7 Years in "No Diagnosis Land," Part 1

By Julie Vallortigara

3 min read

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…

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Tennis elbow

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…

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Steve Tuffin Moderator
Hi <inline-mention username="Julie Vallortigara" user-id="2107984"/> I saw too, the campaign for AS sufferers in the UK. Unfortunately, I was a bit late for all that. We - my wife and I - think I went anywhere between 10-15 years before diagnosis. I think it's a great thing though, at last, that AS is getting out there and making others more aware of it. Like you I had tennis elbow near the start of my ills. I also hade housemaid's knee. I was a carpenter back then so swinging a hammer was problematic and climbing, kneeling, and bending - which carpenters do a lot of - was very painful. I had a cortisone injection in my elbow (which wasn't as funny as it should have been given the doctor shoved the needle in right where my funny bone lives). But the injection didn't last long. I can't really remember how long it was after that, that I got my diagnosis. But long enough. But here I am now, and things are much better these days. I hope you are keeping well too. Go steady. Steve - Community Advocate 
1. Julie Vallortigara Moderator & Contributor
 Hi <inline-mention username="Steve Tuffin" user-id="4190445"/> , Thank for your message. I can imagine that doing your job was challenging with AS. When I do some manual work at home, I can feel pain quite quickly. That tennis elbow is tricky in particular, whatever I do, either work at the computer or some chores it can of wake the pain these days. I never had steroid injection in my elbow. I only had in my hips, it does provide some relief but only for a few weeks...so long term care and therapy is needed on these joints. Anyway, it's great you are feeling better now. I have to say that I feel fine now with a good treatment and my self care routine. Take care, Julie
Jvernice Member
I can relate to your frustration. I was undiagnosed/misdiagnosed for more than 15 years. Even undergoing several spine surgeries to fuse my spine, the “expert” spine surgeons got it wrong. I was radiographic positive for more than 10 of those years. My entire spine was self-fusing right under their noses and nobody saw this until I moved from New York to, believe it or not, West Virginia. A spine doctor in WVU ran X-rays, CT scans, and MRIs. He referred me to a rheumatologist that confirmed the diagnosis. I’m now on Humira, which helps a little, but my disease is so advanced, I will never see more than marginal relief. Years and years of pain and disease progression could have been quenched if I was given a more timely diagnosis. 
1. Rebecca C Moderator & Contributor
 @Jvernice ... Oh, can I relate. I, too, have had several surgeries on my spine (and other joint replacements), and should I have received a diagnosis much earlier, I truly believe I wouldn't be as advanced with inflammatory arthritic damage as I am now. The biologics marginally manage my disease, so the pain is difficult to control most of the time. I hope that you can find some relief from this disease. Warmly, Rebecca (Community Advocate) 
2. Julie Vallortigara Moderator & Contributor
 <inline-mention username="Jvernice" user-id="4232099"/> I am sorry that you had to wait for so long to get a diagnosis. Here is the UK we have a whole campaign going on to raise awareness about AxSpa and reduce the time to diagnosis. The average time here is 8.5 years, and with my seven years I am under that but still it feels like a very long time! I have been on humira as well, for 6 years now, and it does make a big difference for me I have to say. There are other ways to manage the conditions on top of the biologics. I hope you will find what works for you. Take care, Julie.