Newbie Seeking Advise and Tips Living With FM

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Newbie Seeking Advise and Tips Living With FM

Postby JamesUK » Fri Jun 13, 2014 12:44 pm

Hi Everyone,

I just signed up to the site yesterday, I have been meaning to join a forum for a while but I either have not had the motivation or just felt a bit silly complaining about it. I am Male and been diagnosed with FM for 6 years - I am 30 years old.

As all of you know everyone is affected by FM in different ways I have read some posts and its scary how much I can relate. I have no friends who suffer from this so its hard for them to understand but they are supportive.

The majority of my pain is neck and hips but today its neck and legs tomorrow it could be all over its swings and roundabouts.

I really struggle with motivating myself for party's or gatherings and its hard as I used to be the sole of any party and never wanted to leave. 6 years since being diagnosed I have been on all types of medication - just recently I am now taking 20mg Morphine slow release which is helping well for now - previous to that was 30/500 co-codamol which only slightly took away the pain and I admit I am addicted to painkillers I literally crave them but where else do we turn that doesnt cost??? I have done Accupunture and chiropractors but they are costly.

I really struggle getting up for work just now and for the last few years my work performance has decreased and I am constanlty in bother in regards to my work rate and standard - its not lazy I just cant focus or concentrate for long on my work - I am a senior buyer for a big oilcomany and paid very well but I struggle to do the job and nobody understands when I say it is the FM. I have asked them to read symtoms and they dont bother. I dont want signed off but the doctor has advised I take a break but I am too stubborn for that.

I am scared of losing my job, I can barely manage a trip around town and I sometimes struggle to motivate myself to play with my darling little girl in the park etc but I do it as she doesnt understand and I love her with everything I have. I never show my emotions or tell my partner how I feel I had a hard upbringing and hold it all in - I have sometimes tried but I just scared of totally losing control of my emotions.

We all wish we had that "button" to switch the pain off but without no cure we have to struggle on and have the feeling that people think its an excuse. The pain for me is unbearable but being a father and a husband I literally try my best and brave the pain to do nice things and not ruin the day with my pains... even if it means taking extra meds if they are happy its the one thing I can hold onto and get me through life.

I cant help feel how much I hate work, I cant concentrate and I cant take the information in no more but we need the money - I also have ADHD which makes sitting all day at a desk un motivated even worse. I literally could cry when I have to get up in the morning.

I am on no benefits or have blue badges for FM I have never looked into and nor have I thought I would be eligible or deserved of being approved as its not something that diagnosed and unproven. Its so frustrating that nobody understands the pain FM sufferes face day to day I have always tried to describe it its hard I just tell them I wish I could let you feel the pain for one hour and you would see what I need to cope with 24 hours a day!

I cant afford to take a job with less money as we need it and I like to give as much to my family as I can but I feel I am only doing worse to myself and sometimes think if its worthit but when I am with my family I say yes.

I guess what I am asking is does anyone else relate and what do you do to get by life...I cant afford to lose my job but sometimes I think it would be a relief to not have that feeling for 9 hours per day. I cant cope and I cant do the work and its hard to say its the FM when my bosses dont understand and just think I am lazy - far from it nothing more I would love is to not feel like this and be able to give my all at all times.

Is there any benefits I could apply for that I would be elible for and if so what... also what do others do her to deal with the pain and get through it... any tips and advise would be very appreciated! After that my hands and neck have taking a beating as I also suffer from RSI. And I have 9 hours a day of this at work I sometimes wonder how I get through it.

thanks all for taking the time to read.

James
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Re: Newbie Seeking Advise and Tips Living With FM

Postby humphreys » Fri Jun 13, 2014 1:17 pm

Hi JamesUK. I really feel for you, and having a family too. I was diagnosed 4yrs ago, I live on my own, so money is tight at the moment, my pain distributes itself to different places everyday, and I find at week ends I have to rest all the time, and then it's Monday again. i used to work 5days a week then it went down to 4 then 3 and now I'm asking for 2 days a week, I can't afford it but my health is more important, I am a Support Worker for a lady with a stroke and brain injury so you can imagine, I am simply drained after the day is over. I think I've accepted the fibro now and know there's nothing can be done to get rid of this animal. You should go to your doctors and ask advice on what to do regards your work, and go to the Social Services and see what leaflets you can pick up, you should be able to get something with having a family. I wish you luck and hope that someone on this forum can help you. Gentle hugs to you.
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Re: Newbie Seeking Advise and Tips Living With FM

Postby humphreys » Fri Jun 13, 2014 1:20 pm

Hi it's me again (humphreys) have a look on Fightback facebook page, they deal with getting help and claiming for illnesses, good luck
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Re: Newbie Seeking Advise and Tips Living With FM

Postby Baby-Hedgehog » Fri Jun 13, 2014 2:12 pm

Hi James

So sorry to hear how things are for you... and I can't begin to imagine how bad the stress level is, being the major wage earner is a burden in itself, without fighting Fibro.

I don't have any financial advice for you - sorry - I'm sure others will - but I do have some health advice. Your body can only take so much, at some point your brain will switch off and you'll have a melt-down. It's been sending out all the warning signs, in fact, by now, I expect it's sending up SOS signals, or dialing 999. You can't continue to push your body like this..... if you have a complete breakdown you'll be no help to anyone; and it will be more of an uphill struggle to find any sense of normal.

Go back and talk to your doctor - get an appointment with the local CAB - but please, do something

xx
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Re: Newbie Seeking Advise and Tips Living With FM

Postby JamesUK » Fri Jun 13, 2014 3:21 pm

Hi,

Thanks for the replies, I will check the Facebook page out and maybe best thin is to go back and speak with the doctor. The only thing is the doctor goes on to depression or if it's not that then maybe take different painkillers or anti inflammatories. Really is always one of them and really I just feel I am almost at the point of no return. As the first poster said by the end of the day I to am mentally and physically shattered.

It sounds selfish but I here and read about people with non stress jobs and no ailments (that I know of) saying oh I'm done in... It's one of them things that frustrate me and want people I see how much FM sufferers put there body through everyday. I am one of the lucky ones who can get up and work and I am in agony and on heavy painkillers.. So I hate to think what the house bound suffered are going through.

It's hard to explain and you get the same look like you are mad and making it up.

I will visit the GP again but I know the outcome.

I pray one day they find and cure and have one pull to take in the morning that last the day.

Fingers crossed and thanks for the advise :-)
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Re: Newbie Seeking Advise and Tips Living With FM

Postby Baby-Hedgehog » Fri Jun 13, 2014 3:51 pm

We're all waiting on that day James.... although I suspect it will go through many phases, names and causes before they finally decide exactly what Fibro is, and how to adequately treat it. Certainly in the 12 years I've had it they've come up with different root causes, etc.

Still - it's best to know what you have, so that when (and we have to believe it's when) they find a cure we can be the first ones to get it

Have you seen a rheumatologist yet.... it might be worth asking for a referral, as they know a lot more about Fibro than general GPs - and may approach it very differently.

I am grateful that I can still work (only part-time, and luckily for me, it's from home, and flexible) - I know I'm so fortunate, and like you, know there are those who suffer more than me.

I suspect you get the phrase "you don't look ill" a lot... although, I think that "you look well" is perhaps even worse - especially when you're done in, and every ounce of energy has been squeezed from you.... unless you have it, you can't understand how bad it is. Actually I applaud you for being able to hold it together enough to actually be at work every day.

Anyway, do try and get to see the rheumatologist - and hopefully they won't keep on about the depression side of it (actually, that's one of the bits I've managed to master..... sadly, not mastered the pain bit tho')

Hope you get a restful weekend x
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Re: Newbie Seeking Advise and Tips Living With FM

Postby denys » Sat Jun 14, 2014 2:13 am

Hi James and :welcome: to the forum I cant add anything useful to what has already been said but just wanted to say Hi
Denys

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