The full blown history of my AS (and when I decided to take it on)

May 5, 2021 | Diary | 0 comments

Managed to get a little bit of sleep last night.

Not quite as good as the night before though. I felt some pain during the night and woke up several times.

Feels like I’ve got a decent amount of energy today. I’m hoping this new diet is changing things.

I feel down though, really down.

At the moment I don’t know what’s going on for sure. All I know it’s that I’ve had two tests that both flagged an immediate response saying I needed to contact them.

I know it could be nothing and I know it’s probably consistent with a diagnosis of ankylosing spondylitis.

Weirdly that would be a good scenario. It’s the thing I’m expecting and it’s the thing where I feel like there are some different changes to my life I can try.

It’s the not knowing that is tough and that is getting me down. What if it’s something more serious?

Reading up about ankylosing spondylitis has yielded some interesting facts.

Apparently it can cause problems and scarring to the lung and heart. That might explain some of the maladies I’ve had over the last year.

My heart was beating insanely fast at altitude on Kilimanjaro. Way way faster than anyone else’s and I wonder whether that was in part due to this condition, if I have it.

I also have had this awful cough for longer than I can remember but it’s been particularly bad in the last few months. This is also coincides with the recent upper back pain I’ve been having near the ribs.

If this is connected with ankylosing spondylitis and if changing my diet and taking a few precautions can alleviate some of this then I will have multiple life benefits.

I’m caught in this weird position at the moment. Feeling nervous about my results on Friday and also partly excited.

The big unknown is that whether changing my diet will make any impact at all.

Everything I’ve been reading and listening to suggest that humans now have a completely unnatural diet.

We’re eating all this processed food and complex carbohydrates and sucrose. Things we’re not adapted to digest in large quantities.

Even outside of this disorder I think it’s a good idea to make those changes.

Something that has occurred to me about diets and ankylosing spondylitis.

If I have got this thing and if I can improve my life by changing my diet then maybe I’ll make a website and an email newsletter.

It’s been confusing and overwhelming trying to navigate all this stuff and I think it could help others going through the same thing.

I’ve been trying to think of useful analogy for dietary changes and how these could help people with chronic pain.

Current studies tend to fall short of saying whether removing starch from your diet or this that and the other can have a real impact.

There are a number of reasons for this. There simply aren’t enough studies and the sample sizes are too small. Sometimes they’re not done the right conditions or the results are seen as inconclusive.

I think this absolutely makes sense and shouldn’t be seen as a negative.

You couldn’t have a large group of people in clinical conditions for 3 months or more and force feed them all exactly the same thing.

Or if you took another approach and left them to their own devices you couldn’t ensure they wouldn’t cheat.

It would be way too hard and costly to organise. Furthermore big pharma companies don’t really want to fund this kind of thing.

It’s not in their interests for the solution to be something as simple as changing your diet.

Big pharma’s ideal scenario (from a business perspective) is giving people pills or injections. It’s the subscription model. Far better than giving people a free fix which doesn’t involve them and actually works.

This way they have you locked in. You effectively end up paying them money until you die.

So in this way I’m able to suspend my disbelief when it comes to doctor’s claims that diets are ‘inconclusive’.

If the theory is sound and if genuinely smart people are responding well to treatment by diet then I think it’s got to be at least worth trying.

We blindly accept so much about the food we eat today.

We accept that you can’t feed cows meat because that would make them sick.

We accept that you can’t feed lions vegetables because that would make them sick.

Cows have evolved 4 stomach to enable them to digest grass. Lions have evolved to digest protein and meat.

Humans were hunter-gatherers and evolved to eat a combination of meat and fruits and vegetables. What we haven’t evolved as far as we know is to digest complex carbohydrates or a high intakes of sugars.

That’s the way I think about the whole starch and sucrose thing.

Sugar was supposed to be this thing that you found very rarely in the wild. If you were lucky you might find a bee’s nest in a tree. This would give you a massive massive calorific intake. In fact it’s so valuable it gives you a big buzz and dopamine hit.

But we have engineered, using technology, a way of accessing this rare commodity on tap, all of the time as much as we want.

This thing that was once a rarity is now ubiquitous. Most of us are consuming 10 times a day a thing we would normally only consume once a week or month in the wild.

Starch and complex carbohydrates aren’t well suited to our bodies either. They require some strange digestive gymnastics and require different bacteria to help process it. The whole system can go out whack and cause a lot of problems.

To me this seems logical rather than wacky.

I thought it might make sense here to list out some of the symptoms I’ve had over my life and specifically over the last few months with whatever I have, whether it’s ankylosing spondylitis or something else.

When I was maybe 14 or 15 after having been a very sporty and active I noticed when playing rugby that I found it harder to recover from falls and contact.

I felt more brittle somehow and the deep ache of recovery seem to last longer than normal. In the past I could be bashed about and bruised and bloody, I would bounce back almost immediately afterwards. This suddenly stopped happening.

In retrospect it feels like my body got slower to recover and almost overreacted to any form of impact.

Thinking back further to when I was younger, maybe between 8 and 10, I remember having problems with coughing and breathing at times. I developed an irritating cough and a kind of breathlessness where I didn’t always feel I could fill my lungs.

Mum took me to the doctor but all they did was prescribe me with a placebo. This didn’t help but whatever it is did go away eventually anyway.

This is something I’ve had periodically throughout my life. I remember it in my mid 20s when I kept having trouble taking a full breath and it was accompanied with pain.

The pain felt like it was in the lungs or behind the ribs and it hurt when breathing. I went to get X-rays at that time but they didn’t spot anything unusual. They just said it looked like maybe I had an infection and was I recovering from a cold.

But the thing that’s been consistent from the age of about 20 has been the lower back pain. It comes in waves and bouts.

Some times I would have periods of no pain whereas other times I would struggle to walk. It wouldn’t really be much relieved by physio or osteo.

The only real time I saw a decent effect from physio with when I saw saw Anna at the physio in Covent Garden. She did more massage than clicking and treated it more like a muscular thing rather than just prodding for 20 minutes and using machines.

Maybe that tells me I should have a more regular massages as part of my day-to-day life if I am diagnosed with it.

I remember one point when I was living in Brick Lane and must have been 25 or 26 when I had such a severe pain after I left the house I was stuck on the street.

I couldn’t move for about 10 minutes. It was absolutely excruciating and it was the sharpest pain imaginable, like being caught in a constant muscle spasm. Searing and total and unbearable.

It has always come in waves. There are periods where I don’t seem to have much of it at all and I can almost forget I have it. That was mainly when I was younger. Back then it was probably appearing a minimum of 6 or 7 times a year.

In each of those cases it would last anywhere from a few days to a few weeks. I would try things like sleeping with my legs above a pillow when I went to bed. This would help a little bit but it was still uncomfortable.

Ibuprofen has always helped with it. In particular one physio I saw recommended that I take 3 ibuprofen, 3 times a day and to keep that going for a few days. This would always help and work well but I don’t like taking too much medication and I’d always feel grumpy afterwards as it seemed to affect my mood.

When I hit my early to mid 30s it shifted a gear.

I feel like I’m a lot more aware of it, constantly aware of it in fact.

I almost feel like I’ve adapted my whole life for it. The way I move, the way I sit and the way I sleep to accommodate it.

Within the last 6 or 7 years I started having to adopt a strict no backless chair policy. I just won’t sit on pub stools with no back on them and try to avoid bench tables.

I just know that if I sit on the chair with no back on it there’s a huge likelihood that I’ll get terrible pain which could last days or weeks afterwards.

I remember having this every time I went to see my friends in Wimbledon. They had these beautiful chairs but they for some reason were a nightmare for my back. Just sitting on them for half an hour words trigger the pain.

So this has become a constant fixture in my life to the point where I’m trying everything.

I have a really good chair at work and I’ve used different things for when I work at home. There is this little wedge-shaped back support which you can put at the back of a normal chair that is useless and I gave that up years ago.

Back when I was doing Pilates about 10 years ago I tried for a periods sitting on a ball at desk because I thought this might promote better posture. I feel like this helped a little bit temporarily but it was two impractical and I found myself slouching once I got used to the ball.

When we moved house I bought a decent office chair from Ryman’s. It’s fine but not quite as good as the one I have at work. I think maybe I need to change this.

Over the last 5 years my back has been even more difficult.

It feels like it’s become consumed with stiffness almost like it’s one brick like unit.

I read recently somewhere that people with AS can get something called rod back which sounds like exactly what I’ve got. I really hope that’s not it because a load of stuff is fused together. That’s my biggest fear.

Things were getting bad for a time when I was getting transport to and from work and not really moving much during the day. Then when I switched over to walking to 30 minutes to a different station this definitely improved things a great deal.

I’ve been doing that for a good few years and I found that if I got a decent amount of walking done each day that would really help my back.

The latest episode is the thing that is caused me to get serious about getting a diagnosis. I really really need to look and figure out whether is ankylosing spondylitis and what to do next.

Since lockdown I’d actually been having a really good time with the pain. By really good I don’t mean that I felt like I could run and jump or do stuff like that.

I just had fewer and fewer really painful episodes where I couldn’t do anything. By and large walking has been fine for most of the time and as long as I make sure I’m careful about how I sit it hasn’t been too bad.

One thing that has been sporadic is my sleeping and this seems like something that has progressively been more difficult over the last 10 years. I would say the last 3 years in particular.

I used to sleep for ages but from my late 20’s I just seemed to lose that magic. I could no longer sleep through. It wasn’t terrible and I just thought maybe it was an ageing thing.

Then living here in our current house I’ve had long periods where I was getting cramp in the night and constantly waking up. That was worrying but I didn’t really connect it with this.

But more recently, and certainly over the last 6-months, I would say I’ve been waking up multiple times during the night.

In the last month or two it’s been so bad that I can’t remember the last time I had a proper sleep. Last weekend for example I think I had two or three completely sleepless nights.

It’s hard to describe the sensation but it feels like the ankylosing spondylitis, or whatever it is, is just waking me up in the night.

It’s not a searing pain, it’s a severe ache and irritating pain.

I try to sleep on my back but just can’t do it… so move on to one side but then that side will be in pain… so I have to switch to the other side. This goes on all night.

All of this came to a head about a month ago the night before I was due to go see friends.

The AS was getting really bad and I was desperate to have a fun time with everyone to take my mind off it.

To try and safeguard against it ruining the get together I went to get some acupuncture a couple of days before. It went pretty well and I walked home feeling like I had less pain.

But that night I woke up in the middle of the night at about 3 am with the worst pain I’ve ever had.

It was painful in bed so I thought I needed to get up and somehow walk it off but when I got up I found that I couldn’t move I was completely pin to the ground on one leg.

It was the most searing pain I’ve ever had. I’ve already written about this in the diary so I won’t repeat it here but basically from that episode on I’ve been either on painkillers consistently or I have slept very badly or not at all. I feel that permanent stiffness and blockyness in my back too.

This is the point where I just felt I couldn’t live with this anymore. I had remembered what my physio had said a while ago.

He mentioned that ankylosing spondylitis might match the symptoms I had.

I did a lot of googling online and found out the name (because I couldn’t remember it at the time) and then looked all the symptoms.

It was like reading my autobiography. It was ridiculous because there were other symptoms that I’ve suffered with which also matched.

For example the pain when breathing and the difficulty inhaling all the way. The upper back pain behind my ribs and lungs.

I remember when I was standing by my bed in the worst pain of my life. I almost would have picked death over experiencing another second of it. It was that bad.

To then have to follow it up with a constant stream of pain killers and no sleep I decided enough is enough.

That led me to sort out all these bookings with doctors.

Some other things I want to mention.

My ankles now click when I go up the stairs to our bedroom.

At the moment both of them click with every single step and have done for the last month. Previously, for the last 2 years, it might just be couple of clicks for the whole flight of stairs.

I also find it hard (and anxiety making) walking around corners or make having to make any sharp turns.

I feel like I’ve had this particular anxiety for maybe the last 10 years. I always used to have it in the past when I was having a flare up but now it’s part of everyday life.

Sudden movements or having to do sharp turns makes me anxious because it can hurt or jolt something.

I also can’t remember the last time I’ve run properly.

The last time I did any kind of proper running was when I used to go to the gym in my 20s. Even then it felt like a little bit of a leap of faith but once I got into it it was kind of ok. Even then it became a big no-no whenever I had a flare, so I didn’t do it every time.

Since then I might have run for the bus every now and again but honestly I feel like I could count those times on my hands.

It just feels like something which would be impossible.

It’s such a weird thing.

I feel like I’m in my comfort zone when I’m walking and I’m not having a flare up. I sometimes feel comfortable when I’m sat in my chair in the living room but really outside of that I’m always in a kind of state of high alert and anxiety over my back and keeping it a certain way.

Having it progress up to my upper body was a real game changer for me this time.

It made me feel nervous and ties in with this idea that ankylosing spondylitis can have an impact on your heart and lung function. That it can possibly scar your lungs and maybe this has caused all the coughing.

Anyway I’ll add any more bits from my past in my AS notes history as I remember them.

It’s weird looking back in retrospect when I feel like I’m on the cusp of knowing something more about what’s wrong with me.

It seems ludicrous that I haven’t looked into this more before.

Thinking about it now it’s definitely not normal that you would feel anxious about running, or turning corners, or that you would wake up every morning expecting there could be a pain on one side of your pelvis.

That’s the other thing, waking up every morning feels like a lottery as to what’s going to be hurting.

Sometimes there will have a pain on one side but then you get up and walk a few steps, or you get in the shower and it turns out it’s not that bad and it dissipates.

Throughout my life, starting from secondary school, I’ve been prone to falling asleep a lot. I always thought that it was narcolepsy.

Having lockdown has been a bit of a godsend because it’s meant I can nap at anytime really, as long as I get my work done.

I would say that the need to grab snatches of sleep has increased significantly over the last 4 months. This is in line with some of the other side effects I’ve been experiencing.

I’ve been feeling more tired and more fatigued all of the time and feeling like I want to go to bed really early.

I’ve always been a night owl but now I’m often finding myself going to bed at 11pm, something I never would have done years ago.

I’m wondering whether this could be tied in with how my diet changed fairly recently.

Kat and I like different food on the whole and I’ve been having far more carb based meals and carb based snacks.

I’ve already gone through this in the diary but I was having croissant for breakfast every day, pizza for lunch and then potatoes and maybe some meat and a small amount of veg for dinner.

I was basically having carbs all the time and crisps in between as well as these giant cookies twice a day. If there is a causal link between AS and starch then this would be a smoking gun.

I’m on day 3 of the no starch diet

I have noticed some changes.

I feel like when I woke up this morning it was no better or worse than yesterday but I did at least get some sleep last night.

I was hoping I would feel really good, like I was having a clear day, when I woke up but it wasn’t like that.

It was more that I had a lot of stiffness going on pelvis area and that rod-like bit up my back.

The upper back lung pain has dissipated a lot but it hasn’t completely gone away and I can still feel it.

I went for long walk today around Hackney Wick and Victoria Park. The walk wasn’t problematic but I did feel very heavy.

That feeling like someone’s poured concrete into you. By the end I wanted to be home and sitting down.

As the day progressed and after I had my lunch I felt quite tired so I went for a lie down.

I think I only did that for about 25 minutes but afterwards I felt ravenously hungry, full of energy and also a little bit light-headed.

I was so ravenously hungry that I ended up going out into the rain to the Italian deli. I ordered some pecorino cheese and salami and a jar of olives because I just wanted something to snack on.

They were the only things I could think of that didn’t have starch in them.

As I was walking home I noticed that I felt lighter on my feet and like I had some energy and maybe less of that cement feeling going on.

There is still a pain in my pelvis ans hip area on the right hand side. That doesn’t seem to be shifting at the moment but but I felt for a moment that I wouldn’t mind running.

The idea of running just doesn’t occur to me anymore but now for the first time I just felt a bit lighter on my feet and like I could do it if I wanted to.

I jogged across the road, tested it out and I was fine, but it was still a bit painful in my side so I stopped.

Anyway I think this is a really good sign.

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