I haven't blogged in an incredibly long time but, I can't shake the feeling that I need to write about this and get it out of my head. On the 2nd of August this year, I was diagnosed with Fibromyalgia.  Lots of people have never heard of it, so I'll give a bit of an explanation. It's a Chronic condition that causes pain all over the body.  The pain is the main symptom and the worse one to try and manage but it also causes; increased sensitivity to pain, fatigue, muscles stiffness, difficulty sleeping, problem with memory and concentration (Fibro-Fog), headaches and irritable bowel syndrome (IBS).
Lots of people with Fibromyalgia are not taken seriously with their symptoms and it can take YEARS to reach diagnosis. Luckily my GP is fantastic, as was the Rheumatology Consultant I seen - I was diagnosed 6 months after my symptoms started. Initially due to my age, my GP and I thought it was just a bad viral infection and I tried to ride it out but it definitely got harder to deal with, and he was very proactive when it was apparent that this was not going away.  I seen my Rheumatologist and in that very first appointment, with a bit of poking and prodding of my joints - I got my diagnosis.

Being that I'm a nurse, I had done a bit of research into my symptoms and what might be wrong with me. Fibromyalgia was one of the conditions that I looked into - but it was the one that I didn't want.  All of the others that I looked at were curable, or could be fully managed with medication that would put them into "remission" and I'd feel completely normal, well and like myself again. Fibromyalgia is incurable - there is no treatment for it. That was difficult to take. I'm a problem solver, but this is one that can't be. All that can be done for Fibro is management of symptoms.  It is still being researched, so I'm hopeful that a cure will come one day.  It's a strange condition - it can just randomly go away, and no one knows why - or you can have it for life.  Pregnancy also puts it into remission, and they don't know why.  All the 'don't knows' are so frustrating for me. I could cry with frustration to be honest. I want and need answers.  I had already been put on pain medication by my GP when I seen the Rheumatologist, and he said that as there is nothing different that he can do, I could just stay under the care of my GP.

The pain is difficult to describe, it's like a severe ache through the muscles and right into the bone - and I feel the pain in my bones. My joints feel tight and swollen and difficult to move them. The pain is worse when I move, even just a little bit. Doing repetitive movements becomes agony - like stirring a pot or trying to wash my hair. I only feel okay when I'm lying down and not moving. I'm exhausted most of the time, but I can't sleep well. Usually when I feel unwell and I'm really tired I'd nap during the day which would help, but I just lie there with my eyes closed and don't actually get the nap.  It's the same most nights too, I feel like I've lay all night with my eyes closed which then affects my day, and actually makes the pain feel worse too. My memory is pretty poor, I have to put EVERYTHING in my phone calendar - like even little things like when I'm seeing friends.  And I have reminders in my phone for my medications so I  don't forget to take them. I forget my words when I'm talking and lose the thread of conversation really easily, and I can read something and I've completely not taken it in and I have to read it again. My pain threshold has completely changed, I would've said that before my pain threshold was really high, but now I can't even manage anything. If I'm sitting on the sofa with my boyfriend with my legs over his knee, if he rests his arm on my leg I have to ask him to stop because it feels like he's driving his pointy elbow into my leg at full force and it hurts. It's just strange and difficult to deal with.

In the beginning was taking pain killers for quite a while, maybe around a month and a half and they were working well, I still didn't feel completely normal or anything - but I was able to work which was important to me - although after work I was coming home, having dinner, shower and straight to bed at 8pm due to the fatigue.  I then hit a problem that often occurs with Fibro (and they don't know why), the painkillers weren't working and I was in unbearable pain.  I was scared to up my current medication and I was scared to change to more extreme pain killers.  I had to though, I was struggling to function more and more.  So I upped the medication I was on a little bit. I was taking Naproxen 1 gram daily (maximum dose of this medicine) and 8/500mg cocodamol, 2 tabs 4x a day; and I changed my cocodamol to 15/500mg, 2 tabs 4x a day.  My body really didn't like the increase in codeine and I was having a lot of stomach problems as well as it not making a difference to my pain. Work was becoming more and more difficult but I was still forcing myself to go, despite not meeting my targets.  My boss was quite sympathetic, so she wasn't really putting pressure on me - but I was putting it on myself. I was in denial of how unwell I am and how truly terrible I was feeling.  I ended up going back to my GP because I wasn't coping with the pain.  And I got started on low dose, but more extreme pain relief (used for moderate-severe pain).  He changed me to Tramadol 50mg 3x a day, Gabapentin 300mg at night and the Naproxen stayed the same. Two weeks into taking this and I was feeling worse which I didn't know what possible. Work was a bit of a joke at this point, and it was taking me 4 times longer to do things than it should've.  Eventually my boss had to tell me that the higher up bosses weren't chuffed with my lack of productivity and I either needed to drastically cut my work hours or go off sick because I'm too unwell to work.  Reaching this point caused me to have a bit of a break down.  I cried and cried and couldn't stop. I couldn't pretend it wasn't happening anymore, and that I could just function like normal and that everything would be fine.  I phoned my GP straight away to be honest about what was going on, and how I wasn't coping at all. So we devised a plan of slowly increasing my medications and decided that signing me off of work for a while, firstly to give myself a proper rest - which I hadn't done since I first became ill and to give myself a chance to get my condition under better control so that I can manage a bit better.

Right now I'm still struggling. Increasing the medication is coming with it's own problems, such as dizziness, increased tiredness and lack of appetite. One of the things that is getting me through is the brilliant support and care of my boyfriend and my family. I couldn't do it without them.


ps. I need a new name signature, I think I've grown out of that one!