Hot Spots

[ali100]

Hi everyone...I'm new.  Not to MS...it's been 25 years....but to this forum.  I'm one of the lucky ones who over the past 25 years could go through life without most people knowing I have any sort of disease.  I push hard to stay fit & intouch with friends cause I think the human touch is so healing. But lately the pain of the "hot spots"...skin sensativity is just unbearable.  It is difficult to get dresses as the feeling of anything rubbing on my legs or arms hurts.  The weather is beautiful out side but the feel of a breeze on my skin is painful.  Even my left inner eye, ear ball and throat hurt!  The usual pain medication doesn't seem to work...although T3's do but that's not an option.  

Does anyone else experience this same feeling?  It is so frustrating!  Any suggestions that you've tried & have worked??

Thanks for listening...

ali

[PastorDan]

It wasn't easy, but I think I am now getting relief from some of that kind of thing via gabapentin (Neurontin), which was prescribed by my neuro-ophthalmologist for the pain behind the eyeballs.  I described it as feeling like the back side of the eyeball was bruised.  Neurontin had some powerful side effects, though, so I had to ease up to the full prescribed dose much more gradually than the doc initially proposed, or I wanted to doze off in the middle of practically any activity.  However, I did adjust eventually, and I've had a lot less pain all over.  I'm on 900 mg/day now, which I understand is still not a strong dosage.  I've heard of some taking 100, and some who use much more.  The number 3200 mg/day seems to be stuck in my memory somewhere, and I think it is related to this drug.  I am undx so far; most of the docs keep trying to treat me for migraine, unsuccessfully.  I keep telling them that I've had classic migraine, and this ain't that.

[sandie490]

I'm kinda new myself, and I am in limboland right now, but new to that also.  My battle is just starting in the dx process, I really feel for those who have been this way longer.
Anyway, your discomfort and pain, does it hurt when some one pokes your arm to get your attention,and do you feel almost bruised all the time, and does it also hurt to scratch an itch.  Instead of feeling relief when you scratch an itch does it hurt?
Also, Does hot water, not very hot even moderately hot in the shower hurt your skin?
I know these sound like strange questions, but they are legitimate.

[ali100]

Thanks Shell.  Things are better today...it's funny how it gets better as quickly as it comes sometimes.  Looking forward to spending some time in the gardens today.  Tonight's taekwondo class will be so much more enjoyable than Tuesday's!

I've read that others have used topical creams (pain relievers) like for arthritis & stuff.  I tried one that had alcohol in it...wrong one!  This last go was a tough one (the most intense part only about 1 week, still sensitive today but wouldn't call it "pain")...not the longest i've had but one of the most painful.  I have some level of discomfort almost everyday now since last November...most of the time it's not too bad...but sometimes...yikes!

Hope you are well

ali

[sllowe]

Hi Ali,

Welcome! Thank you for joining us.

The only thing I was prescribed for parathesias was Lyrica, but I didn't try it.  How long has this been going on? I agree, it's beyond frustrating - it's painful and non-stop! Brings you to your wits end.

My worse bout lasted about 5 months.  Because mine was mostly my back, I found slight relief (if even in my mind) in readjusting positions, but nothing I tried helped it back down.  Just time and daily coping stuff really.

Hoping some others have experiences to share w/something that has worked. Hope you are able to stay on with us.  Tell us how you've made out through the years if you feel comfortable to do so.

ttys,
Shell