has anyone been able to permanently manage their illness without relapses?

I was much recovered for quite some time and thought that I was now on the road to a normal fulfilling live, living by the rules of pacing etc. and getting along quite nicely, thank you very much!

However, about eighteen months ago, I started to feel that a lot of my symptoms (which were still there, but in the background and manageable.) were starting to impose on my day to day activities. I wasn't do anything different but everyday something else was worse than it had been the day before.

Since that time I have been up and down like a yo-yo and have been discharged by my pain clinic as I have been too ill to attend since before christmas.

I just wondered if anyone has managed to get their illness under permanent control or if this how it's always going to be.

Thanks xxx

20 Replies

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  • Hi Jane,

    i think it's the same for all of us. Some lucky souls, myself included, have occasional long periods of remission. The majority seem to vary a lot from week to week, whilst the unlucky few feel terrible most of the time.

    Taking great care of yourself in general, good diet. plenty of rest, attention to emotional health etc. seems to give the best chance of overall success in managing fibro. It's also very important to have good pain relief - that's probably the one single thing which is most reflected in quality of life.

    I hope that your present 'sticky patch' is short-lived, and that you soon go back to full function.

    Moffy x

  • Hi ladymoth, Thank you for responding to my question. I was fine for about 4 years but the past 2 years I have gone downhill a majority of he time. I do have good weeks still, but they seem to be few and far between at the moment.

    I just wanted to know if anyone had had a full remission and stayed there, since that's what the doctors all say I should be able to do!

    Perhaps one day the medical professionals will all know what the facts of Fibro are and will all be able to agree on a proper maintenance strategy!

    I have seen at least three doctors at my surgery in the past year and they all give me different advice!

    Oh well, onward and upwards as they say :)

    Keep well xxx

  • I'm a rare lucky one who has Fibro in remission. My Fibro has been in remission without any regular medications for 3 1/2 years now and in that time I have had 2 flares, each lasting less than 2 weeks.

    I still have some issues with myofascial pain, because of hypermobility and neck damage (we're pretty sure I have PC3 stemming from a whiplash injury), but if I keep this under control and am careful about my neck, I don't get Fibro flares.

    I'm a good example of the importance of addressing each issue specifically and working out exactly what is going on for you. I used to think that myofascial pain WAS my Fibro for instance and if I hadn't got treatment for the MPS, I wouldn't have responded so well to the physio I then got which helped my neck. And if I hadn't done the physio to stop my neck constantly flaring up the Fibro, I would probably not have responded so well to the medications I was then prescribed. So often I think people have issues with Fibro not responding to treatment because they have other issues that are not being (or cannot be) managed and the other problems are either the actual cause of problematic symptoms, or are constantly flaring up the Fibro.

  • Hi Lindsey,

    Glad to see you ok. If you suspect PC3, how come you haven't proven it with Dr H's protocols on MRI and got it subsequently treated, either conservatively or surgically?

    It's my project manager control freak... I'd have to follow until I ran out of road ;-)

    Best wishes

    Gary x

  • Surgery is actually often not an option for PC3. I had physio similar to what the PTs working with Dr Holman use and it helped. As my symptoms are now under control, I don't feel the need to confirm the PC3 with flex MRI, especially given this is only really available privately

  • Hi lindsey, Well done you! It's great to hear that you have got your fibro under control...it means there is hope for us all! I must admit that my fibro has got worse since I was taken off of my anti-inflammatories as they damaged my stomach. Now that my joints have become painful again my fibro has flared up.

    My blood tests showed low inflammation but I had been on the anti-inaflammatories for about 2 years then so I would imagine that they influenced the results.

    I have been prescribed Maloxicam but they haven't done any good.

    What I do resent is the fact that if I go to see the doctor for any specific reason, e.g. joint pain and swelling, permanent headache, ect. they just tell me it's down to the fibro so just get on with it!

    I just wish i could find a doctor who knows the facts of fibro!!

    Keep well xx

  • Hi Jane

    Are you seeing a consultant? If not, it may be worth getting a referral to a local rheumy. Inflammation is not a part of Fibro, so unless you've already been diagnosed with an inflammatory condition, like arthritis, you need to see a rheumy to work out what is going on.

  • I have had fibro for 23 years but 7 of them were in remission just taking the odd painkiller ... i even thought i might have been wrongly diagnosed ...unfortunately after having my son at 32 it flared back up and I have had symptoms ever since ... But Definately keeping as active as I could helped... During the 7 years.... Now in my 40s I have arthritis as well so I am a wreck

    :) ...

  • No wonder you're Very-Grumpy!!! What a shame, you poor thing. After 7 years it must have been awful to be ill again.

    I think I have something like arthritis as my joints have become very painful and swollen since being taken off my anti-inflammatory tablets. Since fibro isn't an inflammatory illness, it makes me wonder why I was given them in the first place...my pain was obviously an inflammation and not just ifbro.

    I just wish the doctors would learn about fibro so they can diagnose people properly!

    I wish you well for the future,

    Take care of you xxxxx

  • I'm so sorry for your situation as so am i, but that's a hard one. I am in same place trying to figure out my next step. I'm female and hitting that age.so for the last 4 months pain is unbearable, so what can i do to avoid relapse. ????

  • Hi bipa, I know, I wish we could just wave a magic wand and all would be well! I haven't been doing anything differently but I started to find that what I was doing was starting to become more difficult to do! I stead of my walk taking twenty minutes it was taking half an hour, instead of housework taking an hour or so it was starting to take all day with many rest breaks in between.

    Now I'm only able to walk for a few minutes at a time, I can do the washing up as long as there isn't too much but I have to be careful not to drop plates and glasses and things.

    I'm so frustrated, but that just makes things worse still...instead of my soaring rise, I'm now on a downward spiral and I want to get off!

    Oh well, I guess we just have to get on with it until someone finds a cure!!

    Take care of you xxxxx

  • I think I'm quite fortunate in many ways. I've learned to accept the flares and tell myself....this too will pass..... I can usually pin point the reason for a flare. Either a new virus, the change of season, eating trigger foods, or allowing myself to become overwhelmed by the demands of others.

    I don't expect to ever be free of it so I'm not disappointed. It is what it is....there's no cure x

    I wish I could work....but that fits into the demands of others section. A sure way to relapse.

  • Hi stepper,

    I'm so pleased for you, you seem to be able to get through life fairly well. I was doing pretty much what you are doing, but apparently for no particular reason that I can fathom, I have just hit some wall and started to go backwards.

    I hope you continue to cope and I wish you well for the future.

    Keep well xxxxxx

  • I have had it for nearly 50years without any let up of symptoms and each year something else goes wrong .I have accepted it and if you can Thats the best thing to do because its not going away and its best if you can just say it is what it is and its part of me .I pace myself have days when I can't do anything other than rest because of chronic fatigue syndrome so then I catch up on films etc .I don't work I never was well enough to manage it and I know now I couldn't it can take all day to get going .What I do when I'm in a flare is up the meds every four hours it works takes a few days .Sorry you are hurting at the mo .Oh one thing I forgot to say was try a hobby it can take your mind of the pain I make cards and I scrapbook ,knit learning crochet anything crafty I will try .xx

  • Hi matrix,

    It sounds as though you haven't had much joy with your fibro. I have accepted that I'm ill and not going to rid of it, but I know I can be better, because I was.

    I'm on my meds four times a day again where I was taking only a few when needed.

    I just feel a bit demoralized at the moment, I think.

    I do have hobbies, I write and I'm an artist. I have just done three commissions for pet portraits recently but they took me twice as long as usual because I had to keep stopping to rest. As for the writing, I have one book published but this is about the most I've written since november last year!

    I am getting back into it, mainly because people keep asking when the next one will be out....so I'd better get on and write it!

    I hope you keep your fibro under control and keep making the cards...I love handmade cards!!

    Keep well and take care of you xxxxx

  • Thnak you to all of you who answered this post. I just wanted to know really, whether what the doctors all say about beating Fibro and living a normal life for the rest of your life is possible. So far, it seems that people can get it under control, but there is no guarantee that they will stay that way.

    I don't think that enough research has gone into this condition for anyone to say that it can be kept at bay permanently.

    Perhaps as Fibromyalgia becomes better known to the general populace, more people will want to know more about it and more research will be undertaken.

    Until that time, I don't think any sufferer can hope to get any true information from their GP, unless that GP has become specialised in the illness.

    To be honest, from personal experience, I think I know more about it than nay of the doctors at my surgery, thanks to the internet!!

    I hope everyone keeps well, and take care of you xxxxxxxxxxxxx

  • Jane 64 I totally agree with you in the main GPS can't really be bothered I offered mine a book to read and he said he did not time to read it what I think if they really cared about us they would find time to read up .I wish they could all have just one year of the pain and all the other things that go with it ,then maybe they would understand .How anyone can say you can cure it is beyond me as every thing I read says there is no cure .We all know and are experts on fibro and cfs and all the other things we suffer with .Take care sweetie hope your pain lessens tomorrow xx

  • Sorry Jane 64 no it has not been easy I have had it since I was 12brought oby living in a abusive home they think .Im glad you write how wonderful what a gift ,I write poetry for myself and love anything crafty .It is hard this illness people think you look ok so you must be ok,but anyone can look healthy with a bit of blusher ,only my husband and my very best friends see me at my worst when I can be found kneeling on cushions rocking because pain is so bad .Dont be demoralised you are doing your best and this too will pass .Take care my friend and know that tomorrow is indeed another day with lots of possibilities .xxx

  • Yeah.............I wish!

    Seriously though, just have to take each day as it comes, listen to your body. Don't do too much on the good days, & less on the bad!

    Simples!!!

    Good luck, gentle hugs

  • Thank you peeps, for your support. I think that helps as much as anything, knowing that other people know exactly what you're going through and that you aren't alone...especially at 3 in the morning when you just don't know what to do with yourself to get away from the pain!! Although it's awful to think that so many people have to feel like this.

    I empathize with anyone who has a painful illness and offer my support to all.

    My sister is a huge fund raising fan and I'm trying to get her to set up something to raise money and awareness of fibro, ME and CFS, so I'll keep you all posted.

    Keep smiling (or is that grin and bear it?!!) take care of you xxxxxx

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