When you’re healthy, the only pain you ever experience is acute – toothache, childbirth, bangs and scrapes etc.  Drugs usually work well and at least you know the pain will only last a few hours, days or weeks at most.  Chronic pain, on the other hand, is a different kettle of fish and I had no idea the different types of pain with which our bodies could indefinitely torture us.

I’ve had back pain, due to spinal stenosis and resulting nerve damage, lordosis and scoliosis since I was 11 years old.  When I stand the muscles in my mid-lower back go into spasm and impinge on the nerves.  My buttocks feel really heavy, like I have a breeze block in my arse, and it only takes me a few minutes to need to sit back down.  Sitting is just as problematic, only I can do it for much longer.  Eventually, however, lying down and taking the weight off my spine is a must.  Pain killers have never had any effect on my back pain and I’ve always managed it with rest, my TENS machine if I know I will have to sit for extended periods (like at my Camera club), heat wraps (I like Thermacare back wraps) and a slaver of Ibuleve gel (which probably doesn’t do much and is largely placebo!).

When I first developed M.E. my whole body ached.  I likened it to toothache but in every muscle and joint.  My knees in particular used to throb like a son of a bitch every second of every day.  It was unrelenting and drugs had no effect.  The only relief I ever had was lying in a hot bath which I did for hours, often in the middle of the night.  I did eventually try acupuncture which got rid of the knee throbbing but had no effect anywhere else.  Luckily as my M.E. improved somewhat the aching largely went and only comes back on bad days.

I have had pins and needles over my entire body since 1996.  It is there 24/7 and is particularly bad in my hands and feet.  When my M.E. was severe, my feet were so painful it felt like I was walking over broken glass and there were weeks where I couldn’t even bare to put my shoes on.  Obviously this is some kind of nerve pain but no-one has ever been able to tell me what kind (it’s not peripheral neuropathy, for which I’ve been tested).  When I’m about to go into anaphylaxis the pins and needles stops and for a few brief minutes I have blissful calm (followed by all hell breaking loose, but let’s skip over that bit!).  So the pins and needles is reversible which just shows how the immune system and the nervous system are linked.  The constant feeling that I am being pricked all over by very sharp pins gets on my last nerve (‘xcuse the pun 😉 ).

I also have other types of nerve pain.  I get sudden electric shocks for absolutely no reason.  This week they’ve been deep in my right ear – I’m sitting reading a book and all of a sudden it’s like someone’s stabbed me in the head.  They shoot randomly down my legs and make them jump off the bed sheets.  They knife me in the ribs, doubling me over and making me mutter “ouch yer little bugger!” under my breath.  I have no clue what they’re all about but at least they only appear every now and then – if they were a permanent feature I’d have topped myself.

When healthy people excercise vigorously they eventually get what’s called “the burn”, due to a build-up of lactic acid in the muscles.  This mechanism has been shown in some studies to be faulty in M.E. patients and I can get “the burn” sitting watching the telly!  Every night my thigh muscles are on fire and when I touch my skin it’s actually hot.  As I’m typing this post the bicep in my right arm is heating up nicely as is the muscle between my shoulder blades.  My knees are also burning despite the fact it’s only 8.30am and I haven’t even gotten out of bed yet.  I’ve tried ice packs in the past but as they heat up so quickly they only provide very temporary relief.

I’ve had various intestinal pains since I was a toddler.  Acid burning my stomach and oesophagus currently being the most troublesome, closely followed by cramp-like colic.

One of my worst types of pain is that brought on by migraine.  Oh my good Lord above.  It starts either with prickling pins and needles down one side of my face, or a throbbing pulse at various points on my head (above one eye, on the crown, at the base) which beats in time with my heart.  This throbbing gets worse and worse and covers more and more of my head until it’s so severe I literally can’t move without feeling like my brain is being crushed.  I can have migraines which last 3 days, during which time I can barely move, think, speak or eat.  I’m allergic to all of the drugs used to treat migraine which is a total sod.  I’ve tried a Migracap (a cold gel hat type thing) which only made the pain worse and have lain on hot water bottles to the extent where I’ve actually burned the skin on scalp.  If I could get rid of one pain, it would be this.

The pain from my endometriosis and adenomyosis is, quite simply, torture and ranks on a par with the migraines.  The fact that this pain actually makes me pass out tells its own story.  It’s only saving grace is that it will, eventually please God, largely disappear as my hormones peter out.

As I’ve aged, particularly in the last 5 years, my body has become uncharacteristically stiff which, for someone who is highly hypermobile, is peculiar.  I never thought in a million years I would ever not be flexible and it’s come as a bit of a shock.  The stiffness brings with it a unique type of pain, almost as if the bones are fused together.  For the first hour of being up and around in a morning the stiffness in my ankles and hips feels like I’m putting all my weight on the bare bones – the cushioning ligaments feel like they’re simply not there – and I walk like a constipated duck.  It’s hard to describe but is seriously unpleasant.  You take the fact that your joints are springy and can move, twist and rotate for granted……until they can’t!

Of course, on top of all this chronic pain I still have acute pain.  Most EDS sufferers have frequent ligament sprains, strains and tears and I’m no exception.  For me, though, these are mostly minor inconveniences.  They respond well to topical analgesics like Ibuleve gel and ice, and can be strapped and supported until they heal.  The fact they happen almost every day sometimes makes them feel chronic, but as they respond to therapy and are on different parts of the body they don’t feel as unrelenting as my genuinely chronic pain does.

We all cope differently with chronic pain.  The biggest weapons on my armoury, in the absence of painkillers and other drugs, are:

  1. Heat: hot water bottles, electric blankets, heat wraps, baths.
  2. TENS machine: using large 90cm pads and the following settings on my machine – 35hz, 140us.  I keep it on all day some days, not for the recommended 20 minute sessions.
  3. Bracing, supports and strapping including a humongous 5ft U shaped maternity pillow in bed which surrounds and supports my whole body.
  4. Topical gels, such as Ibuleve, which I tolerate fine.   You can also use Arnica, Tiger Balm, Deep Heat etc.
  5. Ice packs and gels: I particularly like Kool n Soothe forehead gel strips for migraine.
  6. Rest.

The most important coping mechanism for me, however, is distraction.  Due to my M.E. I need lots of rest in a quiet environment, but if I were to just lay on a bed with no distractions I would do nothing but dwell on the pain I’m in, which would make me hugely depressed.  So when I need to lie quietly I listen to a talking book on my ipod (for some reason I find listening through earphones, rather than on a loud speaker, more restful).  I wouldn’t be able to sleep at all if it weren’t for my talking books – there’s no way I could just lie down in bed in the quiet and expect my body to go to sleep, not when the pain signals are banging away in my brain.  I blog, write my book and edit my photos – all of which I can do in bed on my laptop.  I take Bertie out every day of my life on my scooter, even when every cell in my body wants to just crawl under the duvet and stay there.  I crochet, when my hands will let me.  Something, anything, to take my mind off the fact I am in constant pain.  I keep busy, busy, busy even when I am resting which helps my brain focus on something other than the pain – it works better than you’d think.


3 thoughts on “Pain

  1. Glo

    I was recently speaking to someone about chronic pain after the arthritis in my spine gave me hell cor a week. I said it gives you a whole new perspective on the subject. You are an amazing person! A lifetime of chronic pain has to be sheer hell and yet you have dealt with it and done things people without pain have never done. We should be grateful for each day we have and do the most we can with it.


    1. Jak Post author

      Thanks for the lovely comment Glo. I have family members with arthritis and know it’s a bitch to live with – sorry you have to deal with that. Jak x


  2. KC

    Hi, Jak – Been visiting your site for a couple months now and was wondering if you have checked into Electromagnetic Hypersensitivity (EHS)?

    Our entire family struggles w/ MCAD, POTS, EDS, etc. and find that WIFI is a BIG symptom trigger. Praying for your continued strength. You are a blessing to many.

    Liked by 1 person


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