Is this my life of fibro: Hi I really... - Fibromyalgia Acti...

Fibromyalgia Action UK

57,429 members65,392 posts

Is this my life of fibro

sparkleblue profile image
20 Replies

Hi I really need help

I've just been diagnosed with fibro and Sherman's on my back

Last 6 weeks I've been so poorly just can't take anymore

I've been sleeping so very much and when awake I am in so much pain my body feel likes my bones are snaping my skin feel so sorce my hands are weak on a OK day I try to get dressed and do a litlle walk when I get back iam in so much in more pain. I am defently getting worse my forgetfulness is worsening I am falling out with my mum and girl all the time, I have no energy to fight anymore, I have had to Waite to write on here cause I would not be able to do it on a bad day.

My depression is sky high I have thort about ending it but it would be so selfish I could not do it to my daughter or mum. I prity much live with my mum now as i can't manage , I have to relay on family to do stuff like pick my girl up from school.

And finally what I don't get is I tell a few ppl that I have fibro and thay say I know someone who has fibro and there doing really good walking around driving working and its making me look like I am a liar

I spoke to my pain management over this and she siad there is having fibro and there is having FIBROMYALGIA and she said some ppl have not been diagnosed by rheumatologist, I did feel a bit better for known that but its horrablile that ppl think I am making things up I can't stand this any longer please help xx

20 Replies
Crazy_Horse profile image

Sounds like you are trying hard to cope with a lot. Sorry for the pain and fatigue you endure.

You mention your depression. It's "normal" to experience depression under these circumstances. Are you being treated for depression? Some antidepressants may help with depression and with pain. Some eventually also lend some energy.

Are you taking other medications?

Has your doctor(s) been helpful?

Does your doctor know how overwhelmed you are feeling?

Are you able to get proper rest and able to eat healthy meals?

(Our energy is sourced in food/diet.)

What helps? What makes this worse?

We are here for you.

Is there more you can share with us?

Hope you find relief soon.


*Please always consult your physician(s) and/or pharmacists. We can share experiences and lend support. We are not medical professionals.

sparkleblue profile image
sparkleblue in reply to Crazy_Horse

Thankyou for your kind message.

Yes I am on slow lease tremodol and abertiptaline to help in the night and mornings as I am so bad with pain in the morning dose help a little.

Then in the day I am on pregabaline , tremodol, ibuprofen,

And yes I have venlafaxine for depression and anxiety but truefully I have always from years ago suffered from depression.

My mum and my girl are my life saver as I don't think I will be here now selfish I know, when I do have the strength and not in so much pain I try and get dressed and go for a walk fresh air help but then I am sometimes not all in more pain than when I first went for the walk.

I am scared for my future and worried how this will affect my girl.

Dose anyone out there suffer this much pain ? I just don't know what's going on with my body.

Ppl who say that have Fibro and working driving and walking about must have had some really good help I wish I was like these ppl.

This site dose help alot from ppl

Do u suffer from Fibro? X

sparkleblue profile image
sparkleblue in reply to Crazy_Horse

Also I do try to eat but again my Fibro stops me from making a good meal my left hand keeps on having really bad shooting pain going up it. So not so good on the old cooking.

I do drink alot offer water and juice tho x

Crazy_Horse profile image
Crazy_Horse in reply to sparkleblue

Hi Again!

Again, I want to tell you I am sorry you suffer so much.

I don't feel it's selfish to express the amount of despair you feel. Sometimes, the pain and fatigue are truly unbearable, and somehow, we get through once again. Please don't discount your feelings and your concerns.

Your sense of depression, your concerns about the future, your concerns about your independence, your concerns about your girl -- these are normal, healthy concerns.

I believe depression and suicide are likely the number one killers of people with chronic painful conditions. It's important to take these added conditions seriously.

I had asked you questions to help us all get a better sense of your life.

Your responses have helped people to respond to you. I am thrilled to see so many responses below! :)

I had asked about meds for a couple of reasons. Sometimes, meds are helpful. Sometimes, some meds are not helping us, but are adding to the sense of disability. I often suggest people carefully consider each medication and its personal effect upon him/her.

Many of us have found what's most helpful through a lot of trial and error, and time.

I encourage you to hold as steady as possible and take a careful look at everything, to see if you can discern anything which might help you?

I do have FM and sometimes it has been just horrific. I did not know how to make it through it, except just one moment at a time.

Over time, I have had less frequent flares and have learned what helps them to pass more quickly.

I imagine you will learn the same, in time.

Please keep talking to us. :)

Wishing you comfort, inner peace and hope.


sparkleblue profile image
sparkleblue in reply to Crazy_Horse

Thankyou for this xxx

MJD14 profile image

Big hugs to you - I understand the despair that you feel. Please do consult your doctor about how you are feeling - there are lots of things out there to help you - and if they don't take you seriously, just move on to another one until you find someone who is sympathetic. I wonder if you might be near a local support group that could give you some support? I don't find people who don't have the illness have any understanding of the illness - so much so, I no longer tell people that I am ill unless I really need to. To be honest, I don't understand the illness and I'm suffering from it - so I understand where they are coming from.

Personally I have found this illness to be a lot like grieving - I think I spent a long time grieving the passing of someone I used to be. There is some light at the end of the tunnel, please don't give up all hope - try to draw strength from the little things - your loved ones, small things you can do each day - even if that is being able to brush your hair.

I hope it helps to know that others have been where you are. Best wishes x

sparkleblue profile image
sparkleblue in reply to MJD14

Its hard really hard but its very comforting that I am not alone there's lots of ppl who have suffered the same thankyou all so much for your warm thorts xx

rosewine profile image

Hi Sparkleblue

Not feeling too good myself this evening and was just going to read posts and not reply but my heart went out to you when I read post.

I know this my not help but fibro and illnesses like it are strange things and they can go in cycles where you can have periods when it is tolerable and then suddenly out of the blue you can have a flare which literally wipes you out and these flares can last so long that you feel that you are never going to come out of them. When this first happens it is very frightening and you feel that this is going to be your life for everymore but the saying "it is always darkest before the dawn" can often apply and just when you feel you can't stand it anymore you have a few better days and you can see a chink of light.

Rather than feeling defeated because you are more or less living back with Mum think of this as a very sensible caring Mom thing as this is the best place for you and your daughter at the moment.

Crazy Horse has given you some brilliant questions to answer. As the previous post says there are some medications for fibro that have the added plus of helping with depression. Being in pain all the time is enough to make anyone depressed but if this is becoming severe and you can see no way out of it you must not hesitate to see your GP and ask for an emergency appointment and get the help that is available for you. Fit people can sink into depression so there is no shame in this. If your depression is lifted I think you will find the pain more bearable as anziety and stress can cause your muscles to tighten which will have a direct effect on your pain levels.

Please come on here as many times as you need to there is normally someone around for you to talk to. Let us know how you are doing and how you get on.

Soft hugs try and be gentle with yourself and do whatever you need to do to get yourself

sparkleblue profile image
sparkleblue in reply to rosewine

Thankyou so much for this I know what you saying but I am grown woman that should have independence with my girl . but I do know it will get esayer this is happening to me and I know I have to adapt . I will go bk to my Docters to. X

rosewine profile image
rosewine in reply to sparkleblue

You are being very sensible about this, I think from what you have posted that you do need to go and discuss how you feel with your doctor. Sometimes we just have to accept we have to lean on others for a brief period of time in order to get back on an even keel, Like you I am extremely independent and hate asking for help but I realised that in the end I was hurting myself more by trying to be independent all the time and ended up in so much pain that I was no good to anyone not just myself. It took me a long time to be more accepting of this and it is still difficult but I have learnt that sometimes if I ask for this extra help when i really need it in the long run it is better for everyone. I can't promise adapting will happen overnight but in the end I think we all get more accepting of our limitations and make a different kind of life for ourselves and like MJD says you find increased enjoyment in small things.

Let us know how you get on when you see the doctor.x

sparkleblue profile image
sparkleblue in reply to rosewine

I will do and thankyou so very much for this very kind x

Lizzyear profile image


I'm so sorry you feel like this and your body is screaming in pain. I think you should book to see your pain consultant. I was like you going down and down hill all the time, I was scared how much further I could slip into the isolating world that fibromyalgia can impose. But my pain doctor changed my meds around, now I take pregablin, it's changed my life. I don't have that horrible fuzzy head, the needing to sleep all the time. Please do go see them, there are many meds they can tweak around with. They need to see you, when you are suffering this much.

Good luck, let us know how you get on. There are lots of listening ears on here. Sometimes you need to chat to people who truly understand, otherwise you feel like you are going to implode! Take care, be kind to yourself and try to seek some more medical help.

Gentle hugs x

lisatillett profile image

Hi sparkleblue.. I am new to this site also .. please do not give up the fight . You really are amongst fibrofriends here . I have had the day from hell today fighting against people who do not have a clue about the way we feel .I could go on and on but my hands are in so much pain typing . I was just about to turn in and face another nite of sleeplessness . I've had my sleeping pills that only give me 2 hours sleep anyway but i could no help replying when i read your post and felt your pain . Be thankkfull you have your mum . I am blessed with a son that helps me everyday .. with dressing me ..getting my medication.. supports me down the stairs when i am stiff as a board . No one understands this not even our GPs . They make us feel like hypochondriacs . you are not alone sweetie .... keep talking to us and we will all be ok supporting each other when we feel alone ... it's a lonely , invisable, disability ...and we have to educate people . Lots of love ... gotta go try and get some sleep to face another day of pain and exhaustion tomorrow . Stay with us . Nite nite xxx

sparkleblue profile image
sparkleblue in reply to lisatillett

I'm sorry to here you are in much pain to. Each and everyone who suffers from this illness my heart gose out to you all cause not only just the illness but we got the unbelievers to tackle to. Xx

TheAuthor profile image

HI sparkleblue

Welcome to the forum and I sincerely hope that you find it useful and informative, I have pasted you a link to our mother site, FibroAction:

FibroAction Wenbsite:

I am so very sorry to read of your suffering and of your struggle, and I genuinely hope that you can find some resolution and relief to your issues. I would urge you to ring the Samaritans if you ever feel that life is not worth living, I have pasted you the telephone number below so I hope that you are not offended by this, as I have given it to you out of friendship:

Samaritans: 08457 90 90 90 * (UK)

I want to genuinely wish you all the best of luck and I genuinely hope that you can fin the answers that you so desperately desire and deserve.

All my hopes and dreams for you


sparkleblue profile image
sparkleblue in reply to TheAuthor

Thankyou so much x

Hi sparkleblue :)

I can feel your anguish from what you have written and think it is brave of you to join us and share how you are feeling :)

In my opinion from personal experience it is difficult to communicate how we feel when we look 'normal' (I use that term lightly) and can walk and smile and talk like everyone else. Many of us here will have experienced periods of this at one time or another and it is good to share the anguish.... release it...... so that the pressure that it creates dissipates, lessens and helps us to regain focus of our situation.

You have been given some wonderful advice and support already and I'd like to join them with that.

Please go to see your GP to talk about how you feel it could be very beneficial as they can possibly help you :) I think I read an analogy by a member somewhere once on a post here 'that it is like we have a period of mourning at the loss of what we can't do anymore' to explain their anguish and anxiety. I think it is appropriate to use it at times.

The main things I'd like to say are that you are not alone here and if we can help to support you through a difficult time then we will try :) Please don't be offended but if you ever feel really down and need someone to talk to 'now' please call The Samaritans on 08457 90 90 90 * (UK) or 116 123 (ROI)

Or check out the website for your local branch on the following link there is also a link to 'contact us' which could be useful :)

I wish you wellness and send soft Fluffie hugs of support to you, remember there is always someone just around the corner who may be able to help or give a hug for comfort or support :)

Take care xxx sian :)

ailsamary profile image

Hi there and sorry to hear you are having such a hard time

Excellent advice in the posts above and hope that by reading it that it helps. I have a 'friend' who has said to others it's 'only fibro get over it' but all our experiences are so different. For about 4 years after diagnosis I managed to work but increasingly I had more and more time off until unfortunately I was pensioned out .

That was one of the hardest years of my life. In a way now that has all passed it now feels easier and I am finally managing to cope a bit better probably because I am rid of all that stress.

I wonder that in years to come there might be different diagnoses already my rheumatologist has mentioned primary and secondary and there's juvenile - i have secondary apparently which is due to all my other stuff.

Anyway what i am trying to say is that we are all different and whilst there is common ground between us, just because someone else can achieve something doesn't mean we all can. Also what we experience now might not be the same in the future.

Wishing you understanding which always helps :)


sparkleblue profile image
sparkleblue in reply to ailsamary

Hi thankyou for this you have really explained a few valed points there you v right I had to read your message again to proses it properly heads all over at mo and this is a v true point and I also think defo that there is different degrees over this . Thankyou so much for this take care in your journey x

Big hugs . Can sympathise and relate to a lot that you have said .. I can only advise you keep trying to be as strong as you can be. Rest as much as you can and try not to stress or worry over little things ....take care and all my love xx

You may also like...