Hello, Diagnosed with FM over a year ago.

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Hello, Diagnosed with FM over a year ago.

Postby kazisedso » Sat Apr 27, 2013 9:10 am

Hello, everyone.
My name is Karen i am 43 tomorrow! (28th April) and was DX with FM over a year ago, and have been in Denial ever since :(

I am Married and have 5 children and 2 grandchildren and another one due in August.

I found this forum yesterday as for the last 2 days i have been in constant pain and aches in my Hips,knees, shoulders, wrists and fingers and believe it or not even in my toes!Also, i have been Extremely Exhausted, and despite having some sleep through the night, i have got up tried to carry on as normal, but by 10am i am back in bed and sleeping for England! yet, i still feel awful upon waking.

Anyway,i was DX over a year ago and tbh i think i have just put it to the back of my mind hoping that it wasn't fm and that by some miracle it was all in my mind!unfortunately it isnt and i have just tried and tried to get on with it, but, it's no use, i just cannot do the things that i used to be able to do. Simple everyday tasks are causing aches and pains, and the fatigue is just ridiculous, i can honestly say that i have got so angry with myself for not being able to do the simplest of things, sometimes just standing at the kitchen sink, causes me so much pain in my back and hips that washing pots means i have to do them in 5min increments as i have to sit down to ease the pain..... i shouldn't be feeling like this at my age!

For the first time today after reading a few posts on here and especially the stages of grief for FM i broke down and cried and cried as i read out the stages to my husband. i have realised that i have not been looking after myself properly,and its time to finally admit that i have been diagnosed Fibromyalgia, and i am going to have to deal with the fact that life is going to change and i am going to need lot's of help from my family to get me through this.

sorry for the long post but i had to get it out of my system, hope you don't mind.
i look forward to being a part of this forum and reading and getting as much info as i can to help me along my journey and to stop beating myself up everyday for not being able to do things that we all take for granted. :-D
Karen
Last edited by FluppyPuffy on Sat Apr 27, 2013 12:09 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Hello, Diagnosed with FM over a year ago.

Postby FluppyPuffy » Sat Apr 27, 2013 12:47 pm

:welcome: to our little fibro escape from it all Karen :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:

First of all, there is no need to apologise for posts you make on here. We havel been thru similar experiences to what you are having at the moment, which means there is lots and lots of support and understanding on here to help you thru things :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss:

How you have been since being dx'd isn't unusual, for some of us, trying to ignore what it is that is affecting us seems to be the best plan at the time for some of us, I tried doing that at first but eventually it all caught up with me, overwhelmed everything, kept rolling over me and finally left me in smithereens. Hopefully tho, you haven't got quite as far down that wrong turn on your journey, and now you've turned back round, getting yourself back on to a more suitable path won't be too arduous a thing to do :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:

There is lots of info and advice on here, so hopefully some of it will be useful as you start this new stage of your journey. You will start to find ways to live with your condition, as well as how to be a bit kinder to yourself about things. Anything you want to know about, just ask and we'll see how we can help you with it :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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Re: Hello, Diagnosed with FM over a year ago.

Postby shazq » Sat Apr 27, 2013 3:54 pm

:welcome: to the forum Karen.

:birthday1: for tomorrow :cow-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.
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Re: Hello, Diagnosed with FM over a year ago.

Postby kazisedso » Sat Apr 27, 2013 7:41 pm

Thank you for the replies, it really does help to know that i'm not on my own in this.

the last 3 days have been awful and i am still in a lot of pain right now and extremely exhausted, with fibro-fog to hoot, so i'm not making a lot of sense either :shock: :shock:
i am going to really make use of this forum and try and read as much as my head will let me :crazy:
i really do think that once the rheumatologist DX'D me and sent me a letter with the diagnosis and medication to try, tramadol or change my anti-depressant to a different one ( i am already on fluoxetine for anxiety and depression which i have had for many years) i just can't remember the name of the one he suggested, began with D, i have been left to 'just get on with it'.
So finding this forum has helped me find some strength to go back to my GP and asked to be referred to the FM pain clinic that is run at my local hospital and to also to get as much info as i can to try and help myself better understand this condition/ disease?
Again thanks for the welcome, going to sign off now as im rambling.
speak soon.
Karen
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Re: Hello, Diagnosed with FM over a year ago.

Postby julia1red » Sat Apr 27, 2013 10:10 pm

Ditto I could have written your post, im on Prozac was diagnosed last year keep thinking it's a mistake and its in my head what a strange thing cm is x xxx chat soon
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Re: Hello, Diagnosed with FM over a year ago.

Postby cameron1 » Sun Apr 28, 2013 12:30 am

Hi

Please don't feel bad. This condition sucks and we are entitled to feel angry and upset. You are almost grieving for the person you used to be and coming to terms with the fact your body and mind cant do all the things it used to at the pace it used to.

But acceptance is an important thing, because once you have accepted it, you can start looking at ways to try and manage it as best as possible.

For some that's easier than others. You will see from this forum that sufferers have varying degrees of severity, with some people not even able to work or get out of bed.

Others like me, manage reasonably normal lives most of the time. I'm 30 now with two small children and a part time job. And for the most part, i get by. I suffer particularly with fatigue, back pain, pins and needles, and I'm always painfully cold. But i've learned to live with it. I cant party with girls anymore or burn the candle at both ends, but i'm alive and still have a lot to be thankful for.

I'm currently off work due to a bad flare up, but hopefully it will cam back down.

I hate being out of control. So for me, allowing my life to be totally dictated by this is not an option. Yes, it restricts me, but I have learned to be tough and say no to people if i don't feel up to going out, or don't feel up to visitors. But I tell myself, that is me looking after my body and managing the condition, NOT the condition managing me.

I make lists of everything. Always have a large notebook to hand.

There are a host of things you can try in terms of pilates. physio, pain management clinics, etc to help manage the physical pain. Some physios/osteopaths have specialist knowledge of FM/ME and can be very helpful....others are not so good. I would steer clear of anyone that has no knowledge of the condition.

I have found a single electric blanket for my side of the bed which helps with the back pain at night and makes it a little easier to sleep.

I have cut out caffine and processed fats.

What works for one does not necessarily work for another, these are just things that I have found helpful. But with this condition, EVERYTHING is worth a go.

But your GP should be able to advise you. Diet can help so referral to a dietician could be beneficial. Cognitive behavioural therapy or referral to the mental health team can help.

Some gyms offer personal training at heavily reduced prices for people with disabilities...you need a letter from your GP. They can then tailor a programme specifically for you. I personally find swimming most helpful as its low impact and also relaxing. Perhaps your husband would try going with you for support and encouragement.

Some people benefit from trigger point injections.

I find hot stone massages very helpful. But i took some information into the salon about FM and got the woman to read it. I needed to her to be clear about how gentle she needed to be. None of that using your elbows business.

My point is, don't give up hope yet and think "that's it, life is over" Negative thoughts and stress only make the condition worse.

Your still young, so start off looking at the positive changes you can make to your lifestyle and see if they help. And then go from there. With the right lifestyle, diet, medication etc, you might be one of luckier ones like me that is not bed bound or house bound.

I think the most important thing is to learn to listen to your body. If you tired, then rest. Understand that your body needs really looking after.

Also, I find that any illnesses, cold,flu,stomach upset etc hit me really hard. It aggravates my other symptoms and takes me longer to recover from. So i'm not shy about telling people to stay away if they are sick. I cannot afford to catch other peoples illnesses.

I hope you have found some useful suggestions. Likewise, if you find anything that helps you, maybe you could share it with us. I'm always up for trying anything new that might help.

xxxxx
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Re: Hello, Diagnosed with FM over a year ago.

Postby kazisedso » Mon Apr 29, 2013 7:14 pm

Hello, and thank you for the lovely welcome and the replies :-D
Cameron 1, your post is just how i feel.....
i like to think i have some control over my own body and how i function and what i do, but now the FM (whether i like it or not ) does dictate how you will spend the seconds,minutes, and hours of any given day... especially if you are having a flare up and it takes some getting used to.
I also suffer from depression and anxiety and have done for over 10 years and any stress i just cannot cope with and i am realising that this too makes the FM worse.
At the moment i just feel so low and i am finding it really hard to deal with the sheer exhaustion and brain fog and general day to day living.... i was trying to hold conversations with my hubby yesterday and i might as well have been speaking another language as nothing made sense.... in the end i just said to him..... oh.. you know what i mean... (poor bloke didn't know what i was on about)and he just looked at me and said, get yourself back to bed you look completely knackered! i was and it's been the same today :cry:
i am struggling to get dressed..... brushing my teeth is a blooming nightmare ( and i can't believe im saying that) but it is, my arm aches so much.. what's that all about! My Husband is my carer and has been for a number of years due to my depression and anxiety and i really feel guilty that now i have been DX'd with FM that i am more of a burden,my mobility is now greatly affected, i am struggling to walk as the pain in my hips, back and knees is excruciating after only 10 mins of walking...... i am so scared that i am going to need walking aids to help me get around... cannot come to terms with this and i know it is a very likely possibility.
I know i am beating myself up and in doing so i am not helping this flare up that im in... but i am finding it very hard to come to terms with the fact that i can't walk around like i used to and i am further reliant on my husband for more assistance.... i thought he was doing enough for me before i was DX'd with FM but now :cry: :cry: :cry:
Is this part of the grieving process? i have tried to tell myself to stop it and snap out of it but it's not happening, i am so so tired.
The thing is folks cannot see mental illness and how it affects you so you'd think i'd be ready for the doubter's of FM that think you are Shamming and there's nowt wrong with you, but i'm not i have tried to carry on for over a year now pretending that it's not FM .. but i cannot pretend anymore... i am being physically and mentally affected and i wish people could just have 1 day in my shoes especially whilst in the midst of a flare up and just see and feel how debilitating it is :( .
I have tried to point my family and even my husband in the right direction and do some reading up on Fibro just so that they can have a little more understanding of this condition.. and for the most they are great.... but they think that mum... and wife will be ok next week and things will be back to normal.... it's not going to be and i need for them to understand this but it's hard to understand.

anyway i have got to stop now my shoulders are crippling me and i think i have gone on enough for today lol
Thank you to everyone who reads this and to this forum... it's great to have a place to get things off your chest with people that KNOW what you are talking about.
Till the next time :flowers: and :grouphug:
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Re: Hello, Diagnosed with FM over a year ago.

Postby kazisedso » Tue Apr 30, 2013 12:17 pm

Hi again everyone
well, been to the doctors today re FM and other issues.
Asked to be referred to the pain clinic for the FM, but he didn't want to do that he said that the pain clinic would want to try other methods first so we might as well exhaust all those first then go to pain clinic as a last resort, he wants me to double up on the tramadol that im taking and added naproxen to the mix..... they will not work ... had naproxen before and they do not touch the pain. All tramadol does now is make me drowsy and sleepy and like i explained to the lovely doctor (note the sarcasm :-| )i am already exhausted and have been bed bound for 4 days so taking more tramadol is going to keep me in bed even longer :roll: :roll: .
Blood tests for iron levels etc etc and see how i go from there...
if the naproxen doesnt work then i have to go back and try something else :roll:
so in short... my hips... back... knees and shoulders are still in agony, i am struggling with mobility, and getting upstairs is a nightmare... but take these tablets and come back if they dont work!!! does this sound familiar to anyone??

moan over for today folks. TTFN.
Karen xxx
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Re: Hello, Diagnosed with FM over a year ago.

Postby fibro-lu » Tue Apr 30, 2013 1:52 pm

hi Karen, welcome

sorry to hear that you are in that bad place
Cameron, Shazq, Flupp and others exhorted already so I won't repeat

it seems you are absolutely run down
give yourself a break
it is harder done than said, I know
if you sleep a few days, than it be so, this is ok
put some easy listening on
don't feel guilty, that makes it worse
you denied it for at least a year, probably much longer

try to relax as much as possible
the more you get stressed out, the longer it takes to come out of it
sleep it out if that helps, it does for some of us sometimes, give it a try
sorry of not being of more help
:flowers:
Lu
all the best :cow-wave: Lu
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