Fibromyalgia is an invisible illness.
It can therefore be difficult for anyone who doesn’t have it to understand its various symptoms. There’s chronic widespread pain in joints, muscles and connective tissue, and fatigue. The latter is not simply a feeling of being tired, but a debilitating lack of energy that impacts every aspect of the person’s life. Other common symptoms include stiffness and headaches but there are a lot of symptoms associated with fibromyalgia. Here are a few that are particularly difficult to talk about.
1. Diarrhoea, constipation, bloating and flatulence Also know as irritable bowel syndrome, our bowel just doesn’t function as it should. This can be due to food intolerances but it can be very difficult to identify the causes. Often, unpredictable and/or uncontrollable stress impacts these difficult and inconvenient bowel symptoms. At times it can be unpredictable bowel habits that mean a sufferer is unable to leave the house or has to plan trips around being able to find a toilet quickly.
2. Lack of motivation (Picture: Liberty Antonia Sadler for Metro.co.uk) It’s difficult to admit that you’re meant to be doing something but it feels like you just can’t be bothered. My difficulties with motivation make me feel lazy and I’m constantly chastising myself for not just getting on with things. Fatigue is the enemy of motivation, a feeling of just wanting to curl up and go to sleep is not conducive with having a high level of motivation. Also knowing that doing activities causes pain makes it difficult to get motivated.
3. Low libido It can be difficult to manage a decreasing sex drive. Relationships can suffer as the other person thinks you’ve gone off them. It’s nothing to do with them, it’s just that when your body is dealing with chronic pain and fatigue having sex isn’t a top priority. There could be other changes within brain chemistry that impact libido, but, like with many symptoms of fibro, the causes are not fully understood.
4. Nausea I go through periods where it doesn’t matter what I eat, everything makes me feel sick. It can be anything from a low-level grumbling discomfort to a feeling that I might actually be sick. When appetite fluctuates as well it can be tricky to balance eating less to avoid symptoms with eating enough to have enough energy.
5. Prolonged healing A small injury can take a long time to heal and the pain or tenderness remains long after the visible injury has gone. I don’t talk about this because it looks like I’m just trying to get more sympathy for the original injury.
6. Mental problems such as lack of concentration and poor memory (Picture: Liberty Antonia Sadler for Metro.co.uk) Sometimes known as ‘fibro fog’ it feels like you just can’t think straight, as though you’ve got cotton wool in your head. This can be disconcerting and frustrating. It’s very unpredictable: I could get up in the morning, feeling like I can tackle the day OK, but then struggle to work out which order I should put my clothes on or how to make a cup of coffee. You know you can do these things but you just can’t seem to pull the right thoughts together for anything to make sense.
7. Excessive sweating This can be in common places such as in the armpits or in unusual places such as the palms of the hands. This can feel very embarrassing when, for example, shaking someone’s hand when you meet them. If this is getting unmanageable there are treatments that can be explored with your GP.
8. Medication side effects It can be difficult to balance the positive symptom control the medication gives with the side effects. I find codeine helps with my pain but it makes my constipation worse meaning my abdomen feels uncomfortable. I have to balance which symptoms I would rather manage.
9. Weight fluctuations This can be related to the bowel and appetite symptoms or medication. It can be hard for people to understand that being under or overweight is no indication of how well someone is managing their illness.
10. Problems with thermoregulation I’m either boiling hot or freezing cold. It doesn’t matter what the weather’s doing I just can’t get comfortable. I always laugh this one off, joking that I’ve worn the wrong clothes but the truth is, my body has lost its ability to regulate my temperature and it doesn’t really matter what clothes I’m wearing.
11. Irritable bladder (Picture: Picture: Liberty Antonia Sadler) This mean you feel like you need a wee before your bladder is full. Your bladder may also contract painfully and there’s a higher risk of infections. It can cause high anxiety feeling like you need the loo all the time, fearing you’ll wet yourself. Some people experiencing the feeling of needing to go to the toilet up to every 15 minutes. This can limit the sufferers life quite significantly.
12. Sensitive senses It is common for sense of touch to be heightened, feeling hot, cold or the lightest touch as painful but the other senses may be problematic too. I have very sensitive hearing and find it difficult to function when there are loud noises. It’s like the sound is piercing through my brain and I just can’t think straight. I also find bright lights difficult to manage and prefer to work in dim light whenever possible. Other people have particularly delicate sense of taste so some things, especially when strong, can cause nausea. Not everyone with fibromyalgia will experience all of these symptoms. If you experience any of these symptoms for the first time, you should ensure it’s checked out properly and it’s not automatically put down to fibromyalgia – it’s all too common for doctors to blame all the symptoms on it. If in doubt, ask for a second opinion. I manage my symptoms with regular exercise and making sure I get plenty of rest. It’s a full-time job to limit the impact of the symptoms on my life. I have to work hard to make sure I get what I need in order to be able to function. I often get comments like ‘you’re so lucky’ when people hear that I find time to go to the gym regularly or I have time to rest. I don’t think these people understand how much I struggle and I don’t have a choice. I have to organise my life around my symptoms. I find it difficult to get the balance right between letting people know I’m suffering and not going on and moaning too much. It is possible to manage all symptoms of fibromyalgia providing you get the right support.