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 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
Hi @Sarah
I’m sorry you are in so much pain, can definitely relate to the sitting up in tears at stupid-o-clock because I can’t find a comfortable position to sleep!
Cocodamol/Aspirin/Paracetamol/Ibuprofen will be useless for neuropathic pain. Good alternatives to Gabapentin for nerve pain, are Pregabalin or Amitriptyline. They all work to varying degrees, but also have their drawbacks in the form of side effects which you may or may not feel able to tolerate. It’s a question of trial and error I’m afraid, but of course that doesn’t help the unrelenting misery you are feeling now.
I can only suggest chasing up your MS Nurse, get on the phone to her today - remember she is working for you, not the other way around. Tell her you want an answer asap.
Also speak to your GP, they can prescribe the 3 meds I’ve mentioned above, you don’t have to wait for a Neurologist’s say-so.
I do hope you find some relief soon.
Willowtree x
hi she posted this back in august hun, so i expect she has been sorted now. xx
Hello SARAH. Sorry only just seen your post. Poor you…this MonSter really can be so nasty at times.
I’ve had it 24 years , but with it being PPMS, never had anything to slow it down or help much.
But I do believe in amitriptyline as a really good nerve pain killer. It helped me a lot.
So how you doing now hun?
love Boodsx
Hi Sarah I take Gabapentin for nerve pain slowly increasing the dose because I’m so sensitive to most medications, it’s still not helping. I dread the evenings because the pain suddenly ramps up. I take amitriptyline for migraine prevention but if I take 2 it helps me to sleep and gives me a rest from the nerve pain in my feet. It sucks…
Hi have you tried CBD products? The Dr’s will never suggest it. But it is entirely legal. Holland and Barrett sell a good range. A quick google search will find other companies with stronger stuff if needed. The drops and creams are really effective. I use the drops funky tasting stuff and my mum uses the cream for her arthritis. She is in her 60’s and swears by the stuff.
Hello I to identify with all of what you say. I have also thought about a blanket cage as when sleeping I have to sleep with legs mainly left leg exposed as heat gets it and I writhe aroundin agony every day /night twisting body because of the pain. Only left side of the body is letting me sleep as right side and arm aches. And back pain skin like gravel rash. I get these full stretch spontaneous body stretches almost to the point that my brain feels like it’s going to pop!
My goto is trusty hot water bottle and diazepam as nothing else works. Liquid Magnesium helps though although little pricey.
I totally get it…
Sunny smiles
Hello Sarah 
Aww Hun my aching heart really goes out to you as I read your words, such tears. I am exactly where you are at right now and desperately want independence but at the point where all of the meds you have had and more do nothing. I would love to hear more from you on this and would like to try and help as everyone is different in the fact that some meds help some but not others. If I could make a difference no matter how small that would be a great smiler for me know that I could make a difference no matter how small from fellow citizens who suffer from this monstrous mountain we have to endure every waking moment.
Sunshine smiles, hope is silent, may our words help heal.
is the best thing ever. my GP way back when this started organised it for me, so its been with me a very long time. seen a few new houses and beds too lol. I could never sleep without it. I have tried but no thanks. It keeps my legs cool and no pressure. you can buy them cheap enough in disability shops or ask OT if they can have one. I dont use mine correct. As i put the complete cage on top of the mattress for double height lol. xx