Last reply 4 months ago
MS hug, shingles or some other symptom?

I’ve had an unusual (for me) new symptom for about 10 days now. It’s a bit of a mystery, and I’m really curious whether anyone else recognises anything like this. I did report it to the MS nurse, and she said it may or may not be MS, and the thing she seemed to suspect most was shingles. She said I should keep a really good look out for a rash – but I definitely still haven’t got one!

It’s a kind of nerve pain in my left torso, which seen seems to go in a band around the lower ribs. The skin is numb all around the left side – but with reduced feeling, rather than none at all. (It’s strange for me to have something on the left, as I normally only feel MS-y things on the right.)

It started as a kind of ‘phantom itch’, which I couldn’t actually scratch if I wanted to. (I hurt the skin at the beginning, before I realised what was going on.) It’s developed into more of a dull pain now, which can be concentrated either at the front or the back. It varies in intensity from being hardly there to quite painful, and can wake me up in the night. It tends to be better in the morning and worsen as the day goes on. If I do try and scratch, or even just feel around to see if it’s changed, it quickly becomes more hypersensitive and painful.

I’m getting used to it now (although hoping it won’t stick around for too long) but I don’t much like the element of mystery. I was reading up about MS hug, which can apparently be one-sided, but the descriptions are so varied it’s hard to know. It would be brilliant to hear from any of you experienced people how ‘MS-y’ (or not) it sounds to you.

Thank you very much for reading!

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stumbler
4 months ago

@jerbil , well, it does sound MS-y, doesn’t it?

On the basis that MS can effect anything and everything, I would say it’s MS. And, yes, it could well be the “Hug”.

The present hypersensitivity could just be that area of skin getting fed up with being touched more than usual.

It could well be your body “talking to you”. Your MS is objecting to something that is going on in your life, be that an increase in stress levels, being over-tired or even a change in diet. Whatever it is, try and lighten up a bit and allow this to pass.


mlgilber1
4 months ago

I recently had the shingles. It was on the right side of my back and wrapped around the side to my torso. It started with an itch here or there that I didn’t think of much because I already have a neuropathic itch or what they call the “ms itch.” I don’t remember tingles, but shingles do cause them and I already have tingles everywhere so I probably wouldn’t have noticed. Now that I think of it, my tingles got worse. I noticed what felt like a deep pain in my right side. Some of the worst pain I’ve been in. I already have back pain so I wouldn’t have noticed if it was dull, but then I started getting a dull pain on the right side and front torso. I went to the ER because my GP couldn’t see me. I still did not have a rash and I had the pain for at least a week or two by then. All they could find was a UTI that they figured had spread. 2 days after I went and started antibiotics I was itching on my back and went to scratch and felt one bump that I figured was a random bug bite. Then, later that same evening the rash appeared on my back and I thought it was an allergic reaction to the antibiotics because I’m allergic to most of them so went back to the ER because it was late on a weekend. It was shingles. They immediately started me on an antiviral. By morning the rash wrapped all the way around to the front. I’d definitely keep an eye on it because it does sound like that’s what it could be. I now still have worse tingles in areas and some of the back pain on my right which is residual from my shingles. We’re still hoping it goes away with time. Sorry for the long answer! Hope you feel better!


mlgilber1
4 months ago

Also, mine would get hypersensitive especially when the rash broke out and I’ve experienced the ms hug which I know can be different for everyone, but shingles feels way different. When I’d get the ms hug it felt like someone was squeezing me so tight that it was hard to breathe and sometimes would get chest pains. Just keep an eye on it because it can take some time for the rash to appear and it’s important to get on an antiviral when it does show up. I hope you feel better no matter what it is!


petlamb
4 months ago

Hi @jerbil,

Sounds like it could be the MS hug to me too.

Don’t worry, if it is, it’ll just hang around for a bit and make a nuisance of itself and then it’ll be on its way.

xx


funnybank
4 months ago

You have described almost exactly my experience of ms hug with neuropathy. Your nurse is probably being cautious as having MS doesn’t rule out other things. My hug can come on like yours and last for week’s months even, then fade. Or it can come back from over heating or over exertion and calm down quite quickly. I’ve also had the banding so badly that it hurts and feels weird to breathe. MS definitely gets worse with stress so try not to worry. Is there a self referral for CBT in your area?


jerbil
4 months ago

Thank you very much everyone. I guess the jury’s still out then, but it is good to discuss it! (I may have been feeling a bit miffed at just being told I was ‘atypical’, with no other comment than to go to the GP if I got shingles!)
I will try and go with the flow…
Keep well, everyone!


bernadette
4 months ago

@jerbil you’re not atypical as the responses above show, your MS nurse sounds inexperience, but she’s right about visit to GP, to me is sounds most likely the hug (or banding/grip as i prefer to call it) Your GP can give you a drug for neuropathic pain, I take Amitriptyline for mine but other drugs are available; it takes the edge off, doesn’t get rid.
good luck


grandma
4 months ago

I’ve had ms for 26 years and got Shingles about 3 months ago. I started with the itch and a rash, it spread rapidly, and I called an ambulance cos I knew it wasn’t the ms, there was something else going on. I was right and eventually (after 10 hours in A&E) I was told it was Shingles, given some antiviral and sent home! Oh our caring NHS👹


jerbil
4 months ago

That’s interesting, @mlgilber1, thanks. Can you remember how long it was after the symptoms started that the rash came? Most info seems to say 3-5 days, although apparently it’s possible to have shingles without a rash as well.

Thank you, @petlamb and @funnybank. It sounds like MS hug is pretty probable too. In fact I suppose the only way to really distinguish would be an MRI, which isn’t going to happen…

Thanks, @bernadette. I guess there is something weirdly comforting about finding out that you’re not atypical after all! I haven’t decided yet whether to take the step of getting anything for neuropathic pain – I haven’t done before. (Also, it varies so much depending on time of day – each morning I tend to think, “Oh, it’s not so bad after all!”) Ho hum.

@grandma, I hope the shingles cleared up without too much trouble.

@stumbler – thanks, you do an amazing job! (Have I said that before?!)


mlgilber1
4 months ago

I know it says they take 1 to 5 days after the burning or tingling. I do remember the burning sensation. That with the pain would come and go for a couple days and then it was pretty constant and then a few more days later a rash. I know it was at least a full week for mine to appear or pretty close to it.


noelie
4 months ago

@jerbil if it’s the MS hug, your diaphragm is spastic and you need to release it through massage to get some relief

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