Fibromyalgia

The official description for Fibromyalgia according the Arthritis Research website is:

Fibromyalgia is a long-term (chronic) condition that causes widespread pain in the muscles, tendons and ligaments. It’s quite common – it’s thought that as many as 1 person in every 25 may be affected. More women than men are affected and the condition varies a great deal from one person to another and from day to day.

In the past, other terms were used to describe the condition, including muscular rheumatism and fibrositis. The condition may even have been misdiagnosed as degenerative joint disease.

We now know that fibromyalgia isn’t inflammatory or degenerative. Although the pain can be severe and have a significant impact on your daily life, long-term studies suggest that it isn’t progressive and, unlike arthritis, it won’t cause permanent damage to your muscles, bones or joints.

Fibromyalgia is my ‘primary’ diagnosis, even though it was the last of my three conditions to get diagnosed. I remember a doctor telling me years ago that I could have Fibro but they pretty much contradicted themselves straight away by saying that I was too young and it couldn’t possibly be that. Before then I had never heard of it but as soon as I started doing some research into it I realised that this was what I had. I had all the symptoms and it was just like reading a biography of my life but in medical terms. I remember feeling relieved and empowered because in my heart I knew that I had this condition, even if the doctor seemed to think it was impossible for me to have it. There’s more than 60 symptoms of Fibromyalgia, but just because you have some of the symptoms doesn’t mean you may or definitely have it. I cannot stress enough how upsetting, frustrating and debilitating it is when someone says ‘oh I get tired really easily too, maybe I have what you have’. It’s one of the worst things you could say to someone who genuinely has it. Symptoms that affect me on a daily basis include:

• Joint stiffness, particularly in the morning. It takes me a long time to get dressed and undressed as trying to ease and navigate the stiffness and pull my arms and legs through clothes leaves me exhausted so I have to have a lie down afterwards to rest.
• Night sweats – I have to wear my hair up at night now. Washing my hair is a luxury to me now and having the hard work ruined by my neck getting sweaty during the night is a gut wrenching thought.
• Temperature spikes and dips. I literally have to dress for winter every single day. Long sleeved cardigans and leggings are my usual attire for the day. I’ll take of my cardigan and put it back on at least 6 times a day, if not more.
• Muscle twitching and weakness. I usually experience muscle weakness in my legs so walking to and from work will take a lot longer than usual
• Brain fog. I personally find this the most frustrating symptom I suffer with. I can be talking to someone and instantly forget mid-sentence, sometimes mid-word, what I’m talking about. I can be driving and totally forget where I am and where I’m going. I’ll forget someone’s name or the name of an object that I use all the time. Trouble processing information or instructions of a task. I have to write everything down otherwise I’ll forget something; lists usually have lists! You get the idea, but it’s literally like a big cloud of fog is in my head and I can’t shake it.
• Staggering gait. This basically means I’m clumsy and often walk into things! I’ll drop things constantly, walk into the corners of tables and walk into walls or doors. I struggle to judge distance properly so I often turn to walk round a corner too early and make a fool of myself.
• Impaired sleep. There’s no pattern whatsoever to my sleep – none. One night I’ll sleep all the way through, the next I’ll be awake all night with either insomnia or painsomnia (where you can’t sleep because of the pain). It’s very rare that I fall into a deep sleep, but when I do it’s near impossible to wake me up. I’ve slept through my alarm too many times to count and been late for work and it’s really upsetting and frustrating. Other times I’ll wake up every hour. There’s just no telling what will happen. I usually have a nap once a day, but sometimes I’ll have up to 4 – it just depends how I am that day.

The list goes on but they’re the main symptoms that I fight against every single day. Fibromyalgia isn’t a degenerative condition but I have been getting sicker and sicker this year which has led me to thinking more about my future and some decisions that I may have to make. It’s easy to make comparisons with others who have Fibromyalgia and I’m terrible for it. I know people who have it who are unable to work at all, whereas I’m still able to work full time so I try not to kick up a fuss and act ‘woe is me’ because there are others who have it worse than I do. However, that doesn’t mean that my pain doesn’t count or isn’t valid. Chronic illness affects everyone differently, no two people are the same.