My back has been the bain of my life. When I was 11 I fell through a hole in an upstairs floor while playing in an old barn and that was the beginning of a lifelong journey with back pain.
Over the next 5 years I had X-rays which showed I had mild scoliosis (ie curvature in the spine) but couldn’t find any reason for my pain. I also had physio (which made the pain ten times worse which I was told wasn’t possible) before my local hospital decided I was an attention seeking teenager who needed psychiatric help. I disagreed. At the age of 16 I sat in my GPs Surgery and said I wasn’t moving until I’d had a second opinion. I was given an appointment at the Freeman Hospital in Newcastle who had one of the first CT scanners in the country and it was discovered I had spinal stenosis (narrowing of a vertebrae in my spine which was pinching nerves and blood vessels) and I needed urgent laminectomy surgery. It’s rare for anyone to be born with stenosis and I now know this could be related to my hEDS. The surgery didn’t cure my back pain, though, and I have suffered ever since.
I also have hyper-lordosis (commonly known as swayback) which is an exaggerated inward curve to my mid spine which causes my posture to be completely off. It has caused me no end of pain my entire adult life. The muscles and ligaments which hold my spine together are already weak due to my hEDS, so to have an abnormal load placed on my mid spine means that they can’t cope with the pressure and being upright for any length of time is tortuous.
Everything went to hell on hand cart when I turned 40 and my hEDS suddenly went berserk. My back pain only used to be apparent when I was upright, so lying down and sleeping were fine. Not any more. My back pain is now constant and nothing I do alleviates it.
This week has been one of my worst ever and I have no idea why. Ten days ago I drove my Dad to hospital in Newcastle and although my back was achy and sore as it always is I was fine. The next day, however, the second I woke up I knew something was different and I could barely move. Within a couple of hours my period started and I didn’t know whether it was the driving that had done me in or my hormones, which have been causing absolute havoc with my ligaments this year. However, I thought after a few days rest I’d be fine. I was wrong.
The pain was originally around my SI joint.
I have this a lot and it causes acute aching over the joint itself plus stinging nerve pain across the tops of my hips, in my buttocks and down my legs. My leg pain this week has been dreadful and I have had shooting pains right down to my toes. Lovely. There’s nothing much I can do for this type of pain, other than lying in a hot bath, regularly slathering on Ibuprofen gel, using my hot water bottle and my trusty TENS machine. I also always use an SI support belt when I walk anywhere otherwise I’m crippled with pain afterwards.
After a couple of days the SI pain eased off a little but the pain migrated into my mid spine, just below my rib cage.
Again this caused stinging nerve pain right across my mid back and sleeping was out of the question because every time I lay on my side it got worse. Much worse. Treatment consisted of hot baths, pain relieving gel, heat pads, my TENS machine and my back support (which is OK when I’m standing but squishes my ribs and intestines when I’m sitting). None of it helped.
Three days ago the pain from my mid spine slackened off a tiny bit, but I seemed to have a slightly sore point on my neck. Weird, as I’d done nothing but rest for days and within 24 hours it had largely gone.
However, the next day pain seemed to be creeping in to my upper spine and by the time I went to bed that night it was really sore.
I woke the next morning with all the muscles in my neck in spasm and pain across my right shoulder blade, up the right side of my neck and into my head. FFS! It’s in a place I can’t reach either to put on gel or my TENS machine, so I’m just having to put up with it. I’m struggling to use my right arm and can’t turn my neck to the left or look down at all.
This morning, as if I haven’t suffered enough, all the pain has decided to come at once so I have SI pain, leg pain, mid back pain, upper back pain and neck pain. I could howl, because tomorrow is my Photographic Distinction that I’ve worked towards for months and I’m travelling over 100 miles for my judging then having to spend the whole day sat on a hard, plastic chair looking up at a large screen. It’s going to be complete torture.
I have absolutely no idea what’s set all this off and why, after resting for 10 days, it’s getting no better. I am pig sick and there have been days this week when I’ve wondered how much longer I can live like this. 40 years of pain are enough for anyone, not withstanding all the other symptoms I have from my diseases. The fact I can’t sleep because I can’t get comfy is the final straw and I am exhausted from it all.
I keep telling myself “this too shall pass” but honestly it doesn’t help much. How I wish I could take pain killers! Mind you, there are days I’d be tempted to swallow the entire bottle so maybe it’s no bad thing I can’t take them. I’d kill to get drunk but 😉
There won’t be a weekly roundup tomorrow as I’m having to set off at 6.50am but if I’m up to it I’ll do one on Monday to let you know if I passed or failed my distinction. Wish me luck!