Getting worse with age?

Hello,

Tentatively, without meaning to start a debate, does FM really get worse with age? Or is this entirely dependent on the individual?

I've seen this information handed out quite freely on here, or variations thereof, but my consultant tells me the exact opposite - that in many cases the symptoms can improve greatly with age.

Aren't we in danger of tarring people with the same brush, and scaring them with this sort of information?

33 Replies

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  • My GP ( who is a rheumatologist) told me that as I age I will always be weaker than the general population. His words not mine!

  • I am now 60 I've had fibro for most of my adult life, diagnosed around 14 or so years ago. Obviously some of my symptoms are to do with aging however I certainly hav'nt felt any improvement with age, that being said we are all individual we know we feel. I rely on physio, my G.P and Rheumatology team to keep me ticking along it is all ups and downs. Possibly with great age when one would likely slow down the effects may not be so keenly felt.x

  • The prospect of it getting worse does terrify me. I am 20 years old. I have all of my life ahead of me, and I'm already I am struggling just to lead a normal life. I have a lot of problems with remembering things, concentration and processing things. I'm just not sure I could cope with it getting worse - and increasingly so.

    I hope your consultant is right!

    xxxx

  • I agree. Sounds like you have not long been diagnosed like me. I don't know where I stand and that is what terrifies me most. Will it get worse with age? Do it depend on the individual? It scares me.

  • I can only speak from my own experience. These days I do not tolerate any stress in my life, had enough to last a lifetime so I would advise young people with Fibro to, as much as possible, keep stress to a minimum it does us no good, I don't take any nonsense from anybody. Live in the moment, accept your limitations, seek out the fun in life don't allow this illness to define you, keep looking in on this Forum it has helped me enormously XX

  • I love your positive attitude! in too seek to always look for the fun, meditate, prayer, do yoga and always remain hopeful!! it's been 23 years and I feel 85 percent better!!m

  • Hi FunkyFairy,

    This worries me too, I'm 24 & pain started about aged 18. X

  • Hi charlie_red,

    I'm sorry you're in this situation and worried too - I suppose because it's different for everyone that there's no point in worrying or making predictions of what's going to happen. Easier said than done though.

    Gentle hugs,

    Fay xxxx

  • That is true and worrying probs makes things worse

  • Hello Equinearcher77,

    Thank You for your post.

    We've had posts before asking if Fibro is progressive, here's Lindsey Middlemiss reply on the post below;

    Unfortunately it is not unusual that, without effective treatment, someone with Fibro will get worse over time. However, Fibro is not a medically progressive condition where it would get worse no matter what and you can also improve, no matter how severe the Fibro is. A comprehensive and accurate diagnosis and getting effective treatment are key. To get these, most people with Fibro in the UK need to educate themselves and become expert patients

    healthunlocked.com/fibroact...

    You may have read comments from members from their personal experiences and they may indeed have felt worse as they have aged. However as you say, Fibro itself is not progressive but some may have additional conditions, stressors that have impacted on their Fibro over the years.

    I must say, that I don't think anyone has said this worsening of symptoms is research based and HU mention Anything published on HealthUnlocked should be understood as being the views of that individual and does not necessarily represent the views of a particular patient group or of HealthUnlocked as a company

    support.healthunlocked.com/...

    The way everyone feels is subjective I'm afraid with many variables which should be taken into account. If we only had members with Fibro as their primary & only condition we may be seeing different opinions & views about ageing or maybe not??!! There are many question marks of Fibro which I am sure you'll agree needs far more research. However many people have other conditions either as a primary condition with secondary Fibro or primary Fibro with secondary illness.

    The symptoms from many illnesses can be synonymous to Fibro hence some people experience problems with diagnosis. It also it may be hard for a person to distinguish between Fibro symptoms worsening or another condition impacting on Fibro at any one time. Please see the link about symptoms, other conditions & diagnosis which might be of interest;

    fibroaction.org/Articles/Be...

    I am in no way doubting anyone who says it has worsened as they have aged as like I say there are still so many unanswered questions, but current research points towards Fibro not being progressive. Symptoms may wax & wane and move up & down a continuum of symptoms throughout your time with Fibro plus ageing & chronic illness can open us to other conditions with similar symptoms.

    Fibro in my own personal opinion is like a pendulum swinging from mild to severe symptoms and sometimes it might stop somewhere inbetween sometimes too for a while.

    Thank You EquineArcher77, anyone wanting to read 'All about Fibro' please see the FibroAction website, link below;

    fibroaction.org/Pages/About...

    Best Wishes

    Emma :)

    FibroAction Adminstrator

  • Thank you Emma for that wonderful, accurate answer. I was trying to figure out how to say all that. So happy you did 1st, as I am certain you did a much better job of it. God Bless

  • Hi EquineArcher77

    I sincerely hope that you are feeling well today? Although there is no scientific or medical evidence to prove that Fibro gets worse with age, I am a big believer that we are all individuals and therefore we all react differently to both our illness and our medications.

    All my hopes and dreams for you

    Ken x

  • Thanks Mdaisy.

    I'm one of those who thought it might be progressive with age as I have had more illness the past 6 months. It's good to know this is unlikely, since other conditions are treatable by themselves. I'm undergoing several diagnostic tests and I hope they are separate from fibro.

    Clare

  • hi I just want to say that even though I have developed other illness's as Ive got older my fibro has improved loads. wishing you well

  • Hi Fellow Fibromites,

    This is a very interesting debate and I can only speak from my personal experience with fibro. I have had fibro for over 30 years and I am 64 years young:). Every time I had an emotional turmoil my symptoms increased enormously and I thought this is unbearable. The moment I have dealt with and worked through the emotions, my pain and symptoms have decreased. What has worked best for me? Low dose Lithium Orotate and LDN (low dose Naltrexone) and I am still taking Lyrica 75mg at night. After my last flare-up I made the decision not to let people, family upset me any more and told these individuals that they are actually causing me physical pain with their actions, comments or whatever. Every time I have a flare up I can now actually work out why this has happened. I could almost say I no longer have serious unbearable pain. I do not take any pain medication, unless I have a hectic day ahead of me . I am also blessed that I only have fibromyalgia and so far no other condition. So to sum it up, no the symptoms didn't get worse with me being older now - in fact I have them under control.

    Blessings to all of you

    Much love

  • I think it does vary enormously from individual to individual. In my case I've certainly grown progressively worse but I do have other illnesses too. I went to a pain management course where I was the oldest participant and definitely the worst healthwise. However the next oldest (only 5 years younger than me) said she had become much better over the previous few years and was leading a more active life than she had for a long time.

    My consultant at the pain clinic told me people often feel better in old age, 70+. So maybe there's something to look forward to!

    One thing I would say, even urge, to you young ones is never NEVER pretend you're better than you are. I spent years pushing myself to do things that damaged my health because I felt too ashamed to tell people about my health problems. I regret it now. So please never be ashamed and never sacrifice your health for the convenience and comfort of others. It ain't worth it!!

  • I think it all depends on lots of factors , I was really bad after losing my Mum last year but when I started to come to terms and thought my Mum had had a short life and I should make the best of mine and got on with little stress I have had a few good months .

    Then my daughter won Fairy Queen and I had to make float and get things sorted and obviously walk round carnivals with her etc the stress kicked in and I have had a flare up ever since but it's subsiding again now . My main trigger I believe is stress and I think that's not gonna change . As in many illness I think positivity is the key.

    But as we get older and suffer things like arthritis etc think that is going to be difficult but as I said make best of the good days and keep smiling :)

  • Wow, some great responses, and thanks to Mdaisy for your response. Don't worry, I'm not holding HU responsible for anything that is said on these boards as, as stated, we are all individuals with differing opinions and experiences.

    I suppose my main concern, and this may just be a phrasing issue, is that I have, unfortunately, seen replies to posts made by either new, concerned or anxious members, where they have been informed that it "will only get worse".

    I MUST STRESS - the vast majority of people here are nothing but supportive and upbeat, so if you are one of these, then this post is not aimed at you :)

    It just saddens me I guess to see such potentially damaging "information" (views) given to people who, and I judge from words on a screen only, may be feeling very low and uncertain about what the future holds. We must all remember that what one of us feels, another may not, and whilst some get worse, some get better.

    As stated in a few of the above replies, I feel a positive mental attitude is key (I, for example, NEVER refer to myself as a sufferer of anything).

    Sincerely hoping I haven't offended or upset anyone with my views,

    Rach xx

  • Hello Equinearcher77,

    Thank You for your understanding about the community & it's content mentioned in my reply just to clarify to all about the subjective & personal comments.

    You have had lots of replies & I was wondering if a poll of this might be the way to go, to see how many people feel they are getting worse with age. Variables as mentioned would be other conditions, stressors and others.

    What does everyone think ?

    Emma :)

    FibroAction Administrator

  • I'd be interested in one Emma.

    I recently had a conversation with Occy Health that gave me food for thought. There are indeed people on this site who have had FM for a while and have got worse. There are others who seem to have disappeared. Question is why?

    Did they find the site (and others like it) of little or no support?

    Did they get better and no longer need the support?

    Did they fail to find what they were looking for? (and presumably still searching?)

    There may of course be other reasons. I'm suggesting that long term sufferers have stayed with the site and those with satisfactory results may have left thus skewing the membership.

    My GP is sure it can be effectively treated with the treatment as it were a "crutch" or support while the body recovers from an attack - wherever that attack came from.

    It's true that what I have done recently has eased the situation but I still run out of steam rapidly.

    It's also true that alarm bells only rang about a year ago - or so - and diagnosis was made only in January this year.

    I also see FM sufferers on here with multiple conditions - surely the negative effects of these must be taken into account.

    Which now begs the question "is there a reputable piece of research?"

  • Speaking as someone almost 70 who has had fibromyalgia among other things for maybe 30years I can speak from experience, and mine has definitely got worse, as you say what one of us feels another may not and that's the key to your post I think , everyone is different and has their own experience so one cannot speak for the other and while it is wonderful to have a positive attitude when you are in the throws of a bad flare up its very difficult to be 'upbeat' Everyone is entitled to their opinion, but I do think a lot comes to having experienced this disease and its ups and downs over many years.

  • Hi I hope everyone is as well as can be

    I don't know about age as I am only 28 but I don't think it is progressive in a medical sense, I just think it changes over time

    Ive had fibro since puberty, really kicked in about 16 but looking back it was nothing compared to now.

    Activity & virus's make me flare the worst. Stress gives me headaches.

    So I don't know how it will be in the future but so far it has very slowly worsened over time at a slow, steady pace.

    I try not to worry abut the future, I can't predict what will happen & I wouldn't be able to change it even if I knew what was coming so there's no point making myself ill over it

    Take care everyone xx

  • Well that's all very interesting, does it get worse with

    Age, what age 60, 70, 80,

    I am 62, I would say that mine has not got worse, but I

    Now manage it better, I still work, get good days and

    Not so good.

    No one not even the film stars get to, let's say 50

    Or 60 without aches and pains it's part of the ageing

    Process, after all you would not expect a car of that

    Age not to have problems with it's engine.

    I would say stop worrying about it and enjoy what you

    Have. By the time most of you are old there will be a

    Cure

    Love viv

  • I know mine has gotten worse.

    More symptoms and longer flare

    ups. So I believe the info is not

    For everyone.

  • Speaking only from personal experience, my Fibro has definitely got worse since initial symptoms 4 yrs ago and diagnosis 2 years ago. I have gone from being very active & healthy, to struggling to walk & function - having to use walking stick short distances & mobility scooter longer distances, cognitive problems, as well as the nerve & muscle pain and fatigue.

    I don't know if Fibro gets to a certain stage with each of us & then levels out or if it continues to progress.

    I do not have any other conditions which contribute to the Fibro, so these can not be to blame.

    Pacing, pain management & trying to control stress all help to keep flares under control, but day to day has become harder for me & I am know having to face the prospect of giving up work as I can no longer function to a level required to hold down a job.

    I don't say any of this to scare anyone and as stated this is just my experience, but I would be interested in a poll to see if people's symptoms worsen over time, or if just initially in the first few years of this illness. although I appreciate we are all different.

  • All I know sweetheart is that mine has gotten worse as the years go on!!! xxx Mitzi

  • I believe a poll would be interesting, so long as it wcoulden with some clarifying parameters for comparison. For example the poll should ask if their fibromyalgia is their only diagnosis, primary diagnosis or part of a complex set of diagnoses. It could ask how long the had the fibro. 5+, 10+, or 15+ years. Also their age group should be included! Then when graphed we could compare like conditions. Ie...the 30 yr with only fibro for 5 yrs can learn about others with only fibro in her age group & learn how they progressed. The 54 yr old with complex diagnoses for 10yrs can learn how others with complex diagnosis progressed. It could be an excellent way to analyze the original question.

  • Hello Mikipaulo,

    I agree, and had already thought about the parameters needed which are basically the same as you've suggested. The only thing is I am limited to only 8 options, so have done the best I could to give as many options as possible. It really would need a survey to get a more accurate picture but let's also see roughly what the poll says, as this is the only option open to us here in the HU FibroAction community.

    Thank You so much for your comment, very well thought out

    Emma :)

    FibroAction Administrator

  • Excellent survey!! The results will be interesting to see. Congrats

  • My personal experience: I am 54 yrs old. Having been diagnosed with fibromyalgia as part of my complex diagnoses 13 years ago...my fibro is much more manageable now! I would encourage anyone/everyone to educate yourself on what ALL you can do for yourself to improve your prognosis, now & over time.

    Additionally, I completely see the original point of this discussion. Is it appropriate to list discouraging responses here in the forum knowing that many people could be negatively impacted? That is a difficult situation to determine. Here is why: If I am not mistaken, this forum is for the open expression of our feelings about the lives we lead as pain sufferers. This honest release of our emotion is very good for us. Yet, can our open discussions be detrimental to those already struggling with negative emotions about their own lives. The answer is Yes, it can be very discouraging. So what to do? I believe it would benefit any reader to read lots of different discussions here...to get a balanced wider view of how we all live. I also believe that it would benefit both readers & writers to try to express encouragements to one another in every response, even if that encouragement is simply that we are not alone.

  • Hello Mikipaulo,

    Again, Thank You for this contribution as it is best in my opinion to be the informed patient while living with Fibro. Interesting that you are in your 50's with complex picture of Fibro & other conditions and feel it is more manageable now. For members who want more information please read the 'All about Fibro' range from the FibroAction website;

    fibroaction.org/Pages/About...

    You also express a sensible & fair view that this community forum that all members discuss how we all feel and that anyone visiting should read many posts to get an overall balanced view of how Fibro affects people. We encourage all living with Fibro to join our community whether living with severe symptoms or mild symptoms as all can give valuable comments about their experiences in the hope it will help others.

    I would like to mention that FibroAction would always promote being the expert patient and doing what you can to get the best Healthcare for you. To read our Expert Patient see link;

    fibroaction.org/Pages/learn...

    Some people find Fibro can be controlled by using a combined approach of recommended medication, CBT, Complementary Therapies, relaxation, stretching & gentle exercise etc.

    We, FibroAction hopes that our community provides information & support that benefits all at some point as they discuss the problems they are experiencing. All members give much support to one another and it is great to see ! :)

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Thank you Emma. I had not been on a support line in years. My insomnia has been horrible & am very happy to have found so much support being offered by everyone hear. I am impressed with the active participation of FibroAction administrators like yourself. It is wonderful how you provide clarification, info links, & things like your survey. That went up quickly

  • Hello EquineArcher77 & everyone who has commented on this post,

    As discussed, the poll is ready (for September, a couple of days early) and I'll be interested to see the results. Here's the link;

    healthunlocked.com/fibroact...

    Emma :)

    FibroAction Administrator

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