Is this forever?: Can anyone tell me... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Is this forever?

Naomi-M profile image
27 Replies

Can anyone tell me how long my fibro will go on for? Is it forever? So hard to always put a brave face on it when struggling with the extreme fatigue and trying to deal with day to day life and being a single mum of a teenager. Feeling low. :(

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Naomi-M profile image
Naomi-M
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27 Replies
Bambamsnan profile image
Bambamsnan

Oh dear naomi my heat goes out to you I have only been recently been diagnosed I feel like it's a effort to smile while in so much pain we just take extra effort to enjoy  are good days 

Sending hugs 

Carol ☺

BlueMermaid3 profile image
BlueMermaid3 in reply to Bambamsnan

Hi Carol

I find popping a wire hanger in my mouth helps to maintain the smile! :)

Lu xx

Bambamsnan profile image
Bambamsnan in reply to BlueMermaid3

We do well don't we matches for are eyes and wire hangers for a smile is there not a app these days to help us 😃😃

Carol ☺

BlueMermaid3 profile image
BlueMermaid3 in reply to Bambamsnan

There probably is an App but it would be too tired to work 😅😊 xx

Bambamsnan profile image
Bambamsnan in reply to BlueMermaid3

😂😂😂

peck profile image
peck in reply to BlueMermaid3

Good one Lu haha.Peck❤

BlueMermaid3 profile image
BlueMermaid3 in reply to peck

Thx my friend 😊 xx

Sab123blossom profile image
Sab123blossom

We all have low days..perhaps that is a survival thing...its harder at some times than others...I have learned, the hard way, that to cope with this thing I have to change myself and my attitudes...personally I have certainly learned how not to get myself worked up by some of the behaviours of my sons...it was hard,  am stil learning, but it helps ME to manage and cope with my fibro...I do so hope that you find a less low place soon and that something will make you smile today...but you may have to be open to that..and it is so hard sometimes isn't it?....big hug and go well....I have accepted, albeit reluctantly,(kicking and screaming at times, which was unhelpful) that I have this fibro , and I must try to change myself so that I can cope with it...and I cant change what is going on around me and where I am...so we all try and try...keep on keeping on...and I am sure that out of all the caring  comments to your post, there will be something to help you.....warm wishes...x

BlueMermaid3 profile image
BlueMermaid3

Hi there

Unfortunately Fibromyalgia is tailor made to each person and the way you feel, will be completely different to how another person may be feeling, although the pain and fatigue are common to most sufferers.

Just something that I thought about, have you been to a Pain Clinic, Pain Management Clinic or had a course of CBT (Cognitive Behavioural Therapy).  If not, these are all things that your GP can refer you for.

I'm guessing from what you're saying that it's the fatigue that's getting to you more than anything?  If so, make an appointment to see your GP and ask him or her to refer you to a Chronic Fatigue Clinic and/or a Pain Management Clinic.

These clinics 'teach' you how to understand and deal with fatigue and pain and there are usually 6 sessions.

The CBT could be good for you as well.  This is a course of usually 6 sessions with a psychologist to talk through issues around Fibro and CFS.

Would you say that you are starting to feel depressed?  You can private message me if you like and don't want to say so here.  Although having said that no one here judges anyone else.

I really hope that maybe some of that helps?

Wishing you less fatigue and more peace

Lu xx

Admin Volunteer

in reply to BlueMermaid3

This is really helpful thank you Lu, being fairly recently diagnosed I'm also struggling to accept fibro and will follow up the CF clinic. Difficult to comprehend this is a forever thing, which I think it must be, I so empathise with you Naomi M. 

Having been lucky to have received good Councilling last year the most useful gain was to be kind to myself and do what was within my power to make things easier, letting the unecessary things go, that it takes time to adjust, that it's human and OK to be struggling.

I have been looking for answers all over the place and have found many of them here through people's generous sharing, I hope you find some peace in this.

BlueMermaid3 profile image
BlueMermaid3 in reply to

Hi Katiecj

I am sorry to hear that you have recently been diagnosed.

Something that was said to me many years ago, regarding parenting was "choose your battles".

Personally, I think this also works well with everything in life, including Fibro.

Some days, just giving in to things, is what we need to do, rather than battle our way through them.

Welcome to the forum :)  It is great to have you onboard.  Please do post with any questions you may have or if you need any advice.

We have quite a few newly diagnosed members, as well as the veteran Fibro sufferers (i.e. the old ones like me :) )!!

I look forward to chatting with you again. 

Wishing you less pain and more peace

Lu xx

Admin

in reply to BlueMermaid3

Thank you xx

It feels forever  dosent it X

Sorebones profile image
Sorebones

As usual Lu has given you some excellent advice Naomi. Nobody can give you a definitive answer I'm afraid. There is so little known about Fibro. There are still medical professionals who say that it's all in our heads! Although, we know just how wrong they are. 

I think what you are asking is will it go away on its own. I seriously doubt it I'm afraid. Medications can help but don't take it away completely and until they find the cause of Fibro they can't begin to start on a cure, that is all a long way ahead, but we certainly can't say never.

We have all gone through the struggle of trying to get our heads round this hellish medical mystery, living with it day in and day out. But that doesn't mean that you can't get some help with it. Lu has told you about some of the best options available to you so I won't go over them again. I can say from my own experience that the pain management programme turned my life around. Before I did my PMP I was just like you, wondering how I was going to manage, feeling very depressed, even suicidal. 

Please take heart. There is light at the end of the tunnel. We have all been where you are and you have come to the right place for support 🐸

peck profile image
peck

Sorry your feeling down.Hope your spirit picks up soon.Take care.Peck🌻

Naomi-M profile image
Naomi-M

Thank you all for your kind messages. I think I was hoping someone would tell me that it does get better eventually. I'm usually very positive and am very careful in managing my symptoms, but sometimes it all gets on top. I would just like to do some gardening (for instance) without knowing it's going to wipe me out for a couple of days.

But the upside, the sun is shining today and so I count God's Blessings.

BlueMermaid3 profile image
BlueMermaid3 in reply to Naomi-M

Hi again

I know exactly how you feel. 

Please do look into a Pain Management Clinic. I do think it would be of great benefit to you. 

Lu xx

rosewine profile image
rosewine in reply to Naomi-M

Hopefully you will eventually learn to pace.  Even experienced fibromites unfortunately don't always take their own advice and as you have found out oay for it big time.  With more experience if the illness you can often find ways around things, eg like I did by moving into a bungalow with a pocket hankerchief garden so everything on the flat and far less work.  Not as nice as the old place and I miss the big garden but reality hit that I had to manage fibro not let it manage me.  Sometimes I am successful sometimes not as it is a learning curve.  Don't feel embarrassed about having low days as we have all worn the T shirt and that is what is great about this place as hopefully we can support one another through the bad times.x

Naomi-M profile image
Naomi-M

Thank you. The pain is pretty much under control unlike so many others I see on here. I take 1800 mg's of gabapentin each day along with citalopram and 3000 mg of paracetamol. It's the fatigue and exhaustion I struggle so badly with alongside the fog. The daily routine takes massive will power to get done and it gets worse as the day goes on. Walking is OK but standing is dreadful. I'm good sitting but only if my legs are up and lower back is supported. Lower back not good at all. No concentration and foggy fog! Hey ho.

TheAuthor profile image
TheAuthor

Hi Naomi-M

I am so genuinely sorry to read that you are struggling with fatigue, and I wish I could put my hand on my heart and say it won't last for you. However, as Lu says, we all react different with our Fibro and to our medication so it is impossible to say what will happen in the future. I want to sincerely wish you all the best of luck and please take care of yourself.

All my hopes and dreams for you

Ken

Hi I asked the exact same question, never seems to end , does it, we are all different and suffer differently , but some days are better than others, I also have a teen, but am lucky my Hub can help her. I hope you have a better day soon. Take care.xx

Betty67 profile image
Betty67

Had the condition for nearly 30 years and I am still expect a cure one day. Like most things being as healthy as you can, getting and listening to advise helps, and pacing, so do your garden but you don't have to do it all at once. I am currently consulting to make mine easier to look after. I also have a cleaner once a fortnight for a few hours to keep the house under control.

BlueMermaid3 profile image
BlueMermaid3

Hi there

I have just realised that your post is not locked.  As you have got so many replies, please may I lock it for you, so that only the people on our forum can read it?

Could you get back to me asap?

Thanks

Lu xx

Admin

Naomi-M profile image
Naomi-M in reply to BlueMermaid3

Sorry I haven't replied. Why do I need to lock? if you think it is the right thing to do then please do go ahead. Thank you.

Mgbender57 profile image
Mgbender57

I had fibro for 10 years at which point I took Paxil.  I took Paxil for about 12-15 years and I am happy to say I no longer have it.  No more feeling more tired when I wake up than when I went to bed, no more pain that moves and settles in in different body parts.  Now I have fairly severe osteo arthritis, which seems like a walk in the park compared to fibro!   Feel better, there is hope.  I no longer take any antidepressant btw.

in reply to Mgbender57

Whats praxil plz X

Mgbender57 profile image
Mgbender57 in reply to

Paxil (paroxetine) is an antidepressant in a group of drugs called selective serotonin reuptake inhibitors (SSRIs).

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