Tag Archives: burning

Neuropathic pain

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 cattle prod 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!


Paresthesia is the medical term for altered or abnormal sensations in the skin of which I have several, some of which are really hard to describe but I’ll try and give it a bash.

My worst sensation is that of…………I was going to say pins and needles but it’s more an intense tingling sensation.  It started after my meningitis and developing severe M.E. and has been a constant, 24 hours a day thing for the past twenty odd years.  It’s in my hands and soles of my feet all the time, and sometimes in my scalp, buttocks, face, even my tongue.  When I’m trying to tell people what it’s like I usually describe it as feeling as if I’m plugged into the electric (I do wish someone would kill the bloody switch).  These days it’s more annoying than painful, but when I was severely affected with M.E. the sensation was so intense in my feet walking was tortuous as it felt like my skin was made of broken glass.   Pain aside, it’s not particularly restful to lie in bed every day with your whole body vibrating from an invisible current.  The only time it stops is when I’m just about to have an anaphylactic reaction when, for a few precious seconds, my entire body is blissfully calm until of course all hell breaks loose.  So it seems like an immune-related symptom because my immune system can switch it off.  Weird.  If it were peripheral neuropathy, nerve inflammation or there had been some permanent damage to my nervous system the sensation wouldn’t suddenly disappear when I’m having a mast cell reaction, so my hope is that it’s a symptom which could be treatable should a cure/effective treatment ever be found for M.E.

The electrical theme continues with nerve pain, which feels like lightning bolts under my skin.  It’s sharp, stinging and at times so severe it takes my breath away.  I can be sitting reading a book, or having a conversation, and all of a sudden I’ll jump and shout out “ouch yer bugger!” which usually means I’ve been zapped by my body’s own Taser.  The only saving grace is that it’s a stealth assailant and has come and gone in seconds.

A more chronic cause of pain is burning skin.  It feels like I’m sunburnt and my skin can feel hot to the touch.  My legs are the most affected, particularly my thighs, and it’s worse when I’ve been walking, or done some kind of physical activity though as I’m sat up in bed typing this at 7 o’clock in the morning the insides of my knees are both on fire even though I’ve been in bed for the past 14 hours.  It gets progressively worse as the day wears on, particularly in my feet, and I lie in bed most nights with my tootsies like a raging inferno dangling outside the duvet.  They drive me insane.

Sometimes, I’m lying in bed watching telly and minding my own business when huge goosebumps suddenly break out on the back of my legs.  It’s bizarre to get goosebumps when you’re warm and I have no idea what causes them.  Again these developed when my M.E. became severe and as I’ve improved they’re thankfully nowhere near as frequent as they used to be.  Still not pleasant though to feel your skin inexplicably crawling.

I’m going to include my muscle twitching and jerking as altered sensations, even though they’re not skin related.  I have Restless Less Syndrome and it’s something I’ve had since I was a very small child.  Both my parents have RLS and my biological Dad also had Periodic Limb Movement Disorder, so for me there’s a genetic cause.  As a kid I always knew when I was tired and ready for bed as my legs “jumped”.   However, the second I settled down to sleep they mercifully stopped and until my mid forties my RLS only ever happened in the late evening.  Not any more though.  Oh no.  These days my legs can start jumping in the middle of the afternoon and by the time evening arrives they are cramping, crawling, twitching and relentlessly on the move which is impossible to explain unless you’ve experienced it.  Even my dog gets fed up of being woken by my constant fidgeting and often gets off the bed and goes into his own basket with an irritated sigh just so’s he can get some kip!  To add insult to injury, now my arms are at it too and they ache, crawl and twitch me to distraction.  It’s freakin’ exhausting.  And before anyone asks, yes I have tried Indian Tonic water (eugh!) and it had absolutely no effect other than to keep me awake at night peeing.

While RLS is an internal sensation of movement which you feel but can’t see, I also get visible jerks and twitches.  When my M.E. was severe my legs used to literally jump inches off the bed with violent jerks, which were really very painful.  I also used to twitch  involuntarily just about anywhere on my body, a bit like the ticks seen in brain disorders such as cerebral palsy.  As my M.E. improved the ticks are much less frequent and severe than they used to be, though cramping in my muscles has gotten worse (it’s now 10am and I’ve just taken Bertie out for a 10 minute walk and my legs are cramping away like billy-o).

Talking of cramps, I get them in my brain.  When they were really bad I remember telling my GP about them and she told me not to mention them to anyone but her as medics would think I was nuts.  The sensation is just like the charley horses you get in your calves, only they’re in my brain and feel like a seizure (but without any loss of consciousness).  I feel proper tired afterwards though and often quite spacey.  I had an EEG which was normal so it’s probably been put down in my notes as a panic disorder or some other psychological issue *sigh*.

I have all the usual hyper-sensitivity issues that many people with M.E. do and am particularly sensitive to touch.  When I was severely affected I couldn’t even be hugged as the sensation on my skin was simply too painful 😦  It’s not as bad now thank God but I do still hate contact which is sudden or forceful and don’t get me started on hot and cold which can be acutely painful.

I haven’t found anything which helps my paresthesia.  It’s totally outside of my control and for the most part it’s just something I’ve learned to live with and block out.  I very much look forward to the day, though, when treatment is found for M.E. and my internal electrical current is finally turned off and I can rest in peace!





Chronic Pelvic Pain

I started my periods aged 11 and they were painful from day one.  Dysmenorrhoea (ie excessively painful periods) is common amongst even the healthy population and suffered by up to 75% of women but it’s even more common in Ehlers-Danlos patients with a suggested 92% of women having painful menses.  When I could take pain killers it wasn’t too much of a problem – a few Feminax or some Mefanemic Acids tablets and it was down to a dull roar and I could carry on my normal life, but when I became allergic to painkillers in my mid thirties it became much harder to live with.

There are various theories as to why having EDS causes excessive period pain but in truth we don’t conclusively know the reason.  With up to 75% of healthy women also having dysmenorrhoea there are factors involved which obviously have nothing to do with EDS and in my mind EDS just complicates an already common problem.

When I hit 40 my EDS got much worse and on top of that my (pre-existing but largely a-symptomatic) Mast Cell Disease went nuts.   About 10 years ago I developed lower, right abdominal pain.  It’s a stinging pain.  It doesn’t come and go, it’s there all the time, but it does get much worse when I ovulate and during my period.  I had investigations and my right ovary looked totally healthy.  Endometriosis was suspected but the only way to know would have been a Laparoscopy and for that I needed a general anaesthetic – no way Pedro, not after I’d already had a reaction to general anaesthetic after having spinal surgery when I was 16, longgggg before my MCAD caused me any drug issues whatsoever.  Gawd knows what would happen now!

Over the last decade my pelvic pain has gotten worse.  Much worse.  Ovulation, whichever side it’s on, can be excruciating.  For 4-5 days before my period I suffer stomach cramps, increased lower back pain and bowel pain (which can get so bad I have to do labour breathing when I poop) and for the 3-4 days of my actual period my entire pelvis and the tops of both thighs feel like they’re on fire.  This often doesn’t settle down until I ovulate, up to 14 days later – I’m not saying it goes, just that it becomes tolerable.  So I’m basically in pain all the time.  A burning pain, which radiates down to my groin and pelvic bone on the right side and goes across my lower abdomen.  And on top of that I have the constant stinging pain on the right-hand side which I always assumed was a problem with my ovary.  It’s not a lot of fun.

The Gynae Consultant on Monday seemed perplexed by my pain.  Both my ovaries look totally healthy.  I’ve obviously had various cysts over the years but they’ve all resolved – many women get monthly ovarian cysts, sometimes quite large, and they don’t cause the constant pain I have.  I may have endometriosis which is notoriously difficult to diagnose, though if there were adhesions sticking any of my organs to each other this would usually be seen on an MRI and my MRI in November was totally normal (other than finding a 5cm right ovarian cyst which has now disappeared).  Pelvic Congestion, where the veins in the pelvic area expand (more common in EDS) would also usually show on MRI and mine all look tickety-boo.

I do have lots of uterine fibroids, both internal and external, and fibroids can be painful.  But from reading various online message boards about fibroids the pain experienced is nothing like the pain I have so I’m doubtful they’re the cause of my issues either.  To think I could go through the trauma of having a hysterectomy and still be left with the pain totally freaks me out.

There is always the niggle in the back of my mind that my pelvic pain is down to my bowel and nothing whatsoever to do with my lady bits.  I get sharp, stinging pains from my stomach to my backside, alongside chronic burning pain which can only be inflammation.  A belly MRI 5 years ago showed a totally healthy GI tract though, from stomach to bum, so again if anything serious were going on surely to goodness something would have shown up.  I’m sure my entire GI tract is chronically inflamed but would that cause the kind of pelvic pain I’m enduring?  I really don’t know.  When I talked to the Gastroenterologist he thought some of my pain could be Gynae related, and when I talked to the Gynae this week she thought some of my pain could be Gastro related!

My worst nightmare is that I undergo the trauma of surgery only for them to open me up and find a totally healthy looking pelvic area.  No endometriosis, no scarring from previous burst ovarian cysts, and no real explanation for my pain.  It could simply be chemical from my MCAD (mast cells leak mediators which cause chronic inflammation and the uterus is packed with mast cell receptors) and, as I struggle to take any of the drugs used to treat Mast Cell Disease, I might just be stuck with it.  Forever.  Somebody shoot me.  Or maybe having my fibroid packed womb out will at least help, if not cure.

Like most issues with my body there just are no easy answers.  You can only do what feels right at the time and, if I do get to have my womb removed I don’t think I’ll regret the decision for a single second, even if the op and post-op period is rough.  Having had dysmenorrhoea for 37 years I’m just over it and the thought of never having another period in my life sounds like heaven.  If my ovaries are healthy I’ll get to keep them which, given my family history of early osteoporosis, would be beneficial and means I can have a more gentle slide into menopause.  I’d also like to keep my cervix, cos I’m not sure how orgasm works without one (and no-one seems to talk about that on the message boards!).  This all might be a mute point though as the Anaesthetist might say surgery is just too risky given my MCAD/drug allergies.

I’m having an MRI scan tomorrow (Friday) which will give a better view of my fibroids then I have to wait for an appointment to see the Anaesthetist who will decide if surgery is an option.  Wish me luck.

p.s. I should have made it clear that I don’t have heavy bleeding with my periods, quite the opposite.  I always thought fibroids caused heavy periods but according to the Consultant if they are on the outside of the womb they have no effect on bleeding.