The trouble with back pain is it comes and goes and almost everyone at some point experiences it.
You then have the issue of, especially if your memory is not perfect, at what point do you decide it’s gone on a bit too long?
It’s not like an accident that happened on a particular date that you can cross check months or years later with friends or relatives. It’s like any other knock or graze in life and easy to imagine it was falling over on a boozy night out or a hard session at the gym or over-reaching for those tinned tomatoes on the top shelf that did it.
So you put it down to some everyday event since you’re otherwise fit and walking and talking just fine.
For me especially, the chronic pain crept into my life slowly and under any radar so having a stiff back in the mornings became normal. Why would you go to the doctor about something you feel is normal? Not being one of life’s moaners I would rarely complain to anyone about the pain so no one else would encourage me to seek medical help either.
Looking back it must have been way under everyone’s radar since it took over 10 years to be diagnosed despite numerous hospital checks.
When I did seek help, the first line from any Doctor or practitioner I approached was “so when did the pain start?” and to me it was the same as saying so when did you learn to read? Answer: Don’t know. All I know was it was years ago over a long period.
Once I was diagnosed I kicked myself for not keeping a better record of my experiences up to that point. Bare in mind this started in the early days of emails and online systems so the majority of communication was by letter or phone. Nowadays my email account is like my second brain with this fantastic search facility my first brain seems to lack.. Still no fear! we have NHS medical records in the UK from birth… or so I thought. I’ve since found out there are as many gaps here as there are in my head. Tracing my records back to about the year 2000 has proved tricky as a result of moving from University up North to University back home on the south coast, to West London and then about two other different boroughs of London over about 7-8 years then back down south to town a few miles away from where I grew up but far enough to have to register with yet another surgery.
I have paid a few £10 admin and 10p photocopy fees as charged by the surgeries themselves for looking up the data they hold on you but unfortunately got little from it.
From the day I received my diagnosis, I wanted to know for myself how I had arrived at this place. My second reason for doing it was to publish my experiences in case others are on the same path I found myself on and in reading this ask their Doctor for a blood test and MRI scan so if they have it, they can deal with it sooner.
Below is a compilation of dates and rough memories which describe my journey to diagnosis of AS.
Please note this is a work in progress and so there are still some notes I’ve yet to expand on. I had to add bits in as they came to me whilst writing this, just in case I couldn’t remember them later… thanks.
1998-2000 (approx.)
I was living in Vauxhall in a flat share. Having the lowest income of the three of us I took the box room and knackered single bad and mattress.
I approached my local GP and was referred to a Physiotherapist in the Vauxhall area. I don’t recall a lot, is was probably a few sessions, perhaps 6 in all and mainly involved me turning up, stripping down to my smalls, lying down on a bed or bench and lifting and twisting my legs, or lying on my side whilst looking over my shoulder to help twist my spine.
2000 (approx.)
– Doctors note about my back from Portsea Place, London coming soon.
– Thoracic X-Ray and referral – no result
2001-2002 (approx.)
I prepared to visit my new local GP about the back pain and having briefly searched searched the internet I found a page or two describing my symptoms. Waking early in pain that gradually disappeared after an hour or so of rising and moving around. The name was a little tricky to remember, so I used the old visual memory technique and thought of an old man bent over because of a bad back trying to pick up the hank he had just dropped,
“Hanky-losing-spondylitis”
I recalled this way of remembering AS and what I had read about AS to the doctor in Leytonstone who smiled and told me it “wouldn’t be that”. Sadly no tests were proposed to investigate the possibility and I took his word for it, after all he’s the expert right?
Chiropractic
Liverpool Street, London
For around £75, this Chiropractic close to Liverpool Street Station in the financial district of London was offering a consultation and X-ray. It seemed like a good deal at the time and I booked an appointment.
I remember the reception, it was small, with a high curved desk leading you round to a corridor off of which were the consultation rooms. I don’t recall the initial discussions, but I think the x-rays were taken in the basement, I do remember the chiropractor asking me, rather instructing me to hold me head up and keep my neck straight, I remember this as he later described my neck as being a problem because it was straight!
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After receiving my report, I didn’t get copies of the x-rays. I hadn’t thought to ask as I was only interested in the result. It was early days in my own attempts to find the cause of my pain. However some time later, perhaps a year or two, I decided to contact them about the actual images.
As I got deeper into misdiagnosis I wanted to record more of what I was going through and what I had tried. After all these images may prove an important snap shot in time that I could reflect on.
Osteopathy
Superdrug Oxford Street, London
One day I passed Superdrug on Oxford street and through the billions of shoppers happened to glance at a sign on the pavement advertising therapies in-store. I can’t remember why I was attracted to Osteopathy, but I think if you have back pain you happen to notice every advert for a cure. Osteopathy is based on the principle that the wellbeing of an individual depends on their bones, muscles, ligaments and connective tissue functioning smoothly together. Osteopaths believe their treatments allow the body to heal itself. They use a range of techniques but do not use drugs or surgery. That afternoon I went and checked it out.
I wasn’t wholly prepared for the first session. Just metres from 1000’s of people on Oxford Street I found myself stripping down to pants whilst I could still hear shoppers the other side of the wall. The practitioner was very reassuring which is handy because sat behind me he then asked me to bend over and touch my toes. Thankfully I’m not too shy and I was brought up to wear clean pants everyday!
I’ve carried parts of his assessment around with me ever since. Mainly that he was able to notice my slightly higher hip on one side and that my lower back doesn’t really bend.
Each 45 minute session was about £25 and for that I would mostly be laid out on his bench before being twisted and cracked.
Reflexology
Slovakia – At a Spa
Reflexology is an alternative medicine, that believes applying pressure to certain areas of the body like feet and hands using finger and thumb techniques, effects changes on other parts of the body.
This treatment wasn’t planned, it was a couple of days holiday at a thermal Spa. It was only when I read the treatments and how cheap they were that I thought I’d give it a go. You’ve maybe walked past a shop with a white ceramic hand or foot with marker pen-like marking and words all over it demonstrating the link between these extremities and the rest of your body. As ever I was open to trying it but still sceptical as to it’s scientific credentials. I mean, how can a rub of the left side of the ball of my foot say make my shoulder feel better? What kind of wiring is that? What if my heel is connected to my mouth and every time I’m bare-footed on a pebble beach my mouth opens and shuts involuntarily like gold fish and I dribble down my front?
Acupuncture
Oasis Leisure Centre, Covent Garden, London
I was already a ‘swim’ member of this central London gym when I saw the advert for Acupuncture treatment. What a great location this pool was in, located in the middle of theatre land with a gym, inside pool and heated outside pool!
I would go swimming on my hour lunch break, 15 mins walk from Soho and change, 45min swim and 15 mins change and walk back – very regimental but it worked.
So I had heard about acupuncture treatments at the centre, I had my doubts about the science behind acupuncture but thought it was worth a shot.
I recall the consultation room located in a corridor to the side of the outside pool, I was treated by a man and imagine I gave him the same run down of my symptoms as I gave everyone.
From the consultation I only roughly remember one question, which was something like “what do you hope to feel after this treatment” and I replied by explaining how I felt following my Osteopath treatment in that “I walked away feeling warm and refreshed like I had just stepped out of a shower” and he said he hoped to achieve the same.
A session was about 30-45mins, the room was dimmed and soothing music was played. I found lying face up in a darkened room, after lunch listening to music was nearly always a recipe for falling asleep so perhaps a good state to be in if you’re going to have someone stick 20 or more needles into you.
To be fair I didn’t feel most of them, I would say the ones that go in-between your biggest and next biggest toe were the most painful so watch out for those if you go 🙂
At least twice the acupuncturist had me lie face down and insert needles up the length of my spine. Now I don’t mind needles, like blood tests or vaccines but the thought of inserting into my spine either side of my vertebrae made me feel a little uncomfortable, actually having them in my spine made me lie absolutely still for fear of twitching or itching or turning somehow and doing more damage. Thankfully lying face down I couldn’t see anything and the warm room and soft music was working it’s magic, that was until he connected all the needles to a machine which then sent pulses of electricity into them making the muscles around my spine contract and relax, now that’s a strange feeling. It would go on for about 5 to 10 minutes but the only relief I felt was having the machine turned off an the needles pulled out.
So we tried something else, cupping. This involved me lying on my front while warm cups were placed up and down my back, maybe 6 in all. As the cup started to cool the air inside shrinks and as long as the seal between the cup and skin is airtight the vacuum inside the cup “sucks” your skin lifting your muscle as opposed to compressing your muscle as with most massages.
I did leave this session with 6 giant love bites (hickies) on my back caused by the suction which gained a few laughs back at the office, but that was the only gain.
On another occasion, while laying face down on the bench, he asked me if was stressed, I laughed through the hole on the bench for my face and said “nah”, because in my head I’m quite laid back. Without thinking I started to talk about some things that were going on and before I knew it I had reeled off a dozen big events to which he replied “sounds stressful to me”.
There’s no doubting the therapy in talking to someone about life’s stresses and strains however in in suggesting I may be the slightest bit stressed made me question the cause of my pain again. Maybe I was laying in bed, unconsciously all twisted and contorted because I was stressed, hence why I woke in pain.
In all I had several treatments, maybe more than 5 but probably not more than 10 before I decided the treatment wasn’t having any lasting effects.
Buying a New Bed
Excluding my power naps on the tube heading home after work, on average we spend a third of our lives asleep, so good bed is pretty important. More important if the pinnacle of the pain, like me, was every day at 4am precisely, as if an alarm had been set. Remembering the first time I got up at 4am is impossible now. I know I was doing it in 2003, but it was probably earlier, maybe 2 years earlier.
At the time when I looked up beds that were good for backache, I found all sorts of advice but most of it centred around orthopaedic beds, electric beds or water beds. Nowadays there’s memory foam too, but whatever you think you can’t try these beds out. Lying on one for a minute in your chain-superstore wont tell you if you’ll get through the night and what do the shop assistants know about conditions such as AS? I never asked so who knows but since the disease is not well known I suspect very little.
In the end I opted for a 1000 pocket sprung mattress on a sprung base ‘reduced’ to £800! It helped immediately! It wasn’t a cure but it helped. I’d say it was somewhere between medium and firm, although bare in mind any mattress will soften over time and this one had to be flipped regularly. It lasted me 10 years, money well spent I’d say.
I put up with a very poor mattress afterwards with the support of NSAIDS and would have happily bought the same mattress again, except they had stopped making it, or perhaps given it another name, it was 10 years ago after all.
In the end we risked it for a biscuit and went with another pocket sprung mattress for £400.
And it’s lovely!
Commuting on the London Underground
I have a very strong memory of pigeon stepping along Tottenham Court Road tube platform in rush hour on the way to work. People rushing round me like a river of black suits and me thinking, people must think I’m massively hungover or I need to the loo and can’t take speed walk like everyone else. Seat for the more needy but I look totally normal plus I’m too stubborn or embarrassed to ask. I ended up mentally marking exactly where to stand on the platform so I would get in first and get a seat without excuses.
I have to admit to pretending to be oblivious to some more needy passengers, hoping someone more generous and healthier would give up their seat. But I had sympathy for those needy folks so after a couple of minutes I would offer my seat and whether accepted or gratefully refused, in front of all the other miserablites I felt like my good deed for the day boxed was ticked.
Injection into my Sacroiliac Joint
Hospital, London
I believe this is described as a therapeutic sacroiliac joint injection. Having been diagnosed as having inflammation in my hip, the injection is offered to provide relief from the pain of sacroiliac joint dysfunction.
The sacroiliac joints are in your hip and lie next to the spine join the hip with the sacrum. One on each side.
On the day of my injection I arrived at the hospital in London, where I was living and asked to where a gown over my underwear. I lied on the operating bed and the doctor introduced me to the equipment he was going to use.
Under the visual guidance of his x-ray machine, something termed fluoroscopy, for accuracy he proceeded to inject my sacroiliac joint via my stomach. Anti-inflammatory medication (corticosteroid) is included in the injection to provide pain relief by reducing inflammation within the joint.
Now this is an odd feeling. Although I’m fine with needles, injections and giving blood samples, I must have had a local anaesthetic as I don’t recall the needle going in, more the discomfort as the needle found it’s path through my intestines! My mind was boggling as to how this needle was going to find it’s target without puncturing something else!
After about 5-10 minutes the doctor said he was having some trouble and asked me to turn over so he could try again through my back! (gulp)
So I spun over, can’t recall any bleeding from the first attempt, and he stuck the needle in again. One again, weird internal twinges kicked in as the needle passed through the layers within.
I couldn’t see the x-ray machine anymore and so when he said it was done, I had to take his word for it.
As I write this, years down the line, to this day I don’t recall any positive outcome from this operation. So if the anti-inflammatory drugs worked, it was only temporary, as my condition, although I didn’t know it then, was permanent.
2006 Leaving London
Following the passing of a close family member in late 2005 I decided it was time for a change and so I moved back down to Hampshire to decide what to do next. Both in terms of career and with my search for a diagnosis.
2006-2007 Joining a Gym
David Lloyd gym, Portsmouth.
Having been a steady member of a leisure centre in my time in London, I wanted to keep up my fitness so I joined David Lloyd gym. I can’t recall my preference of private gym over council leisure centre, but I saw value in their facilities, plus you got a free bag and towel when you joined! Two things I still own and use to this day!
From the articles I had read on back pain, I understood core strength was important to everyone, so I picked exercises to help me generally and some that would help with core strength and back muscles.
I would regularly use a rowing machine as a warm up, but always treated it a bit like an Olympic race rather than a warm up. Then rather than free weights I’d use the machine to target different muscles. At the end I could dive into their outdoor pool and do some lengths to cool off. I’ve always loved swimming.
After a period of about a year, due to a mix of finances and continued pain, I decided to leave David Lloyd gyms. At this point I realised my membership to the gym was more like a marriage, you can join in minutes and you’re showered with gifts, but exiting it takes months. So be warned.
Thankfully I had recently decided to try a Chiropractic again and he wrote a note to the gym explaining my situation and they responded kindly allowing me to cancel my membership immediately.
2007-2008 Back to the Chiropractic
Kinch Chiropractic Havant, Hampshire
My previous experience of a Chiropractic had been brief but I believed at the time there was something in this idea behind spine and bone manipulation.
Mr Townsend was my chiropractor, a lovely guy who was understanding of my journey and pain and following an assessment session, believed his treatments could help. I think at the time each session was about £20-25 for something like 30-40 minutes.
The treatments included the expected spine and neck manipulation and clicks. Gapping was a term he used, which in my head made sense at the time. Pain I was feeling in say my side, could be related to compressed nerves in my spine and not not necessarily something in my side. SO his actions were aimed at relieving that pressure.
I also had treatment with a vibrating massager to help loosen up my muscles I suppose. I was taught a simple routine of movements to try at home each day to help open up my back. Wall angels, superman pose and bug were a few I remember. Wall angels in particular seem to relieve my back pain quite quickly. This was less to do with chiropractic and more to do with movement.
One seemingly important discovery was that I had one hip 1cm higher than the other. Or rather I have one leg longer than the other by 1cm. Something I also think the Osteopath in London mentioned during an initial assessment. I believe it’s quite common.
This would naturally lead to my body or spine in particular being out of alignment and by compensating for that difference it could be my muscles are tense when they shouldn’t be for long periods. Was this leading to the pain I was feeling?…. hmm maybe a bit. Of course I know now the cause was genetic, not muscle or motor based, however this could have contributed.
Velcro Support Belt
I bought this product after a recommendation from the Chiropratic for about £35. It did provide support, but the trade off was often soreness from the restricted tightness of the straps over my hips and belly. It would feel particularly tight when walking or sitting and there was a constant feeling of needing a wee as your bladder can hold little more than half a cup of tea under such pressure, and I drink a lot of tea!
Then those toilet trips lead to their own problems. There’s nothing quite like the sound of ripping off what feels like an enormous amount of Velcro strapping in the least sound absorbent room of any building anywhere. I’d walk into the loo’s and pick a cubicle of course, as it would never work stood at the urinal, then slowly as possible if I were not alone, or super bloody fast if I found myself alone, I’d peel off the belt. Unlike the stereotypical ladies loo, in the ‘men’s room’, guys don’t speak to each other, never in a million years could I explain away the sound of the ‘special pants’ that I must be taking off behind the cubicle wall without sounding like I definitely wear special pants and I’m now lying about it.
In the end I determined that during periods of pain in my hips there was definitely some benefit from the belt in supporting my muscles around those inflamed areas, however the compression created it’s own pain. I would say I used it religiously for a few months, then on and off for a further 6 months or more, before it wasn’t the answer.
Tens Machine
I spotted an advert for digital pain relief on TV I think it was, from Lloyds Pharmacy. Naturally my ears prick up at the mention of pain relief. Anyway the advert was for £5 off a TENS machine which made it about £15.
Well compared to one session with a chiropractic or osteopath, it seemed like a bargain so why not give it a shot?
Well, just in case you didn’t know ‘Transcutaneous electrical nerve stimulation (TENS) is a method of pain relief involving the use of a mild electrical current.’
So you get a box which contains the batteries and which controls the rate/power of the electrical stimulation. From this box 4 wires lead their way out to 4 sticky pads which you place on your skin in the area you wish to treat. When you switch it on you might not feel anything but as you increase the power you will feel a tingle near the pads up to the point where your muscles will be twitching from the electric signals.
The theory is the electric signals interrupt or disrupt or reduce the pain signals going to the spinal cord and brain which may help reduce pain or help relax the muscles. According to the NHS a TENS machine may also stimulate the production of endorphins, which are the body’s natural painkillers.
For the reasons above, TENS machines are very popular amongst women as a source of non-chemical pain relief during contractions.
I found I got temporary relief from the machine, but by the end of the day or by the next day, I was back to where I was.
Insole Arch Supports to Correct Stance
If you’ve had or read about back pain you’ll know that stance and posture are common causes of pain. The stress on the spine from that posture being one of the sources.
One cause of bad posture can apparently come from flat arches on your feet. The shape of the feet effects your hips position and therefore your spine.
I bought an off the shelf pack from a specialist sports shop in Portsmouth, Alexandra Sports. They have expertise in fitting shoes for athlete’s, which I am sadly not, however they stock good stuff.
I wore them dutifully for a while but didn’t notice any immediate effect.
What didn’t cross my mind is that with insoles like this in your show, there’s less room for your feet, so actually they were a touch uncomfortable. Perhaps there are more suitable shoes on the market for this sort of thing? Anyway I even tried wearing just one insole on my newly christened short leg to see if I correct the difference and align my spine. Maybe it helped maybe it didn’t. The trouble with any experiment I try is that I don’t have a ‘control’ version to compare with.
So if I do a lot of heavy gardening one weekend while trying out some herbal anti-inflammatory, the chances are it’ll not do a thing to the delayed pain I’ll get from the gardening. And it doesn’t have to be as heavy as gardening, it could be from carrying my son for a touch too long because he’s ‘tired’ or from sitting on the floor for 10 minutes.
X-ray on hip and lower spine
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Diagnosis of AS
Dr McCrae
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Prescription of NSAID
notes – Diclofenic Sodium plus an anti inflammatory.
(NSAIDS and their risks)
Hydrotherapy course
I was prescribed about a 6 week course at the QA Hydrotherapy unit in Portsmouth. Despite its Lego brick façade it felt like a private Spa when you came out of the lift on the lower floor.
I think I went for an assessment first and to meet Tom who was going to be my therapist for the course. I was late. So late I probably should have been turned away but luckily they saw me. The assessment involved a chat about my condition then mainly measuring me in various positions, bending to the side running my hand down my leg, my height, how far I can turn my head to either side, I think some distance between too dots stood upright and when I bent over and even the distance between my ears the wall when stood with my back to the wall. They may seem odd at first but as curvature of the spine is the trade mark of long term AS sufferers, I have had these measurements at various times ever since.
My timing didn’t get any better the next time I had to go, I recall running from my car across the busy hospital carpark and a lady looking at me and punching the air with a straight arm and smiling, which I decided was the action of a mad person who was probably picking up a prescription. Only after I had run into the treatment building, a rare site for the reception staff there no doubt, and stood in the lift did I realise I had my Superman jumper on 🙂
I have a strong memory of stepping into the pool each time, it was so warm it felt tropical and thankfully big enough not to feel like a cosy bath with a bunch of strangers.
Tom presented me with a laminated sheet of exercises propped up by a float on the side of the pool. We began going through various simple exercises like walking from one side of the pool to the other, putting my hands on the side and lifting my knee up and down. I was interested in the theory and physics behind the exercises but felt like I had to prove I was fit an not like the elderly or disabled folks I was sharing the pool with. Tom was younger than me and cool as a cucumber so when asked how I felt, I’d answer, “like I could do a hundred lengths” which probably sounded cocky thinking about it now.
The funniest exercise I did involved taking a little golf ball-sized float that had a ring around it, think Saturn or a lolo-ball if you were around in the late 80’s! I had to blow the ball so that my breath would get under the rim of the ring and flip the little ball over, it wasn’t hard, so you keep blowing it and blowing it and slowly making your way across the pool – but like blowing up the crocodile or shark inflatables for kids in the summer, it’s not long before your vision goes and you’re momentarily pissed.
After a few sessions I settled in and actually felt a little sad when it came to the end. That didn’t last as I was offered hydrotherapy again and I turned it down because I was swimming regularly and so the last course had no measurable effect.
Swimming
notes –
NASS conference 2011
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April 2013
pressure pain in left index finger
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August 2013
I am still using January’s prescription even though prescription is for 3 months and I haven’t been swimming much due to the house move, but the house move has kept me active, perhaps that’s the reason?
I also received a letter this month from my GP saying he had concerns regarding the safety of using Dicolfenic Sodium and that all future prescriptions would be changed to Naproxin. (Quote letter)
September 3rd 2013
Started weekly Tae Kwon Do classes again with my 8 year old son after a 20 year gap!
Originally it had taken me 2 years to achieve a blue belt and that’s passing every available grading and picking up 2 best student awards along the way. Now it seems every grading is a belt change so although I’ve gone back to white I should be able to get to blue in half the time! 🙂
I was very worried about the kicks in particular, spinning on the ball of one foot and kicking high or kicking boards with the other. It was my hip joint pain over the years that caused the most distress and discomfort and considering my pain-free run this year I considered joining a risk but who wants to live in fear instead of sharing some good times with their son and finishing something they started 20 years ago.
So with the enthusiasm of my son and the 10+ years knowledge of what my body can and can’t do I’m going for it.
Black Belt or Bust!!
September 2013 – ‘Bust’ was a bad choice of words. Whilst sparring with an experienced black belt, so it came to pass that at the very moment he decided to try out a jumping spinning type kick I would step the wrong way or move my arm so much so his heel fully connected with the left hand side of my rib cage. Naturally I collapsed, fought to catch my breath, I haven’t felt so much disabling pain in quite some time. Another chap shouted ‘man down’ and the teachers looked over, but I recovered quickly or so I thought and carried on sparring. The next day I was ok until I pulled on a chain to open the warehouse door and then pulled the forklift handbrake back to release it, both causing some sharp pains in my left chest, but nothing too major.
Over the next few days the pain grew considerably taking my breath away most of the time when I moved. I attended the following weeks TKD class but sought comfort from my doctor too, with a new prescription of anti-inflammatories. His assessment of my chest was to ask if I had any lumps, to which I said “no”, was there any bruising, “no” I said again to which he said “it’s very hard to break a rib”. Sadly no advice about cracked or bruised ribs, so I attended, rightly or wrongly, a second class following the kick but skipped the third week as the pain was still with me despite daily NSAID’s and Paracetamol. I’m going to the next one as there’s only a couple of weeks until the first grading which I must past of face the ridicule of my 8yo forever!
Change of NSAID
Following a letter from my old GP I sought advice from my new GP and he said it was happening across the board.
Apparently the risk of heart disease from Diclofenic is something like twice that of Naproxin, but it was a tiny risk to start with so he said. At the 2011 NASS conference we were told people with AS were 50% more likely to develop cardiovascular problems, so the two combined was a little worrying.
The prescription didn’t include Antacids as expected but when questioned on them he said I probably didn’t need them until I was older when the risk of damage to the stomach from NSAIDs must be greater I guess. He then said it’s your Kidneys that can suffer and you don’t even know that’s happening… blimey, any good news I said.
As of November 2014, I’m still on the Naproxin and I’m now a senior blue belt in Tae Kwon Do! which means I have finally surpassed where I was 20 years ago!
March 2015, I’m now a purple belt having passed my last grading in February 2015. Unfortunately a professional kick boxer who joined our class caught me in the ribs again and this time the pain of a cracked rib was all too familiar. I sat out the rest of that class and haven’t been back for 3 weeks, whilst taking NSAIDS and Paracetamol everyday to avoid the discomfort. 🙁
I have another grading in just over a month that I don’t want to miss, so back to class next week to see what I can manage.