I've had this for about 2/half years and was diagnosed last month. (also moderate ME/CFS). I have been told that Fibromyalgia is not progressive. I don't believe this is correct and symptoms can worsen. Could I please have your thoughts and experiences on this, as it is a really concern to me. Thank you.
Does Fibromyalgia get worse as time g... - Fibromyalgia Acti...
Does Fibromyalgia get worse as time goes on?
45 Replies
•
all I can say is mine has progressed pretty quickly but we re all different
• in reply to
Thank you.,
mine is I am afraid. every year another piece of me seems to join in the gradual deteriation but staying positive MOST days helps, distaction technics, support group, knowing when to give in and rest!!
• in reply toteresajane
Thank you.
I can understand and relate as I am finding it hard some days to be cheery or happy when all I want to do is stay home and not be touched. But I believe we all do what we have to survive, some days are better than others and some not so much. I just keep thinking stay positive and strong I find reading helps a lot keeps my mind focused . Take care
I too was told with the right diet and exercise and some meds my fibro would stay under control, but mine has deteriorated quicker than i ever thought and more and more symptoms.
Learning to pace yourself is a definate must. Im still learning and trying not to feel guilty if i have to have a bed day (like today).
Hoping you never get as bad as me and others on here.
gentle hugs xx
• in reply to
Thank you.
Gentle hugs Reflections,
I've had Fibro for 30+ years - only diagnosed around 7 years ago - all was non-progressive until I got hit off my bicycle by a car over 15 years ago - and it's just gotten worse and worse - If it were non-progressive then I don't think we'd all notice much difference in flare ups! I used to have a very high pain thresh-hold, Now I try to go without pain meds until it's unbearable - which these days is sooner rather than later 
xx
• in reply to
Thank you -
suejayjay• in reply to
I also had a very high pain threshold. 6 babies and no pain relief.(not a martyr just didn't need any).But have recently been on a Pain management course. They gave the explanation of FM as if the pain trigger gets stuck on high. But I still don't feel any more pain if I knock myself or cut myself, as I did years ago. I end up with loads of bruises that I have no recolection of having done anything to myself.SO, what is FM?? I am still none the wiser. Regards Sue.
RunSkipDance• in reply to
My experience is very similar. After having FMS for about 25 yrs I was in a car accident about 3 yrs ago and fractured my leg. I have daily pain and pain in my legs that I have to used pain med for. I'm in my early 60's and feel like 80 yrs old. Pain and fatigue really limit my life now.
Unfortunatley i think the medical proffession would disagree but its strange how we have all got progressively worse!!
Hugs,
Sue x x x x
• in reply tosoulsusie
I think they should do some research. Thank you.
I dont have any flare ups as such just seem never to recover, my mobility is now very poor, my arms and hands are week, whereas I could work all day and run about like an idiot now I sit here most days doing very little
• in reply to
I'm concerned about my arms and hands that have gone weak. My hips are bad. I'm very worried. Thank you.
fairycazzie• in reply to
i started with things 2 yrs ago after an operation and i can say that it is the mobility side and weakness for me now and flare ups! it really really starting to get me down and frustrate me as the work i do is very physical and i had to give up the physical side 2yr ago i manage the business now. Same as everyone else, arms, neck hands, hip leg (maninly left but the right side is getting like the left) i have had a good day todayish! but i sat down after a long day and stood up after 5 mins and it hit me. Hubby says he is really noticing physical changes in me and he has taken on most the chores and my 11yr old daughter is fab in the kitchen (natural like her daddy) and my 21yr old daughter has taken over my work and helps in the house.. i cry often (no control) because i know that this thing will never ever go away if after 2yrs i have become less mobile in everything, whats the next 40 going to be like..if i last that long being 43 lol....sorry none of us know where this is going, only others who have it and the experience can advise and help..that is why this site i love it!!! xxxxxxx all the best and i do wish you do have some goodness and i do wish for a miracle to change over night. Alll them invites i get and i refuese everyone of them now sad! xxx
LindseyMid• in reply to
Have you been assessed for either myofascial pain or hypermobility? Both are common alongside Fibro.
three years ago I would have said that mine had progressed considerably, however, over the past year or so, since starting to attend a pain clinic, I have been learning to pace myself properly, not just by doing a bit and stopping, but by using timings and recording things and I am feeling much better now than I have for a long time.
I am on my meds still, and apparently the long-term aim is to get me off meds completely(and I hope to god it happens!). At the moment, if I don't take my tablets regularly, I do suffer, especially at night with restless legs and back pain, but during the day I feel a hundred times better most days I feel I have control of my illness rather than it controlling me.
Take care of you, Jane x
• in reply toJane64
I'm going to have to learn to pace. It's a find line isn't it when not to overdo. I think my flares are more from activity rather than inactivity.
I'm glad you are feeling more in control now. Thank you.
fairycazzie• in reply to
i have to agree with above as my doctor kepts saying to me do little and pace and do some more...so more or less sit and then go do someting then rest and do some more.. I find that hard tho doing what am doing.. my doctors are good though and known me a lot of years and even tho they say nothing really they know how i changed.. I used to work in pharmacy for 8yrs so i know some of the staff and i am treat pretty well and laugh..they have me in stitches some times (we need it) !!!
I have gotten worse over the years and finding life a struggle so the doctors dont know everything
• in reply tohelensib
It beggars belief where the medical profession speaks on no worsening. Thank you.
Hello everyone it is now 3.30 in the morning so I think I would make
a very good vampire as like most people with fibro I dont sleep
When I first went to the doctors two years ago because I had
what I thought was hip problems, except for the few pains that
you would expect with age 59 mine has got worse with not other
conditions. I get pain every where now mostly I can control it
with medication but that does not take all the pain away just
enough to manage it, good days and not so good.
I believe that I have it mild after reading people on here, it does
control your life, and you have to learn to except your condition
but its hard if you work and people dont understand.
Viv
hi i have had fibro for approx 2 years but diagnoesed officially last july i have def got worse since last july so i think it can be in some people but i think it varies from perso to perso this is just my opiio somewhere o here if you go ib the tags or archives you may find a more in depth answer love to you diddle xx
Hi, mine had got worse over the Years and was on morphine for 7 of them. I don't know if your dr is any good but mine put me on Gabapentin around 18mths ago when I went cold turkey off the morphine.
It takes 6 weeks to start to work but since I went on 300 mg 3 times a day my fibro asnt affected me as much as it had done.
Not sure if it worth looking into as it may help you as it as me.
Take care x
If it were medically progressive, that would mean it would get worse no matter what you did. And with effective treatment, Fibro can be managed and symptoms can be stabilised or even improved. Therefore it is not medically progressive.
However, most people with Fibro do tend to get worse with time, because of poor diagnosis or treatment, an inability to take advantage of treatments or because of another condition that is also out of control.
I have found my Fibro has got a lot worse over time. I was diagnosed 12 years ago but I had it a long time before that. I started with it in my knees and slowly it has taken over my whole body, I do not have anywhere that does not hurt. Also my exhaustion has worsened, my short term memory disappearded, my spasming and shaking is worse and I hardly leave the house anymore unless my hubbie takes me in the car or my mum goes with me. I do not go anywhere on my own because my legs are really unstable now. Apart from that I am just fine and dandy!!! Saying all that , my sister works with a lady who has stayed the same so not everyone worsens at the same rate. I suppose it depends on the person and the severity of the fibro. So don't feel too bad as you may be one of the luckier ones (I hope).
hi everyone i was diagnosed 2yrs ago with fibro i also have polymyalgia i sleep 2hrs a nite minimum 4hrs max. even though i was diagnosed 2yrs ago we found id had them for bout 12 yrs after a motorbike accident. over that 12 yrs i hav gon from being able to do my normal day to day routine to having to use a walking stick to feeling in such excrutiateing pain that all you want to do is cry. i dont know if this is progressive medically but i know how i feel it has to me progressed the meds we take help but dont cure it. iv paced my self iv done everything ive been asked n im still getting worse. they say its not genetic or anything and it depends on what doctor or specialist you see as to whether we hav an illness or it in your head. sorry it definitly ot in my head we need to know more about these diseases they shud reearch them
• in reply totracey46
I agree there should definately be more research.
I sorry you are in so much pain and I hope you sleep better this evening.
Thank you everyone for your responses.
im afraid i cant add much more than as already been said accept mines got worse over the 3 years iv had it but listening to those the have had it a long time they seem not as bad maybe you get use to it and being new to this we notice the changes as its all new to us
Without a doubt it definitelyy gets worse. Mine started 1989 and has got progressively worse. Am now housebound and practicallyy unable to walk.Painkillers do nothing for me. But there again the ageing process isn't helping. I may just be unfortunate and eventually something will be found which will help you. We are all different so look on the bright side you may just escape the severity of it. A lot of people on here are still able to get out and good luck to them as I used to at one time but as it;s progressed things have become increasingly difficult. Here's hoping you're one of the lucky ones. Take care.
With me it is a fluctuating condition with frequent flare-ups.
Fibro pain made me less mobile. Being less mobile made me put on weight. Putting on weight put so much strain on my joints that I completely wore out both knees (osteoarthritis).
So I am in a much bigger pickle than I was in when I was diagnosed with fibro in 2006. Even the DWP accepted that. And osteoarthritis IS a degenerative condition.
I have other conditions running alongside FMS and together they serve to make life very uncomfortable indeed at times.
So far the doctors have been unable to find a medication that both relieves the symptoms and doesn't cause severe side effects that can be worse than the original problem.
I have severe gastric reflux problems and IBS and my stomach rebels causing severe cramps and nausea . I can't take opiates , duloxetine gave me horrendous side effects . I can't take aspirin based meds either . Because of my bowel I can't take codeine any more ( which used to work quite well ) .
I survive on ( prescribed ) over the counter type medicines like paracetemol and Ibuprofen , pacing myself and gentle exercise.
My FMS symptoms get worse if I'm stressed , under pressure, not eating properly , tired, if the weather is too hot / cold/damp so it's a juggling act all the time.
I'm not sure if it's gotten progressively worse or if it's my tolerance to it . Certainly since going through the menopause I seem to feel pain more keenly than I used to .
HI jules i have been to my GP who lucky for me is very good and understanding of fibro so i can tell her all my symptons which seem to be getting a longer list by thw week , i take medication and she really has given me everything she can as obviosly being on so manty tablets she has to be careful that some dont react against each other but she has jus told me to do wht i can when i can but my fibro and the symptons connected to fibro have def got worse the only thing i have picked up extra in this few months is carpal tunnel for which i have tablets and also ibs for which i have 3x meds
but the initial symptons that i saw my gp about last year and she told me i had ibro that was then confirmed by a rheumatollogist have def gotten worse and i tell my gp this and she agrees with me
i have more pain more often more jelly legs more often and oh too many to list you will all be nodding off lol if you havent already
i hope that you are ok love diddle x
my heart goes out to u all am new on here and its lovely to read each and everyone of ur message on , i so felt alone on this its nice to join with other poeple that are going thought what i am , its been so lonely talking to the walls thinking am going bad with the pain and its all in my head , even put myself in a nut house for a wk as i try to kill myself over it , yes i wake up thinking what have i done to myself not just to me to my children , they went though it all with me and it made me feel like abad mum i love my kids so much , but there still here for me , but i dont talk to them anymore about how i feel as i put them though anoth , so am on my own crying to my self most day as its to much and i hate going out but i try , like u all i try and live but the pain takes life over and ur dieing inside out ,and i have gone from being a 12/14 to 16/18 i hate my body so much , but thank you one and all i feel not so alone ellen x
I definitely feel that it gets worse as the time goes on. The flare ups get longer and the time in between isn't pain or symptom free any longer, which it was relatively so last year. I've not had a painfree day since at least the beginning of this year and I'm taking extra co-codamol during the day now which I didn't have to do before, just at night to help me get through until morning with at least SOME sleep.
I'm at an occupational health appointment Wednesday, so I'm hoping that they can give me some help with regards to my work conditions, and also some more information to my employers, although I put together information from online sources to give to my boss as all he kept asking was 'So what stresses you out then?', when I mentioned that stress is ONE of the triggers to a flare up. For a start, him constantly asking me theat is stressing me out! Since then I've discovered that the constant weather changes appear to affect me as well, so does lack of sleep (on sleeping tablets as well now which help a bit), over or under activity, driving, you name it, it probably affects me now. I've been on antidepressants for around 9 weeks and that has at least helped with stress levels and I'm able to just about cope with most days now.
Ellenmarie, I read your post (from yesterday or the day before I think). I was in a very dark place a few months ago. I wasn't sleeping at all, I simply couldn't cope with anything day to day. Work was unbearable and everything was getting on top of me. I ended up going to see my GP who put me on antidepressants, then another one gave me sleeping tablets, after about a month I started to feel the effects of this and now I am at last able to cope with the demands of everyday life. Well most of the time anyway. It's definitely worth giving it a go. You've got nothing to lose anyway.
HUGS!
hi there, my opinion is to answer your question i think some of it is mind over matter.
I had this years before I was correctly diagnosed, but i don't know if it is finally being told i do have fibro and now just accepting it has made me worse or it would of got worse anyway. but the last year i am in agony with it, and whats worse is there seems to be no medicine strong enough to remove the pain! not even slightly for me....and it is so worrying the amount of medication we take all at once....im starting to understand how michael jackson felt and died....
I have had small incidents with fibro for years. It came on full force 2 years ago. It has gotten progressively worse. Instead of weeks or months between flare ups, it seems that I am constantly in a state of 8 and above pain levels.
mine has definitely got progressively worse and at quite a rapid rate x
Yes i do agree with you. My symptoms worsens everytime i get a flare up. I have been seeing someone every 2 weeks to see which meds will work the best. Unfortuanately most of the meds is for my depression and not for the pain i go through with the fibro. I see this sickness as a live sentence, but i try to stay strong and i believe that one day there will be a cure for this.
Hi all, I have not been on the fibro site before, i found out about fibro when i went on other site to talk about my "RESTLESS LEGG SYNDROME" which is now under control with ropinirole thank god, after years off suffering with depression,anxiety,headaches ,body aches,bladder ,tinitus,memory fog, and more i saw someone mention fibro and when i looked it up all the symtoms i have had for years were there, i mentioned to my doctor about it and although she didnt actually say this was what i have ,they have started to treat me for it !! She has put me on amitriptyline working my way up at the moment i am on 50 mg a night and i take cocodamol when the pain is unbearable, fingers crossed,i wake up every morning aching i come down my stairs like an old lady ,my doc actually said ,there is no test for fybro to tell you that you have it and we cant open u up and see if u have it !!!! Finding this sight very helpful and learning more about it 
Looloo
I am so thankful I have found this page! I am only 24 years old and was diagnosed with Fibro about a year in a half ago. Just within the last 6 months I feel like its getting worse and worse to the point I am getting very scared. Thinking the same thoughts as you! I really dont know if Ill make it to 30 even! Thats literally how my body feels...its getting to the point simple things are so hard to do..and I am a very active mommy to 3 children...Its so frustrating that the Drs dont know what to do for us yet...just pain meds which is killing our kidneys and who knows what else! 😔
Hi everyone I'm new to this and just been diagnosed with fybro not copeing well atall and my g.p doesn't seem to care how I'm feeling I'm OK one day next crappy and I'm definitely getting worse what happens next carry on suffering 😢😣 sorry for the rant but feels good to read others on here xx
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