The journey to getting my fibro diagnosed was a long one and one that was done over a few years!
I first started showing signs of what i now know as " Fibro" back in 2015. I remember the morning like it was yesterday. I woke up like it was any other day but this day was different...
I woke up sat up as you do put my legs on the floor and wow! the pain was absolutely CRAZY. I sat there for a moment thinking what have i done? what did i do yesterday to cause this? The answer was NOTHING! i had a rest day the day before due to a PCOS flare up and having a head cold so there was nothing i could have done to cause an injury.
I sat there for about 10-15 minutes puzzled by why i was in so much pain.... I then thought well lets try stand up and walk around and see if that helps ease the pain maybe i slept in a funny position and that is what caused the pain... I tried to stand and fell back down onto my bed.. Not only was i sore i was experiencing muscle weakness in my legs as well. I knew at that moment that this was something more then just sleeping funny but had no idea what it was going to mean.
After about 1 hr i was able to move enough holding on to every wall in my house to walk to my arm chair in the lounge. This is where i stayed for the whole day as i couldn't move without falling over. I waited until my husband came home told him what was happening and he wanted us to go to the hospital but i was still on the train of thought that i would have been some kind of injury and it would be fine the next day. So that night he helped me to walk around to go to the bathroom and get something to eat & drink. The next morning i woke up with the same issues. Now scared i rung and booked an appointment with my GP to find out what was going on. Lucky for me the GP was across the road and it was for the following day so Day 3 of this issue i walk across to my GP struggling to walk there but i got there and tell her what is happening and her initial diagnosis was " Well you are overweight so you can expect to be in pain like this"
I was so shocked by this comment and walked out and burst into tears. I went home and it was 2 weeks before i could function properly. That whole time i would struggle to get up from bed to my chair and once i was in my chair i would stay there all day until my husband was home to help me move around the house. It was a nightmare! I was too scared to go to the hospital because if my own GP wouldn't help me then why would another doctor?
Finally after 2 weeks the pain and weakness got less and i was able to start functioning again. I still had a LOT of pain and weakness in my legs but at least i could walk now. Then one day i was on the phone to a close friend and she was telling me how she had been diagnosed with a condition called Fibromyalgia i have NEVER heard it before and being the person i am and wanting to be able to support my friend i went and researched the condition so i could understand and be supportive.
I started by reading the symptoms and was like WOW! i have pretty much all these symptoms that is a little strange. The more i read about and the more i chatted to my friend i quickly realized that i might have this condition too. So i booked an appointment with my GP and asked her if that is what it could be. Then came the next part of the journey! I was certain that this was the answer to my problems but the hard past was actually getting the diagnosis.
When i went to my GP i had list of Fibro Symptoms similar to this image and i had circled all the ones that i was experiencing. She took a look at the info i had brought with me and said " wow this actually might be what is wrong" I then said that is what i thought too now what do we do? Her reply was " Unsure i will need to find out" So that was that for that appointment. On the way out she said book an appointment for next week and hopefully i know what to do.
The following week i went back and she said so all i need to do is a pressure point / Tender point test ( Picture of fibro tender points below) and that will diagnosis you so she did that! GEE !! That hurt and it hurt for days after too!! After she did that test and discussing my symptoms again she said yeah its probably fibro. I was like umm probably? Can't we get a definite answer ? She said not really its just one of those mystery conditions that we don't know much about. I am going to say it is so i now advise you to research the condition and buy a walking stick because you going to need it! That was it! No help at all! No medication help NOTHING at all! Just go buy a walking stick! This was June 22 2015 i was 20 years old had just gotten married in the February and your telling me there is nothing i can do but buy a walking stick? I was so lost , angry & upset i just walked out.
I then rung my friend who has been diagnosed a month or so before and asked her what her GP did to help her and was even more angry when i learned there was things my GP could do but was not doing.
I then did all the research i could on treatment options and presented these to my GP at every appointment i went to and every time she shut down every option telling me that none of it would work. Just keep living the best you can was her advice!
I was starting to get very very frustrated and began looking for a new GP as i needed to find a way to get help. I moved to my new GP and told her i had been told i had Fibro but my previous GP was no help and my new GP said oh really? its not on your file! We then discussed my symptoms that lead to my previous GP diagnosing fibro and she did agree it could be fibro but needed to rule out it being any more serious. So she ran some test and booked me an appointment for the following week once the results were back from the test so we could discuss. ( Just a side note to this : When i called my previous GP to ask why it was not on my file the response i got was " I wasn't convinced it actually was fibro so i left it off you file"
The next appointment i had with my new GP the blood results were in and it showed a few abnormalities so i was referred to a range of specialists to rule out other possible conditions. I saw a neurologist as my GP was concerned i had MS (Multiple Sclerosis) this was ruled out by the neurologist and he was certain it was Fibro however he couldn't give me the actual diagnosis my GP needed to so after 6 months of waiting , tests & specialist under my New GP i was officially on my record diagnosed with Fibro on the 21st April 2017. I have had fibro symptoms since 2011 in a mild sense but this got worse in 2015 and has been something that fluctuates since then.
Getting diagnosed was a hard journey! Doctors struggle to be able to figure out a diagnosis for a condition with such a massive range of symptoms! One of the things i did and was praised for by every doctor & specialist i saw was i tracked my symptoms. I created a document on my computer that had all the symptoms i had on a daily basis and then each day i colored in the box next to it with how bad that symptom was that day. So for example Leg pain - box next to it colored either Green , Yellow or red . Green being - Little or no pain , Yellow being medium pain & Red being extreme pain. I did this for EVERY symptom and took it with me each appointment to show how things had been! This was appreciated by all the doctors and specialists as it helped them figure things out!
I was also documenting in a journal EVERYTHING! I would write about my day things like today's weather was sunny , stormy , raining etc i documented what i ate how i slept how i was feeling eg happy , sad , angry etc! Documenting what i ate as well! This was helpful for me to see if there was any connections to my bad days and the weather or something i ate etc.
From my journal that was how i learned that the cold , the extreme heat & stress triggers my Fibro MAJORLY! Once i learned that i was able to learn how to manage those things to minimize the fibro flare.
If you have any further questions in regards to my journey with Fibro please contact me via my social media platforms OR email me firstname.lastname@example.org more then happy to discuss this more with anyone who is wanting more information.