Monday, 21 December 2015

But you don't look sick: Fibromyalgia

Having an invisible illness is incredibly hard, not only because of the symptoms, but also because of the general view of others that you can't be sick as they can't see it. 

With fibromyalgia there is a wide range of symptoms, the main two being chronic pain and fatigue. It is a vicious cycle, if your pain is bad you can't sleep, which then makes your fatigue worse...which in turn makes your pain worse. It's never-ending. 

Another symptom caused by pain and fatigue is often known as 'fibro fog'. This is when it almost feels like there is a fog around you, interrupting your thoughts, making you forget what you where doing, saying, or even why you walked into a room. For me this is one of the hardest things to deal with. Back when I was 'healthy' I prided myself on my I ask the same questions 3 or 4 times, forget what I am saying in the middle of a sentence, and generally can't remember what I am doing at many times during the day. 

The main way I can describe fibromyalgia is that it is frustrating, isolating, and incredibly unpredictable. What you are able to do one day you might not be able to do the next, some days you might not even be able to get out of bed. And let me tell you, I have days were it takes all my strength to stand up and even smile. I find fibro so frustrating as I can't do things I once could. I can't take my dog for a walk or play with my little sisters. I can't even spend the day shopping without needing to use my cane. And I truly hate that. I can't be the 20 something I am, or rather should be. Instead I have to pace myself in every single thing I do, cancel plans because of pain, and sometimes not leave my house at all. That's what makes it so isolating. The fact that you can't socialise the same as others, and many fibro Warriors find that they are unable to work due to their symptoms.  

Currently I still work, and let me tell you, some days I wonder how I manage to get through my shifts. Often I come home and sleep, even if it has only been 4 hours at work. Any activity can drain you, even getting a shower can be difficult. Personally I take baths instead of showers, as the pressure of the water hurts. This is one of the annoying and aggravating things about FM - even the slightest touch can cause you extreme pain. From the touch of your clothes, to a gentle hug, anything can hurt. 

With fibromyalgia your body interprets pain signals differently. In our case, the pain signals are heightened, meaning things that shouldn't cause pain do. 

As well as this, fibro sufferers often have a heightened sensitivity to noise, light and even smell. Personally I can't be in a overcrowded room, not only because of my anxiety, but also because the noise is too much. It's almost like you can feel it vibrating throughout your body. The same goes for light, I can't stand bright lights as they hurt not only my eyes but also make my headaches worse. With smell it is difficult. I can stand it if there is one smell in the room, but if for example I am in a shop where people have been spraying perfume, I find it hurts. 

One other thing about fibromyalgia is that as well as being unpredictable, it can be totally different for someone else. No two patients are the same, which often makes it hard to diagnose. The current diagnosis is formed through the patient having at least 11 out of 18 pressure or tender points. 

I had 15. 

As with any health problem, the key to fibromyalgia is getting the proper and right treatment. For me this is medication, massage, rest of my bad days, and plenty of support from my family and friends. Others may find things like yoga or acupuncture helpful. Trial and error is key. Find what is the right fit for you!

If you would like to know more, Pinterest and a Twitter are fantastic for gathering information as well as connecting with others. 

Until next time,

Naomi x

1 comment:

  1. Thank you for sharing all of this. It's hard to put the different ways it affects us into words, and you did it well.