With the discovery that I have spondyloarthritis, and that I have had it since childhood, the fibromyalgia was pushed to being a symptom and not a cause.
The pain that most doctors thought was caused directly by fibromyalgia, almost completely disappeared with the cortisone treatment suppressing the spondyloarthritis.
This clearly shows that the fibromyalgia in my body is secondary.
Fibromyalgia is not the cause of my pain.
Fibromyalgia can be a symptom of another problem
My fibromyalgia is a reaction to the constant pain caused by inflammation.
The two underlying conditions causing me to have immense amounts of pain and inflammation – endometriosis and spondyloarthritis – overloaded my body’s pain response system, and allowed it to develop fibromyalgia.
The endometriosis pain is mostly controlled these days by Visanne, after the hysterectomy to removed the most painful part – the adenomyoma.
At the moment, the inflammation in and around my spine and other joints is being suppressed well by prednisolone. The bowel is still a bit of a problem area.
With the two pain sources mostly under control, the muscle pain and some of the exhaustion and fatigue of fibro has gradually slipped away.
Treat the cause not the symptom
I was diagnosed with fibromyalgia nearly 20 years ago, after a barrage of tests provided no definite results.
The doctors believed that I had all over pain, but couldn’t find any cause. So they pushed me under the catch-all diagnosis of fibromyalgia.
But I had a persistent odd result – there was always generalised inflammation in my blood tests.
It was chalked up to be how my body manifested fibromyalgia.
The inflammation itself was never treated. Only the resulting symptom of pain was treated.
Of course, the ‘treatments’ didn’t work very well. They were only for reducing pain.
Had the inflammation been treated, the chronic pain response of fibromyalgia would have been significantly reduced, albeit not necessarily eliminated because of the pain from endometriosis/adenomyosis.
Studies in recent years have shown that fibro doesn’t cause inflammation, instead it’s a brain chemistry imbalance that lets the pain reaction response spiral out of control – central sensitisation.
With the right treatment, what could have been?
If the real cause, the spondyloarthritis, had been treated when it appeared first before I was a teenager, I could have been on an appropriate medication to suppress the inflammation, and stop the subsequent pain decades ago.
I could have continued playing musical instruments and tennis, but instead the costochondritis (a spondyloarthritis symptom) forced me to stop.
I could have had a much easier time at school, university and in the workplace, and not missed so many days to being in crippling pain.
I wouldn’t have had the extreme flare of symptoms which cut short my time teaching in Japan.
It wouldn’t have disabled me to the point of being unable to work in recent years.
But there’s really not much point looking back at what could have been, is there.
I must rebuild my health from this point forward.
My plea to doctors
Don’t ignore a patient’s pain. “It’s just in your head” is not an appropriate first response.
Follow up on odd results that don’t fit the common illness patterns, especially in catch-all diagnoses. Keep chasing new leads.
If you feel out of your depth, reach out to colleagues and specialists. Do refer patients to those who you feel are better able to pin-point the cause of the odd symptoms.
Specialists and test result writers – please write detailed letters to all involved doctors. If there’s a medical information portal, encourage the patients to allow its use – central and accessible patient information makes diagnoses and discussions much easier. Write the findings in plain English too, not just the highly specific medical jargon, to help the patient understand their own illnesses.
Don’t be so quick to put physical symptoms like generalised inflammation, high fevers, persistent headaches, or urticaria under ‘depression’, ‘fibromyalgia’, or some other ill-fitting basket diagnosis.
Encourage patients to ask questions and give suggestions – let them take an active role in the investigation process and don’t shout down their suggestions out of hand. Researchers find new things out about illnesses every day.
Do encourage patients to keep a symptom diary, noting possible triggers and patterns. Also encourage patients to track how they respond to medications, what medication helps with what symptom.