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My name is Ellie, single girl, aged 20.
Was diagnosed 2 years ago but I have been experiencing symptoms since I was 14. Everyone kept on telling me it was growing pains, ‘all in my head’, ‘have no idea sorry’.
My first symptom was achey, sore down the right side of my body that was it. Then it moved after about a week to both my legs and just it. But ever since round and round and now just about everywhere.
My current symptoms; fatigue, pain, memory loss, lack of concentration, depression, forgetfulness, weird sensitivity, stiffness, fibro fog, waking up feeling like i have not had any sleep, headaches, IBS, dizziness, numbness, pins and needles, anxiety, and so the list goes on. Never ending. I have also just recently started having mild panic attack – freaks me out!
I also have mild cerebral palsy, was diagnosed with that when I was 3. And of course, I remember that very well! I pretty sure I have CFS as well, hand in hand with FM really – but docs say ‘no’.
Yes, I am still working. My job is a key carer, in a pre-school. It is destroying me and I hate my job for so many different reasons, mainly the affect it’s having on my FM.
I have not filed for disability, all my friends with FM are having so many issues, so frankly, what is the point? Just to cause me more stress?
So many people, general friends, doctors, family and other people with FM have told me to exercise, it will help me a lot. But I have not found any benefits at all only more fatigue and more pain. But I do do stretches as this helps me get moving in the morning, particularly work mornings when I can’t just take my time. I also walk to and from work. But that about it exercise wise.
FM has affected every aspect of my life, apart from work and church groups and visiting my best friend weekly, I’m in my room or at least in my house, I can’t cope with to many things outside work, as I know i’ll pay and particularly last night is a no, no – if I can avoid it!
Cold weather makes my symptoms a lot worse. I tend to do better in a warm bath/shower – but boy, does it wear me out.
When I first got ill before anyone knew what it was, many hours off school and many hours in A+E with a couple of over night stays. I went to a rehab programme, consisted of physio, phycology, occupational therapy and hydro therapy, in February this year which was so much work. But the hospital recently discharged me as it was a children’s unit and they also wanted me to be closer to home. I was gutted and still am to a point because the psychologist I got on with, I trusted him so I could open up to him (and trust me that can take forever and hate discussing myself and I'm a very stubborn person!)
I have been on so many meds I can’t remember all of them. But here is some; Gabapentin, bacoflen and that is all I can remember ... sorry. None of them really helped, docs up and up them but still did not help so was took off them completely. But I am on Melatonin at the moment for sleep and that sometimes helps. But I am only allowed to take it every other night as my doctor says I will become addicted to it if I take it every night.
I am sorry if I rambled, I do that often. And I hope this did not come across as really heavy going and depressing.
Hope you have had a relative low pain day.