Hello my lovelies! I hope you had a good week and are enjoying your weekend so far! As for me, I’ve spent the day chilling out not doing much which was just what I needed after a busy week. So, as you can see from the title of today’s post, I’m going to be talking to you about fibromyalgia.
You may remember from my previous post talking to you about my spoonie journey so far that I’ve lived with chronic pain for around 5 years now, and when I wrote my last post I had just found out that my neck curves in the opposite way to how it should and that it’s something I’ve had from birth. At that time the physiotherapists believed that that could’ve been the cause of some of my back pain, but wanted to do some more investigations which led to me being referred to rheumatology and having more tests and scans done.
And after all of the results came back the rheumatologist I was seeing told me that my pain likely isn’t actually coming from the curve in my neck, and that she believes I have a condition called fibromyalgia as we have pretty much ruled everything else out at this point. And so.. back to my GP I went.
My GP then decided to send my back to physio for the hundredth time and when I described my symptoms to the physiotherapist she said I was actually describing most of the symptoms that are present in fibro and that I one of the symptoms I have is funnily enough one of the tests that is done to help diagnose fibromyalgia. After my physiotherapist said that she said she would send a letter to my GP so that my pain could finally be diagnosed as fibro since I just keep being send round the hospital departments in circles with the only thing in common with my appointments being that everyone thinks I have fibro and only my GP can diagnose me with it.
And so a few weeks passed and a phone call to my GP later, my chronic pain was officially diagnosed as fibromyalgia. Fibromyalgia syndrome (FMS) is a long-term condition that causes wide spread pain across the body which unfortunately doesn’t have a cure at this present time.
Symptoms (taken from the NHS website) can include:
- increased sensitivity to pain
- extreme tiredness (fatigue)
- muscle stiffness
- difficulty sleeping
- problems with mental processes (“fibro-fog”), such as problems with memory and concentration
- headaches
- irritable bowel syndrome (IBS), a digestive condition that causes stomach pain and bloating
Although there isn’t a cure for fibro at the moment, there are ways some people manage it; following an exercise routine, taking painkillers, antidepressants, trying relaxation techniques and trying therapy.
So, now that you know a bit more about what fibromyalgia is and its symptoms etc, something I’ve been asked a lot is how do I feel about being diagnosed with FMS?
Well, it might sounds weird since fibro hasn’t got a cure but I’m actually kind of happy that I’ve been diagnosed, like it’s obviously upsetting that it’s a condition I’m stuck with that causes me a load of issues, but I’m glad that after so many years of questioning what is going on with me I’m just happy to finally have the answers behind my pain because having to constantly go back to the GP with the same issue for years makes you start to feel like you’re going mad and that maybe it’s all in your head when it’s not. But now I know what is the cause of my pain etc, I can start looking forward at what I can do and try out to manage my symptoms.
In terms of the symptoms that I deal with on a daily basis, I typically have back pain, fatigue, lack of sleep, fibro-fog and headaches. To manage my symptoms I work out two to three times per week, take naps when I need them, make to-do lists and put loads of reminders in my phone and take pain killers. I also have an acupressure pillow I sometimes sit with on bad flare up days which is essentially a pillow with loads of spikes all over it to help stimulate blood flow and help with pain management. There’s quite a few different types of products out there that I want to try out for managing chronic pain, so if you have any favourites or any that you’d like to see me try out and review then let me know!
It’s a weird feeling having a condition that can be pretty debilitating whilst also being invisible to others, it can sometimes feel like other people don’t believe you’re ill because ‘you don’t look ill’ and appear completely fine to the outside world, so I’m working on validating my own feelings and making sure I don’t overdo things and cause myself a flare up. When you live with chronic pain everyday, I think we sometimes forget to actually acknowledge how much strength and energy it takes to do everyday tasks, and because we’re in constant pain we sometimes don’t bother to even tell anyone we’re in pain because it’s just normal for us; so if you see someone and think they’re perfectly fine because they appear fine on the outside, maybe take a second to remind yourself that not all illnesses are visible and let people know that their feelings are valid.
Even though I’ve only gotten my official diagnosis this year, I’ve actually been living with fibro for around 4-5 years, and in that time it has taught me several things:
- You can always tell if someone is ill just be their appearance
- Your feelings are valid
- It’s ok to rest when you need to
- It takes time to find what works for you in terms of symptom management
- You’re still you, even with a long-term condition
- Find people you can talk to about what you’re going through who understand
So now you know a bit more about my spoonie journey, what I’ve learnt so far and how it’s changed since last year! And with that, I think it’s time to stop my rambling and brain dump for today!
Have a great weekend my lovelies and look after yourselves!
Love,
he SUN Network is a small organisation and we gather feedback from people who have accessed/tried to access/are accessing mental health or drug and alcohol services within Cambridgeshire and Peterborough, as we believe the people who have accessed the services are the best to influence and shape how those services work in the future.
The Weight Of My Worlds 