Autoimmune Disease – My Journey to a Diagnosis.

As this is my first blog post I thought I’d start with some background information about myself and how I eventually received a part diagnosis. I’ve been struggling with a variety of health issues for five or so years now. It all began with relatively mild stiffness and pain in my right hand, I then started experiencing pain in my right foot joint and things just escalated from there really; increasing stabbing pains in my fingers (so much so it was waking me up) muscle spasms in my legs, ribs and chest, severe fatigue, stomach issues….the list goes on. I originally got a hospital appointment with a rheumatologist who told me that at the minute there wasn’t anything that could be done as they weren’t sure what was causing it and that it may just disappear. Now at this point it was really only the pain in my hand and it was semi-bearable so I was relieved, and I genuinely thought it would just disappear. Unfortunately that wasn’t the case and things rapidly deteriorated over the next year. I was referred back to the same hospital, had another initial checkup and some blood tests, and then….nothing. I couldn’t get a follow up appointment for about six months and then I was getting several letters pushing appointments back further. By this point I was really struggling, so I asked my GP to be seen by another hospital and I was referred to Kingston hospital where they ruled out arthritis but couldn’t be sure if anything else was going on; my ANA test was consistently positive however the other tests they performed were showing as negative.

This was back in May this year and by this point I was struggling. I had managed to run Nuclear OCR but I had to cut down from the 12k to the 7km and my recovery time was disproportionate to the event. It was after Nuclear that I had to sit down and seriously think if I was doing the right thing for my body. If I was truly honest with myself I knew I shouldn’t have run, I’d been struggling with my chest for a while leading up to the event and I was feeling pretty pants nearly all the time. OCR and rolling around in the mud is a great love of mine and the thought of leaving it behind, even temporarily was not a happy one. However, I’m as stubborn as hell, I don’t like to beaten and I certainly don’t like to admit that I’m struggling, so the fact that I was even contemplating taking a break was proof enough that it needed to be done. In hindsight things had been going down hill exercise wise for around a year – I was struggling to run the distances I enjoyed and despite putting all the effort I could muster I just wasn’t seeing any results. So it was after Nuclear Rush that I made the difficult, although somewhat sensible decision to take a break from OCR. I think this summer was probably my lowest point so far, I was facing a new battle that I fortunately hadn’t really had to tackle before and that was my mental health. I started to suffer bouts of low mood and feeling very anxious, the constant pain and not seeming to get anywhere medically was extremely frustrating. After a particularly hard run of shifts at work and really struggling to walk the mile home from the tube station, I finally limped into the doctors and basically admitted that I wasn’t coping and I really needed help. I was started on a course of Amitriptyline and regular paracetamol, the doctor also advised I write to Guys Hospital, where I had now been referred on for a second opinion as like most autoimmune conditions my symptoms and test result weren’t easy to diagnose, to try and speed up an appointment. I was finally seen at Guys in September of this year and I have to say they were brilliant. Despite running over an hour late they were very patient with me and it was the first hospital where I felt they were really listening to my concerns, and at no point did he dismiss any of my symptoms. I was diagnosed with an Unspecified autoimmune condition, and told that I would be started on Hydroxichloroquine but I would need to go back to Kingston to receive the tablets.

I naively thought that receiving a diagnosis, even just a partial one, would offer some relief; it wasn’t all in my head, it wasn’t just normal tiredness and “getting old” as people kept telling me. I knew for years that something wasn’t right and I knew that more and more recently I was struggling with basic everyday things, like getting out of bed, going to work, walking the dogs etc. However, the relief I thought I’d feel wasn’t there. In fact I felt kinda weird, I guess there was a little part of me that hoped someone was going to turn around and say “Oh I know what this is, not to worry we can have this sorted in no time” Unfortunately that wasn’t to be the case. In my head I was changing, I wasn’t the person I used to be and I couldn’t do the things I wanted to, I had gone from someone who hated taking tablets to taking daily painkillers and supplements and now more daily medication was on the cards. More and more frequently I was hearing the words “you look tired” ” you should rest more” “what’s wrong, you don’t seem yourself” this really got to me because it meant my cloaking device was slipping, I didn’t want people to notice anything, I didn’t want to admit that I was struggling and the shift work was playing havoc on my fatigued body, I just wanted to carry on as normal. I was also not used to all this negativity swimming around my head. In short I wasn’t in a good place, but I don’t think I wanted to admit that to myself. Sometimes it takes someone close to you to point it out and let you know they’re keeping an eye on you, I’m very fortunate to have that person to keep an eye on me and point out when I may be veering off track.

Trying to get hold of my new meds was another rollercoaster of frustrations. For some unknown reason I had been discharged from Kingston, I couldn’t get hold of anyone to talk to at Guys about receiving the meds. Weeks of messages and being told someone would call me back was not helping my anxiety, so I decided to do some research and find out if there was anything that I could do to help improve my situation. That was when I came across the Autoimmune Protocol diet or AIP for short. At first glance the diet looks terrifying however, having read a lot about autoimmune issues starting in the gut I thought it would be worth a try. The AIP diet is extremely restrictive, no alcohol, no beans (including coffee :-0 ) no legumes, no nightshades, no gluten no this no that the list goes on. The word diet is also not one that sits happily within my vocabulary, of course diet refers simply to what we eat but the word holds so many negative connotations for me and I see so many people struggling with fad diets, losing weight and then piling it all back on. However, as this was for medical purposes and not a way to lose weight for me I thought it would be worth a go. My next blog post will have more about the AIP diet but what I will say is that I finally felt as though I was in control, starting AIP helped me feel that I was doing something for my body, helping myself, rather than just trying to push through with high impact exercising and becoming frustrated when I needed to rest. This marked a real turning point for me and, although it’s only been two weeks since I started AIP, I feel I’ve turned a real corner mentally. My focus has changed, I’ve started running again , albeit very slowly, And I’ve quit the gym in a bid to focus on more OCR based training and get back on course next year. I have also finally started on the Hydroxichloriquine and so far, after a week of daily tablets, have experienced no side effects.

I’ve learnt a lot from this process and no doubt I’m going to continue to learn and make mistakes. Also, in case it isn’t clear, if at any point it seems I’ve been negative towards our National Health Service throughout this post please know that that is not my intention. Autoimmune diseases are notoriously hard to diagnose, even now I still don’t have a clear diagnosis, but I am grateful for all the help I have received and for every medical professional who has seen me and not given up. When you’re in constant pain, and you know that something is not right, it can be extremely frustrating and upsetting, for yourself and for those around you. All I can say is, if you know there is something wrong then persevere, make sure you get the help you need. It may take some time and will most likely be very frustrating, but it will be worth it. In my next post I’ll be looking more at the AIP diet, what it involves how I get my carbs, and how exercise, yoga and dogs, keep me semi sane 🙂