Background Part 2 - The road to diagnosis

Please read part 1 first or it will seem disjointed. 

I didn't mention brain fog in the previous part. I presumed this was a symptom of lack of sleep rather than anything else but it's something I've experienced since I was at high school. 

Anyway...

With a slight overlap - in  mid-2012 I went to a doctor in Ipswich who diagnosed me as having sciatica. It was good to have a name for the condition. He was wrong but I had a name and that contented me as it meant it was something that could be treated. I was put on Amitriptyline, a drug when taken at low doses is used for neuropathic pain, it's also used in similar doses so I thought it would help with my sleeping. It did - I slept for 14 hours every day I took it. It didn't help with the pain  - doses were increased in 10mg steps until it got to 50mg. I slept well, the pain wasn't controlled. When I returned to work (overseas) I wasn't able to get the medicine but I also realised I couldn't take the medicine and work at the same time so phased it out. The pain continued. 

While some of my previous jobs hadn't gone well this job was a total car crash. I struggled with the short walk to work and was totally exhausted by the end of the working day. I lasted two months and then I had so many health problems I was off work more than I was there. In the end I resigned. I took a second job for weekends to earn some pocket money and even this was too much, I enjoyed the work, I liked the company - they wanted to hire me. I said no. I needed to return to the UK to be treated. 

Back in the UK I was able to rest and recover for three months. I saw a doctor who prescribed cocodamol 7.5/500  but it didn't help. Nothing did. I applied to university, I was successful (see previous posting). In September I saw a doctor in Aberystwyth who felt something more was wrong, I was given an appointment for an x-ray and given an ECG - both were clear. He prescribed 15/500 cocodamol. 

During my placement the pain got so bad I had to stop. I saw a doctor, he gave me cocodamol 30/500. It didn't work. I stayed in Wrexham for just over a month again self-isolating in my room (with my Facebook and WhatsApp friends around, of course). The pain was so bad I could scream. 

I haven't mentioned this before but since 2007 I had been having pains in my chest. I've mentioned it to doctors and they said if it comes and goes ignore it or take a painkiller. Thanks. This was pain that doubled me over, it was pain that made me hold back a scream. It was worst when I stood up for long periods and for some reason cinema seats made things worse. While in Wrexham in December 2013 I had gone to the cinema twice in three days. I was in a huge amount of exhaustion pain and this chest pain was at its worse. I called NHS Direct (111 hadn't been rolled out in Wales at this point). I was instructed to go to the Wrexham Maelor Hospital for the out of hours GP. He didn't know what the problem was so diagnosed chest pains and admitted me into the hospital. I was given a bed and drifted in and out of sleep - it was a transit ward for new admissions awaiting diagnosis. While resting the pain dissipated. I spoke to a surgeon who was looking after the ward and he diagnosed a condition called 'costochondritis' and advised me to look it up online for more information (when I was more awake) and to take Ibuprofen when I have problems and discharged me (offering the option of staying in the bed overnight but I decided to taxi home). A few days later I went to the cinema again and took Ibuprofen as prophylactic to prevent pain. I felt uncomfortable but was able to sit through the screening with no significant pain. Now I take Ibuprofen intermittently (my GP doesn't like me taking it regularly) and this pain is now under control. 

But not the hip pain. 

Upon returning to Ipswich I eventually registered with a GP in March. This was the start of my diagnosis and that will be my next posting.

Background Part 1

I'm no stranger to pain. 

Since I was a kid I've broken bones (leg and skull) had countless ligament and tendon sprains and for most of the last two decade have suffered from chronic fatigue. When I've mentioned that to a doctor I've been told I need to work on my fitness, lose weight and things will get better.

Things never did get better. 

Every day, every step became more of a trudge. I was in pain. I put it down to lack of fitness so tried to go to a gym and worked as hard as I could. Then I got home and tightened up, the pain level was so severe that I couldn't leave home for a week. 

Over the years I've enjoyed travel but for every day I backpacked there was another day (or three) that I was curled up in my hotel/hostel room reading a book or doing low energy activities in the immediate area. It meant that my heart was hiking but my head said I could only hang about cafés and bars. Now I'm not criticising coffee shop society but I wanted to live as well. For every great story I could share there were so many pages edited out where I overplanned or found excuses not to do something that day. 

People called me boring. People called me lazy. I had no reason why I couldn't keep up with other people. I blamed myself - my weight, my lack of fitness. What I didn't do is consider the pain to be a symptom rather than a consequence. 

Now I don't want this to be about past regrets. Over the years I've travelled around over two dozen countries in Europe, North America and Asia. I have hopes to travel again in the future and have many more friends around the world than I do at home. The experiences I've had have been more than many people experience in their life. I can't criticise that. I'm glad I travelled when I was young enough to do so, I can't say I haven't lived. 

Let's get back on topic - the pain. 

When did it start? I guess at school when I wasn't able to do distance running. I would amble around the cross country route or not really care when being lapped on a track when I hadn't completed 400 metres. I was doing it because I had to rather than because I wanted to. I was called lazy - water off a duck's back really, I was at school to learn and the punishment of running sports just weren't my thing. I'd opt for contact or semi-contact sports such as rugby, hockey and football. I'd avoid sports where I needed to run such as baseball or cricket (if I had to play I'd drift off to outfield and chat with a friend). When I played football or rugby it didn't take much to be injured - I'd hurt a muscle or, more often, a joint. The teacher in charge just snarled at me to get up and get on with it or ignored it when I was flat on the ground in pain. Of course someone who is 'lazy' couldn't be genuinely injured. I still enjoyed playing, especially rugby as I was technically quite good as a prop forward. Had I known my later diagnosis contact sports would have been restricted but it was probably for the best as the alternative would have been running more, which seemed to make me worse.

When I was 16 I was in a car accident. I walked in front of a car when my mind was on my final exams. Until now I'll take the majority of the tort of blame however the driver should have been more aware that he was driving past a clearly marked school bus so also maintain he should share some of the blame as well. I broke my leg and fractured my skull. It took me about five YEARS to fully recover and even then I had a limp. I didn't bother going to physio or follow up appointments at hospital as I felt I could recover best my own way (I was 16). I tried to continue education but the severe pain and chronic insomnia messed up my first four attempts in consecutive years. The one way I found some normality was by going to football matches once the most severe headaches had subsided, even today I'm a huge supporter of Ipswich Town FC. 

Now I really don't want to go through my work history but by 21 I was able to work and got an offer in London and initially spent weekdays in London and the weekend in Ipswich. I would walk about 3-4 miles most days, I felt quite well. I still had a limp and got tired after a few days and learnt that if I walked a lot then I'd need to rest about one day in three. While I wasn't working I could pace myself, as soon as I was I'd been totally wrecked by Thursday and work as little as I could. Also if I had a busy weekend (or two non-working days if I worked the weekend) then I'd be shattered on the first day I went back. I was convinced that this was due to my fitness not being ideal and carrying too much weight (although my weight at 21 was low enough that it wasn't considered to be significantly medically relevant.

It continued like this until I was in my mid-20s. Then the sledgehammer hit. I found I was totally unable to walk more than two miles, I was totally shattered at work. Hills became mountains. Every year it got a little bit worse. 

By my 30s walking even one mile to work exhausted me, I wasn't working as I should and I felt really bad about myself. When I was 32 I had Malaria (obviously not caught in Ipswich but let's keep this on topic) [although it could have been Dengue Fever as the symptoms are similar] - I was unable to move at all. I didn't walk, going to the bathroom took an hour to plan (it was about 10 metres away), I was absolute agony. With the help of a street vendor I managed to get a small meal delivered to my home twice every day, I had no appetite for more. I never fully recovered. Since then (2007) walking any distance became a chore. Standing up for long periods made me exhausted. Sure, I got tired as a teenager and in my early 20s but this was something different. 

I presumed it was related to my illness and looked at options that have long term symptoms from a tropical disease and I couldn't find anything. Through 2008-2012 I worked/studied through intense pain, everything hurt almost all the time. I was a mess. 

Last year (2013) I decided to return to university rather than continue with this pain. I thought resting for a few months before starting would help me recover. I started at Aberystwyth in September. Within days I realised I was going to struggle with the Welsh hills but people told me that once you've walked them a few times the body will adapt, you'll get fitter and healthier. The opposite happened. I totally seized up, rather than enjoy my time as a student I locked myself in my room playing computer games and watching DVDs. I attended all the lectures, I went to the student bars, I had a few drinks, I collapsed into a taxi in pain. As it was a teacher training course it meant needing to go on a school placement. I lasted only six weeks before concluding that I can't do this any more the pain was too much and I put in a temporary withdrawal. 

Zebra?

 To quote from Wikipedia: 

Ockham's razor (also written as Occam's razor and in Latin lex parsimoniae) is a principle of parsimony, economy, or succinctness used in problem-solving devised by William of Ockham (c. 1287 - 1347). It states that among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better.

While a medical zebra is:

Zebra is the medical slang for arriving at an exotic medical diagnosis when a more commonplace explanation is more likely. It is shorthand for the aphorism coined in the late 1940s by Dr. Theodore Woodward, professor at the University of Maryland School of Medicine, who instructed his medical interns: "When you hear hoofbeats, think of horses not zebras". Since horses are common in Maryland while zebras are relatively rare, logically one could confidently guess that an animal making hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.

Ultimately a zebra is medical condition that is an exception to Ockham's razor. 

As someone who has been diagnosed with a rare medical condition that was misdiagnosed for almost 25 years by countless doctors I consider myself to be a 'zebra'. The 'limping' aspect should be self explanatory.