Fibro fading out

Hi. I was diagnosed about 3 years ago with fibro. I was recently told by 2 different medics that fibro fades out as we get older. Does anybody know if this is true or is it just coming from the mouths of unbelievers.

[phlebo123]

H Julie,

I for one do not think their facts are right... I have been diagnosed for 8 years ( but have had symptoms since I was 18) .

Maybe we learn to "pace" ourselves better and of course we naturally "slow down" as we get older so perhaps we learn to handle the pain better.

I know several people who also have fibromyalgia, and none of them have reported it "fading".

Sorry to be a bit of a "non believer".... how dearly I would like their prediction to be true!!

Top of my Christmas list would be a CURE for this condition, and if not then I would like to give each and every one of us a "new body"

[Whatamug1]

Oh I hope they're right - but how much older do I need to get !!!

[Hidden]

I've not heard this at all - only got it when I was 57, a year ago, time will tell… x

[lou60]

I don't feel any improvement even when you factor in the natural aging process, I too have spent years seeking improvement. We are all different, a few people no doubt may improve so we live in hope. xx

[Hidden]

It was an occupational health doctor thata said it. He said he used to work in an elderly unit and never came axross it there. I said maybe it was down to dementia or other illnesses that covered it up or it was not very recognised then

[Hidden]

I have fibro and so does a friend and hers has been getting worse as she gets older and she is now walking with sticks - 7 years ago she was teaching full time.

[Hidden]

I must say that mine is gettingvworse. The pain seems to be spreading more than before

[Shazzzy]

I have now has fibro for 15 years, it has only worsened with age, am now 50. I wishit would go away but cannot for the life of me imagine it would

[Hidden]

Thank u all for ur comments

[mongmot]

Hi, the thing about getting older is that the fibro can be joined by arthritis and other painful things, BUT, I am older now ,(not old, just older!) I know that if I wake up one morning and not feel any pain I will panic and pinch myself then I will feel pain.!! Just kidding, . I have found that keeping my mind busy I can create moments where pain is,nt.

[TheAuthor]

Hi juliekp

It would be a nice thought but to the best of my knowledge, I am sorry to say, that this is not true.

Take care

Ken

[RayB]

I have one Dr who says it can just go, his partner and older Dr at the same practice says he has never known anyone this has happened to.

To be honest this knocked the heart out of me but I believe anything is possible.

I have had some symptoms calm down and then come back after a while, I also have had other things develop, the trouble is you never really know for sure if the new symptoms are part of the fibro or are something else even with the opinion of the Dr's their seems to be few hard fast rules.

There are common themes and the rest is a guessing game.

You just have to take one day at a time and not get to uptight about the whole thing, worrying about it is definitely not the road to progress.

[sbncmo]

Hi Julie,

I've had fibro for over 25 years, and it is now accompanied with CFIDS, MPS, & arthritis. I wish it went away with age, but it doesn't. Unfortunately, those in the medical field who try to minimize fibro by saying it isn't a "real" disease, that it is in our heads, or make statements like you were told, only make things more difficult for us. We already have to fight the disease. We shouldn't have to fight ignorance or insensitivity as well.

My advice to anyone who has fibro or has a family member with fibro - educate yourself thoroughly about it. And don't let anyone put you down or minimize what you are dealing with. Knowledge is powerful & it helps us to endure.

[dawnlancaster]

hi I'm 45 and still have it and Kitts got worse if anything .but were all deferent xx

[sophie22]

I have had fibromyalgia for 15 years and am 57now, mine is getting worst, would be nice to wake up one day and find it gone, looking forward to it.

[Artyrosie]

I'm 60, have had Fibro for 20+ years, and it has been getting worse rather than better. I'm so sorry - I know that isn't good news .... and perhaps it doesn't happen that way for everyone?

[Midori]

I was (finally!) diagnosed in 2010. At the time I was dancing, walking about, driving, even working. Roll on four years, and I'm housebound and in a wheelchair. It may get better for some, but for me it has rapidly worsened.

[fenbadger]

there are plenty of people who have had the condition for a long time.

However there's a school of thought it can improve or go into remission.

fibroaction-public.sharepoi...

I wonder if people disappear off this forum because they've found what they want. If so that's a result.

I'm pretty sure mine's better - under better control with good strategies.

[stumpedok in reply to fenbadger]

Hi fenbadger

came across this older post and had a look at your link. .....unhelpfully it has not been updated since 2009 and whilst it talks about 'effective treatment' it doesn't detail what that entails so really none the wiser sadly!

Ggrrrrrr

[fenbadger in reply to stumpedok]

nhs.uk/conditions/fibromyal...

and look at the links to the mother site. You'll need to browse a bit.

There seem to be 2 opposing ideas

1 it's curable

2 it's not

Unhelpful, but there are strategies you can use to help things.

Pacing. Adaptation. Prioritising.

ie don't attempt more than you can finish. Find easier ways of doing things. Don't stress about things that could really wait or be forgotten.

It's no walk in the park, but neither is it all doom and gloom.

[Mdaisy in reply to fenbadger]

Hello Fenbadger,

The NHS Choices website was updated with the help of the founder of FibroAction so the information should be the same. Are you referring to the prognosis page on FibroAction ?

Best Wishes

Emma

[fenbadger in reply to Mdaisy]

NHS Choices so presumably the same. There does seem to be a bit of "depends who you ask". Any ideas on this?

My original link was to Fibroaction.

Quite helpfully your link is to your pinned post so should be fairly easy to stumble across

[stumpedok in reply to fenbadger]

Hi fenbadger

i see mdaisy administrator for fibroaction has picked this up further so i have replied to her aswell.

i don't disagree with what you say about pacing, adaptation and prioritising ie lifestyle changes ...my issue perhaps is that the message about these key points in best practice self management seem to be getting lost under a focus on medication........detail about how to go about finding one's own individual right level pacing routine is missing...the only person I have found who goes into this in detail is the American Bruce Campbell. ....the word 'pacing' is bandied around but without any detailed explanation/instructions I wonder how many Fibros really grasp what it means / entails/looks like in practice? I for one need the kind of detailed practical approach Bruce Campbell writes well about.

Personally I think developing an individualised daily pacing routine at a level that prevents tipping over into crashes/flare ups is a task that takes time,effort, commitment,self discipline and real motivation. From the posts generally across this forum many Fibros seem to be living in response to their symptoms level on a daily /weekly basis and puting up with repeated crshes/flares rather than living according to a pacing routine they have worked out from previous self observation and keep to through self discipline so I wondered if the message about developing and living by a pacing routine is getting through generally ??

Anyway just my thoughts!!

All best and thanks for your reply.

[fenbadger in reply to stumpedok]

You make good points and I'm glad Emma has stepped in with some more useful information. I found pacing hard to get into but worthwhile as I no longer waste valuable energy doing the same thing twice.

Good luck in your quest.

[stumpedok in reply to fenbadger]

Thank you.....i have just posted my separate reply to Emma/mdaisy...you are clearly ahead of me on pacing but I am determined to give it a proper go....I don't know how long ago you were diagnosed. .....wondering where did you get your knowledge about it etc??

Good to hear it works well for you....There is hope for me yet!!

All best.

[fenbadger in reply to stumpedok]

Mostly off this site!

I'm wary of so many internet sites and there are some strange people about, but if you can keep to reputable sources then progress should be reasonable.

I was diagnosed less than 2 years ago, and from my Doc I started looking at NHS site which led to Fibroaction . . and the rest is history. There's lots of info out there, sometimes too much so I pick and choose a bit. There's lots of wisdom on here and personal experience can be worth a fortune, so I listen to it. Zeb's posts for instance can be really useful. We're all different and what works for some, doesn't necessarily work for others.

[Mdaisy in reply to stumpedok]

Hello Stumpedok,

Thank You for the message below & your kind words of the charity as a whole.

I'm afraid on this occasion I disagree with you as we always recommend a combined approach and have our Expert Patient range of factsheets with other information including this link below called 'Listening to your body'

fibroaction-public.sharepoi...

I mentioned the updated Complimentary Therapies previously that was updated in 2013 (hence number 5 & 7 factsheets from 2009 are missing) as this factsheet is now in place of this (all research based) So we certainly do promote other therapies and not only medication as recommended treatments.

Here on the community we often talk about Progressive Muscle Relaxation, Push & Crash cycles, Gentle exercise and much more ....... However that being said as I live with Fibro too, some things like pacing & gentle exercise you need good symptom control before being able to undertake these things (well this was the case for myself anyway)

If you search the community I expect you'll find many posts discussing all these different things mentioned. You are right pacing on our website does not recommend a certain program or regime and this I would say is because everyone is on a continuum of severity. In my personal opinion to give advice to someone without knowing their symptom severity & their medical history would not be appropriate.

A physiotherapist would never advise anyone without medical history & a full assessment. So in my personal opinion, listening to your own body is probably the best advice and to understand push & crash is helpful too.

Have you looked at FMA UK or Fibromyalgia UK to see if they have any other useful information? As this may be useful to you.

I understand completely your point and I will certainly look into others advice about pacing online out of interest. You are welcome to private message me links that you think are particularly helpful and I will read them.

Also on my travels around the internet if I find any research articles that may be of interest to you I'll message you too. Living with Fibro is often about sharing information, however members should always question sources to make sure the links are reputable.

I hope you are having a good day

Best Wishes

Emma

FibroAction Administrator

[stumpedok in reply to Mdaisy]

Hi Emma

i think this is one of those times when we'll have to agree to disagree on the idea that a "combined (medication and self help strategies) approach" is "always" required/essential for every Fibro sufferer.

I don't follow when you say you need good symptom control (through presumably medication) BEFORE implementing self help symptoms strategies like pacing when the purpose of following a pacing routine strategy itself is good symptoms control?

I wasn't advocating a particular pacing scheme but rather had pointed out someone who explained how to go about working out your own individual routine through close self observation and listening to your body and adjusting accordingly until you found a combination of daily activity/rest/exercise levels that was sustainable over the long term. I think that sounds reasonable and worthwhile.

At the end of the day each of us has to decide for ourselves what routes we want to take after weighing everything up.

I wish everyone the best of luck with whatever they choose.

[Mdaisy in reply to stumpedok]

Hello again,

I must say the written word is often difficult to interpret and therefore can be misunderstood.

Therefore I think you may have misunderstood my reply. the main points I was making were;

a) We recommend both medications & other therapies (as you seemed to think we were solely promoting medications) So I wanted to clarify we always advocate a combined approach.

b) A combined approach can be defined in many ways not always medications & therapies. It could easily be complementary therapy alongside pacing & gentle exercise without medications

c) I mentioned the severity continuum & I have recently started a poll about Dr Pellegrino's 8 part spectrum. My point was that (if you refer to the spectrum) that someone at Number 8 may need both medications & therapies but if you relate to Number 5 you may be able to control symptoms without medications & use therapies only. I think that understanding that there are different scenarios is important & individuals will need their own approach as you alluded to at the end of your last reply

These scenarios could relate to the spectrum, many can have primary Fibro or secondary Fibro.If you have other conditions like Rheumatoid Arthritis alongside Fibro for instance may make the it more complex to find a combined approach that works and would most likely need medications & therapies to aim to manage the condition.

I obviously do not know your medical history and where you are on any spectrum or severity continuum. It may be for you personally that pacing works on it's own but I wanted to mention that your Fibro symptoms may not be the same as another individual depending on their medical history and severity. So, in these cases Fibro may not be able to be managed solely with therapies.You have obviously found pacing works very well which is fantastic but we cannot assume that this alone would be help all people living with Fibro.

I think we actually agree as it is up to the individual to find what works for them. Fibroaction provide evidenced based recommended medications & therapies so our members/supporters can be an informed patient. This means they can be involved in their medical treatment and plan their own combined approach based on the information given.

Best Wishes

Emma

FibroAction Administrator

[Mdaisy in reply to stumpedok]

Hello Stumpedok,

Thank You for your feedback about the website link. We are in the process of updating the information unfortunately this takes time as our factsheets are based on research, plus the content is then written and reviewed so we can hold the Information Standard which we previously did.

The information about recommended treatments can be found with all links within this post with a recent Complimentary Therapies factsheet updated 2013, here's the link;

healthunlocked.com/fibroact...

There have been a few treatments that may be effective for Fibro since 2009 but these have to be studied using a placebo and a number of participants before they can have collective studies confirming it's efficacy. Unfortunately this also takes time.

I hope you find the current information of some help and keep the website www,fibroaction.org bookmarked for the future. Or remain a regular contributor here as this community is run by FibroAction too!

Best Wishes

Emma

FibroAction Administrator

[stumpedok in reply to Mdaisy]

Hi Emma/mdaisy

Thanks for picking up on this.

If you have a look at my reply today to fen badger you can see the kind of points I wanted to raise in relation to pacing in particular.

I appreciate the issues the Charity has in relation to keeping info on the site updated but I can't help wondering whether the 2009 article hinders rather than helps new visitors to the site especially those newly diagnosed? Who are often lost, confused etc.

When you talk about new treatments under research and use of placebos that implies that the answer lies solely in medication.......as you can see in my reply to fenbadger today i have a strong personal interest in all the different non-medical approaches which may help Fibros live 'better' with the condition....emphasizing all those things within our personal control that we can do to help ourselves. ...and by doing so feel less powerless in the face of this life limiting long term illness. ...a personal viewpoint with which others may well disagree!!

I congratulate Fibroaction for all their hard work on behalf of this illness.

All best

[nedd]

Always the confrontationalist I would have asked him where was the evidence.

Where there is life there is hope I suppose.

Fingers crossed.

[Hidden]

Thanx y'all. I haven't really found any evidence but is good to hear opinions of people in my position

[Fluffymare in reply to Hidden]

Hi juliekp

I am 78 and can only say that my pain was quite moderate until 18 months ago

Since then it has become much worse and debilitating, together with anxiety.

It seems to be different with everyone.

Pat

[kauto]

well I`m 68 and not noticed it getting easier but I suppose you could say I have my medication right for the last year or so which could be read as making the pain easier ,but physically the pain does not go away

[Regnofibro1]

Well I have had it since I was a child. I was told a lot of things way back then. Didn't believe any of it. I worked in many fields before becoming a chef. I did that for 20+ years. 10 years ago I hit the floor and that was the end of that. So now after 40+ years of living with Fibro. I now walk with a cane. I also have damage to my spine because of broken hips at birth. If Fibro fads it really needs to start. Because right now it has only gotten worse. I have days where it takes everything in me to just get up out of bed.

[lindacaig1]

I would definitely say it doesn't fade, u can try lots of different treatment to help ease with daily life ,keeping a diary help,everyone is different things work better for others ,trial and error xx