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PAIN! Unrelenting, unforgiving, tear-making Agony.

I don’t know what to do. Just suck it up?
I have most MS issues in my left arm and shoulder, pinching under my shoulder blade. Recently (due to PIP stress) and ongoing for 8 weeks, I have pinching, aching, numbness, cramping at joints, middle of limbs, up into neck, across top of shoulders. It hurts to lie at an angle, lie down or on either side. Can’t breathe on back.
Waiting for MS Nurse to speak to Neuro about Gabapentin. Ibuprofen and cocodomol don’t work. Heatpad sometimes helps. Exhausted from sitting on the edge of the bed crying at 4am.
What can I do? I’m trying to do exercises but that sometimes causes a flare-up. The less I do, the less I can do. I’ve tried arnica gel on sore points, tried staying still or moving.
Any tips, advice, superstitions, alternative therapies, old wives tales, ancient prayers, I’m ready to try anything!
Thanks in advance xx

Hi Sarah,

I was dx’d with PPMS in 2013; I also have weakness on my right side and balance issues.

The pain you describe, sounds like ‘nerve pain’, just like what I have. Normal pain killers like ibuprofen :pill: or co-codamol don’t do anything, as you have seen. Gabapentin, is what gets me through, it eases the pain, and allows me to move my leg without pain.

After awhile, can be many months or a year or two, the pain comes through; so my Gabapentin dosage needs to be increased.

I am a crutch user at home, but use a power-chair 🧑‍🦼 when outdoors, due to balance and fatigue issues. On a positive note, I found using a 🧑‍🦼 quite liberating. It gives me the freedom to get around without a problem.

I hope knowing that Gabapentin may help, gives you some respite.

Wishing you the best.
Sid

Hi Sarah no one can believe the pain of MS. Its not like a joint pain. I was awake last night laying there thinking how can my left foot be numb but i have such awful nerve pain in my leg and foot?

I am left sided weak and tired of it all. I use a blanket cage over my legs at night this helps to keep me cooler. I find at night its worse because we are not doing anything to take our minds off the pain.

Its nerve pain made worse by heat. the blanket cage i have used for a long time tried not to have it but it makes my legs burn, tingling and pain even worse.

I have tried gabapentin it didnt work, i have an over sensitivity to these drugs. One 2mg diazepam weirdly gives me a bit of relief.

I feel your pain i really do. I wake up with a charlie horse, or my stupid left foot is arching upwards in twisted hell.

ah the joys of MS lol. I have pain worse as i enjoyed myself for my birthday, which i am not allowed to do. One is not allowed to enjoy oneself with PPMS lol. xxxx

SEND you big hugs. xxx oh for your neck try tiger balm i have no idea why it helps but it did me, and i always sleep in foetal position i cant lay on my back as i have back spasms. (i do use a heat pad in the day if that is bad). xxx