My path to a diagnosis was a long one.
I seem to have had a few people in my life at the moment develop back issues. In all, or at least almost all cases they seem to have gone to their doctor, been sent for an MRI, been diagnosed and sent for treatment. That’s brilliant, exactly how the NHS should be.
That’s not how it’s been for me. Sorry to bore those who’ve heard this before, but 10 years ago I started to get a strange pain in the joint between my neck and spine (that one that’s a little bump.) It began to crack, and feel really stiff. The pain spread into my shoulders and upper back. It then went into my lower back – badly. I began to not be able to stand as long as I used to, or sit comfortably. I fidgeted constantly, and my joints all began to loudly crack all the time. I didn’t know what the hell was wrong with me. The first rheumatologist I saw said I’d grow out of it. The second said it wasn’t arthritis, but didn’t know what it was. The next said I had bad posture – ignoring the fact I was hunched over due to the pain.
In the years between 2002 and 2008, that pain spread into every joint, every muscle. The fatigue was getting worse. I could only walk for short periods of time. I saw rheumatologist after rheumatologist, and two different pain consultants. Each time I raised the possibility of an MRI, but it was dismissed.
I finally saw a third Pain consultant in 2008. He was an asshole. It was the first time I left a consultants room in tears. He told me there was nothing wrong with me, and he said he would prove it by sending me for an MRI.
I was pissed off, but also pleased. At least his bad attitude was getting me an MRI. When I returned I saw yet another pain consultant who told me the MRI “showed nothing.” I was very disappointed. It’s very hard to be in constant pain and have no idea why. You hope it does show something – because at least you know, and then you can look at possible treatment options.
I continued to see the spinal specialist physiotherapist at the hospital who was able to print a copy of the MRI off for me. The same physiotherapist who said, “You are hypermobile as hell. I can tell just by looking at you.” She didn’t help me physically, but she tried – and helped point me in the right direction of my final diagnosis.
Unfortunately, despite having a copy of the MRI, I didn’t understand a word of it. A few months later I sat, although I can’t say why it took me that long, I sat googled every single word of the MRI that ‘showed nothing’ and was surprised to find various disc bulges in my lower back and neck, quite bad facet disc degeneration and arthritis in my lower back. So there was something. It might not have been the worst MRI he’d seen, or not operable – but I believe I should have been told what it did say.
From 2008 my mobility continued to go downhill, first causing me to walk with a stick, and later needing a wheelchair more and more often. My lower back continued to decline; at best feeling like someone was gripping into it, crushing and aching. At it’s worse? Well, there aren’t really words. I was desperate to find out what was happening, but it took another four years to get that update.
Most suffers of a chronic illness will tell you how difficult it is to get a diagnosis. The first difficulty is often the doctors, who simply may not know. So many conditions have overlapping symptoms and tests don’t always get to the root cause quickly. Often it takes a doctor that will look at the whole picture, not just run a blood test here and there. I recently heard of a woman whose local doctors wanted to take her thyroid out, believing it to be the cause of her issues. It took a consultant in London who finally ran the correct scans to find out the problem was with her heart, and could be corrected with medication – scans that could have easily been done previously.
Other doctors may be unwilling to commit to a name of condition – perhaps through fear of being incorrect, or other reasons. Some think giving a name of a condition is branding the patient with a ‘label’.
When you’re so unwell it’s impacting your life, the vast majority of people want to know why. They want a to find out what’s wrong with them so they can research their own condition, or join a support group, or simply so when people ask what is wrong with them, they don’t have to shrug and say ‘your guess is as good as mine’.
Woolly symptoms like ‘pain’, ‘fatigue’ (and I’m sure you can name a million of your own) are hard to explain to people, when you’ve cancelling a night out for the fourth time in a row, or taking more sick time from work, or even applying for benefits. Everyone has those symptoms at times, and it’s hard to understand what it’s like when they become an every day occurrence, or never go away. Or when the pain or fatigue become so crushing you can’t function.
Another problem with chronic illnesses is making sure you’ve got the right diagnosis. Due to the aforementioned intersecting symptoms, it can be hard to pin down exactly what’s wrong with you.
For example constant pain, fatigue and cognitive impairment could be down to a virus, or ME, Multiple Sclerosis, Sleep Apnoea, Hypothyroidism, Lyme Disease, Lupus, Fibromyalgia, Depression, the Flu, or something else entirely!
In an ideal world a doctor would come up with a list of everything it could be and then rule each one out with tests. But it isn’t an ideal world, and doctors are often constrained by time, budgets or equipment. Their personal prejudices may come into play. If someone who is slim presented those symptoms, they may take an entirely different approach to someone who is overweight. Many of my grandads’ ailments have been dismissed with ‘it’s your age, it happens to everyone’ and similarly doctors point at my weight as the problem – rather than seeing someone who has put on weight from being unable to exercise and comfort eating due to pain.
If perhaps I’d been listening to when I was ten years old and complained my limbs hurt, and my knees and ankles kept giving way, they would have discovered I was hypermobile, and given me the correct treatment to strengthen my joints. Then it may have been I wouldn’t have developed chronic pain and Fibromyalgia. Or perhaps I was destined for Fibromyalgia no matter how many stretches I had done as a child. I don’t know.
It took me until the age of 23 until I finally saw a Consultant Rheumatologist who spent time thoroughly looking at my history and symptoms to diagnose me with Ehlers-Danlos Syndrome, Fibromyalgia, Myofascial Pain and Postural Orthostatic Tachycardia Syndrome.
I have seen so many other consultants who were dismissive, or shrugged their shoulders. One doctor even said I was Hypermobile, and then a year later forgot he had done so and declared I was fine without reading my history.
Finally, I’d like to point out that many people in England do not realise that they have the right to be seen at any NHS hospital in the country. You do not have to go to the nearest, or the one your GP decides to send you to. If you hear of department in a specific hospital that seems to do a better job than your own – you can choose to go there. You cannot demand you see a specific doctor, however, but you may request to do so. I’ve often found I can see the doctor I’d like by simply waiting longer.
Please keep fighting for your diagnosis if you think something is wrong. Don’t give up.