Last reply 8 months ago
Is this pain normal?

Hi again,
Been signed off from consultant, as she can do no more.
Not on any long term DMT, (SPMS), and over the last 3 months the pains have got worse.
All round my waist, like I have done 1000 sit-ups, its relentless.
Feels like I have had been through abdominal surgery.
It’s the “MS hug” on crack I think.
Anyone else get it that severe? Any answers?
Baclofen eases it slightly, but not for long.
I do straight-arm pullovers with 8kg weight, to try and tell the muscles I am still in charge, but they seem to be ignoring me!
Stiff leg muscles and the soles of my feet are on fire all the time, so much so, walking (or trying to stumble and drag), is a nightmare.
Anyone got any “Magical” treatment ideas?
Oh, and to cap it all, at night the leg spasm has got so bad I am thinking of trying to get crowd-funding for an amputation.
I think I’m joking (ha-bloody- ha), but I might not be in a few more months!
Any suggestions gratefully received.

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8 months ago

@sigmadelta , the Baclofen is a muscle relaxant so may give some relief from spasms.

Neuropathic pain, burning etc., may need Gabapentin or Pregabelen.

Hopefully, your MS Nurse hasn’t discharged you and can assist with some pain medication for you.

8 months ago

I really feel sympathy for your horrible Ms “hug”symptoms. It’s one that I find really hard to cope with too, my GP said I ought to call an ambulance when it has been really bad – can’t talk when it happens, sometimes for many hours, and it has really caused my family to be really very alarmed. MS nurse and GP suggested Gabapentin or One off Diazepam just to knock me out which I have gone for, although if it happens during the day it’s not very practical to be drugged into sleep. I always need to lie down on my side or propped up. I hope this is helpful -it’s a horrible symptom and one which you definitely need to see some relief from.

8 months ago

sorry to hear that you are having such a rotten time; what about nurse-led follow up?!
ideally your GP ought to be able to manage your symptoms (call an ambulance for an MS hug ???0 doesn’t inspire confidence, try another Dr if you can, that’s what they’re there for. At any hospital, or in the community, there will be a pain control team, or even one at a local day hospice (don’t let that word put you off) it may take persistence and assertiveness on your part but there will be someone who can improve some or all of this for you. I think.
sending you best wishes

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