What It’s Like To Be Stuck In The Middle With No Diagnosis

This post has taken me a long time to write. I’ve previously written about my struggles with mental health, and with my journey through life with chronic pain, and in my head this feels like it should be an extension of it. This post was started in April and has been living in my drafts ever since – down to things changing, trying to do more research, trying to wait until I had an answer. And so, here I am, in mid July, feeling like we’ve not really moved on that much, living with life with no diagnosis to show for it. 

Back in March, I fell in the snow. I slipped and caught myself, thinking I had saved myself from much damage. I was home alone, with Eliott stuck out in his Gran’s house in Kinsale, Dillen was travelling with work and work had declared we were closed for safety reasons. I was super grateful of that, because my drive home from work the night the snow started proper was definitely one of the most terrifying things I had ever done. The cold was affecting my back pain in a huge way. I was walking around wearing heat packs and holding hot water bottles to parts I couldn’t stick heat pads to. Oh, the glamour. And then I slipped and thought I’d saved myself, but jolted my back and caused a whole heap more pain to pile onto my lower left side.

March went on. The snow melted, Dillen came back from his trip and I got Eliott back home with me. I went to my doctor and my physio, both of whom gave me their standard eye roll “Christ what did you do to yourself now?”. More painkillers. More heat. And so started my getting signed off work, because that’s what happens when you can’t manage a few hours without crying because you’re in pain. And then I got the fucking flu. At least, that’s what it was diagnosed as – I was in agony all over my body, exhausted, sobbing in pain. I have a vivid memory of being behind the wheel of my (parked) car, it was pissing rain outside, we’d gone to view front doors for the house we just bought and my back seized, taking my hips with it. It felt like my entire body was being crushed. And we had no way home except for me driving, so I got out of the car (thankfully we were next to a filling station), got a drink, took some painkillers and when I had gotten my shit together, drove home, still crying in pain, with Dillen looking freaked out. It was HORRIBLE. I got home and stood in the shower, letting the extra hot water run down my body and waited for it to do something. Dillen prepared hot water bottles and tea and biscuits and the iPad in bed for me, took Eliott away and was an absolute hero. Eliott’s birthday was that week, we had a party in a soft play area and I phoned it in, my anxiety and pain levels soaring. March was truly unpleasant. My doctor advised me that it was likely the flu continuing the pain and that it could go on for a few weeks, but given that I had chronic pain for the last few years and that I was mentioning pain to the touch of areas not mentioned before that she would like me to see a rheumatologist with regard to a diagnosis of fibromyalgia, and that this was potentially a flare-up.

No Diagnosis makes me frustrated

And so started a whole other train to diagnosis. I’m lucky enough to have health insurance and to be able to go to consultants privately, which meant I was able to be seen in a few weeks. There were more blood tests, the only thing that came back was a vitamin D deficiency.

I got to see the rheumatologist in late April. I was expecting him to agree with my GP’s diagnosis of fibromyalgia, having googled it myself, but he seemed very sure that wasn’t the case. He seemed very sure that I had something called Ankylosing Spondylitis. It took me four days to learn how to pronounce it. And it made so much sense.

I spent three weeks hoping that I have an incurable form of arthritis which can lead to a hunchback, breathing difficulties and a lower mortality age. I spent those weeks looking up stories of people who had it, their symptoms exactly matching mine, and hearing about the medication that didn’t cure them but made their life able to be lived to the full again. This medication wasn’t to be sniffed at, it’s an immunosuppressive drug meaning I would be much more likely to catch infections and there was a chance of developing a further immune disorder from it. And injecting myself is not something I put on a fun things to try list. I get blood taken quite a bit these days and I still look away from the needle going in.

The test for this form of arthritis is in a blood test and an MRI of my sacroiliac joints. I had both done, as well as a chest X-ray to make sure no pesky TB was hiding in my lungs. The results came back in mid May. Despite the odds, the identical symptoms, I am negative for a diagnosis of Ankylosing Spondylitis. This puts me back to square one, back to no diagnosis, back to unexplained pain, all the time, debilitating and life changing. There is a possibility that this is all down to trauma from the accident which is NEVER going to show up on any scan. I think I was happier with the lifelong arthritis because that had a management plan. Right now we’re throwing stuff at a wall until it sticks and praying it works. Including the immunosuppressive drugs. Because why not give it a try anyway? I think I would feel a lot better about this if the rheumatologist seemed more sure of a fix but of course he can’t because the fucking mystery pain doesn’t have a magical definite answer. That would be too easy.

I started this immunosuppressive drug, Humira, in late June, despite it being decided in mid May that I would be starting it. The reason for the delay was that as well as the MRI and the other bloods that I had done to prove there was nothing wrong with me, I still needed EVEN MORE blood tests to prove that I had no latent infections, including TB, hanging out in my body. And me being me, it took a while to get those blood tests done because the nurse couldn’t find a vein. I have crappy veins that like to do vanishing acts, I always have done. When you’re signed up to a drug like Humira, the care is done from a home-nurse team attached to the drug company instead of through your own doctor. That meant it wasn’t my regular nurse or GP who are used to my invisible veins taking the blood, and so, shockingly to everyone but me, there were no bloods able to be taken. We wound up having to wait another week and got my consultant to take them, delaying everything. Thankfully, there is definitely no TB in my system (Yay for the effective Irish vaccination system?) and eventually I was able to start the medication.

I’ve so far had two doses of Humira. It’s an injectible pen in the format I take it, which sounds really unpleasant but I haven’t felt any pain from it either time. It’s got a list of side effects that are TERRIFYING but the positive effects of it may just manage to give me my life back. I have to try this. We might well be throwing everything at it and seeing what sticks, but at 26 I cannot live like this anymore. My mental health, my relationships, my general functioning life have all deteriorated over the last few years. Dangling a carrot of a life where I don’t need to take painkillers and brain chemistry altering medications multiple times a day is better than no carrot at all, but it’s frustrating to not have a definite answer. I’ve been researching and reading medical journals and have some more ideas to put to my doctor next time but right now, it’s just a waiting game.

I feel like I’ve been rambling on a bit with this post, it’s hard to put into coherent words and the brain fog I’ve been having doesn’t help much. I’ve been told to expect the medication to not work for up to 12 weeks, and after that we’ll review. I’m hopeful to move on from having no diagnosis – because if I don’t have that hope, then what’s the point?

I’m sure I’ll be back to update on progress with Humira, whether it has worked or not worked and potentially other information on what it’s like to take it if anyone is interested in those kind of posts – let me know down in the comments, or over on Facebook or Twitter! I’m also semi-regularly documenting life on my Instagram stories these days so come over and say hi.