For the last two weeks I’ve been itching like mad, generally my back, shoulders, upper arms and upper front of body. I’ve checked that we haven’t changed washing powder, fabric conditioner etc. I hadn’t changed anything I use in the shower, but subsequently have bought some sanex 0% sensitive unperfumed shower gel and have been using only E45 lotion. I also tried taking hay fever tablets (that say they can also be used for other allergies). I’ve also been quite careful what clothes I’ve worn. I’ve had some slight improvement but I still itch and where I’ve scratched, little spots.
So, my question is has anyone else experienced anything similar? Could it be related to MS at all as I seem to have ruled out the majority of environmental causes. I have made a GP appointment but if she’s just going to scratch her chin and say ‘mm, it could be MS related, I just don’t know’, is there any point?
I believe the itching is another manifestation of neuropathic pain, ie nerve endings giving the wrong signals. I have terrible itching at the top of my neck and in my hairline, where I can scratch until it hurts! When it gets too bad I use TGel shampoo (expensive!) just to help calm things down. It’s not there all the time, but especially when I get a bit stressed. My mum also has PPMS (lucky us) and she suffers terribly with itching in a sensitive area. She has spent years trying everything her doctor has suggested, but hasn’t really found much relief, sorry! Hope you find something that helps, but it does seem to be a MS symptom.
Firstly I was told my itching and spots were down to the steroids I was given for 5 days six months ago. Then I was told it was down to the Tysabri treatment I am on. Then I was told it was down to nerve damage and finally I was told its down to just being one of those MS things.
As far as I am concerned I’m not sure anyone knows what causes it completely but, like you, if anyone does then I would love to know.
Blimey guys, I thought I was really clutching at straws asking if itching could be MS. Thank you for confirming that it’s possible. The antihistamines didn’t really help, I was just trying to rule things out, the same with shower gel etc. I’ll just have to carry on with what I’m doing, trying to keep as much as possible natural, perfume & chemical free to see if it’ll help. And when I see a Neuro next time I’ll ask if anything might help it.
Your GP is able to prescribe stronger antihistamines than the ones you get over the counter. They work wonders on the MS itchiness and the eczema itchiness which are, strangely, different types of itchiness; the eczema itchiness I have is very much an external itch, whereas the MS itchiness really feels like it is coming from the inside.
I digress - ask your GP for some extra-strength antihistamines and see if they help.
Glad to see I’m not alone… not that I want anyone else to be suffering from this itching! What I thought was a case of dermatitis, which I sometimes get on my scalp, has turned into a week-long itch fest. The skin on my head looks fine but feels horrible, with an insistent ‘buzzing’ itch - not the same as the pins and needles type pain. I’m also getting it around my chest, shoulders and upper back area. There isn’t a rash as such, just some little bumpy spots that I think have been caused by my scratching.
I had a course of Lemtrada in November, and that caused an itchy rash - which was different to this one. It is getting me down, as I just don’t want to bother the MS nurses, or the GP, again. I’m feeling pretty well otherwise, so it seems like MS has just thrown another symptom into the mix I’ve got a gabapentine prescription ready in case my other neuropathic pain gets too bad, but I feel this itch is going to be the decider if it doesn’t go away soon! I really want and need to get on with some work to build my business, and this is another yucky distraction.
Feeling sorry for myself, and all of us Horrid disease. Rant over - I’m going to try and get something productive done, as distraction seems to be the only way.
Hi Sue, your description sounds exactly like my own experience. My GP just blames me for it and not MS saying it’s my lifestyle or habits .
i have a plastic back scratcher bought for a pound and the noises I make using it sound like they belong in an adult film so at least I get a chuckle as well as some relief.
But it does annoy me that some of my symptoms seem to be dismissed by my doctor though and I’m left to find my own solutions, so far I’ve used distilled witch hazel on cotton wool applied directly too the offending area, ointments for itchy skin bought from boots, calamine lotion, and antihistamines, all work to varying degrees depending on where or how bad the itching is.
i wish you luck finding something that works for you.
You are latecomers to this thread. I started it last January.
In actual fact, although I do still have the MS type of itching now and then, I also have eczema off and on. So I’m sticking with using an emollient cream to wash with, double base cream and occasional betnovate. All prescribed by my GP.
(Not long ago I broke the back scrubbing brush I owned, using it to scratch at my back!)
I’m still never sure what is causing itching, whether it’s eczema or MS.
I have it, thank god it comes and goes and it drives me nuts when it is here. My neuro said its another form of nerve issues like the intense burning in body etc.
I itch like mad too I would frequently bruise myself I am itching so much … I was unsure whether it was the ms or maybe my hormones as I was concerned I could put everything down to the ms … hard to know isnt it …but I found that a bath with e45 bath oil and keeping my bed room cool helped…
My shins and calfs tended to itch like mad and before I started using E45 cream, I would scratch them until the skin broke. Oddly the itch would stop then. The E45 cream helps greatly but I too did wonder whether it was yet another crazy MS symptom
I have been living a nightmare since October, went to a caravan for five days, itched terribly and nearly slept in the car. Thought it was the cleaning fluid they had used. Scabies!! Itchy horrid nightmare, fixed the scabies after three treatments from the doctor, removed all soaps and washing substances, got rid of blankets, now have all soft quilts and new sheets. Still itching as my skin is trying very hard to recover and not doing very well. I think the M.S. is making it difficult to come to terms with it. (I also had trouble with a knocked toe getting better). Anyway, sorry, sure its not anything to do with this, but letting everyone know who goes away, beware of itching half way through your holiday.
My poor Mum got it when she went on one those five day coach holidays many years ago, she was the most spotless person I know and only after a whole month of itch madness did the doctor tell her it was scabies.
On another note, I think the itching is also to do with M.S. and possibly a result of long term use of painkillers. Well, I’m a bit peed off about waking up to scratch my back and earhole again for another night, however if someone was to tell me to pack the painkillers in they might not like my reply!
Just another thing to test us folks, as if it isn’t enough already!! Sometimes I think someone up there is having a bit of a laugh. It helps to have a sense of humour.
I am only recently diagnosed but last June. …as it turns out, a month or so after my 1st relapse I had a major issue with itching. It was on my scalp and for prob 3 weeks ish. It was an itch you couldn’t really find, it wasn’t on the surface of the skin and as u scratched it never eased. Just 1 hair moving slightly would set it off. Horrendous. I kept my hairbrush by the bed and sat crying at all hours scratching with it! I could only sleep on one side it was that bad. Eventually at 4am after 2 weeks and prior to travelling to a family holiday abroad my other half forced me out of bed to hospital where they told me this must be nerve damage after my recent hospitalisation due to viral meningitis. Now almost a year later and I know that the viral meningitis wasn’t actually the reason I needed 5 days in hospital, but was in fact a relapse. So I sympathise with u hugely, until u deal with neurology gone wrong u have really no idea do u?
When u have MS obviously it’s easy to put everything down to that it would seem, only thing I can say is that my neurological itching was unlike any other…dunno if that helps any x
I’ve got a gabapentine prescription ready in case my other neuropathic pain gets too bad, but I feel this itch is going to be the decider if it doesn’t go away soon! I really want and need to get on with some work to build my business, and this is another yucky distraction.
Horrid disease. Rant over - I’m going to try and get something productive done, as distraction seems to be the only way.