My Fibromyalgia Misdiagnosis Story: Answers After 20+ Years

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my fibromyalgia misdiagnosis story

I don’t have fibromyalgia! This is my fibromyalgia misdiagnosis story. After many years of having only one diagnosis and then getting several more in a row we now realize the kind of overarching cause of it all and it’s been a journey I’ll tell you that much.

My symptom journey

I remember at 14 having pain in my forearms and I went to the doctor and they called it tendonitis and kind of left me on my way. I don’t remember too much of what happened in the next few years symptom wise. I do remember at 17 that I really felt the pain in my shoulders and that at the end of my University day I would be walking home and I’d be in tears from the pain then I saw like the physiotherapists at the University and they would try to strap me up telling me my posture wasn’t correct but that actually really caused a lot of pain so I didn’t really do anything.

Then in my last trimester of University I got sick with a really bad bug and that’s how the chronic fatigue came. I suspect you would call it post viral fatigue syndrome but it’s just called chronic fatigue syndrome on my history on my diagnosis. I wasn’t actually diagnosed at that time and so after that happened the pain got steadily worse the sleep got steadily worse. The fatigue was bad after that point and I barely managed as I went into full-time work.

I sought all sorts of different physical therapists to try and help me but nothing helped it was just getting worse and worse and worse to the point where I was 25 I got every kind of bug going around. I was so sick all the time. I was in so much pain. I was so tired I rarely slept like it was terrible.

Watch it here

The turning point

As I’ve documented on this YouTube channel and my blog and in my books that I had this urge and this feeling that I knew that I needed to cut back and I needed to do what I now know as pacing.

So I moved in with my family and took a a a part-time job instead of full-time time. I worked 3/4 time or 27.5 hours and cut the one hour bus ride each way down to a half an hour drive. And that made a big difference.

Very slowly over the years things have changed and so even though in the last 10 years I’ve had four children, I’ve actually gotten better so from that point my health has just gone from strength to strength. It’s just incredible and so pacing was really important got on top of the pain.

I plateaued for a while. Started Low Dose Naltrexone, that really helped. Plateaued for a while started quetiapine and started sleeping and that kind of helped things as well.

The endometriosis and loads of diagnoses era

And then I went into a bit of a funk and things got really really bad and we realized then that my heavy painful periods was actually endometriosis. They got worse and worse and worse over a period of a year. They were brutal absolutely brutal it was traumatizing.

I got sicker and sicker. I lost so much weight I got down to 50 kgs, which for me it was not a good look, I’m used to having muscle I’m used to being strong. I’ve always exercised as much as I could. I had to fight and in the end, had we had to pay for a private surgeon to remove the endometriosis and give me a hysterectomy and that’s changed the game for sure.

The year that I found out about the endometriosis is the year that I started a new doctor’s clinic and they have an online portal and I was able to see my history for the first time. After believing I was diagnosed with fibromyalgia at like 23 or 4 years old, I found they didn’t actually put fibromyalgia in my permanent diagnosis or long-term diagnosis until 2019. Whereas, in 2014 they put chronic fatigue syndrome in there and never told me. The ME/CFS made a lot of sense to me, it absolutely aligns with a lot of my symptoms and it just makes sense. The fibromyalgia never really fit for me.

During this year they also added interstitial cystitis to my list.

my fibromyalgia misdiagnosis story

Starting to understand hypermobility

The physical therapists treating me could tell there were physical things happening and it wasn’t until after my operation in 2023 that we started to put it together. My sacroiliac joints were subluxated badly during the surgery and things were really bad after the surgery. I could hardly walk got to the point where I could hardly sit or stand or lie and I was in so much pain.

I went to the doctor and begged for help and gave me a referral to a rheumatologist but it took so long that I was looking for anything in the meantime and I found out that chiropractors do an x-ray as part of their intake and at that time we thought perhaps it was like ankylosing spondylitis and that there was some permanent damage happening specifically in my lower back and SI joints.

The X-ray with the chiropractor showed that there’s no permanent damage that they could see but they could see that my spine was really out of curve at the neck and the low back and my sacroiliac joints were really subluxated.

This chiropractor is very gentle completely understands the nervous system and I made good progress in the first year of seeing her. Here’s the summary about chiropractic. After a year of treatment, it struck me a that she talks about my being hypermobile like it’s just an accepted fact. So I clarified – do you mean just my pelvis, or is there more hypermobility? And she confirmed – all my joints are hypermobile and she believes that is the underlying cause of all my symptoms.

That night, I went home and I researched hypermobility and I found a hypermobility organization and I went through all of the symptoms. Every single symptom aligned, even the symptoms that never made sense with fibromyalgia. It explains everything – the joint pain, the muscle pain, the muscles are tight because they’re holding on to my poor joints and trying to keep everything stable. The dysautonomia – so the the heat intolerance the orthostatic intolerance all of that kind of thing. Even the period pain can be explained by the hypermobility Spectrum Disorder.

Asking my doctor

The previous year, I’d asked the rheumatologist, they were very dismissive and because I couldn’t right there and then bend everything in the right way for Beighton score. Where you can bend your thumb back and your fingers back and touch the floor with your legs flat and all of that stuff. He also said I didn’t have a first degree relative with hypermobility diagnoses so he wouldn’t diagnose it.

But what I found out is that it’s the criteria is actually have you now or ever been and my muscles have been getting progressively tighter and tighter so that I can’t do those things. But as a child I remember people commenting on how flexible I am and I was always like touching the the ground and stuff. I’ve had people comment on my videos my yoga videos asking if I am hypermobile because of my elbows and my knees

It all just made so much sense to me that when I went to the doctor I asked her I said look I think that this is something. She sat there and she listened and she went through everything with me.

I got a bit emotional and told her that in 20 years years I have never been listened to like this. And she got a little bit upset as well and she said she was so sorry for all the gas lighting and all of that kind of thing that I’ve experienced. She was also sorry that she could give me this diagnosis but she can’t do much else. So she’s written hypermobility suspected hypermobile Ehlers-Danlos Syndrome in my long-term diagnosis but public Rheumatology won’t see hypermobile cases right now. She also struck fibromyalgia off the list.

I didn’t expect her to listen to me or diagnose me – I thought she might blow me off or refer me. So I didn’t prepare or even consider that I might need to be referred to a private rheumatologist. So I’ll have to go back next year and get that.

my fibromyalgia misdiagnosis story

Fibromyalgia and Hypermobility

A high percentage of people with hypermobility will be misdiagnosed as fibromyalgia, also a big percentage of people the fibromyalgia will be secondary to hypermobility. So there’s a lot of overlap there and I think that’s really important to talk about.

Treatments

You also just treat it symptom by symptom. The wonderful thing is that I have a holistic plan that I’ve been sharing here for a long time. So I prioritize my sleep, have a good pain management plan.

I have I’ve been doing my strength training which I think has been another thing that’s really helped me improve this year.

All of the healthy human habits that I’ve always done – lots of water, natural sunlight, trying to reduce stress, my yoga need meditation because that helps my nervous system

What’s next

I’m at the very beginning of my research. I’ve got a lot to learn and as you know with cognitive dysfunction it is hard to learn new things. I want to know the history, the symptoms. To know everything but the wonderful news is that the approach to it is one protect your joints. So instead of being told for years and years nothing’s wrong push through forget about it now it’s okay be a little bit mindful because you can be causing damage and you’re at risk for arthritis.

It’s a bit overwhelming to be honest. My blog and several books have fibromyalgia in the title! A lot needs to change but also not much. The treatments don’t change much. I have a great plan in place.

I’m looking forward to sharing about it in my new book which I’m going to take some time because I really want to research and get it right. I want it to be a wonderful long-term resource going into the conditions, what’s overlapping the treatments, everything like that.

But keep an eye out because I’ll be sharing what I learn, as I learn it, here on the blog.

Thanks for being here on the journey. What a roller coaster it is!

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