Accepting you have fibro : Am... - Andover Fibromyal...

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Accepting you have fibro

Tiny09 profile image
14 Replies

Am struggling to accept this how am gonna be frm now on, think I've been through ever emotion possible, my head just carnt accept it. Any advice

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Tiny09 profile image
Tiny09
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14 Replies
Dizzytwo profile image
Dizzytwo

Aww Tiny, I am sorry your suffering like this. Learning to except a new you and a new lifestyle is so overwhelming. I have had Fibro for over 30yrs and I'm still learning to adjust. Especially as age is catching up with me. It's like having a double whammy.

Here are some emotions those with fibromyalgia go through:

fear that the illness could be fatal

hope that diagnosis will lead to a treatable and curable disease

concern over the future with an illness that is ever-progressing

joy over a label that legitimises experiences

disappointment that not everyone can accept the fibromyalgia label as a legitimate diagnosis

realisation that life is now very different from what it was before

That is a lot to take in and accept. But one thing I learnt was the harder I tried to ignore and lead a normal life the more I suffered.

For me it's listening to my body. Taking one day at a time. Knowing no matter how ill I feel it won't kill me.

Yes your life may not be the same has it once was but there is a life after fibro. Sometimes I think focusing too much on what we can't do rather than what we can do actually can make us feel worse than we are. That's just my personal opinion.

It's like loosing a loved one. You need to spend a short time grieving. But if you spend too much time about a loss it can make a person become ill.

Try setting your self a time limit for you to grieve. Once that times done set out a plan of what you want to achieve within in your limits and head for your goals. Even small goals are good xx

Tiny09 profile image
Tiny09 in reply toDizzytwo

I just wanna cry all the time it's frustrating, I know I need to accept it just feels lyk am walking zombie, not due to meds, I dunno how to explain it its weird

Dizzytwo profile image
Dizzytwo in reply toTiny09

Hi Tiny, you sound very depressed if I may say so. Could you talk to your GP about how you feel? Have you ever spoke to the samaritans at all? They are really nice and there for people who need to talk.

samaritans.org/how-we-can-h...

How long have you had Fibro? Do you have any help in place at all? 🤗🤗

Tiny09 profile image
Tiny09 in reply toDizzytwo

2,3 years but only just been refered to pain management team, I have no help at all, just gotta plod on n do stuff tht needs to be done

Tiny09 profile image
Tiny09 in reply toTiny09

I dnt feel depressed I just dnt know how I feel its lyk am walking around in a daze

birkie profile image
birkie

Hi Tiny09❤️

I know how you feel I was very fit attending the gym had a marriage and child worked in our company, then I started with the most awful body pain I'd ever felt I thought I had rhumatic flu at first and just took to bed with pain killers but that never did anything then I felt so fatiqued it was unbelievable like you I plodded on but time caught up with me I'd burned the candle at both ends that's what I was eventually told it did take over 2 years to get my diagnosis eventually I had to give up everything as I'd made myself bedridden.

It was such a struggle eventually I lost my marriage that also meant my job to.. I was so afraid what was I going to do I could bearly do housework and needed bedrest after any activity. I saw a lovely gp who referd me to Newcastle I got my diagnosis which was pretty bad.. I can't work or do a normal job I did try but put myself bk in bedrest again.. Then I thought think of it has hurdles if you manage to do a bit of something give yourself a pat on the back this illness is invisible most people don't think I'm ill when I put a bit of make up on and that bugs the hell outa me Coz I wish they could be in my shoes for just one month. another thing theirs varing forms of fibro and I think some doctors just put the fibro badge on anyone with body pain my friend was diagnosed last year she works goes on hols has her granddaughter regularly jesus I find it a struggle just trying to pack my things if I go anywhere which is almost never I find myself thinking " ho I'd love to go away for a week with my mates but then you have to deside if you can do it most times I don't go but I have and enjoyed it to my best abilities with bed rest in the afternoon ect.. Do you work Tiny09? I know before I accept my diagnosis I continued to try to work but burned myself out... My Fibro/ME consultant told me to look at your body as a car.. A normal healthy adult can sleep and fill their petrol tank and use it throughout the day you have a hole in your tank so any activity you do your tank will empty very quickly so you need more rest to fill your tank up again this goes for the Fibro/ME illness pain can take a toll on the body.. Now I have learned to live with fibro if I manage tasks I give myself a virtual medal and think great I actually did that 🎖️

Sorry this post was long 😞

Tiny09 profile image
Tiny09 in reply tobirkie

Am a full time mum, student, I've been in so much pain since Nov finally got a letter to ring pain management team this thur about time

birkie profile image
birkie in reply toTiny09

Hi again

To be truthful I attended pain management all be it in 2006 so things might have changed and I hope they have.. But I had no luck the so called doctor asked me what I wanted I said to be cured... Was told their is no cure so I said well just to be out of pain.. He told me to take paracetamol wth.. Paracetamol!!!! My actual gp put me on codeine I was like a zombie I was on that for about 8 years mixed with paracetamol didn't do much only drugged me up.. Was taken off it when I was rushed to hospital bleeding from my back passage the gastro consultant said codeine is not for long term use I'm now on duloxetine 40mg I take 3 a day.. If your a full time student and mom your burning yourself out everyday.. This is typical of this illness I really hope pain management can help you... I found swimming helped.. But Ive had to give that up now due to having my thiyroid removed last May I also have colitis and 2 forms of arthritis but I'm still fighting 🥊good luck with pain management ❤️❤️

Tiny09 profile image
Tiny09 in reply tobirkie

Think the day am pain free will be a huge shock to my symptom

birkie profile image
birkie in reply toTiny09

👍👍👍👍

Midori profile image
Midori

knowing it is an invisible illness, have you ever thought about how many folk around you may also have it? I was shocked when I found out that two of my friends did, and I didn't know!

Cheers, Midori.

Tiny09 profile image
Tiny09 in reply toMidori

Am beginning to realise how many it effects guess u just never realise it until it actually happens to yourself 🤗

Midori profile image
Midori in reply toTiny09

I think this is why so many think we are faking it.

Tiny09 profile image
Tiny09 in reply toMidori

Yeah I agree with tht, as I've tried telling a family member for months n months I wasn't well and all I got was well doctors carnt find anything wrong because all my bloods come bk OK,so I've got on with it myself with a huge help frm this forum and a few friends, yes it's a struggle but as long as I wake up every day to my wonderful son its a blessing 🤗🤗

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