non-ms symptoms (i.e. the miracle of ice and the benefit of breathing things again)...and look to others for additional suggestions. sometimes the simplest things help me the most and since disability doesn't pay that well, they're also the most cost effective.

by the way, have been practicing yoga for several years....was great to see an earlier post that others are using it too.

Hey Gretchen, I appreciate your sensitivity to everyone here... I would ask forgiveness if I offended anyone on my comment about the "tricky way to get us on an antidepressant" but I didn't mean it negatively though rereading it now I see how it could sound that way.

I've just fought so hard to keep off of those things while trying to get to the bottom of this and had I taken those and not been keenly aware of my body's problems I'd be worst off now. But 10 yrs ago, my GP then thought Paxil and Ativan were my answer because my brother had died and he felt I was in a depression. Well of course I was depressed but my thyroid had also begun to fail and he refused to accept that even though his own labs showed it consistently several times below or low... finally sent me to an endo who figured out my thyroid quit processing one of the T's... since then I'm on the right med... not an antidepressant. It would have masked way too much.

So for anyone who might have been offended, I'm sorry but this is where I'm coming from and I'm sure many can relate. I think its more prevalent with women for drs to try to pass off "depression" as our issue rather than listen to us sincerely that we have real things going wrong inside our bodies.

Thanks everyone.

D'Awesome,

I can relate to what you are saying, I too have alot of yuck that the dr.s want to say I'm depressed. so...
Last yr I was diagnosed with MS, my daughter and grand daughter were shot and now my son and I are on the verge of homelessness, my boyfriend thought having ms is gross.
I miss my girls..........

Thanks Gretchen, I agree on the sensitivity... the main key is us listening to ourselves first and foremost. It's just too horribly easy (IMO) to be discounted down to feeling like what we go thru is "silly nothings" because others can't see the symptoms. Sure stress doesn't help the disease but it's not the REASON either.  I have learned to believe my body first and foremost even against the drs and ultimately they usually come around (except the GP I left long ago who wisecracked "you wish it was your thyroid" when I was gaining a pound a week and falling asleep midafternoon! BTW same GP who thought Paxil & Ativan was the answer, yep, I switched).

As for losing my bro, yeah, it's one of the toughest life experiences I ever had to go thru, but his choices put him in a position to die - drugs and alcohol and lotsa money... very sad mess. I'll see him in eternity thank God.

ddms, my prayers to you for your situation. I know you hear me and how hard it is for us to be heard by our drs when our drs can't imagine our lives and the stress at times.  My GP was also my mom's Dr before she died and I was her caregiver 24/7 that year (2003-04) and I was fortunate to have a GP who could see "seasons" of life and know that it would ease up and then help me manage everything else. She's very attuned to me being attuned to my body... drives her nurses nuts when she listens to me and agrees. But it's what I love about her... she hears me. She was the first to suspect and detect the MS, the first to finally say let's get you to the neuro.

I so hope things get better for you soon. When my 2nd hubby left me, a friend gave me an old Bonnie Raitt song line... "if you can stand to leave me, then I can stand to see you go!"... I'd consider that with a boyfriend with an attitude like yours showed. Gross? Puleeze! Sure hoping you find a great guy who'll see the best you thru all this!