Just a question : Hi I'm new on here I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just a question

Elkins profile image
Elkins
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Hi I'm new on here I was diagnosed with fibromyalgia a few months ago even though I know I've had it for years. I'd like to ask a question. Does fibro get worse as you get older or does it stay the same with flare ups? I'm asking this as I work full time as a SEN teaching assistant and also have a special needs son who is very demanding and need to stay the best I can to care for him and hold down the job I love πŸ˜€πŸ˜€.

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Elkins profile image
Elkins
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ryanbone10 profile image
ryanbone10

Hi and a warm welcome to FMA UK Elkins ,

Have a look at our Mother site, this will give you wonderful information! and a better insite to how we operate!

fmauk.org/

If you look to to the right hand side of the screen you will find a heading "Pinned Posts"

Pls feel free to read them by clicking on the blue lettering and then come back to us with any questions you may have!

Answering your question "Does fibro get worse as we get older"

I would say we are all different, some friends on here have it worse that others as they also suffer from other illnesses aswell. Some take medication on a daily basis, others do not.

Lifestyles may be different. Some can still work while others cannot!

Looking forward to seeing you around!

Hugs,

Elizabeth :) xx

Sorebones profile image
Sorebones

The official line is that Fibro is not degenerative. Most of us would say that they are very wrong. The majority of forum members have found that it does get worse over time. Not what you want to hear I'm afraid. 🐸

BlueMermaid3 profile image
BlueMermaid3

Hi there

Welcome to the forum :) I can see that our Elizabeth has given you the link for our mother site. It is well worth a look.

As to your question. As with everything Fibromyalgia related there is no one real definitive answer!

Fibro is not supposed to be degenerative. However, everyone has a different story to tell.

I worked and raised a family for many years with Fibro in the background of my life and I was able to function normally (whatever normal is) with the aid of some strong medication.

I then suffered a huge trauma in my life. Now Fibro is at the very front of my life. I dearly want to return to work (I used to do the same job as you :) ) but I know that I wouldn't last five minutes.

For me personally, I have never recovered from my trauma, in Fibro terms, and now I struggle every single day with severe pain and cannot do all the things that I used to take for granted.

We are all so different and suffer with Fibro at such different levels that I think it's hard to say for sure one way or the other.

I desperately want to say to you that it doesn't get worse and it certainly doesn't for some. I very much hope that you are in the latter category.

Kudos to you in working and having a son with special needs. It's not easy.

Be kind to yourself

Wishing you less pain and more peace

Lu x

Administrator

Elkins profile image
Elkins in reply to BlueMermaid3

Thanks for you reply x

BlueMermaid3 profile image
BlueMermaid3 in reply to Elkins

Apologies. I meant to say I was diagnosed in 1981 xx

I've had it for 25 years but only found out what it was this year, so it has got worse but I do have flare ups. Lately things have been better and If I take care of myself and get plenty of sleep I have less flare ups. It's school holidays at the moment and my teenage son is gaming all night as usual. At 10pm each night I completely zone out of what he's doing, read my book and concentrate on getting sleep for work the next day.

Janet28 profile image
Janet28

Hi Elkins & welcome to the site ☺ they say it's not degenerative but I have been told i have degenerate nerve damage, so not sure how that is but I do also suffer with arthritis and my arthritis flare ups start the Fibro off so it's hard for me to say. For me, I worked in a very physical job, had 3 kids & business to run with my 'then' partner.

There were times I struggled but muddled on working until I just couldn't do it anymore but I felt I made myself worse by the job I was doing but loved it so much & didn't want to give it up. I was extremely unwel the last year i worked & just couldn't do it.

Now 6 yrs on & I'm no worse with Fibro, just the Arthritis. I'm not so stressed, as no worry with work or money. I now live with my youngest daughter who helps me and she has 2 kids with special needs & a teenager & runs a business on her own.

We are pretty sure she has Fibro too, has all the symptoms and its like life repeating itself which is pretty crap but she gets through, everyone is so different and some people can do it if they have to, some can't.

I think if you are in a non physical job & they can be flexible when you are sometimes a bit late or have the odd day off when you really can't cope, the longer you will be able work hopefully.

It's such an individual thing, just telling you my circumstances, hope it helps.

Peace, luv n light

Jan x

Elkins profile image
Elkins in reply to Janet28

Thank you Jan for your comments x

25rosclare profile image
25rosclare

I don't think it gets worse, as you get older the body gets weaker and the fightto manage it and to have a life is harder. As I get older (I was diagnosed 19 years ago) the worst effect is the cognitive side I have moments when my brain just won't work I just stand for a minute feeling like an idiot

Shadows-walker profile image
Shadows-walker

Hi you have been given very sound advice, I would just like to add that this week I was told off for not taking my condition not serious enough ! You must try and keep as stress free as possible , so my advice to you is be as kind and gentle with yourself , don't take on anymore than you truly have to !

I find if I use this site to touch base with daily I am so much better , if I am silly enough to go it alone I am in trouble !

Gentle hugs and a warm welcome

Chris xxx

Messi profile image
Messi

Sorry but yes I have got a lot worse in the last few years ,got bad arthritis which doesn't help,you definatly need to pace yourself ,as overdoing it will make things worse ,and makes it harder to pick up good luck πŸ™‚

I think myself! that it probably isn't degenerative! "BUT" it's whats round it that it has effected that collapses as it progresses in a way like MS also AIDS & cancers as it's often the other things that have become so weakened that cause death etc.

Think of it this way if you keep whacking a wall on a house with a wrecking ball in the end it will crumble but the balls been the same all the time but wall falls down which takes others out and the roof which then collapses the whole house and that was caused by the roof collapsing.

So in it's self one thing but everything round it degenerates as the body is interlinked with so many system to control things but once parts are weakened it can't control things to maintain a good health.

So maybe it does or doesn't? but what it effects does plus we also learn ways to control it for ourselves(i take no meds but sleep if feel tired often more or less all day sometimes till just wake up also if not feeling great watch what im doing)

When driving i have my blanket/big coat etc with me so if feeling tired just stop and have a kip.

One of the things with meds is that almost all don't actually work onit they just comfort your way of thinking! and do cause more issues with it long term along with other issues on you.

I did take part in a country wide study last year speaking to lady running it said about what i'd worked out and things she knew & meds was one that came back!

One of the reason which i worked out is that Fibro gets in through the back doors as it were(similar to microsoft/windows tat grrr)where as pain etc along with meds work on front door side so if you break a bone that pain is out there which take pain killers they work as through front door where as fibro being through back door is far more deep seated so only the part out there it works on but not deep seated parts.

What i worked out is it's coming about through hormones pretty sure lutenising one!

Which is why they did a study on females with constant pain at John Radcliff Hospital last year i did post up as looking for female volunteers.

Quacks think im worried about my health! (no worried about there lack of knowledge/care) but one's that actually talk to me say i know so much.

One of the thing i guess with Asperger's is can work/get into things as often i can work things out etc before got to end of paper.

plus also can put things together to make a chain of things which is very often correct! as im very methodical in way i work/process information.

TheAuthor profile image
TheAuthor

Hi Elkins

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. As the others have said Fibro is not a progressive illness but I am convinced that when you have had it long enough it does take it toll on you? 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

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