Tag Archives: back pain

Back pain

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.

 

 

 

 

Expect the unexpected

Life with Ehlers-Danlos Syndrome is a daily game of Russian Roulette and you never know the day a bullet will be fired from the gun which is your body.

I’ve been chugging along for months with no major hEDS-related issues.  My ankles are stiff first thing in a morning and I walk to the bathroom like a constipated duck, my elbows give me gyp, my feet (and consequently knees and hips) are still playing me up but it’s nothing that hasn’t been there for some years now and is just my ‘normal’.

Yesterday I had a lovely afternoon out to celebrate my best friend’s birthday (more on that in my Weekly Roundup post at the weekend).  I felt totally fine (for me at any rate) and went to bed early because this evening I’m going out and I wanted to be well rested.  It’s my Camera Club’s annual awards ceremony and it is the only day of the entire year I go out for dinner.  I’ve even treated myself to a new outfit more, it has to be said, because I’ve recently gained 7lbs and my existing clothes no longer fasten on me than because I fancied a change, and I’ve even done my once yearly finger nail paint specially for the occasion.  I was hugely looking forward to my one and only night out.

I went straight to sleep and fully expected not to wake ’til 6am, but my body had other ideas.  At 1am I was pulled groggily from deep slumber and knew instinctively something was up.  I checked Bertie was OK, who blinked at me sleepily from his bed before sighing and going back to sleep, then realized my back was killing me.  WTH?!

Three or four times in the past couple of years one of my bottom ribs has subluxed (ie partially dislocated) in my sleep and I thought that had happened again, but as I sat up I realized the pain was lower down somewhere in my lumbar spine and that is was bilateral (the rib pain usually being much worse on one side).  I have no clue what I’ve done to my back and can’t believe I can go to bed without so much as a twinge and wake up 3 hours later in agony.

I’ve barely slept a wink.  I can no longer lie on my back or front due to existing back pain, and no matter which side I tried to sleep on the new pain was too much.  I tried my TENS machine, which made my head buzz making sleep impossible, so resorted to Ibuleve gel and a hot water bottle which did little to relieve my suffering (I’m allergic to most drugs, including pain killers, so medication is out of the question).

I can’t sodding believe my back chose this one day out of the year to conk on me.  What are the fucking chances of that happening?!  I’m so mad at it if it weren’t already sore I’d give a good ass whipping.  So I am now sitting in bed typing this with 4 large TENS pads on and trying to ignore the fact that it’s not even touching the sides of my pain.

The health care system here in the UK is nothing like in America.  I can’t just have an emergency physio or doctor’s appointment (it takes at least 2 weeks to see any old GP where I live and 6-8 weeks to get to see your regular GP), physio is only available by referral from your GP (there is a 2 month waiting list) and you can’t just request an x-ray or scan (again this is only done via your GP so could take 6 months, by which time one would hope one’s back would be better!).  So self-management and wondering what the hell has happened is the order of the day.

I am still going to my dinner this evening, even though I am in agony and hugely sleep deprived.  My outfit won’t look quite as nice with my TENS machine hidden underneath it and I won’t look quite so elegant on my crutches but I’m collecting my trophies come hell or high water – I can feel sorry for myself tomorrow!

Pelvic MRI Results

I was getting fed up of waiting for the results of the pelvic MRI I had 6 weeks ago, but yesterday a short letter arrived in the post.  It stated the scan showed “probable endometriosis and adenomyosis” (read about both here) and I now have an appointment on 8th June to discuss.  There was no mention of fibroids, so I’m now not sure if what looked like fibroids on the Ultrasound was really adonomyosis or whether I have both.  They did find a plum sized pendunculated fibroid (ie one that sits on the outside of the womb) on Ultrasound, but this again wasn’t mentioned in the MRI results letter and I don’t know why.  It’s all a bit confusing.

The fact they’ve found endometriosis comes as absolutely no surprise.  I’ve had the classic symptoms of endo since I was in my late teens.  Why it wasn’t picked up on the MRI scan I had at my local hospital in November though remains a mystery – everything my local hospital does is a mystery!  The reason I chose to go to the RVI in Newcastle is that it’s a centre of excellence for endometriosis and I knew beyond doubt they’d find endo when they opened me up.

I’d never heard of adenomyosis but having Googled it all makes sense.  I have every one of the symptoms and it explains my excruciating period pain all these decades.  The only real cure for adeno is a hysterectomy – bring it on, I can’t wait.

So, it looks like I have virtually every pelvic disease known to man: fibroids, endo, adeno and polysistic ovaries.  Yayy for me!  As it’s all been left for 30 years I dread to think what my pelvis will look like when they cut me open.  Seriously, with exploding chocolate cysts ontop of everything else I bet everything is stuck together and there are adhesions for England.  It’s not going to be pretty.

I feel like I’m finally in good hands though and I’ll let you know what the Gynae says in June.

EDS update

I’m aware I  haven’t talked much about my Ehlers-Danlos this year, the reason being it’s thankfully the least of my worries.  My mast cell disease is far more troublesome and scary, and my ME rules what I can and can’t do every day, which is why the focus has been more on those.  However, that doesn’t mean my EDS has done a bunk so I thought I’d do an update on what’s going on with my badly behaving collagen.

As I’ve mentioned in my weekly update posts, the greater trochanteric bursitis in my hips finally seems to be settling down.  It took months of activity rest last year, followed by months on crutches, but at least I’m not in acute pain any more and am able to walk without looking like a constipated duck.  I fear though that my hips will never be the same again.  They are extremely stiff and I can no longer sit or sleep in the positions I’ve used since I was a baby.  I also have to be extremely careful when walking, always using my SI belt to stabilize my hip area.  I do still have pain and as I’m sitting here typing this in my bed both hips are on fire, but at least it’s now manageable which might be the best I can hope for.

My hands too have been really quite good during the past 8 months or so.  In 2013 they were giving me all sorts of gyp and I was wearing Oval 8 finger splints every day, plus my wrist braces whenever I did anything.  I have no idea why but all this seems to’ve calmed down and I haven’t worn my finger splints yet this year at all, and my wrist braces only occasionally.  Yayyyyy 🙂

I had really painful tendonitis in my right elbow for the whole of 2012 and 2013, but this has also improved and only niggles now if I’ve overdone it.  Big Brucie bonus, cos you don’t realize how much you use your elbows until they hurt!

My knees were playing up late last year, with strain-type ligament pain on the inside of both legs but again this seems to’ve calmed down without any intervention.  I do have orthotic insoles in every pair of shoes I possess though, including my slippers, and dread to think what my ankles and knees would be like without them.

Speaking of ankles, apart from stiffness when I’ve been in one position for a while, they too seem to be doing OK.  Horrendously stiff ankles first thing in the morning in 2010, which made walking for the first hour of every day impossible, was the symptom which eventually lead to my EDS diagnosis.

On to the negatives.  My eye floaters are appalling and reading or doing computer work is tortuous.  If I could tolerate drugs of any kind I’d be at the eye hospital for laser work or a complete lens fluid replacement but with my MCAD I just can’t risk it (or afford it at £2,500 per eye!).

My right jaw is still bothering me, although to be fair it’s less painful now I’ve had my upper right molar removed.  I have a mouth brace to try but it’s way too tight and makes my teeth throb.  I really do need to make an appointment to get a better fitting brace made – it’s on my ever expanding list of “things to do!”.

I thought having my molar out would cure my teeth/gum/cheek bone pain but sadly that’s not been the case.  My cheek bone still aches constantly and the teeth on either side of the molar that was removed are sore and tender.  I thought this would settle down in time, but it’s now been 8 months since I had the tooth out and nothing much has changed.  It’s hard to describe the symptoms as the pain isn’t acute, it’s more of an irritating, annoying achy pain like an itch you can’t scratch.  I constantly want to bite down hard on my teeth and rub the gap in my gum where my tooth was with my tongue.  There is barely a second of any day where I’m not aware of my missing tooth and my surrounding teeth, which isn’t how I imagined it would be.  Not a clue what’s going on there and the dentist is none the wiser either.

I’m having some issues with my neck, in as much as if I tilt my head backwards (eg to lie on a pillow) I get pins and needles and feel weird and dizzy.  Solution: don’t tilt your head back Jak 😉 .  Seriously, there’s no point in having it scanned or anything being as though surgery is out and any kind of drug intervention is also out.  Zero pointyness.

My stomach/GI problems are many and varied and demand a post all of their own but suffice to say constipation, pain, severe nausea, cramps and reflux are the worst offenders.

My biggest problem at the moment EDS wise is upper back pain.  It’s right between my shoulder blades and feels muscular in nature.  I think my ligaments are really weak and by mid afternoon they’re just too tired to hold my upper body upright without straining to the point where the burning, aching pain is hard to live with.  I’m also having acute pain along my rib cage on the right hand side and have a really sore point when it’s pressed.  Could be ligaments again, or rib slippage or any number of other things.  This back and rib pain is difficult to treat, bearing in mind I can’t take drugs and it’s impossible to place TENS pads in-between your shoulder blades yourself, even when you’re super bendy 😉 .  I haven’t been able to find a wearable upper body brace either – my DD breasts keep getting in the way!  So if any of you have recommendations for comfortable upper body supports which don’t cost the earth and can be bought in the UK please let me know.

So, that’s me from H-To-T.  More fragile than fierce but it could be a whole lot worse!