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My Difficult Journey with Fibromyalgia and Complex Regional Pain Syndrome, by Alina

Alina

Hey there, I’m 19 years old, (from London, UK) and I suffer with multiple chronic pain illnesses, fibromyalgia being one of them. One day, at the age of 16, I woke up with some pain in my right wrist. It was totally random. I hadn’t injured it; I hadn’t banged it on anything, it was just totally random. For the first couple of days, I fought through the pain. By the 3rd day, I couldn’t move my wrist at all. I was crying in pain. It was excruciating. I kept going back to the doctors and hospital, however they had absolutely no idea what was going on.

One doctor admitted me into hospital to conduct some tests. I was stuck in that place for over a week. It was driving me crazy. I couldn’t do anything for myself. I couldn’t shower, dress, eat, or write by myself. It was agony.

I can never forget the time the doctor came to my bed in the hospital and told me that I have complex regional pain syndrome.

His advice was, ‘I know it hurts, but either you move it or you lose function in it for the rest of your life’. That was all he said and then he left. I was so confused. I knew nothing about the condition.

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By the end of the next couple of weeks, the pain had spread to my right arm and my shoulders. By the end of the month, it had spread to my legs and the left side of my body. I was bedridden. I had so many plans for my school summer holidays, but I couldn’t take part in any as I was so unwell. I spent my holidays in and out of hospital, pretty much every other week. The pains even took to my head and a year and a half later, the pains had spread internally to my stomach. I was put on so many medications which did absolutely nothing but give me side effects. I was given a walking stick to help me walk which was so difficult.

No one understood my condition. In fact, still to this day, not many people understand my conditions.

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I’ve had medics tell me that it was all in my head. Very quickly, I was then diagnosed with chronic widespread pain and fibromyalgia. I didn’t understand why my pain had spread to every part of my body but after being diagnosed with these, it made sense to some extent. 

I will never ever know or understand why and how my pain started, but all I do know is that in the last 3 years, I have felt nothing but pain. There has not been a single second where I don’t feel pain. It took me over a year to teach myself to walk again, to carry on with my education, to teach myself how to write, and feed myself again.

The last 3 years have been the hardest years of my entire life. It took me a very long time to accept that this is now my life. During my first year of diagnosis, I was bullied badly. People told me I was ‘faking’ my pain, that I deserved to die, that I was a liar and an attention seeker, etc. I had people move my walking aids from one side of the room to the other and then laugh when I couldn’t pick it up by myself. I became so anxious and upset by this. I had some very, very low times in my life. I tried my best to fight through them all, but I got to a point where I wanted to give up. I didn’t want to live anymore. It took a LOT of time and patience to come out of that. Even now, there are times where I just can’t find it in me to keep fighting anymore.

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Dealing with so many changes in your life and all this pain can be exhausting. I started to document my story on my very own Instagram page, @fibro_women. I want to help other people and make their lives a little bit easier. I want to educate people on chronic illnesses like mine!

I currently have a place at university, as I realised that I can’t let this pain dictate my life!! I must keep fighting! There’s a lot that I still struggle with but I’m trying my very, very best. Life is so difficult, but I try to see the positive in every situation. This is so hard in itself! I’ve learnt that it’s okay not to be okay, it’s normal. It’s something that I, and no one else, should beat themselves up about. 

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Often, when I feel down and mentally/physically not in a great state, I try to relax myself. CBD bath bombs (from lifeinhealth.co.uk) are the BEST for exactly that! As I mentioned, many of the treatments and medications I’ve tried (such as gabapentin, pregabalin, morphine, codeine, naproxen, lidocaine infusions etc) really do not help at all. I turned to CBD products and at first, I couldn’t find anything that helped to relax me. Then, I came across this website! For the last year, I’ve been using their CBD oil, bath bombs and cream. Their products are incredible! They do not take the pain away, but they help me to move my body a little easier. They relax me and help with my anxiety! I’m ever so grateful for them!

Hydrotherapy is something that I find is very important to me too! I strongly believe, if it wasn’t for hydrotherapy, I wouldn’t be walking today. During my flares, I find it so helpful to relax and build up my muscle strength. Unfortunately, I’m not sure if I’m allowed back into hydrotherapy as the last time I was in the pool, I fainted. I’m currently being investigated for a heart condition, POTS/Dysautonomia. It is highly likely that the cause of me fainting was my high heart rate. My physiotherapists just need to make sure it’s okay for me to be let back in the pool. 

Every day is different and unpredictable. Every day is a struggle, a fight that I’m struggling to fight. I know I’m trying my best and my best is all I can give. I will always be here for anyone who ever needs to talk. My journey with fibro, as well as the other chronic pain illnesses, will continue to be a difficult one but I know that I can do this. I can’t let the pain win. And nor can you! Just know, you’re not alone. You can do this. No soul is burdened with more than it can handle … never forget that.

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You are not alone

References:

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