Last reply 6 months ago

Hi. Haven’t been on here much since starting on Gilenya about 9 months ago but have just acquired a new symptom: pain 🙁 Although I’ve been diagnosed for a few years, whenever anyone asks me what my MS is like, I can usually answer that it’s not really THAT bad for me. At worst it’s been bloody inconvenient, irritating and mildly debilitating (fatigue especially) but the pain is a whole new ball game. I have had intermittent stabbing pain in various places on my left side over many years, but it seems to be becoming more frequent, more widespread and much more intense. It’s a sickening, sharp, stabbing pain – sometimes in my ankle, sometimes my ear, more recently in specific fingers, calf etc etc – which kind of pulses on and off for a brief period (few minutes max) then goes away, only to return in the same place or somewhere else a few hours, or days, later. From everything I’ve read about MS and pain, this doesn’t sound typical. Does anyone else experience pain in this way? Sometimes the pain is so acute it literally takes my breath away.

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6 months ago

Yes I have and still do, I get those pains in my legs, hands, feet and my head, they can be so severe at times they can drop me to the floor.
The only way I can deal with them is to swear and press on the area affected, I dont know if it works but it seems to help, also the drug Lyrica / Pregabylin is a massive help, it focuses on nerve pain.
Spk to your GP, good luck.

6 months ago

I spoke to the MS nurse but she didn’t seem too interested. I’ll try harder next time! And yeah, I’ve found putting pressure on the pain helps. I’m not sure it makes it go away at all but it gives me something else to concentrate on! Thanks for your reply.x

6 months ago

Hello @niccis, nice that you’ve appeared again! Are you still working? You could try writing down when these things happen, then look for triggers or patterns maybe. And deffo call your MS nurse, there are different things available to help neuropathic pain. Take care x

6 months ago

Hey @vixen! Yeah, still working. 4 days as head of English. It’s been intense this year – new head etc – but I’m hanging in there. Hope you’re well?

6 months ago

Hi @niccis , i’m still here too.

Your pain doesn’t sound typical of MS, not affecting different parts of the body at random.

As your MS Nurse has shown no interest, you may want to have a word with your GP about this and get their view.

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