What do you do for nerve pain when the meds aren't working?

[Sarahsmom46]

Do you guys do when the nerve pain is no responding to your meds?  Any thing you came up that helped you like warm towels, ice, stretching, whatever.  I don't know anything else to do while.

The doc here in the rehab upped my dose of Gabapentin 3 days ago to 600mg 3x day.  It is not kicking in and my legs are in sooooo much pain.  They have an order for vicodan to be taken only at night, but that med isn't doing much at all to help. I also tried SCDs last night.  They act like a massager of your legs and help keep the circulation so you don't get blood clots. They helped me in the past, but unfortunately it didn't really work this time.

Is there anything else you guys can think of?

One more thing...I think this is a result of the solu-medrol and the prednisone taper. It hasn't been a problem for me in the past.  

Thanks so much.

Julie

[RedFlame]

I had the Zanaflex for a while and really liked it--but like you said, it doesn't last long.

I was switched to Baclofen and it has really helped.  It holds me longer.  just a thought

Red

[Lulu54]

Pain can be managed through acupuncture for many people, but not all.  It's worth a try - the needles themselves are not painful - they are about the size of a human hair.

Michelle is right -acupuncture is also proved in controlled studies to work on TN.  

I say give anything and everything a try until you find something that works for you.

[michelleric]

Hey Julie,

I have tried lots and lots of meds for nerve pain.  Dont know if it is the same pain as you.  I tried baclofen, neurontin and lyrica,  Perhaps ask doc if any other meds might benefit you?

I have also heard good things about Acupuncture.  I think Lu has some good ideas with that.
Michelle

[Sarahsmom46]

I like all the ideas suggested above. I hear the other patients around my area getting their nighly ambien and probably should have asked for it to.  But,  they are allowing me to use my zanaflex along with copax and ampyra so I do have the zan that helps me fall asleep finally.  

But, the zanaflex only works for about 4 hours tops. Then I wake up and from the pain and there is no way I can take another one and be any good in the moning.  

Red, your idea about progressie relazation is one I tired for the first time this week. I had a lady come and perform reike and it was a shock that my body responded.  I don't necessarily go along with unfamiliar stuff, but heck it worked.  

I am pulling all the tricks I can think of and the new ones you all have suggested  to get through this.  If I had MM available, I'd definitely go for it too.  

Thanks again for the interesting and helpful feedback.  You are all wonderful as usual.

Julie

[COBOB]

Rather than Hijacking this thread, ask the question in a new post and I'll pos about my experience in Colorado.  Rules vary state to state and maybe this might be a good time to bring it up.

[RedFlame]

cobob,   oh how I would love to use MMJ in a vaporizer or in butter etc.  I know i could get a card easily.  I am terrified that my doctor will refuse to continue to treat me or that my other meds will be pulled.

A nurse suggested it but I am soooo scared.

It calms me and my muscles relax and I sleep really well.  Based on past experience years ago.

I don't want to hijack this thread but how do you go about using it without repurcussions

Red

[Sumanadevii]

Cobob, my sister uses it.  I am sometimes so tempted to join her.  I am too embarrassed to talk to my doctor about it....so I haven't.  I used the stuff as a young woman for much different reasons than I would today but oooooo those memories.  I do know it would relax me and I understand it is good for respiratory problems!  Gee, if only my doctor would let me!!!!!  I could cure the breathing thing AND pain in one full swoop!!!

[Sumanadevii]

Have you asked for any sleep meds?  Ambien might help at night getting you off to sleep.  I know it helps me.  If the Ambien doesn't work, I just get up and toss the sleeping off.  I know it isn't going to happen so I find other things to do.  Normally something active not passive..  I scrub something or clean out a cabinet or dust...Anything that makes me move and takes my mind into another place.  Then I try pain meds and maybe a movie (light humor or romance type) on Hulu.  Sometimes then things have calmed and I will try again....

Also I have a nice large size moisture heating pad that when turned on stays on for about a half hour before turning off.  I will put it across my legs in bed and sometimes it is enough to help me get into a sleep....

All just from my own experience.  Hope you find one of ours helpful.

Hugs, Sumana
Pain *****..

[COBOB]

When the pain meds don't work or don't seem to be enough, I resort  to marijuana.  Colorado is an Medical Marijuana (MMJ) state.  My pcp and neurologist are both onboard with my use of a vaporizer.  It cooks of the active chemicals, but there is no or very little smoke involved.  It is a pretty common before bed medication for me.

In my case, my legs keep me up at night.  I can't get comfortable.  They hurt in the back they are straight and in the quads if they are bent.  It all seems to be spasticity.  Not matter what, they hurt.  No pain meds seem to effect this, and some times even the antispasmodics and muscle relaxers are not up to the job.

If you are going to use MMJ (whether legal or not in your state) talk with you doctor.  They need to know that you are using alternative medicine to deal with some of your symptoms.  This advice is also true if you are using massage, chiropractic, herbal medicine, etc.  When I brought it up, none of my doctors were shocked and they all seemed to understand that, in my case, MMJ relived the symptoms with the least side effects.

Bob

[RedFlame]

Julie,  I'm wondering if taking muscle relaxants help you or if you need them boosted a bit.  I take Baclofen and Gaba but still hurt so I use Vicodin to take the edge off.

I use progressive muscle relaxation too.  I will look for a website that might have some information on it.  Or perhaps you have a PT who can help you.  

I sit in my pain all day as well and don't have contact with other people that much.  I have found that doing research or learning a new skill on the internet helps divert my attention.  I have spent hundreds of hours trying to learn CSS for example or learning online games.  There is a virtual world with and MS Island that I found from the national MS society.  My internet connection is too slow, but learning that takes up time.  

Then stretching or sitting/laying on a different group of muscles.

hope you feel better soon!!

Red

[Sarahsmom46]

Ales. you are righ, I am literally sitting in my pain.   Like the idea of distraction.  I am trying to keep myself busy at all time, being on the computer, crocheting a blanket, reading, getting out of the room and rolling down the halls. That is helping, but the nighttime!!!!!!!  Its a nightmare. Hypnosis sounds interesting.  I did try reiki last week when a volunteer here in the hospital came up and asked if I'd be interested.  It was s calming - didn't do much for the pain, but when I was calm the pain wasn't so bad

In the old days I'd get in a hot bathtub and let the aches and pains melt away.  Well, that's not an option any more.

Thanks Ren for the "stick" idea. I'll look into it.  Sounds like it could be a good tool for my bag of tricks in a pinch.  

Julie

[rendean]

Julie,

My thick headed brain just remembered that during the day, I use a product suggested by PT and is endored by Duke University track team. It's simply called "The Stick".

I bought the travel size and it works to relieve cramping. It's a smiliar effect as a massage but not near as comforting when you're doing the work, but the end results are good. The web site is the same as it's titile under a Google search.

Hope it helps, on occasion I have gone to bed with it close by for really bad relapses,

Ren

[HVAC]

Julie it is hard for you because you are literally sitting with your pain few distractions. I feel mine most at night.

I go to a therapist who specializes in hypnosis. A lot of the exercises help. I can sometimes bring the pain down. I even stopped one of these diaphragm attacks in December. It does not always work and it does not take all pain away. The theory is sound, distraction and relaxation. It is what Ren basically did for me yesterday.

I wish you Godspeed on your recovery. You have been through so much.

Alex

[rendean]

Howdy Ms. Julie,

I see you have joined Michelle and I in the steroid insomnia club. My last dose is today, thank goodness! I have only dozed about 45 minutes this past 24 hours but have spent a good part resting and I still have leg pain. Usually {days without roids, DH} does what we used to call an "Indian burn' {no offense intended to ANYONE on this name, but it's the only term we used in S. Florida.

Anyway it involves rubbing the skin until it feels like its on fire and when you used to scream "stop" it was continued another 10 or 15 seconds. this is only a temporary aid but if am I am sleepy it works look enough to doze off. Although , NOT working this time.

I need to rest as tonight my middle child is taking me to the play "Beauty and the Beast". It will also be the unveiling of the Duet Rollator I purchased last year. I sooo need some sleep.

Sorry to hijack your post Julie. I've been wondering how you're doing. Perhaps the extra work to go from wheelcahir to ambulatory is what is  causing this new pain. If so , then it's a good kind of pain because it's going to take you where you need to go.

Feel better!

Ren