If there is one thing about Fibromyalgia that I regularly share, it is that everyone’s experience is different. The symptoms we have, how severely they affect us and even the route we take to diagnosis can vary enormously.
My own journey to diagnosis took just under a year. Along the way there were plenty of GP appointments, blood tests, different medications, a rather unhelpful rheumatologist and a period where I simply didn’t know what was wrong with me.
So, I thought I would share how my symptoms first began, what happened while we were trying to find an explanation and how I eventually received my Fibromyalgia diagnosis.
When My Symptoms Started
My symptoms began two or three weeks after my wedding in July 2015. The wedding itself was a wonderful day, but like most weddings there had been a lot to organise beforehand. Being a crafter, I had made my own invitations and, although I definitely wasn’t a Bridezilla, there was naturally some stress involved in getting everything ready.
Once I started trying to understand what might be happening to me, I read that Fibromyalgia could sometimes appear following a stressful event or physical trauma. That made me wonder whether the build-up to the wedding had played any part. I had also had my fair share of accidents and injuries over the years, but rather than take this story off on a completely different tangent, I have shared those in Accidents: A Lighthearted Look at Mine.
I don’t know whether any of those things actually triggered my Fibromyalgia, but they were certainly among the questions I was asking myself in those early days. What I did know was that, only a few weeks after the wedding, pain had begun to become a regular part of my life.
Trying to Manage the Pain
At first, I tried to manage the pain with standard over-the-counter medication. I was taking ibuprofen quite regularly, but before long I began having really bad stomach pains. One day it became so severe that I had to leave work and go to A&E.
After various tests, I was told that the stomach problems were probably being caused by the amount of ibuprofen I had been taking and that I should stop using it.
I carried on with paracetamol for a while, but it simply wasn’t controlling the pain I was experiencing. Eventually, I went to see my GP and was prescribed co-codamol.
Trying to Keep Working
Even with the co-codamol, I was still in an awful lot of pain. I was also becoming increasingly exhausted and found myself leaving work early day after day.
For a while, finishing a couple of hours early became my normal routine. Eventually, those reduced hours became my new working hours because I simply couldn’t manage the full days I had been doing before.
Sleep was becoming another problem. The pain was making it difficult to sleep properly, which of course left me even more exhausted during the day.
My GP prescribed amitriptyline, starting me on a low dose. The first night I took it, it practically knocked me out, but it did help me sleep.
At this point, there was still no diagnosis. I just had a growing collection of symptoms and was trying to keep going while we worked out what was causing them.
Looking for Answers
I was seeing my GP regularly by this point and having more blood tests. For a while, I felt like a bit of a pincushion.
The co-codamol and amitriptyline were helping me manage some of the symptoms, but we still didn’t know what was actually causing them. As time went on, my GP adjusted the amitriptyline dose and continued looking for an explanation.
Eventually, because things were taking over more and more of my life and I still needed some kind of answer, my GP referred me to a rheumatologist.
It took a couple of months for the appointment to come through. At the time, I was hoping that seeing a specialist might finally give me some clarity.
The Rheumatology Appointment
Probably the worst part of the whole journey was my appointment with the rheumatologist.
The clinic was running late, so I had already been sitting waiting for over an hour after coming out of work for the appointment. Before we even got into the room, he was watching how I walked.
Once we sat down, I described what had been happening. I explained about the pain, but also the exhaustion and the general feeling that something simply wasn’t right. The pain wasn’t like having one specific injury where one area hurts. It was widespread, unpredictable and seemed to move around for no obvious reason.
I also mentioned that I had been doing some research of my own and had come across Fibromyalgia as a possibility.
His response was, “I don’t believe in Fibromyalgia.”
At that stage, Fibromyalgia was still just something I had read about online, while he was the specialist sitting in front of me. Naturally, that made me question whether I had got it completely wrong.
He diagnosed me with widespread tendinitis and gave me some physiotherapy exercises to strengthen my core muscles. I was also told that he didn’t need to see me again. The message was essentially that either the exercises would make me better, or I wouldn’t have done the work he had given me.
So that was it. No follow-up appointment was booked, and I went home believing that perhaps strengthening my muscles really would solve the problem.
Trying the Exercises
I went home determined to give the exercises a proper try. I bought a few things I needed, including a large exercise roller, and really thought this might be the answer.
My husband helped me with the exercises, moving things into position and counting my repetitions. I wasn’t expecting them to be easy, but it quickly became obvious that this was much more than ordinary muscle soreness.
I knew what aching muscles felt like. I had danced as a child, done long sponsored walks and had been reasonably active over the years. This was completely different.
Even after only three or four repetitions of some of the exercises, particularly the ones involving my legs, the pain became agonising. I simply couldn’t continue.
That was the point when I knew I needed to go back to my GP. Whatever was happening, strengthening my core muscles wasn’t fixing it.
Back to My GP
I went back to my GP and explained what had happened at the rheumatology appointment, as well as how painful I had found the exercises he had given me.
When I told her that the rheumatologist had said he didn’t believe in Fibromyalgia, she apologised to me for the experience and said that she would keep me under her care.
We continued with the medications I was already taking while she kept looking into other possibilities. There were more blood tests and, for a while, things simply carried on like that.
I was still working reduced hours, but I was also beginning to have days when I couldn’t work at all. Sometimes something completely outside my control, such as a big thunderstorm, seemed to make everything worse.
The hardest part was not knowing what was actually wrong. I had all these symptoms, but still no diagnosis, and for a while I felt as though I was simply in limbo.
At the same time, I was waiting to see another rheumatologist, hopefully one who had a rather different view of Fibromyalgia.
Finally Getting My Diagnosis
Then, out of the blue, I had a phone call from my GP.
She explained that there had been a change and that GPs were now able to diagnose Fibromyalgia themselves. Looking at the full range of symptoms I had been experiencing, not just the pain but everything else as well, she felt that Fibromyalgia was the most likely explanation.
She had also considered ME because of the exhaustion, but at that point pain was my main symptom, with the exhaustion coming second, so Fibromyalgia fitted my overall picture more closely.
At last, I had a diagnosis.
My symptoms had started around the end of July 2015 and I received my official diagnosis in 2016. From memory, I think it was around May, so the whole journey took just under a year.
I know I was fortunate. For some people, getting a Fibromyalgia diagnosis can take much longer. I put a lot of my own relatively quick diagnosis down to having a GP who listened, kept investigating and took what I was experiencing seriously.
What Having a Diagnosis Meant
Getting the diagnosis didn’t suddenly change my symptoms, but it did give me an answer.
I wasn’t just a collection of unexplained problems anymore. I had something I could research properly, and I could start finding other people who were living with Fibromyalgia too.
That sense of connection became important to me. I found online communities where I could talk to other people who understood what living with Fibromyalgia was actually like.
In time, that became part of the reason I started blogging about my own experiences. I wanted to share what I was learning, talk honestly about life with Fibromyalgia and hopefully make the journey feel a little less lonely for someone else.
When Work Had to Change
Although getting a diagnosis gave me an answer, it didn’t make the Fibromyalgia disappear.
Over the following year, work became increasingly difficult. My hours had already been reduced, and flare-ups were making it harder to know from one day to the next what I would actually be capable of.
Eventually, I reached a point where something had to change.
That became another significant part of my Fibromyalgia journey, and I have written much more about what happened in Working With Fibromyalgia When Work Has to Change.
A Different Road
Fibromyalgia changed the direction my life was taking, but it didn’t bring it to an end. It simply put me on a different road.
That road has involved learning to work with my body rather than constantly fighting against it. If I have something bigger planned, I know I may need quieter days beforehand and recovery time afterwards. On a bad day, sometimes the most useful thing I can do is stop and rest before a small problem turns into a much bigger flare-up.
There are still things I enjoy doing, including crafting, genealogy and being creative. I have also met some wonderful people through the Fibromyalgia community, even if most of those friendships have been made virtually.
This certainly isn’t the life I expected to be living, but over time I have learnt that a Fibromyalgia diagnosis can change your plans without taking away everything that matters to you.