Hi guys, just looking for some help/advice. I was diagnosed 2 years ago and for the last year have suffered from on and off ?nerve pain. It’s usually upper chest or down my right arm to the tip of my middle finger. The ‘episodes’ tend to last 45 minutes to an hour of excruciating stinging/burning/pulsing pain - to the point that I was in tears last night.
I can experience nothing for a few months and then it comes back for 1-2 weeks, from nothing during the day to 3 times a day and even wakening me from sleep.
I’ve tried nortriptyline and now on pregagabalin which my consultant says to keep increasing but I’d like to find the root cause first.
I apply ice to the area, lower spine also and stand on cold tiles. I’m not sure if this helps or just distracts me.
Not sure it helps, but this might be of interest.
Hi there,
I get something that sounds a bit similar in my big toe and heel. It can happen in either foot, but when it is happening it’s (touch wood) only in bed and only in 1 foot. It’s really hard to describe, but the big toe feels like somebody is hammering in a red hot nail into the top of it. The heel just feels like somebody’s holding burning metal to it. It’s causes a leg to violently kick and shake in its own effort stop the pain. Once it starts then it is about 45 minutes to an hour, and it wakes me up it’s so painful. When it first started my neurologist prescribed amitriptylline 50 mg at bedtime, and that has reduced a lot of the attacks to just pins and needles. The only thing that I’ve discovered that can stop it is to find a way to completely distract my mind, as though the pain is something my brain is deliberately doing so I need to give my brain something else to do as it can’t multitask. The only limb I can move is my right arm (voluntarily at least!) and my hand function is really rubbish, so moving the duvet around is nigh on impossible and that therefore is what I try and do. As long as I can focus totally on moving the duvet then almost immediately the pain stops, and it’s about the only task that I’ve found that I can do in bed in the dark. Reading, reciting poetry, doing the alphabet backwards and so on and so on don’t use the right parts of the brain so don’t provide adequate distraction.
I have no idea if that’s helpful or not! But in a nutshell I suggest trying to find something that takes your complete Focus and attention and then seeing if that helps. I really hope it does!
Good luck with it
Hello @SR310
I’m no expert although there could be various reasons for neuralgia, the only thing I’ve experienced similiar to your symptoms was Lhermitte’s Sign, almost like an electric shock running down my spine. 
The thing I did to ease the pain was to massage the back of my neck using a Bowen technique, I think though it does get better on its own over time, I only felt this in the early years of having multiple sclerosis some 20+ years ago.
Best regards,
JP
If it is a neuralgia type pain I’ve found the only thing that helps is carbamazepine. Since diagnosis I’ve experienced Trigeminal neuralgia, the hospital gave me paracetamol for 3 weeks before changing to gabapentin, I’ve tried several but I’m allergic to most ad they make me tachycardic. Tramadol helped for a while the I get the stabbing pains back, and hot water feels cold. These medications don’t always help and you may have to try different ones until something helps your symptoms.
Hi, sorry to hear you’re experiencing this. I get this pain too, had a flare up this morning and couldn’t move my hands because the tingles were so painful.
I wish I had some advice, I’m new to this disease though so will be following in hopes of any info.
I have found that CBD oil helps me to sleep when the tingles are present but not at crying/puking stage. Not sure if it would help you too.