Hey, im new and not to sure what i should be doing

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Hey, im new and not to sure what i should be doing

Postby Sunflower21 » Thu Mar 08, 2012 10:32 pm

Hiya firstly my names Natasha and I'm 21, i came across this forum whilst feeling quite fed up!

I dont really know where to start with it all! i first started suffering with my hips years and years ago and like many others kept being told it was growing pains, 2010 i was working as a carer going into peoples homes and helping them wash, dress and make meals etc. I noticed not long after i started i was really struggling with the hours constantly shattered but just continued to get on with it the best i could. In december 2010 I slipped whilst at work in the snow and hurt my hip and back i was diagnosed with Bursistus on my right hip and signed off work for 6 weeks and given steroid injections that was really the start of it all.

One of the very first symptoms i suffered with was the sore to touch i thought i was just being really mard but if someone touched my arm if my boyfriend sort of pulled me in for a cuddle it was agony and if i had an itch and i scratched it it would burn for like 20 minutes afterwards this and the constant tiredness and not sleeping properly just carried on to get worse when i mentioned it all to my mum who has fibro and has done now for 10+years and she said it sounded like how her symptoms started. I booked in with my GP and explained everything and the first thing he said was he wasnt convinced it was fibro because of my age so he did blood tests (this isnt the Dr i see by choice but just needed an appt) all blood tests came back as normal and when i returned to see my usual lady doctor she decided to put me on the amitriptyline and diclofenac the same as my mum. i started off on 10mg of amitriptyline and upto 150mg of dicofenac which didnt help i was soon upped to 150mg of amitriptyline and the same dosage of diclofenac, i was also then referred to a rheamatologist at stepping hill hospital which was where my mum was diagnosed. I carried on struggling with the pain and constant fatigue but was being signed off every few weeks and suffering constant headaches all the time! I went to the hospital and explained my symptoms and he did his usual routine checks, i felt completley deflated when i left as i felt like he wasnt interested and didnt really care telling me that it would all go away if i lost weight and upped my exercise which i was on a diet and had lost 21 pounds and joined a gym already but was in so much agony more so after the exercise it would set me back quite a few days. I had kind of given up on the diet at the time as i was feeling so low but since starting the tablets i had started to gain weight which happened to my mum and i heard about it with other people on the amitriptyline. I was constantly tired and so down in myself and fed up of the constant aches and pains when my mum mentioned about leaving my job as it was making my health worse.

I rang citiziens advice as i had no idea where i stood and was told i would be eligible to recieve ESA and would get so many months paid and then would have to have a medical so this is the route i went down as the job definitely was helping me. I had also developed a cramping and trembling in my hands which i went back to my GP over this and was referred to a neurologist to check whether the symptoms were in anyway linked, he ended up putting me on a betablocker as the constant headaches i was getting that i had put down to a side effect of my fibro were actually linked with my migraines.

i have been going to and from my doctor constantly as my tablets i dont feel help me enough and with my mum her amitriptyline knocks her out to sleep where as im still not sleeping but being refused a sleeping tablet as they dont want me addicted ive also pestered about something else for pain as im constantly in pain somewhere even if its a really tiny and silly pain and have read in other places about lots of other tablets that people take, i also get very restless achey legs mainly at night!

I had my medical a few weeks ago and it was a complete joke as some of you probably know the the questionnaire you originally get for someone with our condition you cant answer a yes or no answer to most questions as everyday is different and pain is usually in some form constant in whatever form! My actually medical which was february was a complete joke as i was asked questions such as what i liked to read book wise and what did i watch on the tele and quite rudely questioned when i told her about my tablets i came out of that thinking what the hell did any of that have to do with my condition. I received the response from that yesterday and was left in tears as i had been awarded no points what so ever and the letter was full of things that hadnt been said and again were irrelevent so im now in the appeal process well soon to be! i have been left feeling so deflated and like im really making all this up and am exaggerating it all i wouldnt wish this horrible illness/disability does to you upon anyone!

im really sorry for the big long essay just trying to get everything out there and just needed a bit of a rant i do have a supportive family and boyfriend but again they cant fully understand even fellow sufferers all suffer varied pain and symptoms i just feel like this is made to be one of those things thats not understood and we are the ones that lose out! i have mithered that much at my doctors i have been prescribed a small and on a 3 night on 3 night off basis of a sleeping tablet which is helping as the less i sleep the more it affects me in every way!

dont really know how to finish and what else to say apart from sorry for the long and boring story lol im hoping hopefully to gain a bit more knowlege and a few people who understand and i can have a moan to on my bad days! thank you for listening!
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Re: Hey, im new and not to sure what i should be doing

Postby denys » Thu Mar 08, 2012 11:05 pm

hi sunflower and :welcome: to the forum you should be doing just what you are, posting, sorry to hear your story but unfortuantely as you know its not unusual.

At least your mum will know what you are going through and will be able to help you and we will try to answer any questions you may have too.
Denys

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Re: Hey, im new and not to sure what i should be doing

Postby FluppyPuffy » Thu Mar 08, 2012 11:23 pm

:welcome: to the forum Natasha :bear-dancing: :bear-dancing:

I'm sorry to read what you've been going thru to try and get an answer as to the reason for all your symptoms and things :( :( Sadly it's something that a lot of us have also gone thru :shock: :shock: When you saw the rheumy, did he say you have FM?? Just wondering as I've had a read thru but can't see where you've mentioned about being given a dx :-? :-? I could well be missing it tho, seeing as my head is full of weetabix :facepalm: :facepalm:

Meds wise, with something like FM, what may help one person may not help another, so altho your mum has found that amitriptyline and diclofenac help her, they may not be the right things for you. This linky explains about the various meds that can be used to try and manage FM http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx Have a look at what can be used, then make an appt with your GP to see what they think might be suitable for you to try.

There are quite a few people on here who have had a similar experience to yours with these medical assessments, it's ridiculous the kind of info they write in the reports, at best they're trying to write fairy stories, in reality they just make it up as they go along :facepalm: :facepalm: :facepalm: If you contact CAB again, they should be able to help you with your appeal, which will hopefully give you a decent chance of the right decision being made for you :fingerscrossed: :fingerscrossed: :fingerscrossed: There's also quite a lot of info in the Benefits and Work part of the forum that could be helpful for you as well.

I hope you feel a bit better for getting things off your chest :hugs: :hugs: :hugs: If there's anything you want to know about, all you need to do is ask and we'll try to help you with it :bear-dancing: :bear-dancing: :bear-dancing:
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Re: Hey, im new and not to sure what i should be doing

Postby Sunflower21 » Thu Mar 08, 2012 11:57 pm

Thank you both! Sorry it was such a big moan lol just has so much to get off my chest, I waffled that much I missed that I was diagnosed by the rheumatologist about september time when Ieft my job! I'll have a look at other tablets etc my doctor is lovely and do understanding but trying to get something that really suits me is a bit like pulling teeth she did try me on something different (forgotten the name awful memory) but that made me worse and practically gave me insomnia! I've been reading through the posts and things so get the hang of it all soon x
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Re: Hey, im new and not to sure what i should be doing

Postby animalhouse » Fri Mar 09, 2012 8:39 am

:-) sorry yo uhave the fibro from such a young age, hopefully you and your mum can be there for each other, and you will find some meds that suit you.

take care and its really good to read about peoples journey here so don;t worry about waffling on we all do it. start something then go off at a tangent.
:-)
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Re: Hey, im new and not to sure what i should be doing

Postby FluppyPuffy » Fri Mar 09, 2012 9:12 am

Don't worry about having a moan or a rant Natasha, it's something we all need to do at sometime, and on here we all understand what you're going thru :teddy-bear: :teddy-bear:

It makes a big difference having an understanding and helpful GP. And it is like pulling teeth trying to find the right mix that works for you, with a bit of trial and error tho, it is possible to find something that makes a difference for you :bear-dancing: :bear-dancing: :bear-dancing:
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Re: Hey, im new and not to sure what i should be doing

Postby shazq » Fri Mar 09, 2012 2:00 pm

:welcome: to the forum sunflower :wave:
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