Disclaimer – this post relates solely to my own diagnosis story and should not be taken as medical information. By telling my story, I hope it might help others in their diagnosis journey.
The type of medical professional who makes the initial diagnosis of fibromyalgia can vary depending on how symptoms present. In the UK, a GP would often refer patients to either neurologist or a rheumatologist for further investigation. There would typically be several appointments with the consultant before ongoing care is transitioned back to the patient’s GP.
For me, fibromyalgia began its official life as a very localised stabbing pain in my spine along with periodic numbness in my arms. In the first place, when the pain began, I was referred to a physiotherapist by my GP. I yelped as the physio performed a thorough spinal examination and hit upon the sore spot on my back. The physio felt that the location of the pain and associated numbness were suggestive of a herniated spinal disc.
The physio sent me back to the GP with a recommendation to refer me to a neurosurgeon to further investigate the issue. At the consultation with the neurosurgeon, my spine was examined again and I was the sent for an MRI scan on my back. The pain was still present when I returned to the neurosurgeon a couple of weeks later. But I was told that the scan was fine and showed no sign of any disc issues other than normal wear and tear. The consultant could see how painful the area of my spine was and and suggested referring me to a rheumatologist. It was then that the consultant first mentioned fibromyalgia as a potential diagnosis (at this point, I had never heard of the condition).
The next stop was the rheumatologist. At my first consultation, my symptoms were again assessed (the back pain and arm numbness hadn’t changed during this time). I then underwent the “tender points” test and yes, I did have pain pretty much all over my body albeit not as severe as the pain in my back. I had blood tests to check for vitamin D deficiency which came back all fine. I will also add here that I’ve suffered with sleep issues, anxiety and fatigue for almost as long as I can remember and as such, always believed that these things were just normal for me. It was only at this consultation that I realised that these too were part of the condition and suddenly the preceding years (and decades) made sense.
And so it was that I received my official diagnosis of fibromyalgia. The consultant wrote to my GP recommending a prescription for Duloxetine and sent me on my way with an information leaflet about the condition, published by Arthritis Research UK. I had a further review with the rheumatologist before being handed back over to my GP for ongoing care. I didn’t get on with Duloxetine at all due to the side effects and for most of the next year, I worked with my GP to find the combination of medication which suited me best.
In some ways, my diagnosis story seems different from that of many others in that I was never pushed from pillar to post seeing several medical professionals over a lengthy time period before receiving a diagnosis. I do know that this happens to a lot of people though. From my initial trip to the GP reporting back pain to being handed back over to my GP after diagnosis and a follow-up consultation would be around 5 months.