Fibromyalgia and Tinnitus

Sometimes I am still surprised when yet another symptom turns out to be linked to Fibromyalgia. Back in March (2024) I had about three sinus/ear infections in a row, resulting in three sets of antibiotics. My occasional periods of Tinnitus also ramped up to more or less continuous.

Once the third bout kicked in the GP decided to refer me to a specialist, and this is what I have been waiting for. On Sunday (I know, a Sunday) I finally had my referral appointment and headed off to the hospital. Not the closest one but not too far away.

I think there was a mix up at the reception desk as I was called in half an hour late and a chap who arrived a while after me went in before me. However, we were not in a hurry to get anywhere and we know administratively the NHS is on its knees. I’m not going to complain though as I will take the NHS with problems like this over some alternatives.

When I saw the doctor I went through my list of what had been going on since my referral. Including talking about the Fibromyalgia and Tinnitus possible relationship. He had a quick look in my ears, nose and back of my mouth. Then typed at his computer for a while before turning around for a chat.

I was sat waiting to either hear there was a problem of some sort, or there wasn’t. What he said really surprised me. He opened with, “The good news is there isn’t something to treat. Fibromyalgia is your superpower and the nemesis of ENT.” Then he went on to explain that my system is firing off and receiving messages that I have various problems that physiologically are not a problem. Hence the sensation of sinus or earache when there is no problem there. He basically said I need someone to come up with a cure for Fibromyalgia, with a sympathetic smile which basically said it won’t happen anytime soon.

Thoughts about the verdict

This conversation, even though it was only short, and could almost have felt like a wasted trip. Brought up a few thoughts.

Fibromyalgia knowledge is growing

When I was first diagnosed, I had only heard Fibromyalgia being mentioned once as a friend’s Dad has it. I didn’t really know much about it other than the fact he had it, and when he came to a wedding he had to bring a cushion to sit on.

Regarding myself the name came up when I did the typical thing of searching my symptoms. After looking at some medical websites I stumbled across the Fibro community. Here. I could ask some questions, seeing if my story sounded familiar or not, trying to see if I could rule it out. Sadly my situation resonated with others experience.

I took the suggestion to my GP who hadn’t heard of the condition, but after having a brief look she said it is certainly a possibility. Then she did something I love her for. She went away and did her research and from then on was the best Doctor I could have had to guide me through the process of ruling out other possibilities and coming to the diagnosis.

I had hiccups along the way, you can check out my Diagnosis journey, but they were not down to my doctor. Hearing other people’s stories there are those who wait up to a decade to get a diagnosis. This is shocking. Thankfully I had my diagnosis six months after my symptoms began to arrive in clusters.

Along the way I have seen various medical people (including nurses and healthcare assistants) who have never heard of Fibro, but slowly I am finding more who have. So to see a doctor who not only has heard of it but understand how it effects his department was a big deal.

The Good News is…

This is not the first time, and the first symptom that it has been framed that it is a good thing there isn’t something that needs treatment. To some degree I understand this, no body likes going through unpleasant treatment plans or even surgery. On the other hand if those treatments could be endured and then over and done with, and you are returned to full health. They may be a blessing. Living potentially permanently with symptoms is not really always good news. Perhaps these messages could be reframed.

Fibromyalgia and Tinnitus

So, it looks like Tinnitus is going to be something else that comes and goes, but seems to come far more often than it goes. This isn’t the only ENT complication there is also the probelms with swallowing that have begun. I will talk about that in another post though.

Do you suffer from Fibro and Tinnitus, I’d love to hear about your experience. Or maybe you just have Tinnitus? Either way drop a comment below or maybe get in contact on one of the social media channels.

Until next time,
Gentle Hugs,
Susan