Dear All.

Half diagnosed! through MRIs (x2 neurologists writing to GP saying suspected RRMS) recently had lumbar puncture and now waiting to see neurologist again.

lots of other symptoms, but my new symptom (about three weeks) is pain.

It aches. It is sore enough that it wakes me every night at about 3am. I wait until the morning and sometimes I have a bath. It is in both shoulders and down both arms and radiates out of my fingers.

Is this common for MS? Is it a permanent feature or part of a relapse thing? How do other people manage similar pain? I would rather not fill up with pain killers. Is it better to put up with it?

Any advice welcome. I do hope that no one replies and that you are all pain free?!

Hi Ali

It could be MS, chances are that if it’s both arms it’s not a muscular thing so possibly nerve related.

The thing about relapses is that we quite often only truly recognise them in retrospect. Because they come sneaking up on us, we’re not quite sure it’s an MSy thing and so we just end up living with whatever it is till it goes. And then we say ‘oh that must have been a relapse!’ (Some of us are a bit stupid like that!)

Of course if it’s an every night but not during the day thing, it could be about your sleeping position, pillow etc.

But if you’ve ruled out sleeping patterns / positions and muscular things, then ultimately you are probably left with an MS thing.

And I reckon it’s probably about time you stopped having to explain that you’ve been diagnosed, then another doctor wasn’t sure. It seems to me that you have MS and all you are waiting for is an NHS neurologist to say the words. (Bloody nuisance that you’re having to wait all this time for something that’s probably inevitable!)

What you could do is see your GP, explain what you’ve said here and ask for guidance in potentially neuropathic pain treatments. Your GP should be able to give you a prescription for Gabapentin say, which you could try out. I understand you would rather avoid drugs, but my rehab specialist neurologist reckons you can take Gabapentin as an on and off painkiller rather than having to take it all the time.

But if it is a nerve thing, then standard painkillers won’t help at all (ie paracetamol, ibuprofen, etc).


Thanks Grandma for kind words of encouragement

and Sue, for being genius. I always feel that I have to explain my weird, mid-diagnosis position but of course you are right, given all of my symptoms, a confirmed MS statement is inevitable. The pain is definitely not a sleeping position thing because I have tried sleeping in two beds and two settees but the pain is always the same. I will go to my doctor and ask about gabapentin. Again, thank you for your time and sensible/fab advice. Kindest thoughts Ali


Can you describe what sort of pain it is. Like a dull ache or sharp stabbing pain or is it more like a painful rash or itching?

Best wishes,


Dear Anthony, the pain is like flu. Aching but stabbing too (inside the bones but on the outside too). In fact it makes me feel sick because it is so ach’y. Do you have such pain? I do hope not. Kindest thoughts Ali.