Hi everyone,
I've been on this forum for a couple days and making posts, but I haven't really introduced myself properly, so I thought I'd tell you a bit of my story:
When I was a child, I was always getting sick and I had a lot of pains. My parents told me they were "growing pains". Between the ages of 12-16, I was no longer growing but I was still experiencing these so-called growing pains; I wondered what was wrong with me. I was diagnosed with IBS, allergic rhinitus, dermatitis and my care plan warned that I had low immunity and was susceptible to the flu and pneumonia. When I was 16, I was over at a friend's house, helping her to do Maths homework (since I was good at Maths and she was 9 at the time - yes, I'm friends with someone 7 years younger than me, but trust me, a 9 year old can be a lot less b#$%^y than adolescent girls can be) when suddenly I couldn't figure out 2 x 3, much less how to explain the concept to her. My bones started aching, my muscles starting spasming and screaming out in pain, my head started throbbing, I felt abnormally hot, I was nauseous, I felt very weak and drained and tired all of a sudden - the headache had been coming on for about
half an hour, but all the other symptoms appeared within the space of a minute (2:13 on the Sunday afternoon - I'll never forget it). I told my friend's mother how I felt, and she felt my forehead and confirmed that I had a temperature. I laid on the couch and my friend's mum got me an ice pack and put a fan nearby to blow cool air onto me. I could hardly concentrate on the TV show that was playing and I couldn't understand why I couldn't comprehend what was happening in the show. Naturally, I took the next few days off of school, thinking that I had a really bad flu.
After two weeks in bed with no vomiting or diarrhea like I should have gotten had it been the flu, I started going to school again - just 2-3 days per week. I had to catch the bus for half an hour each way... it was so painful, bumping up and down; too loud, school kids laughing and shouting and squealing. Eventually, I couldn't go at all. I was told my academic record was in jeopardy for being off of school without a doctor's certificate. The doctors weren't helping me at all. One day, my mother (who thinks she has chronic fatigue but has never been diagnosed with it) was reading a book about
Chronic Fatigue Syndrome and Fibromyalgia. She said to me, "Renae, take a look at this list of symptoms and tell me if you think they sound like what you're going through. Because they seem an awful lot like the things you keep complaining about
." So I read the symptoms and I was like "Yes! This is it!" But I knew I'd have trouble convincing the doctor if I came in to the doctor's office sounding like I'd diagnosed myself.
So I went through the book over the next several weeks (it used to take me a day to read a book) and any time I came across a symptom that I had, I would write it on my list. By the end of the book, I had 2 A4 pages (back and front) of symptoms written out. I took this to one of the doctors at the clinic that I hadn't seen before. She read it and said, "I think you have fibromyalgia and chronic fatigue." I just nodded. By this stage it had been 2 months since I became ill.
I went through some testing and only slight abnormalities were found in my levels of various variables. I was referred to a rheumatologist who I had to wait for ages to see. In the meantime, I went to the doctor in the clinic who is known for giving quick diagnoses and prescript
ions, and got a diagnoses of fibromyalgia so that the Education Department would stop forcing me to go to school which was clearly making me more unwell. I saw the rheumatologist eventually, and she arranged for me to go into hospital for 4 weeks for more testing to figure out what was going on in my body. I waited about
a month to hear when I could go into hospital. After half a year of being intensely ill, I was starting to feel a little better and my mum was hopeful that I was making a full recovery. I remember sitting on the lounge room couch (like I always was) when the phone rang. My mum answered it because I didn't have the strength to get up to answer it. After a while of my mum listening to the person on the other end of the phone, I heard her say, "Actually, she's feeling a lot better now. She doesn't need to go in anymore, thank you anyway." I felt panic rise within me as I heard her say these words. Who was she talking to? Was she talking about
me?? Was she stopping me from going to hospital???? "Mum!" I tried to yell, but I didn't have the strength to even do that. "Mum! Who was that? Was that the rheuma... rheuma... special doctor?" My mum replied, "Yes, that was the rheumatologist. She said you could go into hospital next Monday. But I told her you don't need it anymore." I was frantic by now; my fear had been realised. "No, Mum! I need to go to hospital! I want to know what's wrong with me!" She looked confused, "But I thought you said you were feeling better." The conversation continued, but I can't remember the rest of it. I never got to go to hospital or get anymore testing. Now that my health records said that I have fibromyalgia, no doctor will test me for any similar conditions, even when I explain the situation to them. I'm still sick and I still don't know what's wrong with me; it quite possibly is fibromyalgia, but I'd like to actually KNOW if it is or not. I am so frustrated that my mother never called the rheumatologist back to say that I would like to go into hospital, after all. She said that hospitals weren't fun places to be, anyway. EXCUSE ME? You thought I wanted to go to the hospital for FUN???
I eventually became well enough to complete Year 12 part-time in the following year. I am now studying a general Health Sciences degree part-time at university with the hope of course-switching into Occupational Therapy.
There is only one doctor in the state where I live (Western Australia) who specialises in fibromyalgia and chronic fatigue (apart from rheumatologists). I finally found his details the other day and I've booked in to see him - but I have to wait 9 months for the appointment because he's so booked out! Wow, is he in high demand! I've read some good recommendations online by people with fibromyalgia who have been helped by him, so it should be worth the wait.
Anyway... so know you know a bit of my story
Just wondering... is there anyone else on this forum who was under 18 when they were diagnosed (or thinks they should have been diagnosed before they turned 18)?
I'm really glad I found this forum... it's great to finally share my experiences that only people with fibromyalgia could truly understand.
Jasmine Grace