Itching to tell you

Hi all,

Every since this MS thing started I’ve had a terribly itchy back. It’s worst when I’ve just taken my clothes off. Very strangely, it only ever itches on my ‘bad’ side, the side where my leg is useless and my arm is clumsy. I’ve found a wonderful way of attacking the itching - it’s a telescopic metal backscratcher, which you can get on Amazon for under £3. It really helps.

Does anyone else have this itching thing? And is it only on your ‘bad’ side?

And now… I really need another really good scratch!


Hi Chris, How are you? Apart from itching that is . The same here mate, from mid back to shoulders, just the bits you can’t reach. I honestly could scratch my skin off sometimes. Mine comes on at the end of the day after eight, oh and one forearm too. Hydrocortisone cream seems to help if I can be bothered with the extreme yoga to get it there :slight_smile: Regards Paul

Hi, YES me too. My itchy back drives me nuts!

Do you notice it’s worse when you’re hot?

I know I have Uthoffs Syndrome… MS symptoms get much worse when hot… and wonder if it is part of that.

Paul, that would make sense for you… my MS nurse told me this in email:

Your normal body temperature increases in the evening in line with your circadian rhythms and this may help explain the increase in symptoms you have in the evenings.

Do you find it all worse in evenings?

Chris, I hadn’t noticed it worse on ‘bad side’… but now you come to mention it I think it is (mine is right side).

Pat x

Hi, yes me three!

All over the top of my back, itches like mad. Lasts about half an hour usually and nearly always happens when I’m in bed, which I suppose ties in with it happening when I’m hot. I haven’t noticed it just being on my bad side though.

It doesn’t happen so often these days though thank goodness - the contortions I have to do reach it, it couldn’t be in a more awkward place.

Hilary x

Hi, I came on here to ask if anyone had trouble with itching & saw your posts, however I think mine is rather different as its not just my back its all over & has been much worse since having an infestation of Scabies!!!

It does get worse when hot & due to my walking problems I sit down a lot so the itching is heightened in certain areas! I have tried every cream & lotion going but nothing helps & yes Paul I could (& have literally) scratched my skin off which results in scabs which in turn start to itch when they heal so I scratch again… its a vicious circle!!

I wonder if its down to the fact that the myelin is reduced or non existant on our nerve endings? I am seeing a Consultant Dermatologist on June 10th so am hoping he has a ‘miracle’ cure lol.

Jo x

Hi Jo… well it’s definitely the MS. Mine isn’t nearly as bad as yours… but I’ll get an itchy patch that will drive me completely nuts. I have found Doublebase gel useful… but yours sounds like it’s beyond that sort of help.

Fingers crossed the dermatologist can help!

Are you on any pain med’s? I have found my itching a bit better since being on Amitriptyline.

Let us know how it goes… poor you getting scabies!

Take care,

Pat x

Hi Pat

Thanks for your response. My Nurse was here & I read it to her she said the Dermatologist may prescribe Amitriptyline so we’ll see.

Yes the Scabies was horrendous & I keep making the spots bleed with the scratching ggrrrr!!!

Hope you never get as bad as me.

Jo x

Hi, I get really itchy shoulders, back and arms and find that Doublebase gel also helps mine. It is worse at night and can disturb sleep. It is far worse in extremes of temp - I really suffered in the cold during this winter. I think it is worse in hot weather but seeing as it is so long since we had any, I can’t remember! I hope the Dermatologist really helps you Jo - itching can be unbearable! Teresa xx

Hello everyone with manic itchy problems! Not sure if this will help. I have several different sensory problems, one of them is sort of itchy although not as you all describe…it’s more like a heat spot…sort of sore and itchy at the same time and they jump around my body, one moment it can be my scalp then my arms then my back and even sometimes underneath my toe or finger nails, which drives me mental

Grr…lost half of my post…sorry To continue I was advised to try Vitamin B12…I take 1000 mg daily from Holland and Barratt. Have only been taking for two months so not 100% sure if its working but thought you might feel it was worth a try. I am also going to get some doublebase gel too to keep as a standby…haven’t heard of it until Pat and Theresa mentioned it…I assume it can be bought from Boots? Here’s hoping for a sunny weekend Very best wishes, Nina

Hi Nina, My GP prescribes it for me - otherwise it is pretty expensive to buy! Teresa xx

Yep is expensive… but you can get it on Amazon. As Teresa says, best to get it from GP.

The patches you talk about Nina, sound a bit like what I get… it feels like sunburn. I’ll have it on my leg, say, really bad for a day and next day it’s gone completely but will then reappear on my shoulder or back. It tends to happen in areas where I also get temporary numbness.

Oh the joy of MS! No two days are alike!

Pat x

Morning, Thanks for the doublebase info Theresa and Pat, Pat, my patches are not big and they dart sound my body at a rate of knots! Sometimes I just get it for a few hours in the evening, sometimes for a couple of days. There’s another type of patch I get too, usually about the size of a bag of sugar, usually on my tummy or back , it’s just as though my skin has been torn off, it’s so so sore that I can’t believe that when I look at my skin there is absolutely nothing there because I cannot stand my clothes to touch it! I call it my shingles pain…not that I have ever had shingles, also get the ants crawling on my skin thing! As you say…the joys of MS but at least today we have sunshine again in Herefordshire . Regards Nina. x

Hi all

Thanks for all your interesting responses, seems like I’m not the only one with the itching thing and I can blame the More Sh-t demon for it (the American comedian Richard Pryor used to refer to his MS as ‘More Sh-t’, so I do too).

The word for ‘sensation of ants crawling on your skin’ is formication. (NB that’s an ‘m’ not an ‘n’ in 4th position ) It’s a great word to drop in at dinner parties and casual chats at the supermarket: “I’ve been experiencing quite a bit of formication today”.


That sounds so painful Nina!

I get it but not nearly as bad as you. I have one area over my right hip and half of tummy that is always semi-numb and burning… about the size of bag of sugar (good comparison!)… but not as bad as yours. I also can’t stand clothes to touch it & spend much time in nightie and dressing gown as waist bands drive me mad.

I once heard that for shingles (which I know you haven’t got or ever had)… but for shingles pain rubbing the area with sensitive toothpaste can help as it numbs the nerve ends. Might be worth a try? (although Nina try on a very small area just in case it has opposite affect).

Have a good weekend hon… quite bright in London… not exactly sunny though…

Pat x

Wow Pat, You never cease to amaze me with your advice and info, I can’t imagine where you get it all from! As to where you keep it all…frazzles my brain just thinking about it ! Spoke to soon about the sunshine! Thanks so much Pat Nina x

Morning all,

I’m at my wits end with it now, its really getting me down as soon as I sort one itch out another one starts & so on & on. It is much worse when I get hot & I try to keep busy to distract me but the MS fatigue takes over & I have to rest. I found a cold flannel helps a little & try to use that instead of scratching. Just hope the Consultant Dermatologist I am to see is a good one & can help, roll on June 10th.

Am off to a memorial service for the Dambusters at Woodhall Spa today so that should take my mind off it, hope the weather is good to us its bright & sunny in Lincoln as I look out of window now so fingers crossed it lasts.

TTFN folks have a good Sunday

Jo xx