Newly diagnosed

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Newly diagnosed

Postby Janewheelan » Fri Sep 19, 2014 12:53 pm

Yesterday I was diagnosed with Fibromyalgia and it feels like the bottom of my world has fallen out. I've gone from a fun, active, energetic Mum to an exhausted, pain riddled old lady and I just want my life back. I don't know how to feel positive about a future with Fibro, it feels like everything I used to know and do is gone and has been replaced by a bleak, dire, and quite honestly a real s******* outlook.

I was seen at The Mineral Hospital in Bath and felt like I was given the diagnosis and basically told they could fill me with drugs that had horrible side effect with no guarantee they would help, but other than that I had to just get on with it. So many people have said how wonderful the Min was, and I was all set to come away with the diagnosis, but also how to cope and that there were things that could be done to help and was feeling positive (I already knew I had Fibro) that they would help make everything easier to bare, but instead I came away feeling like I have a life sentence of pain, fatigue and memory loss and I just need to accept that's my lot and get on with it.

I know there's so many self help things I can do, and at the end of the day the only person who can really help me is me, but to be quite honest I just feel so low, so tired and so run over by fibromyalgia that I can't actually find a way to start. I'm just sat here in tears wondering what is the point. Please tell me it gets better than this
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Re: Newly diagnosed

Postby joanna73 » Fri Sep 19, 2014 1:24 pm

Hi ive recently been diagnosed with fm too and was in the same boat as urself, I knew I had it before my diagnosis. My hospital was the same u have got fm get on with it, it wasnt until I went to physio and they gave me a booklet all about fm that I found really informative. Its just called fibromyalgia and its from the arthritis website sorry not giving much info here lol if u google arthritis research u should find the website and there are links on there to download the booklet. Hope this helps u a wee bit xxx
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Re: Newly diagnosed

Postby shell@chase » Fri Sep 19, 2014 1:29 pm

I know exactly how you feel, I have also recently been diagnosed with this terrible illness. I'm trying to stay strong even though it's hard and pray soon someone will find a cure. Xx
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Re: Newly diagnosed

Postby babydave » Fri Sep 19, 2014 2:45 pm

I was diagnosed last november although I'm certain I've had fibro for years.
The consultant said 'you have fibromyalgia,I'll recommend your gp prescribes amytriptiline and I will discgarge you from my clinic'
So he pretty much said get on with it.

The amytriptiline has at least enabled me to sleep better and as for everything else I just try not to let it get me down.
I try to achieve one thing each day and I do still work. Work is a necessity really so I just plod on and do my best.
I always think there's people far worse off but it does annoy me that the medical proffesion don't seem to care a great deal.

I hope you feel happier soon .x
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Re: Newly diagnosed

Postby dazzleship » Fri Sep 19, 2014 3:26 pm

hi jane

so sorry to hear youve been daignosed with this awful illness. sending you :hugs: and a :cat1:

I was diagnosed about 2 years ago and it is an awful thing to be given the diagnosis. it will be a struggle and a long road for you as I'm sure it is for all of us. it's difficult to know what to say to you.

you're right in that it is ultimately up to you to accept this but I can't tell you how easy that will be as I'm only just starting to begin to start accepting it (but others may reach that stage earlier - everyone is different to some degree).

all I can say is that this forum is a wonderful place to be and you will find lots of help. anytime you need to ask questions just post on here and people will help you. I can confidently say that because I've had lots of help on here and just talking about things that are happening to me and finding that other people have gone through the same thing or can offer advice really does help.

just take some time now to sit and get used to what you have been told, you know? just take it one day at a time but remember you are still the same person you always have been. that won't ever change. you are still you.

and you are certainly not alone. :hugs:
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Re: Newly diagnosed

Postby AmazingB59 » Fri Sep 19, 2014 5:33 pm

Hi Jane,

I know exactly what you mean, both my GP and hospital gave me the impression that fm is something I have to deal with myself. For years I suffered in silent even to the point of loosing my job after being off for a year.

Through signing on for JSA I was informed about an organisation every Tuesday in Birmingham Central Library for fm suffers, (the organisation have now closed due to lack of funding) Thankfully a gentleman named Ernest Carr was able to give me some information about fm which opened my eyes, and allowed me to step into a new world of likeminded people.

I felt so good to know other people are going through the same thing as me and I can call on them if I need to, so far I have only read what others have to say, but at least I know help is there if I need it.

Welcome aboard and chin up, fight the good fight.
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Re: Newly diagnosed

Postby rdmthomas1 » Sat Sep 20, 2014 8:36 pm

Hi Jane
I'm sorry to hear you've joined us 'fibromites'. Please don't think it is the end of the world. I know it is a difficult thing to live with and those around you may have to be brow beaten into understanding what you go through but they will in time. It is only natural to want your old life back - we all do. That isn't going to happen but you can achieve a lifestyle that is hopeful and satisfying. It's a shame you aren't receiving more help coming to terms with your condition. I was lucky enough to be sent on a fibromyalgia course at York District Hospital and I will try to pas on the gist of it in a nutshell and hope it helps.
Firstly I was told about the grief cycle. Please look this up - it takes you through all the stages - the same as if you had lost a loved one - Denial - No, surely not me! / Anger - often at people who didn't believe you or Drs who took a long time to diagnose you or mis diagnosed you/ Bargaining - if I just do this or eat that I'll be okay/ Depression - sadness and mourning of the life you had or the person you were / Acceptance - coming to terms with your situation.
You can enter the grief cycle at any of these stages but once you have gone through the grief cycle things do get better - please believe me. Next on the agenda was exercise. starting in a really small way - even if it only to the garden gate and back and building up slowly day by day.
On the days you feel a bit brighter don't go mad trying to catch up on the housework and 'make the most of it'. If you just do an odd job or couple og things and stop before you are wiped out you are more likely to be able to do stuff the next day. The physios told us that if we go mad and try to cram in stuff whilst we can we will make our condition worse and the periods of time we're able to do things will become shorter until we burn out.

I hope some of this helps and for myself can recommend amitryptaline - it's worth the odd side effect like dry mouth to get back some of the person I once was.

Jane, you have a lot to look forward to and you will get used to dealing with your condition - you're not alone sweetie - we're all there with you xx
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Re: Newly diagnosed

Postby denys » Sun Sep 21, 2014 10:16 am

Hi to all the newbies who have posted in this topic :welcome: its not unusual to come away feeling overwhelmed and that those giving the diagnosis have been rather unhelpful.

The comments could actually be construed as honest, BUT there are things that can help to lessen the impact on your life and in some cases reduce the pain and fatigue.

Go back to your docs now you have the official diagnosis and see what they will offer you, ask if you could be referred to a pain clinic which is a multi-disciplinary team that will have tools they can give you to help with coping etc.

Anyway we are here to help and support when we can so feel free to ask questions whenever you need to

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: Newly diagnosed

Postby leswaltdave » Sun Sep 21, 2014 6:19 pm

Hi Jane just like you I have recently been diagnosed with this horrible condition and just like so many I was given the impression to get on and learn to live with it.

I work a full time job which is mentally and physically draining and when you add Fibro to the mix you can imagine how I feel.

The best thing I did was to go and make an appointment with a doctor and talk to him/her and tell him/her your worries and discuss what help he or she can provide.

I am on Amitriptyline 20mg per day now but was on 10mg per day to start with, It took 4 weeks to feel any different and then I asked if any of the prescription only pain killers would help take the pain away at night just so I could sleep. (I had done some research with loads of websites to find out which had the least side effects)
We agreed to try tramadol 50mg but only to take when really needed and it works a treat for me.(I did try one during the day when it really hurt but felt terrible all afternoon :crazy: so nights only for me! :sleep: )

I am not saying it will work for other people but talk to your doctor and hope you have one as good as mine has been!
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Re: Newly diagnosed

Postby Wyrdsister » Sun Sep 28, 2014 4:29 pm

Interesting that York Hospital offer this. I was given suggestion that I have fibromyalgia by rheumatology and discharged back to GP. Good thing I suppose is that it's not rheumatoid arthritis. Still hurts. Still knackered. Still can't sleep. Still feel my brain is going senile. And the rest.

GP tomorrow, see how that goes.
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Re: Newly diagnosed

Postby madchickenlady » Sun Sep 28, 2014 10:12 pm

Hi Jane, first off I am so sorry you have been diagnosed with Fibro :hugs:
I can only echo all the advice you have already been given,I was diagnosed 11 years ago by my local hospital rheumatologist and was discharged and left to get on with it. I went back to my gp who fortunately was very good has known me for years and believed me when I explained to him how I felt, he prescribed the meds I am still on today, I have had ups and downs with this over the years (currently in a down but thats another post) but life went on and things got better, I was sent on a course to learn how to manage my pain and that helped a lot so make sure you ask about that, in the meantime I have just bumbled along as best as I can, at the moment things are a bit hard and thats why I joined this forum, so I think you have made a wise decision in coming here, there are loads of people to chat to who will know exactly how you feel and there is also lots of help and advice,also check out your local library for books on Fibro, my library had a few that were helpful definitely read about the grieving process, I read it last night and a light bulb went on in my head, also gentle exercise is important if it seems like too much literally take baby steps even just walking from one side of the room to another would help, I know this might not apply to everyone but I have found that trying to be proactive and learning how to manage Fibro made me feel more positive,I hope you start to feel more in control of it soon xx
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