In your opinion, has your Fibro got w... - Fibromyalgia Acti...

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In your opinion, has your Fibro got worse as you've got older ? (Fibro is reported not to be progressive illness)

Mdaisy profile imageMdaisy423 Voters
182
Yes, I've had Fibro & other conditions 5 years +
139
Yes, I've had Fibro for 5 years +
88
Newly Diagnosed <under 4 years
59
My Fibro seems to stay at the same level with major flares
28
My Fibro goes from severe to mild symptoms
17
Other (please comment)
11
No, I've had Fibro & other conditions 5 years +
6
No, I've had Fibro for 5 years+
76 Replies
jillylin profile image
jillylin

I have had fibre for longer than before it was diagnosed and I am convinced that it has actually got worse in many respects.

Hugs

Jillyxx

mgclassic profile image
mgclassic in reply tojillylin

Like Jilly I'd suffered with FB long before I was actually diagnoised, and its plagued my life ever since 10yrs now yet it is not considered an ongoing illness. Just a invisable one that for some reason Doctors and people think you are putting it on. They should try living with this chronic illness. It''s definitely not a bed of roses being in constant pain, not being able to do the simplest task, and even bed ridden at times when within a flair. Then you are having to rely on family when within your mind, you constantly wish you could just wake and jump out of bed without pain never mind all the other things you want to do. I personally feel like I'm a burdon on my family, which then causes depression its one vicious circle. Sorry for ranting I'm a sufferer this subject is close to my heart. xx

Ktatmolehole profile image
Ktatmolehole

Definetly got worse, perhaps though as I've got to the point where as I've got older I find I am less able mentally and physically to deal with it in a positive way.

hamble99b profile image
hamble99b in reply toKtatmolehole

that's a good point.

Lizzielizzie0 profile image
Lizzielizzie0

Although I've only been diagnosed for about eight years, I know for a fact that I've had symptoms since my teenage years. I'm 51 yrs old now. I reckon on being diagnosed with 2 or 3 associated conditions every year at the moment - tinnitus, hypothyroidism, TMJ etc. Overall there has been a deterioration in my condition, speeding up in times of greater stress. Unfortunately, the last 4 or 5 years has been extremely stressful. There certainly has been no period longer than a week during which I've consistently improved.

I first experienced depressive illness at around the age of 10 yrs and have continued to do so throughout my life. Although I consider the two conditions to be separate, they do of course interact and sometimes create a monster of the both.

Wendyld profile image
Wendyld

My fibro is now at it's worse, I was wrongly diagnosed with RA for 5 years, then I was told I had fibro. That was 14 years ago. In the last year it has got really bad. I also have worn discs so that increases my pain. Due to see the specialist in just over a week.

Sarah-Jane profile image
Sarah-Jane in reply toWendyld

Good luck Wendy

kazmike profile image
kazmike

I was diagnosed about 16 years ago . I have more symptoms now and they flare up more.

Shirldeanne profile image
Shirldeanne

I was diagnosed in 1985 and know full well I had all the symptoms of fibro for quite some years before that. I am 64 now and all seems to have become a lot worse and continue to worsen in the past 10 years or so

Punchy profile image
Punchy

Its got worse, but to be fair the longer you have it, the more you become accustomed to it. Its the depression caused by constant pain that gets me. I wont take pharmaceuticals anymore, after a helish episode of 5yrs on Duloxetine!!!

Devonie profile image
Devonie

diagnosed 3yrs ago and has definitely got worse. last flare up really bad and prescribed fluoxetine to help cope. now on daily meds. Naproxen 2x250, fluoxetine 25g am, Amitrytaline 25g pm. Can increase Naproxen when necessary and would say 4 out of 7 days have to increase to 750

Argylldavie profile image
Argylldavie

Newly diagnosed a few years ago, but when I displayed a different type of pain and swelling hands & Knee,s Shoulders bits they tried to say it my Fibro getting worse, but it turns out I also have Psoriatic arthritis, it has taken over a year for it to be ID and then to see Tom Dick &Harry in how to cope with this extra pain which is in the big joints

Rods

Davies

sophie22 profile image
sophie22

I have had Fibro for 16+ years and it is getting worst, at first I managed to work with it now I can barely function for an hour.

Wheezey profile image
Wheezey

Mine started when I was a young teen, I'm now 41 and the last 6 years have been hell... Mine has got much worse :(

agtf1 profile image
agtf1

Diagnosed 2 years, first symptoms about 5 yrs ago. For me has deteriorated, but waiting to see if levels out.

9661 profile image
9661

I need some help in finding someone to help me my doctors just keep changing my medication but don't feel like they are listening very well. It's getting more painfully and stressful each day. I was diagnosed 17 years ago and its getting worse.

rubycat profile image
rubycat

I have definitely got worse over the last 15 to 20 years. I was diagnosed 14 years ago but have been suffering much longer than that. My pain has got much more severe and my stamina is almost non existent. I sometimes think I am starting with alzheimers as my cognitive function has got so bad.

Warm hugs

Cathy x

staceymarie76 profile image
staceymarie76

I have most definitely got a LOT worse with this condition & some consultants refuse to believe this, but I have had to finish work & can't go out without walking aids or if going out & about I have to now take a wheelchair

I was diagnosed 13 years ago, It was horrendous the first 4 years until the pain meds were sorted out, Now I had to change all the pain meds which have sent me into a spiral of extreme illness once again, I cannot kneel and get up, have extreme difficulty every day. As afore mentioned, my mental state if becoming more and more fuzzy and I have developed a stammer...

It definitely gotten worse.If this country was spending money for hydrotherapy,hyphnotherapy,massage and so much more like France,we would certainly get better! But no,instead you get group talks at the hospital on "how to deal with pain"...

66Amanda66 profile image
66Amanda66

its definately getting worse as i get older

Definitely worse plus HMS so getting worse by the day

Angiedeaks profile image
Angiedeaks

Had fibro 10 years since I was 22, definitely better than I was in the first 5 years. Cope with pain and fatigue a lot better, I can now exercise and think I've found the right meds combination xx flare ups are not as intense and I can recover quicker as my muscles are stronger x

Pjrs profile image
Pjrs

Diagnosed 7 yrs ago had symptoms most of my life now I know what IT is!

Now 57 age does. It help flares up more frequently and they are more debilitating . Less able to cope with the glare ups have to give in .

rowantree profile image
rowantree

Fibro is the same but EDS has got much worse.

NanaDeb profile image
NanaDeb

My fibro is only worse now because of all the stress I am under with the other health problems causing pain in my neck & lower back. Even epidural's aren't helping with that pain so it keeps my fibro flared, but I now deal with fibro-fog & it's very frustrating.

mikipaulo profile image
mikipaulo in reply toNanaDeb

I empathize with you totally NanaDeb. It is like a double whammy...if the back & neck are under control fibro is okay. But when they go out the fibro flares to put you down. The fibro fog is the worst!

mikipaulo profile image
mikipaulo

My fibro is and always has been very episodic. Always there but running from very severe to mild. The most severe is brought on by high stress or times after exhausting myself repeatedly. The more severe the longer it hangs on too. Again, it is never gone but severe symptoms last 6 wks or more at a time. Diagnosed in 2001, in a major flare up that lasted 2+ years.

Matrix profile image
Matrix

I have had fibro for over fifty years along with all things fibro related and stomach issues and it is getting worse , pain is unbearable sometimes

estrellaliliana profile image
estrellaliliana in reply toMatrix

matrix so sorry, sorry for all of us but you had it for 50 yrs, so sorry, take care

Matrix profile image
Matrix in reply toestrellaliliana

Oh sweetie I probably had from about 8 years they started taking me to doctors about aged 10 years old .For anyone I had three children maintained a marriage had a hobby etc etc try to be positive live each day the best you can and if you need pain relief take it ,don't struggle like I did trying to do without .Blessings upon you all xx

solowheelie profile image
solowheelie

Every time i have a flare up I do not return to the level i was at before, therefore there is a regular permanent worsening of my condition

agtf1 profile image
agtf1 in reply tosolowheelie

I'm the same! I know that doesn't help you, but in a way it's nice to know your not the only one. It feels like it deteriorates in steps at each flare.

lou60 profile image
lou60 in reply tosolowheelie

Could not have put it better. x

karmadogma profile image
karmadogma

It's been 20 years my fibro is much worse than it was when I was 25 or even 35

alybabe12 profile image
alybabe12

I have had Fibro for about 3 years now, but in the past 6-9 months it has definitely worsened. I have been working full time for about 18 months, six months prior to that I worked only 13 hours a week and for a year before that I was off work sick for a year due to a car accident (which actually caused my Fibro). Since working full time, I have noticed that my Fibro has got worse and in the past 6 to 9 months it has become very bad. I am now in the processing of applying for PIP as I struggle to walk and look after myself properly. In summary, despite having Fibro for only just 3 years - YES, it has become worse :(

hamble99b profile image
hamble99b

I don't think it neccessarily gets worse for everyone.

I have had it at least 26 years and episodes as a child.

I think I've learned techniques to help and triggers to avoid.

shopaholic profile image
shopaholic

I think everything iv got is getting worse....but is it because im getting older??? I honestly dont know

ladyt62 profile image
ladyt62

Ive had it about 10yrs didn't no what fms was until i got diagnose about 5 yrs ago i also have under active thyroids,polycystic kidneys and liver,arthritis,

lilian68 profile image
lilian68

i have had fibro for 6 yrs maybe more the brain fog comes and goes i have the other symptoms all of the time ,my other conditions are getting worse.

serski profile image
serski

I've suffered for around 2-3yrs. . Diagnosed 5wks ago. . Before diagnosis I was in really bad pain trouble getting out of bed. . Just life in general was bad. . Becoming a bit of a recluse. . Since finding out what was wrong with me I've taken small steps to improve my health and fitness, changing some things in my diet. .. At the moment it seems to be working for me. . I'm more mobile, out every day and exercising. .I was told that exercise is key in helping keep pain more bearable to cope with

charlie01 profile image
charlie01

I've had fibro since childhood, I'm now 52 and have had a flare up 1 year ago, still suffering with fibro fog, pain to all the joints, upper back and chest pain! My fibro has definitely gotten worse. I'm hoping it will eventually settle.

Rosetta2014 profile image
Rosetta2014

It definitely gets worse I've had it for 18yrs.

Doolallytapping profile image
Doolallytapping

When I first started with it I was in my early 30's. I brought up 3 children & had a full time job & managed my symptoms. Then as I approached 50, my symptoms got worse, I had to give up working. I haven't worked for 8 years & I'm one of those forgotten people, not on any system, no benefits, pension goalpost moved 6 years further from my reach. Who the hell would employ a 50/60 year old woman with fm & copd?

Jeff1958 profile image
Jeff1958

still diagnosing my problems

nicnoc profile image
nicnoc

Had fibro for 12 years. Just turned 39 and this is the worst ive been. Bad enough to land me in A&E. The pain I have at the moment I would sooner go through childbirth with no pain relief!!

LaurieLee profile image
LaurieLee

I was diagnosed with FM in 1992. I think I had it at least 10 years before if not from childhood. The pain in the last 5 years has become unbearable in comparison to when it was first diagnosed.

pip_r profile image
pip_r

I put other as I think my fibro symptoms differ depending on how well I'm managing it at that moment in time and how much stress I have in my life. I would not say age is a factor at the moment in terms of improvement or deterioration.

For example, last year after getting to grips with the condition mentally (eg. acceptance and coping strategies, etc) and pacing myself properly I got to a point where I had less pain, less fatigue and was coping with my "new normal". I was pretty positive and beginning to focus on things I might be able to do, eg. photography.

However, sadly from October my dog got ill and needed a lot of care (he passed away in May). These seven months of needing to care for him medically (insulin injections, etc), physically carry him up stairs and having him sleep with me and have even more disturbed nights (as he needed me to take him out) caused my fibro to flare very badly. I didn't even start recovery before then spending 4 weeks down south during the summer to visit family and friends (non-stop activity and family stress - at the minute, never again!). The fatigue and pain has meant I've also been very down (though not depressed) - the worst since diagnosis.

It's literally been this last week that I've had the chance to slow down and to 'do absolutely nothing'. However, I'm confident that if I rest and do nothing (that's really, really do nothing) and stay away from stress as much as possible, there is no reason that I can't get back to how I was last year. The odd few days I've rested I've seen an improvement in mood. I just then go and do something and I'm back to square one. I believe it is pretty much up to me to pace myself and get myself back to where I was. I have the knowledge of how to do this - time with my doctor and a cognitive behavioural psychologist has given me useful tools I can use and an understanding of why I need to rest, etc.

I don't say this is true for everyone as many of us have other conditions to contend with, but this is what I think in terms of my own condition.

Pip xx

burri8 profile image
burri8

Only people that have it can answer that question. I have had fibro under 4 years but I haven't seen any improvements. It feels like it has spread to other locations on my body. I dread the winter coming since it is worst during the winter months. Especially since I have osteoarthritis as well. I also have a tear in my right shoulder rotator cuff and I can't have surgery on it. The Ortho Doctor states it's too late for me to have it since what He does could come undone. So, I have to deal with the sharp pains and stiffness in my shoulder as well. I have arthritis and fibro in most of my joints in the feet, rump, hands, arms, back, spine and neck. So, it's enough to make You want to be left alone when the pain comes.

Janeyn profile image
Janeyn

I was diagnosed in 1994 by a Dr when on holiday and mostly stable with flare ups until the last few yrs where it has gradually got worse when I saw my occupational health Dr he commented that it will slowly get worse and am now going through applying for ill health retirement. My stress load has also gone up because I'm carer for my father who has dementia which I think also has bearing on why it has flared up

Mack59 profile image
Mack59

Has anyone heard of LDN, ( low dose naltrexone ) you can look it up online. I was fortunate that a friend found it through a wonderful retired G.P. called Bob Lawrence at Dietery research, Swansea. I have been on and off LDN for a few years and it definitely worked for me. Its complicated to explain LDN and the NHS/G.P's. Plenty info online, most research done in USA....

Mack59 profile image
Mack59

I have not been on LDN most of this year and the constant pain is driving me mad again. Unfortunately LDN is not free and I am still waiting to see if my Doc's will prescribe. Not all Doc's know about LDN and not all Doc's will diagnose Fibro, apparently LDN can be prescribed but costs are an issue. For those that LDN works for savings would be made in painkillers and other treatments that would become unnecessary. Sorry I've taken so long to post this but I also have a Brain injury and I've just worked out how to use this computer tablet and navigate site :-)

Sammicat15 profile image
Sammicat15

Have had fibro (and RA) since 1997. That it has worsened is witnessed by the exponential increase in my painkiller cocktail over the years!

FoggyMoggy profile image
FoggyMoggy

My fatigue is the main symptom that's got worse. I think Fibro could be like MS, where there's a relapse-remit kind, a primary progressive kind and a secondary progressive kind.

Sarah-Jane profile image
Sarah-Jane

I voted that my FM goes from Severe to mild, but I am not sure whether that is right as it varies, getting worse steadily with symptoms increasing but varying in their effect depending on a lot of factors. No it is not getting better and staying that way, no it is not getting worse and staying that way. I have had this for 3 years and the variety of symptoms are increasing and many were present before I knew they were linked!

crystalamber profile image
crystalamber

I had M. E. first (25+ yrs), then Fibromyalgia (15+yrs) Since then other things have got progressevley worse. The meds help with some pains fantastically but nothing helps the exhaustion. I feel my life is over.... I have been out once this year and I had a week in bed before and after to get out, for 1 evening. All I did was sit and drink water.....but I was out..... I can't work which stresses me as m8ney 8s n9ne 3xistant and causes extra stress for my husband, who works full time runs the house and shopping etc. He can't get a break either as we have no money to do anything. We struggle and sometimes I think he would have a much better life if I was no longer here. Yes Fibro gets worse and so does the quality of life for sufferers and partners/spouces. I get up at 11.a.m. and am back in bed at 8p.m. at the latest on a great day. But I do NOTHING in between. I can't read now because it is hard to consentrate and hold the book. My memory is awfull I can watch a movie then forget what happened straight away. Love, gentle hugs and a cure to all fellow warriers.

Nikki43 profile image
Nikki43

I suddenly got it and it was the same ever since. Not counting Flares that you can 'control' but just the basics.. --8 years plus for me

RavenHarstad profile image
RavenHarstad

I have had fms for over 5 years and in my opinion it has stayed the same. I have always taken tramadol for it and as long as I don't run out, I am not all that uncomfortable. On occassion I will feel more severe pain, mostly at night, but most of the time the tramadol works and I've actually lessened my dosage since the first diagnosis.

digger1 profile image
digger1

I have had fibro for about 11 years that I know off. It is getting consider y

digger1 profile image
digger1

Sorry half a message brain fog again!! Getting worse as time goes on more pain fatigue muscle pain can be unbearable most times

Royalspec01 profile image
Royalspec01

I have a lower lumber condition and with all the chronic pains and difficulties this has created I no longer have good days just in a semi flare or worse depending on how well I manage my pain. What I would say it has seemed to have worsened my fibro certainly complicates my other condition.

Endurer profile image
Endurer

I have had FM for over 20 years, in the last 10 years it has got progressively worse ear after year, I find it very difficult as I grow older - over 55 - it is very difficult to function both physically and mentally. In my case PM has been progressive, esp affecting the function of my inner organs - I have had FM related angina, digestive disorder, very painful trigger points, costochondritis that drags for months on ..... etc

i had fibro in a mild form for at least 25- 30 yrs. apart from what doctors now accept was a major flair

Gegegolfinho profile image
Gegegolfinho

Acredito que vem se agravando com a idade.

Mentesanas profile image
Mentesanas

I've had FM symptoms ever since I can remember. I wonder if as we get older we feel worse because we don't have the stamina of youth and we all know that getting older does bring certain limitations as it is.

And what about menopause? Surely this shall affect us even more with the added discomforts we get from this time in our lives...

I have had very bad flare ups in my 30's for example and got easier to manage in my 40's until my fifties as menopause kicked in recently and it most definitely has worsened at all levels.

The chronic fatigue is more intense, the pain seems to vary in areas and intensity but the brain fog has become a little worrying at times.

All in all I would say it has worsened.

nikkijane17 profile image
nikkijane17

After a diagnosis last year my pain specialist thinks I have probably had it for 10 years. He came to this conclusion after asking questions about my life, work, stresses and the emotional side of life. My symptoms have got a lot worse over the last 9 months. Even more so over the last five months. Now on sticks and in a wheelchair.

littlesister1974 profile image
littlesister1974

I have had fibro and m.e other conditions plus now a severe problem with my back it never seems to get better gets me so down just wish they could come up with a cure.

yanto71 profile image
yanto71

My fibro is getting worse, my body and I know. My RA is in remission apparently, so the experts want to start reducing my tablets lol. Obviously I told them what they could go and do with themselves, I don't have any time for doctors and specialists. So these experts who've got their degrees in medicine etc know the facts and are sticking to them. Wonder if they ever asked any sufferers, EVERYBODY IS DIFFERENT, don't you learn that in medical school!

Lizzyear profile image
Lizzyear

I've had fibro for approx 3 years and it has DEFINITELY got worse and bad flares on top of this.

Believed I "only" had Lupus for the last 3 years, now at the ripe old age of 69 they tell me I have Fibro as well. Have been putting a lot of the pain down to age! xx

LaurieLee profile image
LaurieLee

Without a doubt it has definitely got worse since 1991. Now, I can hardly walk, stand for long. pain, fatigue and fibro fog is so, so much worse. I can barely use my left arm. need help with personal care. Carer helps with it all. Given up cooking and find my carer has to check everything I do. I forget to turn off taps, cooker, can't do my finances. often forget how to use my phone, Internet and have to have help or someone to check what I have done. Sometimes, feel likemI am going mad coz brain works when it feels it.

Molly_1919 profile image
Molly_1919

Diagnosed 20+yrs ago. Fatigue suddenly became 10times worse a year ago and not improving.

Lindamt profile image
Lindamt

I seem to be in a major flare most of the time nowadays. I have to crawl upstairs where there is no stairlift, walk with a walker or use a wheelchair. I started with stomach problems, then severe back pain was added, painful ankles & wrists, now painful from the top of my going bald head to my block of pain feet.

Bacaloca profile image
Bacaloca

I believe my fibro has got worse, certainly the pain needs more medication to ease it. My memory is becoming worse and my walking is getting harder. I have progressed from 1 stick to 2 crutches over 4 years.

Scottish-piglet profile image
Scottish-piglet

I've only had Fibro diagnosed for 2 years but it has definitely got worse and is still deteriorating.

My partner has had Fibro for more than 9 years and his is getting much worse to the point he can hardly walk.

Non progressive is nonsense, the medical profession don't know enough about Fibro to tell us anything about it, there is no cure so how can they say it doesn't get worse! We live with it and we are the ones who know how it affects us. We also know that we don't all have the same symptoms but a mixture of a wide variety maybe it should be called Fibromyalgia 57 - there are at least that many variations xx

Janet28 profile image
Janet28

Had Fibro for so many years now but I also have arthritis which is degenerative and very painful, this I would say, makes the Fibro worse.

So difficult to say but my health, pain, etc. Is definitely worse.

Is it just old age makes it worse ? I think everything gets worse with age.

Peace, luv n light

Jan x

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