Neuropathic pain is just a fancy word for pain which is coming from the nervous system. It can also include altered sensation like burning, pins and needles, and sensitivity to touch or pressure.
When I was severely affected by M.E. my neuropathic pain was legion. I had no idea there were so many types of pain and they tortured me every second of every day. My legs burned like they were on fire – it was so bad I used to lie with wet towels wrapped round my thighs just to get 20 minutes of relief. Luckily now I’m less severely affected this has improved and my muscles only burn if I’ve done too much.
I have had severe pins & needles in my hands and feet for nearly a quarter of a century. It is constant and feels like I’m plugged in to the electric. It was so bad when I was severely ill with M.E. that putting on shoes or walking was excruciating – it felt like the soles of my feet were full of crushed glass. I also used to get pins and needles in my face, tongue and scalp. Even now, as I lie in bed typing this, it feels like there’s a swarm of bees buzzing away under the skin in my feet. It is not fun.
For about 4 years I was so sensitive to touch that I couldn’t bear anyone near me. If someone inadvertently brushed my arm pain would shoot along my nerves and explode in my brain like a bomb. Now I am less severely affected by M.E. this has improved but I still wince at sudden touch and having a gentle massage would bring both pleasure and discomfort.
Over two decades on I thought I’d had every type of neuropathic pain imaginable but I was wrong. Three years ago I started getting sharp, stinging pain in my breasts. It would come on suddenly for no reason and take my breath away. I went to see my GP, who discovered my breasts were so lumpy from peri-menopausal hormones that a proper examination wasn’t possible, so sent me for an early mammogram. Thankfully all was fine and having read menopause message boards online I discovered neuropathic pain is a ‘thing’ for some menopausal women.
The breast pain eventually went, to replaced by neuropathic pain in other parts of my body. My lower legs, ankles and feet have been particularly affected during the past year though I can get it just about anywhere. I’m lying in bed minding my own business when suddenly it feels like I’ve been zapped by a cattle prod. This can happen every couple of minutes and has, at times, seriously disrupted my sleep. Not only that but I’m getting weird cramps in my calves and my toes keep going rigid.
I’ve been tested for peripheral neuropathy and, as far as I can remember, they concluded I didn’t have it. If anything my nerves are hyper-responsive to stimuli not under-resonsive. The only abnormality that ever shows up is massively brisk reflexes, which doctors don’t ever seem to be concerned about despite the fact that I get muscle twitching, cramps and jerking (as I type this my right big toe is rigid and pointing down to the sole of my foot and both large muscles in my thighs are in spasm). I also get crawling sensations and huge goosebumps over the skin in my legs for absolutely no reason.
When I was severely affected by M.E. my gait (ie the way I walk) was obviously abnormal and I took very high loping steps. How any doctor I saw could ever tell me I was fine and just needed to pull myself together still makes me livid – it just shows the power of suggestion (by psychiatrists that M.E. is a mental health issue) rather than impartially observing the clinical signs which could not have pointed towards neurological disease any harder if they’d tried.
Regular pain killers have zero effect on neuropathic pain. The best drugs are anti-seizure meds such as Pregabalin and Gabapentin. My Mum has had shingles twice, as well as severe post operative nerve pain, and swears by Pregabalin. I also have friends with M.E. who couldn’t manage without it. Of course, I’m so drug allergic there’s no way I’d tolerate something so potent. Please, I beg you, don’t comment and ask if I’ve tried x, y or z drug, herb or treatment – it’s really insensitive to someone in my situation (I had an anxiety attack last night trying natural, organic yoghurt for the first time in 5 years ). And, yes, I know all about magnesium – I take antacids every day and as a result my blood work shows a higher level of magnesium than should be there.
I just put up with all the weird nervy stuff and accept it as part and parcel of my myriad of diseases – I have no idea which part of the nerve stuff belongs to which illness, not that it matters. I really hope the stinging pain bogs off when I’m through the menopause though cos I’m getting proper fed up of that I’m proper fed up of the menopause in general to be fair and just wish it would jog the hell along!