This past month I did something that has been a long time coming. This is likely going to be a long post, so strap yourselves in. I finally went to see a doctor about my pain. As a result, I was diagnosed with Fibromyalgia.
To fully explain, I’m going to have to go back a bit. I’ve had pain in various parts of my body ever since I was in secondary school. (For anyone not from the UK, that would’ve been any time between ages 11-16). I’ve never been particularly active, but I’m not lazy or unfit by any means. I’d always milk period pains to get out of doing P.E, but overall my fitness level was about average.
I remember having a lot of trouble with my knees in school particularly, and I did go to see a doctor back then when it first started. I had a few physiotherapy sessions, but I think they just concluded that I had weak muscles. They gave me exercises to do at home, which I did, but there wasn’t much improvement if any at all. So, they concluded that I wasn’t doing them properly and that was that.
After that, I can’t remember exactly what happened, but I was sent on my way with no solution.
Fast forward a few years to one of my first jobs as a sales assistant in small, family-run jewellers. It was a small shop with a hard floor and not much room for walking around. This job involved standing up all day, from 9 am -5 pm with one 30 minute break, and two 15 minute breaks. At the end of every single day, I was in absolute agony and I could hardly walk. Everything hurt. My legs, my knees, my feet, my back, everything. When my dad picked me up at the end of the day, all I could do was go upstairs and lie on my bed for the rest of the evening.
At this point I only worked part-time, there was no way in hell I’d be able to do that every day.
It was then that I started to realise it wasn’t my fitness level that was causing it. A couple of the women I worked with were bigger than I was, and they both smoked and did no exercise at all, so I knew it wasn’t just that I was unfit or had weak muscles. Something else had to be wrong, but I had no idea what. I was so frustrated. As time went on I found myself having to sit down more and more during work. As there were no chairs I had to sit on the top step of the stairs. (The shop was on the street level, and the staff/office area was in the basement). One day when I was sat on my step in absolute agony, one of my coworkers said the following to me.
“You know, you are the laziest person I’ve ever worked with”.
That comment has stayed with me until this day. I had been telling her over and over that I was in pain, so why wouldn’t she believe me? Does that mean no one is ever going to believe me?
After a year, I left to go into an office job where I had the freedom to sit or stand. This was so much better for my pain. I didn’t have much pain during that time, only if I’d been on my feet a lot during a very busy day, or if I was sat down on the phone a lot.
After about 4 years, that workplace had become unbearable. My mental health was suffering severely because of it, so I left. I had nothing to go to, I had no plan whatsoever. I just knew it was time to walk away for the sake of my health. In the years that followed, I found myself in a very dark place. I was in a constant cycle of being too depressed to work, then experiencing anxiety and worrying about our finances and the future, therefore making my mental health worse, and lather rinse repeat.
On the whole, I’m in a much better place mentally than I have been over the past few years. I feel so grateful to still be here and to still have a wonderful husband and a roof over our heads. Honestly, I’ve no idea how I managed to crawl out of that place I was in.
But the important thing is that I did.
It’s only been over the past year that my pain has been getting worse. During our trips to London and Copenhagen the pain from walking was unbearable all day every day. (There were many other instances though, such as days out and shopping trips etc). On both occasions, I was struggling to walk properly for the whole trip, and it took days to recover afterwards. By this point, I’d already had days when I woke up in pain even if I hadn’t been doing anything strenuous the day before. At the end of last year, I started a pain diary to track the pain and determine if there was anything triggering it. Over the course of a whole month, I had an entry for every single day. I decided enough was enough, and I made the decision to go to a doctor and get it sorted.
Another symptom that I’d been more and more aware of as time went on, is what they call ‘Fibro-fog’ or ‘brain-fog’. Since my mental health had gone downhill, I’d noticed a vast decline in my short term memory and concentration. I really struggle to recall recent conversations and events, and often I find it hard to put my thoughts into words coherently. I can go completely blank mid-sentence, and sometimes when I’m struggling to get my thoughts out it doesn’t make sense. Then I have to reconstruct what I was trying to say to try to get my point across.
It’s so frustrating – people must think I sound completely thick when I’m struggling just to put a sentence together.
By that point, I’d already heard of Fibromyalgia, mainly due to the awareness that Ali Hemsley had raised about it. Without wanting to diagnose myself, I had a pretty good idea that that was what it was. But I still wanted to go to a doctor to get a proper diagnosis. There was just one problem – my GP practice was awful.
I’d been to the doctor over the past few years about various issues including my mental health. To be perfectly honest, the reason why I let the pain go on as long as it did was that I was scared they wouldn’t take it seriously. For example, I’d previously been because I’d been having severe hydration for about two or three days. No matter how much I drank I couldn’t stop feeling thirsty. Drink, pee, drink, pee, drink, pee, etc. My mum took me to the minor injuries unit at the local hospital and they tested me for diabetes which came back negative. They told me to see my GP as soon as possible, so I made an appointment for the following day. I did, and the doctor said to me “well we all get thirsty sometimes”.
Can you blame me for not wanting to go back?
At the start of 2019, I moved to a different doctor’s surgery, just up the road from my house. I saw a lovely lady who actually let me explain my symptoms in detail. (Usually, they’d try to diagnose me and get me out the door before I’d even sat down). She let me explain all about my pain and fatigue, my brain fog, and we came to the conclusion that it’s very likely to be Fibromyalgia/Chronic Fatigue Syndrome. I can’t tell you how relieved I was to finally put a name to a face.
To make sure, she wanted to run a blood test to rule out any underlying causes. I wasn’t exactly thrilled about it, but I put my big girl pants on and went anyway. The first one came back with a sign of infection due to my white blood count being slightly higher than usual, usually due to having a cough or cold. The next week I went back for a second blood test which came back normal.
As a vegan, I’d be lying if I said I wasn’t concerned that it was something to do with that. I’ve been so attentive to making sure I’ve been getting all the nutrients and vitamins that I need. The thought of going back wasn’t an option. However, my iron, calcium, vitamin D and B12 were all great, and my kidney and thyroid functions were good too. This confirmed that it was nothing internal that was causing my pain.
It’s so ironic that I’m the healthiest I’ve ever been, but also in the most pain that I’ve ever been in.
As far as I understand, the difference between Fibromyalgia and Chronic Fatigue Syndrome/M.E is that with Fibromyalgia the most prevalent symptom is pain, and with CFS the main problem is the fatigue. While I do experience fatigue, my main issue is pain. So out of the two, I’d say it’s more Fibromyalgia.
Doctors aren’t sure what causes it, but they do believe it’s linked to mental health. As I’ve suffered badly with that over the past few years, it does make sense that this is happening now as a delayed reaction from my anxiety, stress, and depression.
There isn’t currently a cure, so all I can do from now is to try and keep active with gentle, structured exercise, try to manage the pain when it comes, and I’ve also referred myself to have some CBT. I’ve started doing yoga more regularly as well as the occasional PT session, and I meditate when I can too. I always feel better once I’ve been moving. There have been days over the past few years where all I’ve been able to do is lie on the sofa and watch TV, which obviously isn’t good for the body. It’s all about finding my balance and not doing too little or too much, listening to my body, and resting when I need to.
After all this time, I am relieved to have an answer.
But I’m also a bit disheartened that Fibromyalgia isn’t something that can be fixed with antibiotics or the like. I try to be as positive as I can but sometimes it does take its toll. While waiting for the results of my blood test I was genuinely scared that it was going to end up being something serious and life-threatening. Given that I’d had that scare, I’m very grateful to be alive and healthy. The cruel irony that this time last year I was often having thoughts of not wanting to be here, to now being afraid that I’m going to die is not lost on me.
If anything, having a Fibromyalgia diagnosis has made me more determined to try and live a normal life. I’m eager to meet other chronic illness warriors to support, and I find myself wanting to do walks and hikes to raise awareness for Fibromyalgia. Over the past few years, I’ve been looking for my purpose in life…
Maybe this is it?