New to all this!!: Hi, my name is Liane... - Fibromyalgia Acti...

Fibromyalgia Action UK

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New to all this!!

10 Replies

Hi, my name is Liane and I'm a mum of 4 living in Blackpool.

When I look back, I've had the symptoms coming for a good few years, especially in my neck,shoulders and upper arms. I'm a nurse and just put the pain and poor sleep down to my physically and emotionally demanding job.

In September last year, I fell at work on a wet floor and hurt my knee and hip. Then I got back pain. The pain I've developed since then is pretty much neck down and is especially bad in my hip, thighs, shoulders and more recently my hands. When I get up, I feel as if I've got someone else's skin on that is two sizes too small and my wedding ring is stuck to my finger till I've been up for a couple of hours.

I was seeing a consultant since my accident but was feeling more and more like he was getting fed up with me as it seemed to me his opinion was I should have recovered long since!!

It was only when I saw him on a day when he had a GP assisting him that she asked me a couple of questions about sleep, mood and did I feel "generally bleurgh!!" all the time that they thought there may be more to it. I don't know who she is but I'm very grateful to her. I saw a rheumatologist two weeks ago and in the space of (an almost naked!) 30 minutes I had a diagnosis and came away feeling less like a hypochondriac and more like someone who was believed.

Unfortunately I also suffer with generalised anxiety disorder and am already on Citalopram. I'm hoping that a combination of increased dose, CBT and specialist physio will help as I've been off work for two months and it's very isolating (somebody please tell me it will!!)

I've read a lot of blogs and forum comments and it's good to know I'm not alone, not exaggerating and that there are people out there who won't mind me being honest if they ask me how I am !!

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10 Replies
jillylin profile image
jillylin

Hi,

you landed in a great place. I am fairly newish here myself but the information, support and just downright friendliness is brilliant.

Hugs

Jillyxx

Hi and welcome , as jilly says its a great site easy to navigate and plenty of people about who all know where you are coming from .....all the volunteers and FA team have fibro

We have a website with more info

fibroaction.org and our guidelines are on a link on the right of the page...

Hope you enjoy popping in to chat ask questions have a rant on a bad day and just enjoy being with people like you

VG x

fbwoman profile image
fbwoman

hi Liane

I've just joined today and already I feel grateful to have somewhere to got to read similar story's to my own.

I was off work for 6 months when I was first diagnosed with FBM, but I did get it under control with the right meds and lots of advice around pacing myself etc and I returned to work. that was 9 years ago and since then I have changed medication on a number of occasions and decided on a change of career. the one I have now pays less and it was a big decision but my boss is more disability aware and allows me to work flexibly as much as possible. I have flare ups that are very difficult, I struggle wit brain fog that sometimes stops me in my tracks and can be very embarrassing! and some days I am so tired I can barely feed my family at the end of the day. I find life very difficult, but I can say that in my experience it can and did get better than where you are right now. I tell people now (mostly!) when I am feeling unwell instead of trying to do too much, I sleep when I can and I do not give myself a hard time when I can't think properly.

Its a long journey and I am still travelling it, but I have just joined a support group in my area and with this forum as well, I hope to give and receive support to other sufferers.

good luck Liane!

in reply tofbwoman

Hi and welcome to the site too :)

VG x

ladymoth profile image
ladymoth

Hi Lianne,

Welcome to our family. I'm glad you managed to find a sympathetic consultant and have been properly diagnosed. You seem to be having the right sort of treatment, so lets hope you manage to improve your symptoms.

Best Wishes

Moffy x

jjojay profile image
jjojay

Hi,, your not alone here , I have never felt really listened to by GPs and since I was diagnosed with fibro I've just felt in no mans land. I feel at home on this site especially now I understand fibro more and see that my battle with fibro is not just mine. Everyone on here has a day to day battle with not only fibro , other conditions also. We are all listening ears , you may get good advise and a understanding ear. People have comparisons and good ideas . Don't worry your on the right path . Keep positive as much as possible and bend your GPs ear if you have symptoms . Take care x

Hi Liane, Sorry to hear you are one of the fibro mites but you have def come to the right place for info, support and a kind ear to share your thoughts and tribulations. We have all come here to find answers, support and general conversation from like minded ppl. We have all got some differences in symptoms but we all have the same problems, coping with a family and living in constant pain is a struggle to say the least. Now you have a diagnosis you can move forward and try the different options, medications e.c.t. If you can get yourself a decent GP your one step ahead, keep positive "its hard during flare up's" Just come here and ask questions, no one will judge you and everyone is lovely...

Soft Hugs and I will look forward to your blogs xxx :)

Thanks to all of you who've responded so far. Look forward to keeping in touch x

phlebo123 profile image
phlebo123

Hi and welcome!! I like you work in a hospital (I believe that people like us are very caring people and always put ourselves last!!). In order to learn to live with fibromyalgia we have to learn to put ourselves FIRST -- much easier said than done I am afraid. We have to learn to "pace" ourselves and become "expert patients" and manage our symptoms -- although this is an invisible illness it does not make it any less life changing than any other illness. In fact it is "harder" for us because everyone around us cannot see our symptoms so find it hard to believe we are suffering. I have learnt to manage my symptoms by cutting my hours at work (12 hours a week) and getting help from family member s around the house. (Are your children old enough to help at home?) I found this website very useful -- paintoolkit.org -- there is a print off booklet that helps you understand pacing. In the end it will be down to yourself, to learn how to live with it, so you will have to be be strong and learn how to say "No" when people expect too much of you. Good luck and remember when things get tough you are not alone -- we are all here to support each other ! :) xx

Royalspec01 profile image
Royalspec01

Hi there so nice to hear from you, in new myself not just to this blog but to this confusing consuming illness I so feel for you but what I would like to say is see if there are any fibro management groups available form you doctor or pain management this will help. Just take it easy and don't push to much with the pain or you might flare that's a real bum day so be good to yourself like your patients lol :)))) these are the only helpful things that I can say to you right now so sorry wish I could help you more oh yes pace yourself you may not be able to do so much but you can still do some things over a longer time so priority's help. Fibro friend x

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