I have Fibromyalgia. It sucks.
Almost three years ago I went to see the doctor as I had been getting a lot of headaches that were becoming more frequent and stronger in intensity. Quite often they would make me feel like I was going to be sick and I started to see what I could only describe as ‘snowballs’ travelling down the side of my right eye. For months I put off going to see the doctor as I thought they were just migraines, but eventually they got unbearable so I made an appointment. The doctor sent me for an MRI which showed that there are ‘white spots’ on my brain. At first they thought it was MS, but after a lumbar puncture that was ruled out and I was diagnosed with Fibromyalgia. Fibromyalgia effects all of its sufferers differently. I have a constant headache, aches and pains all over my body and a permanent feeling of fatigue with very low energy levels.
My sleep is often disturbed by Fibro, sometimes I will struggle for hours to get to sleep as my brain doesn’t want to switch off. On other nights I won’t be able to get comfortable due to pain in my arms or legs, or a crushing feeling in my ribs. On the nights when I do sleep I still wake up feeling as if I have been awake all night. It is exhausting. To wake day after day and not feel refreshed at all is just horrible. It makes me so sluggish, I struggle to clear my head, to focus my vision and to just do basic things like get up and get ready for the day ahead. The tiredness makes doing the easiest of tasks, such as having a shower, feel like I have run a marathon and when you combine that with the aches and pains it’s miserable. The aches and pains move all over my body, so I never know what’s going to hurt when I wake up each morning. Recently, the pain in my shoulders and arms has been awful, it has been hard to lift my arms and almost impossible to raise them above my head without it shooting pain running across my shoulders. Tomorrow I could wake and find that it’s my ankles or knees that are in pain, it’s like a pain lottery!
I won’t give in to the pain and tiredness though. I will keep fighting it for as long as I can, because if I give in I don’t think I’ll ever get back up again. I take Amitriptyline to help relax my muscles (although this comes with it’s own set of problems) and I have regular sports massages to try and release some of the tension in my body. The massages hurt like hell, but they do seem to help a bit. I’m sensible about what I can and can’t do, on a good day I will push myself and do as much as I can while I have the energy. On a bad day I do as much as I can cope with, I go to work, I cook the dinner, I walk the dog and that pretty much wipes me out. I know that if I do more than the bare minimum on a bad day my body will punish me for the next few days.
Certain things make my Fibro more manageable and help to dull the pains. I’ve cut out white bread and drinking Coca Cola, and this has had a huge impact on reducing my headaches. I do still have the odd bit of white bread or glass of coke if there’s not a better alternative, but it’s not enough to make me feel worse. I limit the amount of tea and coffee I drink too, this also helps with the headaches. I keep warm, my body cannot cope with being cold and the pain becomes excruciating if I get really cold, although this doesn’t stop me wanting to go skiing! When I first saw the doctor about the headaches it was winter time and she advised me to wear a hat, both indoors and outdoors, as often as possible so that my head didn’t get cold. Now that the headaches are under control I don’t have to do that anymore. I spend as much time in the sunshine as possible as this helps reduce the aches in my body. When we go on holiday I notice the difference within a couple of days and my energy levels start to increase. I would love to be able to move abroad and live somewhere hot – or just have lots of holidays!
It is such a frustrating illness to have because on the outside I look fit and healthy, but inside I am absolutely shattered. People don’t understand that just walking around the supermarket doing the weekly grocery shop is exhausting, or that hanging the washing on the line makes my arms scream in pain. I do my best to hide it from everyone because I don’t want to be the person known for whining about her illness, so I put a smile on my face and just keep going to the best of my ability.