Does anyone here know anyone who has ... - Fibromyalgia Acti...
Does anyone here know anyone who has recovered from Fibro?
Hello there Gdxahd, thank you for your message.
There is no known cure for Fibromyalgia so we don't want to raise any of our members' hopes, however it is possible to go into a period of "remission" where we can remain symptom free for a period. This period can be a short time or a longer time.
There is no known recovery itself from Fibroymalgia, but the symptoms whether pain or fatigue or both can be well managed with correct medication etc. Also pain clinics referrals, hydrotherapy, physiotherapy, massage and other alternative therapies can all help to relieve our symptoms and help us manage the condition better.
Thanks for the reply which I found most helpful, although I wish that no people recovering wasn't the case! What sort of remission time periods are there?
It varies enormously. Each case with Fibro is different and remission periods are not guaranteed.
Are we talking in weeks, months or years?
There is no set period for remission. no guarantee for even having a remission period.
I was almost symptom free for 7 years after diagnosis.... Except for the odd week of pure exhaustion from working and the frequent bouts of chostochondritis and the painful trigger points which I downed painkillers and carried on....lol I am saying symptom free then list all those things,
by symptom free I guess I mean I could hold down a job. That was from age 25to 32 After that time I crashed and burnt out big time.... I am now wondering if I had slowed down a little and not just taken pain killers and carried on would I be as Ill now... If I had paced more instead of ignoring the pain and masking it with meds.. I will never know... And I don't really want to cos if I made my self worse that's just another thing to beat myself up about as well as feeling bad enough about being in constant pain everyday. I cant look after my elderly mum. I feel my husband and son have lost out. Now everyday is a struggle.
But apart from family and really good friends who actually cares and believes us... Not the benefit system , not atos, not the government, and I do have a idea why.... Years ago many people defrauded the system to claim benefits as a bad back was one of the hardest things to diagnose correctly unless something major was wrong.... Now fybromyalgia is accepted as an illness but there are no definitive tests, it's a process of elimination ... Anyone can look up where the trigger points are and say ouch when that area is pressed.. So I think (totally my own idea) that some of the people who don't want to work are now claiming fibro is their problem and all us genuine sufferers are paying big time.. There are over 5,000 members on here and very few get the benefits they deserve without a fight.
Rant over
VGx
Hi VG, this is a terrible illness, I thank you for sharing that with me.
Could I ask that you go to the other question I asked "Is this your story" and also look out for a Poll I have submitted regarding how it all started. I have a theory about the root cause and so far the results are all in line with it. Regards Steven
I can't agree more with you on the part where you say "Anyone can look up where the trigger points are and say ouch when that area is pressed.. So I think (totally my own idea) that some of the people who don't want to work are now claiming fibro is their problem and all us genuine sufferers are paying big time." I have a friend who's daughter kept putting in her symptoms to the medical websites to see what they diagnosed and when fibro came up she kept asking all about my pain, symptoms etc, she went to her GP told him her thoughts and he confirmed fibro she then filled out forms for DLA and was awarded at 1st attempt aaarrrggghhh How I could have screamed I had had 2 attempts at DLA both refused both went to appeal again both refused, I also had 2 independant doctors give their findings to the DWP, both doctors had conflicting findings e.g. 1 doc says I have severe difficulty in walking and have pain throughout my body which makes me slow to walk as every step is difficult and I have to stop frequently to ease the pain and use my inhalers as I also have asthma and c o p d, 2nd doctor said I could walk at a healty pace although using my stick I would be able to walk 700 ~ 800 meters, wow big difference my own doc was livid as he informed me 700 ~ 800 meters is the length of 7 to 8 full sized football pitches (trust a man to put it in footie terms)at appeal I was looked upon as if I was lying and making it up, no wonder with these conflicting diagnoses the 2nd doc said I didn't have fibro either, own doc livid again as he has gone against him and he's been treating me for 14 years so he knows me best 2nd doc only in house 10 mins for medical examination, makes me mad to know the leech got hers with no problem and I'm now on my 3rd attempt at getting DLA, just got letter on Monday saying it's been refused again,so off to appeal I go and I'm not looking forward to it at all. Although you say fibro has been recognised ad an illness many doctors and lay persons at appeal don't believe it actually exists, so if I could give them my pain for just 1 day they'd give me DLA and a bloody apology for doubting me. I think I had a bitof remission a number of years ago or else it was just the medicine working until my system got used to it. Sorry it's so long but I just had to vent my anger somewhere. Rant over but I'm sure there will be more 
keep smiling and people think you're ok no pain sit with a frown and sadness and you're toldoh it can't be that bad, if I had a pound for every time I've heard that ~ I could have a good holiday in the sun to help vith the vitimin d for osteoporosis, oh I better stop all of m y complaints and medical problems or you'll not want to speak to me again :(.
Take Care Verygrumpy and hope you get pain free days ahead of you.
Softest and gentlest hugs to all
I'm one of the very fortunate (and rare) people with Fibro who have effectively gone into remission. I do not get regular symptoms now and am on no regular medications for Fibro. I do still get occasional flares, almost always down to aggravating my neck, but these are now manageable. I've been off regular medications for 3 years now. I will never NOT have Fibro though.
I do still get myofascial pain problems connected with my hypermobility and past injuries, but I now know that this is not Fibro and also how to manage it so that it is not problematical.
I often get asked "what did I do?" and the simple answer would have to be "lots of things".
Accurate and comprehensive diagnosis is crucial to gain control of Fibro symptoms. Because the symptoms of Fibro can be so wide-ranging, mis-diagnoses and missed diagnoses are all too common, whether it's a masked vitamin D deficiency, a missed inflammatory or spinal problem or no actual diagnosis of hypermobility or myofascial pain that is an important factor for you. Even if "all" you have is Fibro and connected issues, such as IBS and myofascial pain, if you can't identify what is causing each symptom, you cannot target treatment.
Because I did not fully understand this back when I was fighting Fibro, I basically dealt with one problem then another (IBS, postural imbalances probably triggering PC3, depression, then myofascial pain) till all that was left was the central Fibro (still disabling!) for which I saw a consultant and got medications for. I continued to use everything I had found helpful, e.g. physio, and diet to manage my IBS. I strongly feel that if I hadn't done everything else first, the medications would not have been so effective. This has actually been backed up by the work Dr Holman 's team have been doing with patients with Fibro and diagnosed PC3 (Positional Cervical Cord Compression) - the patients with PC3 who do the Physical Therapy program then respond far better to medications. I was lucky to find a physio who did a very similar PT program for me to correct postural imbalances, knowing nothing about PC3 and Fibro.
The goal with Fibro treatment should always be to minimise symptoms and get as good a quality of life as possible.
People who have uncontrolled conditions as well as the Fibro will always struggle the most in getting control of their symptoms. E.g. if you have Rheumatoid Arthritis as well as Fibro, a RA flare will likely trigger off more Fibro symptoms. Many doctors also believe this is true of stressful life situations, e.g. a very stressful job or an abusive relationship - you need to get the big stress out of your life or your stress response will always be kicking off.
Many people struggle to access effective treatments too, whether this is useful physiotherapy or certain medications. If you educate yourself, much can be done yourself or you can get more out of the healthcare team you see (e.g. if you can tell your physio what to concentrate on, it won't matter if they don't have a clue where to start!).
Some people don't like having to do this, but unfortunately changing the mind-set, education and ongoing training of all healthcare professionals in the UK will take a long time.
HTH!
Hello
I in fact have been my old self this week just a twinge in my groin
So off I go to work ,nurse, lots of energy even worked through my
Lunch breakt
Did so much kept saying to my. Self pace your self your going to be
Sorry, but my inner voice no it's fine you are back to what you used to
Be lots and lots of energy I had a good week with sleeping first time
In years.
Yesterday boy was I sorry back to fibro feels like flu off sick, really thought
It was going, funny thing this fibro just when you think you are better its
Laughing at you so be very careful if you feel well it's just a trick
Love Viv
O M G............... never new u could go into remission.. i have suffered this every day for about 6 yrs that i have been diagnosed but think it has been around 10... since around 6 yrs ago.. i have suffered everyday.. started with a stomache bug ( i am sure made it worse )... anyway.. i have not had one day that i can say.. oh i feel like me again... i am either.. in pain all over or totally fatigued.. i am still not used to it.. i still have not come to terms with it.. as i feel if i did not believe there is a cure i could easily fall into a deeper depression than i have got... if i was to think this was me for life.. i think i would just give up now.. i do have days i think, i have had enough i dont want this anymore, then i look at my kids and think... how i would be destroying there lives for ever, so i just take each day as it comes.. flare ups are more frequent now a days, so finding life at the moment very hard...... so i am very pleased but also a bit jealous of people who are in remission, please dont take this in a bad way, its just so hard to live with this... hope ur all well and i really do mean that.. hugs xxxx
Remission is sadly rare, but that does not mean that Fibro is untreatable and unmanageable for everyone else. Some experts (Americans!) believe that Fibro is eminently treatable. Unfortunately, getting the accurate & comprehensive diagnosis and then effective treatment options is rarely easy, particularly on the NHS.
Many people with Fibro have out of control symptoms. For them, getting control of their symptoms could well mean a significant improvement in Quality of Life
We all understand how you feel Diane, we all feel the same! At times there seems no end in sight, but our symptoms can change. They can improve, they can worsen and vice versa. There aren't any guarantees that any of us will go into remission although clearly some people are lucky and do. Similarly there aren't any guarantees how long this remission period will last, whether someone will remain symptom free or whether the symptoms will return. It's still very hit and miss and uncharted territory.
Of course we all hope for remission, I certainly do! The best I hope for is well managed symptoms, to be able to pace myself (I learnt this through a CFS Clinic, I have CFS/ME too), to get enough rest, for my meds to work well for me. I am achieving this and my general well being and quality of life is much better than it was three years ago.
If remission happens, I will be ready and willing to take it on! 
If it doesn't, then at least I am managing my Fibro as best I can which at the end of the day is all any of us can really do.
I was originally diagnosed in 2002 with ME/CFS, but never really felt that it was quite right. This diagnosis however, had taken more than 12 months, and involved several different consultants, so I 'had' to accept it! By late 2003 I had managed to get back to full time work after 14 months off sick, and then a phased return. By 2005 I thought it was all behind me, a receding memory. I was doing a full-time demanding job, had a full family and social life, active hobbies etc. Then in 2006 the symptoms started again! This time round I had heard of fibromyalgia, as my neighbour also has it. So I went to my gp with the open question - is it ME, or fibro? Long story short, I was diagnosed with fibro at the end of 2006. I firmly beleive it's what I had before, and that rather than full recovery, I was actually in remission.
I have had my ups and downs since then, and am glad to say that at the moment I am definitely managing the illness better. I am working much more than in the last couple of years, and managing to have some fun too. Yes, I still have the illness. I have to choose my activities more carefully than before. I have had to accept that some things are probably beyond me now, and look for other things to do that are less demanding. There are times when I am in a lot of pain, and i can't always point to a reason. So, this period is a bit like remission, but not quite as good as before. Is there such a thing as partial remission? I don't know. I would love another period of a couple of symptom-free years, but think it's quite unlikely.
From everything I've read on this site and elsewhere it seems that there is nothing predictable about this illness. What works for one person, makes someone else worse! Some people have much more severe symptoms than others. Sadly, many people here also have other illnesses, so remission from one will not necessarily improve their lives a great deal. I hope you manage to find a way to reduce your symptoms, and even experience a period of remission.
Kaz
xx
hi , i am one of the lucky people whose fibro seems to be under control allowing me too do almost anything i want, however when i have flareups they can last up to 6 months. i do not think it burns out but is just lying in wait to catch us out if we think its gone xx
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Who manages your Fibro?
Does anyone else have I.B.S. with Fibro?
