When I was a kid we used to live in a house with ramshackle outbuildings. My friends and I built a little Den in the upstairs of an old barn, which we approached by way of a ladder through a hole in the floor. One day when I was messing about I stepped backwards, fell through the hole and landed on my back on the bonnet of my Dad’s car which was parked below. Ouch! Obviously I hurt my back but after several weeks it didn’t get any better – little did I know then it would hurt for the rest of my life.
I had an x-ray and was told all was fine. Why, then, a whole year after the accident did my back still hurt?
By the age of 14 the pain was starting to affect my school life and my sleep. I was on all the sports teams (hockey, netball, tennis) but was having to curtail my training because the pain was intrusive. It was in the lower part of my back, was bilateral, ie it affected both sides of my spine, and went across my butt cheeks but not down my legs. It was a dull aching pain which only went when I lay down and I also had some incredibly sore spots particularly in the hollows of both butt cheeks.
My GP referred me to the local hospital who did yet more x-rays. Everything was still ‘fine’ so they referred me on to Physiotherapy, who gave me some heat treatment and various exercises to do. The treatment made the pain ten times worse, but when I relayed that to the Physio I was told it wasn’t possible and they implied that I was making the pain out to be worse than it was.
I went back and forwards to the Hospital for 5 years, with the pain getting worse and worse, and in the end was told that my symptoms were psychological and that there was nothing physically wrong with me. “Do you think referral to a psychologist would be helpful?” I was asked. “No I fucking do not!” was my answer.
At the age of 16 I could barely sit or stand let alone sleep or play sports, so I went to see my GP, bawled my eyes out and refused to move from her office until she’d referred me to another Hospital for a second opinion. A few months later I was admitted to the brand new Freeman in Newcastle for 3 days, where they carried out all sorts of tests. They were the first people to tell me I was “super bendy” but it was only mentioned in passing. MRIs didn’t exist then but I was given a CT scan, a new invention, very expensive and something my local hospital didn’t have. The 3D scan showed that one of the vertebrae in the bottom of my spine hadn’t grown properly and was trapping all the nerves and blood vessels which ran through it to my bum and legs. The fall I’d had was irrelevant and just acted as a catalyst for the pain. I’d actually been born with the condition, which was rare as it usually develops as we age, and my pain finally had a name: Congenital Spinal Stenosis. I was also told I had a curve in my spine and diagnosed with mild Scoliosis, though why this hadn’t been picked up on all the X-rays I had done in Carlisle is beyond me.
The only cure for my pain was spinal surgery, which I had 3 months later. In a procedure called a Laminectomy, the ‘roof’ of the deformed vertebrae was removed which freed the nerves and blood vessels though I was told they had been trapped for so long they were permanently damaged. I thought the surgery would cure my pain, and while it did lessen it never went away.
When I developed severe M.E. in my late twenties my back used to go into the most awful spasms for which I used to take muscle relaxants (this was before my Mast Cell Disease really took off and I was able to tolerate drugs mostly OK). My spine was still very flexible, though, and I got some relief by lying on my stomach in a yoga pose. I also took potent painkillers (co-dydromol) every day, plus anti-depressants to help the pain at night and thereby improve my sleep. One by one, however, over the years I became allergic to all of them – little did I know my Mast Cell Disease was ramping up ready to explode.
Fast forward to the age of 40 and my “flexibility” started to change. Lying on my stomach, which increased the arch in my back, was impossible and even lying on my back became problematic. My pain was no longer confined to my lower back either – it had travelled to my upper back, in particular my ribcage and the area between my shoulder blades. I was also now getting shooting pains in my upper legs and pelvic bones and standing for even a few minutes was agonizing. In 2010 I had an MRI of my lumbar (ie lower) spine, which showed absolutely nothing other than some mild osteoarthritis. Where was the goddamn pain coming from then?!
In 2013 I received my MCAD diagnosis and embarked on a ‘low histamine’ diet (I’m deliberately using inverted commas because there really is no such thing!). Within a few months my back pain was much improved and the muscle spasms I’d had for years had all but gone. My flexibility didn’t get any better though, and by this stage I was struggling to bend over to put on my socks or tie my shoe laces, but I wasn’t in constant pain. It doesn’t take a rocket scientist to work out my mast cell mediators (ie the 30 chemicals released by mast cells when they activate) were influencing the muscle spasms in my back as it’s known that some mediators affect smooth muscle contraction.
For the past 3 years or so my back pain has been really quite good – well, as good as it gets for someone with a progressive connective tissue disorder and an already permanently damaged spine. And then this year it’s all gone to shit and I have no idea why. Yesterday I spent a few hours sitting on the floor sorting a pile of paperwork ready for filing, and last night my back was so bloody painful I barely slept a wink. The pain down my legs is increasing, and now I quite often wake in a morning to find both arms are totally dead so there’s obviously something going on with the nerves in the top of my spine. I have no clue why my back is suddenly so bad, and no idea what’s causing all the pain and numbness.
To be honest, I’m not going to bother investigating my spinal issues. If the problem requires surgery I can’t have that as it’s considered too risky because of my MCAD. If it requires physio I can never do the exercises because it makes my M.E. so much worse, and if it requires drugs I can’t take them as I’m so drug allergic. I really can’t see the point in putting myself through the stressful diagnostic process when in all probability I won’t be able to cure whatever the issue turns out to be, if indeed anyone can tell me what the issue is! But, OMG, living with back (and leg, and arm) pain is shit and at 3am this morning I was proper tearful – 39 years of pain is enough for anyone, especially when you can’t take drugs to give yourself a break.
Thank God for my TENS machine, and warm baths, without which I’d be suicidal. And, yes, before anyone mentions it I’ve had osteopathy, chiropracty, acupuncture, reflexology and every other therapy you can think of – every single one of which gave me a mast cell reaction (the chiropracty made me so ill I had to be blue lighted to hospital in an ambulance in the middle of the night then had to live with my parents for 9 months while my body recovered from the anaphylaxis). I’d rather live with the pain than risk that again.
I usually try to end my blog posts on a positive, or at least with some humour, but today I’m just too sodding fed up. I’m on day 3 of awful endo-induced period pains, feel nauseous, am in pain from my ankles to my neck, my right arm is numb and tingling, after only 2½ hours sleep I’m exhausted and to top all that off I didn’t win the €69million Euro jackpot last night when I was convinced my numbers were going to be up 😉 I’m hoping tomorrow will be a better day.