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The UKFibromyalgia Forums • View topic - Hello



Hello

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Hello

Postby ou.nikki » Thu Apr 03, 2014 9:27 am

Hi,

I was finally diagnosed in 2012 or was 2013. I spent so long and with 2 different GP's who advised they wanted to treat things as seperate issues. When I finally got an appointment at the pain clinic (having refused tricyclics and SSRI's) and then the consultant being off sick and appointments cancelled. I had no sooner sat down and she told me I have fibromyalgia and centralised chronic pain syndrome, consistent with my RTA is 2002. I burst into tears and said 'so I am not going mad?' she confirmed I was not.

She also preffers where she can to treat complimentary and alternativly so people do not become vegetables up to their eyes on drugs that might not work, sadly the NHS is cutting alot of funding for this in this area. I too am qualified in alternativ enad complimentary prctices as well as psychotherapy and am currently trying to complete a psychology degree which is not quite so easy with the memory problems!!!

I am 3 years into an upper tribunal for my ESA and hoping I am allowed to appeal my PIP decision. This has nearly done me in and had an adverse effect on my health, I am hoping when I finally win all of this and I can get my health balanced again I can offer help and support locally to me.

Best Wishes

Nikki
Last edited by FluppyPuffy on Thu Apr 03, 2014 2:04 pm, edited 1 time in total.
Reason: Split into smaller, clearer paragraphs for easier reading.
I am nothing if not honest, if you do not want an honest answer do not ask me a question.
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Re: Hello

Postby FluppyPuffy » Thu Apr 03, 2014 3:31 pm

:welcome: to our little sanctuary Nikki :cow-wave: :cow-wave: :cow-wave:

I've split your post into smaller paragraphs for easier reading as quite a few of us on here find reading one/larger blocks of text quite difficult. I'm one such person, and often find myself getting lost and reading the same few lines over and over and over again :facepalm: :oops: :oops:

There are some on here who follow a more alternative/complementary approach to managing their condition. Having your GP and consultant onside with this approach must be very helpful as, sadly, there are such people who are dismissive of the condition, and that's before you've even reached the treatment stage :facepalm: :facepalm: :facepalm:

For some of us tho, the only effective treatment is the pharmaceutical route. I'd use a more natural approach if it were a viable option for me, but due to the extreme ways such remedies affect me, it just isn't a possibility for me, unless I want to spend a number weeks/months being extremely ill and confined to bed, or the sofa if I'm lucky.

Anyways, there is lots of info and advice across the boards, so have a bit of a read as you find your way around the place. Anything you want to know about, just ask and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave:


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Re: Hello

Postby denys » Thu Apr 03, 2014 6:53 pm

Hi and :welcome: to the forum :cow-wave: :cow-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: Hello

Postby Airmid » Thu Apr 03, 2014 7:11 pm

Hello Nikki

I read your introduction and just wanted to say hi as I am new to the forum too. (And relatively new to fibro)

I saw a number of GPs over the years and most were dismissive, told me I was 'just depressed' or plain said I was making it up! The surgery where I live now have been better but not brilliant. I have seen 2 doctors there, 1 gave me the FM diagnosis but the other keeps talking about 'revisiting the diagnosis' and the possibility of RA even though all blood work has come back negative. Trying to get a referral to a pain clinic is like getting blood out of a stone! When I talk about pain relief she just says ibuprofen... Like that helps!!

The first meds they put me on Citropham (spelling???) didn't do anything so they kept upping the doses until it gave a tiny bit of relief but downside was immense shooting pains down my legs. Then they put me on Amiltriptline(again spelling?!?!) which had an awful effect on me, I couldn't function at all, I forgot how to do stuff like drive my car, do my job and I kept falling asleep at work too which is awesome when HR already hate you!!

There is no way I can afford to lose my job, management and some colleagues are very difficult already and I know certain people just don't believe me. HR have had to lay off a little as my doctor sent a letter in but we are marked using the Bradford scale on sickness and fibro is not taken into account when the tot up the scores.

The 2nd doctor is now convinced that everything is just due to low vit D levels which showed up on the latest bloods. This confused me as I was already taking a high dosage vit D supplement, eat a lot of oily fish and try and spend as much time outdoors as pain allows. I said this and she said 'no one eats oily fish' and told me to take a higher dose supp. I am nearly 90 days into that and have noticed zero difference so I'll be trying to get a appointment with the other doctor I think!!

A Friend of mine with FM has had brilliant support from her docs, referral to a pain clinic straight away, physio all sorts. She hasn't had such adverse reactions to meds either so it's very true that people are affected differently.

Anyway I hope you find something that helps you be that traditional meds or alternatives. I'm taking up yoga as its meant to be beneficial although its not really going to plan so far as I seem to have no coordination or balance!!!
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Re: Hello

Postby ou.nikki » Fri Apr 04, 2014 9:03 am

Hi Airmid

Yep same sort of thing as you have experienced I had citalopram (amongst others), amitriptyline and also tried nortiyptyline. I feel alot is trial and error, lots of research and if it works for you then great, as you somethings work for others that do not work for us, I also do believe in the placebo effect.

The research my consultant was talking about was very interesting indeed and I am seeing her again in May with some new issues or presentations. I have also had Diazepam as I have an ongoing problem with my shoulder WOW it was fabulous, I also found my anxiety levels were slightly reduced which as it is valium based was quite conducive so you cannot live on it.

Good luck as well with everything and I hope you HR get with the programme and realise they are there to help you not ridicule you, my friend is an HR consultant and she has helped people with FM to 'fit in' and to work when fit to.

Best Wishes

Nikki
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