7 Years in "No Diagnosis Land," Part 1
Last updated: August 2021
Many people experience symptoms of AxSpA for quite some time before being diagnosed. Some are misdiagnosed, while others are dismissed as having simply back pain. Here is my story…
I started to have inflammation symptoms in 2007 with a tennis elbow which was very tedious to get rid of. I was still living in France at the time; I moved to the UK the following year. I recall it took me one year for that pain to go. For that I saw a doctor, I used the typical anti-inflammatory creams with no success. In the end, I went to a homeopath who did some injections along the nerve from my wrist up to the top of my neck. It did provide some relief, and obviously, I rested my arm (the right one, I am right-handed!) for a while. That meant no more badminton, sadly…
Then, Achilles inflammation
Then in 2010, I had an episode of inflammation of the Achilles tendon on the right side, with no reason or obvious injury. The pain was intense, and I struggled to walk. I did some physiotherapy for it and again used some anti-inflammatory creams. I bought an ankle support to help me walk. I think this is when I explored ice and heat on a swollen joint and realized that I was more responsive to heat to reduce the pain in my joints. Then I started to massage my ankle and tendon with tiger balm which I found effective for the pain and burning sensation. It also took a good year to recover from that episode and be back to normal walking.
Then, neck pain!
I was not left alone for too long though. In 2012 I started to have pain in my neck and shoulder, still on the right side of my body. I saw a physiotherapist for 6 months for that problem then I got discharged. The problem was not solved, so I went to see a chiropractor for three months and I saw not much improvement. I did some x-rays and MRI at the time which did not show much nor provided answers to my problem. I carried on with my life, doing neck stretches and buying good pillows to make sure not to stress my neck at night.
Finally, dactylitis, and some more tests
Finally, in 2013, I had a breakthrough as my symptom was peculiar: I had dactylitis in my right foot to start with, and then in my left foot too. Of course, at first, I did not know what it was! And the doctors thought it was maybe a skin reaction or infection. I had a good general practitioner (GP) who sent me to do some x-rays of those swollen toes. X-rays of my feet did not show any damage.
It was then I started to take anti-inflammatory drugs and the GP referred me to see a rheumatologist at my local hospital. I had of course great hopes, and fears, in that first appointment with a specialist. I did not know anything about rheumatic conditions at the time. While waiting for that appointment, I also went to see a podiatrist to get insoles for my feet, learn some exercises to do to ease my pain. It was somehow useful, but my symptoms did not go away. While flaring, every step I made felt like I was walking on fire. At that point, I thought that I would not last long in walking that way and enduring this pain.
Later that year, I saw that specialist who gave me the wrong diagnosis. Continued in part 2…
Do you notice worsening flares in colder weather?