Fibromyalgia is quite a complex health condition that is often initially triggered by a traumatic experience. It was childbirth that triggered mine and I was officially diagnosed when my daughter was 1 year old. Interestingly I did not feel that my childbirth was particularly traumatic - not in terms of my mental health. There is no doubt that it was traumatic for my body as it ended with an emergency ventousse delivery. Perhaps it was stressful mentally but I only remember the good parts and that she was healthy.
When my Fibro first reared its ugly head it started in my arms and shoulders. I would wake up in the morning and they would be frozen and so painful I couldn't even lift my daughter out of her cot. I pretty much knew what the problem was because my mother also suffers with the same condition. I was not sure I wanted a diagnosis on my record because it would not benefit me in any way, usually quite the opposite. I did not want to be considered disabled. However I did eventually have to see a Rheumatologist because it was severely limiting daily living and ability to do things with my little girl. Incidentally I was also diagnosed with Joint Hypermobility Syndrome at the same time - I found this amusing as I had never realised I was actually quite flexible; in all the wrong ways anyway!
I was prescribed a medication to relax my body at night and block nerve pain which I found really helpful and the pain and stiffness improved a lot. For a period of about 5 years my Fibromyalgia wasn't bothering me so much, I could cope with my medication and regular pain relief. It wasn't until I lost my dear Grandma that my physical health also started to decline - partly due to abusing my body with my eating disorder and over exercising. Since my mental health breakdown things have really kicked off. Unfortunately, being in so much pain then ends up causing further depressive symptoms because in a nut shell...it sucks!
Mornings are the worst time, I dread waking up every single day because I have no idea what I am going to feel like. I always feel tired and could literally fall asleep any time of the day if I wasn't in too much pain. There are days when moving my head makes me want to cry because my neck and shoulders hurt so much. Some days my body doesn't work properly and getting it to respond to what my brain wants it to do is difficult - like there is some kind of delay in the message reaching my body. I get such awful nerve pains in my arms and legs that literally stops me from being able to fall asleep for a whole night. More recently I have also started having trouble swallowing, so sometimes I can't even eat a meal after preparing it - this symptom scares me and makes me panic a little until it goes away again. It is all very disheartening because I am only 31 years old and can't do the same things that other people my age can. I am old before my time!
I recently had my hair cut off because I can't manage to take care of it when it is long - blow drying and straightening is so painful. I plan to go even shorter soon so it is as manageable as possible. Fibromyalgia is a truly horrible condition to live with and I wouldn't wish it on my worst enemy. It is unpredictable and affects everyone so differently as the symptom list is so very long. Part of me feels as though it is a 'cop-out' diagnosis when professionals cannot figure out what the problem is. It seems like an umbrella term used for unknown chronic pain disorders. There is so much conflicting information out there that it is impossible to find reliable and valid research on it. One thing I do know is that once you have been labelled with it, it is hard to shake and doctors will try and blame everything on the Fibromyalgia, rather than actually checking if there could be another cause so you have to be prepared to fight!
One challenge of this condition is that it is a totally invisible illness. you just can't see it. I look like a 'normal' healthy person. I would like to say that awareness of invisible illnesses has improved over the last few years, but my experience suggests otherwise. My employer were a nightmare - just getting a desk assessment so I could work comfortably was a massive fight, and they would happily throw me under the bus because they couldn't understand the importance of routine, effects of medication at certain times and my need to take walk breaks when at the desk all day. If I am still too long, things seize up!
The pain medication I have to take can be debilitating in itself. I take a drug that is stronger than morphine and even then I am not 100% pain free. This impacts my ability to drive too because I am not safe or legally able to do so after using the medication. It has such a huge impact on our lives and makes even basic things difficult to manage at times.
If I could wish for anything, it would be to feel healthy again and have a chance to re-do the last few years to look after my body.
The included diagram is by no means an extensive list of symptoms, but it is a good place to start in terms of raising awareness. I also hope this post helps people who know me understand why I can struggle so much with social things because I worry that people think badly of me. But believe me, it is more an inconvenience for me that it is you!
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