Back in November I started with what felt like an achey growing pain in both my shins if I had been on my feet all day. These pains became more frequent and then in January spread to my thighs. I also started feeling what I can only describe as a thick bubbly pain in my thigh muscles. Then at the end on January when we all thought it had stopped going round, I got the norovirus (worst experience of my life, I genuinely thought death was upon me!) I wasn't able to keep food down for 6 days and because I was so weak I noticed the pain was getting worse. After that the fibro was really coming on thick and fast. I never regained the strength I lost whilst I was ill with the virus. I was so fatigued, I started feeling this aching pain in all my muscles. I would get tired from walking anywhere, I could barely lift my arms up without feeling this same pain that I had in my legs. Meanwhile every time I went to the doctors I was told to "come back in four weeks if you're still not better".
Finally, in March, I was referred to a local musculoskeletal clinic that had just opened. By the time my appointment came around I was feeling pretty frustrated that nothing had yet been done to investigate why I was in pain. I was so weak at this point I was struggling to walk without someone to hold on to. The MSK doctor and a physiotherapist examined me and decided I should go straight to the hospital to see a neurologist as he was very concerned with how weak I was and that I was breathing quite quickly after being asked to lie flat and lift my legs up (FINALLY!! someone who believes me!).
Off we went straight to hospital, I was given a bed and then we waited. It took a while for a doctor to arrive, when she did she told me she was the on call doctor (not a neurologist) and she examined me just the same. Eventually (7 hours after arriving) the decision was made that I come back in the morning to see the rheumatologist. So I did and he said as far as he could see, there was nothing wrong with me and suggested I see a neurologist (!!). He also sent me for an X-ray of my pelvis to see if there was any damage that could be causing the pain. I was booked in for an MRI scan a couple of days later and after spending 9 hours in hospital that day, I was sent home and told I would get a referral to see the neurologist.
A few weeks later I received a phone call telling me that my referral to neurology had been cancelled, completely out of the blue, and told to make another appointment with my GP if I still wasn't feeling better. By this time I was in agony 24/7 and already considering leaving university as I hadn't managed to turn up for a full week in months. I made the appointment at my GP but this time I was seeing a different doctor to usual (this is where my fab current doctor comes in :)). My parents came along to the appointment with me as they were getting more angry than I was. We went in ready for a fight and all it took was a brief explanation and she just sorted it. I had an appointment made with the neurologist in no time and was given fortnightly appointments to keep up to date with how I was which I still keep up now. I think it is important to make regular contact with my doctor because I am still getting used to fibro myself and sometimes a new kind of pain can be scary, she keeps my mind at rest and checks that its just the fibro and not something else.
By the time I saw the neurologist I couldn't walk without using a walking stick. I had a horrific amount of pain in my legs, hips and lower back. I was having trembling fits 2-3 times a day. I would go faint every time I got up. I'd faint doing pretty much anything. I think because my body was so weak, I always felt out of breath so that probably didn't help the fainting!! That and all the blood that was being taken from me for tests!
When I eventually saw the neurologist, he couldn't see much wrong with me either when he examined me. So he sent me for an EMG test (second worst experience of my life! I don't often cry because of my pain but that test was so painful I couldn't help it). He told me that he had ruled my symptoms and test results down to either fibromyalgia, or this very rare nerve disease that I can't remember the name of, and the EMG test would show if it was the rare nerve disease. If the results from the EMG came back normal, then he would diagnose me with fibro, which he did.
On top of the leg/hip/back pain, I regularly have horrible sick and dizzy spells, weak and achey wrists, my balance is awful but that's mainly down to my inability to walk. I can't stand straight because using a walking stick all the time has thrown my posture. The pain I sometimes get in my tummy makes me go hot and cold, hot and cold and feel so sick. My left hip and knee like to collapse when I walk. I still have trembling fits but not as regular, however I am always a bit wobbly (if I try to keep still it gets worse).
Once, when scrolling through google, I was reading a post by someone with chronic pain and I can't remember who it was or the exact quote but it was something to do with
when you live with chronic pain, the pain becomes your friend, if it goes away you miss it. This really got me thinking, how can pain be your friend, why would you miss it when it goes away? All I want is to be pain free! But now I think I understand where this person was coming from. My pain has become a part of me. Because it has completely taken over my life, it effects every single thing I do, I think I understand. My life has altered to live with this illness so if it did go away, it would be strange to live without it. It would be amazing to live without it though!! If that makes sense :/.
To anyone who is currently battling a diagnosis, the reason the doctors take so long is because they have to rule out loads of other rubbish first, however if, like I was, you're being told to "come back in four weeks if you're still not better", give them a good shouting at!!
Keep smiling!
XX
