19 with fibro?

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19 with fibro?

Postby Moony » Wed Mar 13, 2013 2:37 pm

Hi guys!
I've finally gathered the courage to post something on here :-D I feel I have a lot to say, so I apologise now for the ramblings and hope you will bare with me haha.

I've just turned 19 years old in January and I am in the process of possibly being diagnosed with Fibromyalgia. It's a topic that has been discussed with myself and my parents quite a few times over the years, but no one ever diagnosed me as they were "reluctant to give a diagnosis to someone so young". :roll: I have suffered from pain in my back since I was 11 years old. It was never a problem at that age and I have recently found out that the pain began because the muscles in my back and pelvis have not fully developed and are too small, so they were being overworked as the rest of me grew. The pain with it was manageable, but over the years I have gotten worse.

I began to have pain all over my body and in all of my joints. I couldn't sleep yet I was constantly exhausted. I started to have problems with my memory, forget what i'm saying half way through a sentence, forget what some things are called and people often find me randomly stopping and staring off into space. I also began having trouble moving and often couldn't even make it up stairs.

When I finished my GCSE's everything seemed to be getting worse. My attendance during my A-levels was horrendous because most days I struggled with my symptoms and couldn't get out of bed. Sometimes when I told my mum I couldn't go to school that day she would make mocking comments and get angry with me so I ended up dragging myself to school anyway, despite the pain and exhaustion. Still, doctor's wouldn't do anything and the scans and blood tests I were having always came up fine and clear.
One doctor I had turned around to me and said "You're making this entire thing up in your head. Stop being a silly little girl, stop wasting my time and get a grip on yourself!" before giving me anti-depressants (which I refused to take).

As no one would make a diagnosis, the doctors would give me tablets after tablets to take, hoping that somehow, something would work even though they did not know what was wrong with me. At one point I ended up taking about 6 different medications at once and suffering terrible side effects- I went through days of not having a clue of what was happening around me due to this. I eventually went to my doctor and told her point blank that I was stopping taking any medications and I was getting a new doctor.

My new doctor agreed with me and started to find a way to diagnose me. I have been with her for 3 years now and we still haven't quite gotten there but she helps and she was the one who first started mentioning fibromyalgia. My mum researched this and spoke to her fiances' family members who have it and has since become the most supportive person I know; she knows when I'm having a bad day and exactly what to do to help me; she fights my corner against everyone who tells me it's all in my head and she is key to helping me cope.
I also passed my A-levels with B, C and D grades. :-D

Things were going well and I started a job as an apprentice Health Care Assistant in my local hospital. I still hadn't found medications that worked, but I had stopped struggling so much. Some stresses at home and bad mental health of myself and my mother meant that I had to move in with my nana, but things were going great.

Until new years day this year.

I went to do my shift on my ward and felt perfectly fine until a few hours into it. I couldn't feel my arms and legs, I was shaking uncontrollably and my blood pressure was through the roof. They sent me down to a&e in a wheelchair and when I got there, I collapsed. I can't remember much apart from not being able to move, speak or comprehend anything.
When I had come to, I couldn't feel anything in my legs and could only move them with extreme concentration and effort. My reflexes were also almost non-existant. After a few days as a patient, a neurologist told me I had lost function in my spine which was brought on by a simple cold and years of pain.

Since then I have been off work and slowly attempting to get better. I attend physiotherapy to improve my walking and I am almost back to normal with it. However, since I collapsed I have also been suffering more in general every day to day life: my everyday pain is around a 7 on a 1-10 scale, I am more exhausted with the new effort to move, my flare ups occur more regularly and now they last weeks, rather than days.
I have been sent to rheumatology and they have asked me to look into fibromyalgia. It all fits in with me and by looking through this forum I can empathise with many on here.

I am now on nortriptyline and have just been put on gabapentine (an anti-epileptic) today for the pain. I am trying to manage the increase in my symptoms as best I can but some people in my family aren't. My nana who I live with become frustrated on my bad days and- despite the fact I at least make the effort to get changed and get out of my bed on these days- often tells me that getting up, getting out of the house and doing something will help me get better. My dad constantly asks what's being done with me, when am I getting back to work and what will I do if I lose my job. Neither are helping me and just creates more stress. :-? :cry: :cry: :cry: :-?

My mum just says "stuff them! If you're having a bad day, get yourself down to mine and climb in my bed! The dog'll keep you company!" :lol: :lol: :lol: :lol: :lol:

It's nice to know that so many people feel the same as I do and have advice and tips to give out. It's great feeling I can say anything without having to worry about pretending I'm okay and know that you all can lend a friendly ear and will actually understand!
It's a TREMENDOUS relief!! :lol: :-D :lol: :-D :lol: :-D

Well, long rambling over! I just wanted to introduce myself and kind of get things off my chest!

It's lovely meeting everyone!
Have a good day and stay lovely!

:-D ~ Moony
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Re: 19 with fibro?

Postby *Lisa* » Wed Mar 13, 2013 5:06 pm

Hi and :welcome:

glad you found the forum :-D

I have fibro and also my teenage daughter so i know about the doctors reluctant to diagnose at a young age, i had to be very firm (became very heated indeed!) be one step ahead (knowing my stuff) ;-) to the point were she was left not knowing what to say :-) i managed to get a rhumi appointment (after being told no 4 times!! in that apointment) after the GP had no option but request a meeting to discuss my daughters case and i won! :mrgreen:

When we got to the rhumi he diagnosed her that day as she had 18/18 tender points and all the classic symptoms plus CFS

What i was thinkin all along about my fight was if people dont know much about fibro and who are unaware the road can be so much longer. If i hadnt of knew my stuff she would have told us to go home and she actualy tried to diagnose depression :-? i was horrified at the GP's uneducated reponse and i actually had to tell her that fibro does not show up in tests, she didnt know this so how can people get the right help and diagnoses if alot of doctors cannot see the signs or who are very uneducated :?:

i do feel for people who are left for such a long time especially the youngsters.

well done in your exams i know how hard it must have been and good to see you have some one who understands and supports you.

Sorry to hear wbout your episode and hope you start to recover very soon. Nortriptyline and gabapentin are commen medications used to help fibro pain.

Theres lots of information you can print off to help your family undersatnd your condition. Have a search across the boards, some are stickys so up the top of the topics.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: 19 with fibro?

Postby moomoos » Wed Mar 13, 2013 8:07 pm

Hi Moony,

A lovely post....thank you for sharing a bit of your story with us.....

Sorry to hear about your bad times....... but well done with your exams, must have been very hard. Glad you have your Mum.

Take good care xxx
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Re: 19 with fibro?

Postby shazq » Thu Mar 14, 2013 7:15 pm

:welcome: to the forum moony :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
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Re: 19 with fibro?

Postby Flaw » Thu Mar 14, 2013 8:10 pm

Hi Moony!

Loved reading your story.I have gone through the school days suffering with FM/CFS with no diagnosis. Everyone thought I was naughty 'bunking school' but I was always exhausted and couldn't concentrate.
The Dr's then put me on all sorts including beta blockers when there was nothing wrong with my heart or blood pressure. Then it was the anti depressants etc!

Took me years to get a diagnosis but it's so obvious now, I wish Dr's would educate themselves more. I'm glad you're on the road to recovery and now you have everyone else to chat to on the forum! Well done with your exams, you should be super proud!
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Re: 19 with fibro?

Postby denys » Fri Mar 15, 2013 1:01 am

Hi and :welcome: to the forum Moony :wave:
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: 19 with fibro?

Postby millymoodoo » Fri Mar 15, 2013 7:52 am

Hi :welcome: to the forum!!! You have certainly come to the right place for help, advice and support. I dont know where i would be without it, it has been an absoloute godsend!!

Milly :-D xxx :hugs:
Never look down on anyone unless you are helping them get up!!! When life hands you lemons, make lemonade!!! Everyday is a gift which is why we call it the present
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