The thing that leads to any diagnosis is the build up symptoms. Symptoms are what indicates to us that something is wrong with our bodies or minds and therefore they are an important thing to highlight. What makes fibromyalgia so categorically difficult to diagnose is that there are over 200 possible symptoms of the condition, and any one person may have any combination of any of those hundreds of issues! Joys. The images below give an indication of the most common symptoms a sufferer may feel:
Its hard to know when my symptoms first began or which was the starting point. Many years ago I had a bout of vertigo which rendered me house bound for just over a month. Fibromyalia is thought to be caused by an infection, or a stressful event, or genetics. Some people may simply develop it. I will never know whether the vertigo played a part in the introduction of my fibro or was a symptom of the underlying condition, however prior to this point I had never suffered from any health issues.
I’m extremely lucky in that my symptoms, for the moment, are fairly isolated. For example I don’t suffer from depression – something I am very thankful for as for many this is a crippling part of the condition.
My worst symptom personally for many years has been bladder issues. Speaking candidly, they started noticeably around three years ago in the summer. I felt constantly like I needed the toilet, even if I had just been and forced out whatever I could. The constant need to force myself to pass urine that most of the time wasn’t there made me feel physically sick. It was impossible to plan a journey incase I needed to go (or not more often than not) and it kept me awake almost every night with 20+ trips back and forth to the bathroom, most of which weren’t even necessary.
At this time I was exercising heavily and therefore according to my doctor kept many other symptoms at bay. My bladder was what was glaringly obvious and the focus initially was on this. I tried tablets for infections that weren’t there, tested every possible urine retention and overactive bladder steroid available for three monthly periods at a time, before finally being referred to the Urology team at my local hospital. There, I was put under general anaesthetic for an exploratory examination for any masses that might be pressing on my bladder or surrounding areas (thankfully, nothing was found) and hooked up to various wires for a urodynamics test (I wont go into graphic detail, but lets just say it was bad enough that I passed out mid test – Google it!) In a nutshell nothing was discovered, however based on the ‘assumption’ my bladder was oversensitive I was given two options. I could have botox injections directly into my bladder to disable it from needing to pass invisible urine, a procedure which may have meant needing to self catheterise. Or I could be referred to Harley Street to have a battery type pack fitted to my spine that emits small electrical pulses to control the impulse of my bladder neurologically. Both great choices… NOT. I was only 25 and wasn’t keen on either of these options in the knowledge that I hadn’t officially been diagnosed. Thankgod I didn’t listen is all I can say.
I walked out of my specialist’s office and didn’t go back. A year on I was noticing further symptoms and went back to my doctor. I was experiencing anxiety to the point of attending hospital for ECG tests. I was aching in my muscles more when I wasn’t exercising than when I was and feeling increasingly fatigued. Initially I was sent to rheumatologist who tested me for autoimmune diseases and cancers (one of the most stressful and scary times of my entire life). All tests came back negative which again I was thankful for… but I still didn’t have an explanation for the three years of tests and symptoms up to this point.
It was another half a year before I visited my doctor again to discuss fibromyalgia following two bouts of pleurisy, which may now have been muscular chest issues connected to the condition. During that time I’d also experienced another hospital visit due to extreme stress and anxiety causing heart palpitations, the muscle pain had become more noticeable since leaving my gym in the April (therefore reducing the amount of exercising I was doing), I was increasingly tired in the mornings having slept, and I was getting tingling and burning sensations in my skin (mostly my face) and short stabbing pains all over my body, predominantly in my sides and legs. Having ruled everything else out, everything pointed towards my current diagnosis.
Because of the current measures I’m taking with my diet, exercise and stress reduction, my symptoms are not as bad as they have been earlier in the year. Importantly, I’m managing to keep stress and therefore any anxiety in check, which has a knock on effect on every other symptom. My bladder still flares regularly but fortunately (or unfortunately depending on how you look at it) that is a feeling I am now used to. I still wake up tired and really struggle with mornings but always manage somehow – a good tip is to shower in the morning. This not only wakes you up mentality but also massages your muscles and relieves any tension. I ache a lot, a lot of the time, especially in my neck, shoulders and lower back. At the moment I am able to cope with the levels of pain that I feel. The tingling happens everyday but is something I try to ignore.
I get what is known as ‘fibro fog’, although I don’t tend to label it as such. I sometimes find it hard to find the words I want to say, I might forget a word completely and am so aware when it happens but just cannot seem to find it. I will also forget what I’m about to do or say almost as instantly as I think of it… ironically I have been meaning to write about this for some time but each time I click back into the post to edit it I’ve forgotten why I’m here!!! The most recent irritating development is what I call ‘creepy crawly skin’, which feels like you have bugs just under your top layer of skin moving around, or someone is crumpling a sweet wrapper in there. I mostly get this in my stomach and it is the most annoying thing. I’m still getting used to my body and the symptoms its presenting me and I feel it will be a long road before I figure it all out. Due to the nature of chronic illnesses we may never figure it out, but I’m giving it my best shot!
- Everybody’s symptoms are different – there is no set agenda with fibro.
- The variety of symptoms makes fibro particularly hard to diagnose, but hang in there. If you feel a diagnosis is wrong, or not solid enough, question it.
- If a worrying new symptom appears discuss it with your doctor. It may not necessarily be connected to the fibro and it’s easy to pin everything onto your condition. Its always better to check.