This week I want to talk about another one of my conditions, Fibromyalgia! Fibromyalgia seems to be the most common condition I’ve got, as I see a lot of people talking about their struggles with it on Twitter… For me, this diagnosis was one of those ones that makes you realise that things about you that you thought were normal, actually aren’t so “normal”.
Fibromyalgia is a bit of a strange condition as it has many symptoms that all seem a bit random & pointless; the condition manifests itself through random pain all over the body, pain that doesn’t really have much of an explanation. I was diagnosed with Fibromyalgia by a rheumatologist when I was looking for an explanation for the stiffness I experience in my hands.
The pain & stiffness I experience in my hands is something that has got worse over the past few years – I realised that things were getting really bad when they cramped up during an exam & I was unable to finish it… my hands basically froze in a shape that made them look like claws – & it was stupidly painful (to begin with anyway, the pain wore off eventually). It wasn’t until three or four hours later that I managed to get full control in my hands back again, but even then my hands were incredibly stiff.
I had some tests & scans done to check for other conditions, mainly arthritis as I have previously been told that it is incredibly likely I will develop it in my hands & knees (yay); but all of those tests came back relatively clear, & this is when the rheumatologist told me that he was pretty confident I had Fibromyalgia. When I went home & did some reading about the condition, I was shocked that no one else had diagnosed me with it before because it was obvious I had it! I was so angry, yet again, at the NHS for failing to diagnose me with something again but I was also relieved to know that I don’t have arthritis (yet).
Okay, so what are the symptoms & side effects of Fibromyalgia?
First up we have increased sensitivity to pain – this one is fairly self-explanatory; small knocks or falls that wouldn’t normally hurt someone do end up hurting people with Fibromyalgia – this makes us more fragile than healthy people & means that we have to be more cautious of the things we get up to.
Fatigue. Now, this is a big one for me… Fibromyalgia often comes hand-in-hand with chronic fatigue; something which has plagued me ever since I was 14. My fatigue has gradually just got worse & worse over the years, & it’s definitely at it’s worst right now. My fatigue affects everything in my life – when I was a student it would result in me not being able to stay awake for all of my 2-hour lectures, on the weekends it means that if me & my boyfriend go somewhere I often have to take a lot of rest breaks & he often gets frustrated over this (bless him). It also means I sleep a lot… like, a lot. My doctors & I all agree that the reason I sleep so much is because my body is constantly trying to heal itself, but when you’ve got a syrinx/cyst/cavity in your spinal cord, no amount of sleep is going to fix you.
Another symptom is difficulty sleeping – a few years ago I was put on muscle relaxants to help me sleep! Not being able to sleep, suffering from constant bouts of insomnia, whilst dealing with fatigue & other illnesses is not fun. Nortriptyline is my saviour (although it doesn’t always work).
Next we have fibro-fog! This is something that I’ve dealt with ever since I learnt to walk again, but for a long time I wasn’t sure what it was or what was causing it. I initially knew of fibro-fog by the name of brain-fog, as this is a term often used by people who have Chiari malformation; as I’m in a lot of support groups with people who have Chiari, due to the connection it has with syringomyelia, I’ve always referred to it as brain-fog. Brain-fog is fairly self-explanatory, but I know from trying to explain it to my boyfriend, that it’s not something that people who don’t experience it can understand. In very basic terms, it basically means you have difficulty remembering things (I was diagnosed with short-term memory loss at 13) & also struggle to concentrate (I also have dyslexia).
Headaches & migraines often plague people who suffer from Fibromyalgia – if I ignore the problems I have with my bladder, my headaches & migraines are definitely the number one thing I wish I could get rid of. It’s very rare that I’ll get through a day without having a headache or migraine; and when I get migraines they can last for days. I hate getting headaches & migraines so much because they stop me from being able to read or write; reading especially is the one thing that helps me cope with being permanently unwell so when that ability is taken away from me, it sky-rockets my depression. None of the medication I’ve tried has ever helped either.
Irritable Bowl Syndrome also seems to be quite common in Fibromyalgia patients; I’ve not actually been diagnosed with IBS but I’m fairly certain I do have it. For me, the worst symptom of this is the major stomach cramping that makes you feel like someone is squeezing your internal piping! Definitely one of the worst sensations I’ve ever experienced.
Another issue that Fibromyalgia patients have to deal with is having skin that easily marks, scars or bruises! Three days ago I was in A&E because of a new renal infection & I had to have blood taken; during their many attempts at getting blood out of my veins, the nurses had to use those elastic things that they bind around your arm really tightly – if you have blood tests a lot you’ll probably know what I mean! I had one of these bands around my arm for a couple of minutes & I’m now sporting a nice red line across the inside of my arm – this is because of my Fibromyalgia. I also have a scar on my ankle from when I was pushed into a rose bush 5 or 6 years ago; the cut I got from one of the thorns was tiny but there’s still evidence of it on my skin today. I also bruise really, really easily (I also get love bites dangerously easily! lol).
There’s probably a whole bunch of other symptoms that Fibro patients experience, but these are the ones I personally have to deal with a lot – if you get any other symptoms please let me know in the comments!
The cause of Fibromyalgia is unknown for most patients; the NHS website says that some people believe it’s to do with chemical imbalances & speculate that things like an accident, child birth, operations or relationship break ups can cause Fibromyalgia to develop. My doctors believe it’s just another side effect of having syringomyelia. I said previously that when I was diagnosed with the condition, I couldn’t believe how many things about my body I thought were normal actually aren’t, & that’s just one reason why so many Fibro patients don’t ever get a diagnosis or any help. It really sucks.
When it comes to treatment for Fibromyalgia, there isn’t really much out there. Medication is something that can help some people (like me with my inability to sleep), but other people also benefit from CBT (cognitive behavioural therapy) & sometimes simple lifestyle changes can help make a difference.
You can find out more about Fibromyalgia using the links below: