Has anyone out there heard of a... - Fibromyalgia Acti...
Has anyone out there heard of anyone getting better from fibromyalgia and not haveing it any more ?????
I haven't.heard of anyone getting better.my symptoms got worse over the last two years and now I suspect I have lupus.
i have just been diagniosed with lupus also but i have had problems since i was sixteen and i have just just 50 my condition has got worse
I have had fibro amongst other things for over 50 yrs now and it has never left me, I got on with life I never let it get to me and I was lucky I h ad a high pain threshold and was able to block the pain out whilst doing certain job but the minute I finished, it was there with avengance, you get good days and bad days I relate to my good days as the days I can cope with it, I'm still in a huge amount of pain on good days but can cope then I get what I call a sorry for me day, I am now 72 and finding it hard to have any good days either that or my pain threshold has dropped, this fibro is a bummer it's with u 24 /7 and there is no cure and no amount of pills take the pain away completely and because there is nothing to show for it people are under the impression that u r swinging the leg so to speak or not as bad as u are portraying, sorry to go on like that I'm in a sorry for me day lol, and have had more than enough now, please forgive me for moaning fibro friends as I know u are all suffering too . Wish u all a reasonably pain free day, and thanx for listening, luv n gentle hugs to u all ...Dee xxx
I had a remission for 7 years ... It was very early on after my diagnosis and I thought they had my diagnosis wrong... But the symptoms started coming back after the birth of my son and it hasn't gone away after 16 years . So remissions and managing are possible but cure ... No 
I don't know for sure but one of the people on my fibromyalgia management course said not to go chasing rainbows . She said it can be managed, have periods of remission but as yet they can't prevent or cure it.
Hugs
Yeah. I hear of people who claim to have recovered....but also hear they've had set backs.....
I think acceptance of this illness is so important. Its when I start thinking I'm okay now that things start to go wrong. I either accept or I'm constantly dealing with disappointment.
Sadly, the only long term cases I've heard are people with questionable motives eg. selling their 'magic cure'.
BUT, who knows what's just around the corner? x
Yep - Fibro seems to come and go, so we just have to enjoy the good days and weather the bad ones. I've never found a cure, but there are a lot of things that help.
One that baffles me is that I get days, even weeks of relief after air travel. I guess it might be something to do with air pressure, but it always happens.
Maybe I should get a job as a glam stewardess on Virgin Atlantic - my word that would take a lot of make-up! 
I'm actually terrified of flying and endure rather than enjoy, so it's not relaxation that makes me feel better!
Moffy x
Unfortunately there is no known cure for this condition. i say 'condition' as they will not recognize it as an illness, which we know it is !!!! anyway, that's my gripe done lol
Being in a warmer climate (sunshine for vitamin d) and try to enjoy life (keep positive) is all you can do to help get through bar taking the drugs provided by you GP
I found that my fibro was connected to my underactive thyroid and having to little of the active hormone, T3, in my cells. I found thyroxine (T4) made my fibro worse and I was completely disabled. When starting supraphysiological doses of T3 only therapy, my fibro disappeared completely and it was wonderful. That said, the current thyroid guidelines will not allow doctors to treat with such high doses of T3 as one's TSH becomes undetectable so I have had an uphill battle to get my medication on the NHS.
I have been put on natural desiccated thyroid (NDT) which has helped for a brief period but, because it contains T4 and I cannot convert it into T3, my fibro returned with a vengeance.
I am now back self medicating and have been writing to newspapers etc about this travesty to no avail. I will continue and not let up as I cannot continue to fund such high doses of T3, and without this hormone I will die. So many of us are suffering the same fate and it's terrible how the medical profession can totally ignore the patient's symptoms because they do not tally with their lab results.
I am not a lab result, I am a human being and am unique, and my health issues are also unique, as we all are!!
The wonderful late Dr Lowe helped me in finding a solution (not a cure) to my fibro. He has proven that impaired metabolism is the reason for fibro. He calls it Hypometabolism. The man is a genius!
T3-Induced Recovery from Fibromyalgia by a Hypothyroid Patient Resistant to T4 and Desiccated Thyroid* thyroidscience.com/cases/lo...
Inadequate Thyroid Hormone Regulation as the Main Mechanism of Fibromyalgia: A Review of the Evidence thyroidscience.com/reviews/...
"Big Pharma Hits Pay Dirt: Fibromyalgia Patients Targeted as a Hugely-Profitable Drug Market. If you're a fibromyalgia patient, you're now targeted as a rich source of revenue from drug sales. Bookmark this page to soon read linked documents. These show the concerted efforts Big Pharma and its affiliates are devoting to you as a mother-lode of financial profit."
web.archive.org/web/2010081...
I hope this helps someone here, as it has me!
Silky x
Hypometabolism!! That's exactly it in a nut-shell!!!!!! Sad to hear he's gone
Frangi x
It was a tragedy and so unexpected. He fell and hit his head and then died from the injury. It was a total shock and he is a tremendous loss to science and fibro/thyroid people globally. He was a pioneer in this field of fibromyalgia and thyroid disease and his work lives on. There are still many studies on his website which are still going through probate so will not be available for some time.
Silky x
I must add that I was not diagnosed with an underactive thyroid (hypothyroidism) for most of my life because my thyroid lab results have ALWAYS been 'normal'.
I am now diagnosed but only because I was lucky enough to find an endocrinologist on the NHS who did not only go by lab results, but symptoms. I also brought along plenty of 'Before and After' photographs showing my changed features and weight gain. I had seen 7 GPs who all said that my labs were 'normal' when I knew that serum lab results only measure the amount of thyroid hormone in the blood and NOT in the CELLS. There is test which does measure how much thyroid hormone is being absorbed by the cells but it is not recognised by the NHS.
So bear no weight to thyroid function tests as they are useless, and so are doctors who use them and diagnose patients by them. Doctors are not educated to diagnose by symptoms these days. I found that I had to not only take my health into my own hands but also fight for a diagnosis. Many go private to doctors like Dr Skinner and Dr Myhill but I don't have the funds to go private.
Silky x
Interesting.... I've been tested over the years for under-active thyroid (because of general symptoms) but they always came back as normal or lower-end-of-normal. My feeling has always been that it may be normal, or low end of, for the majority... but it may be low/borderline for ME! Enough to cause symptoms anyway.
Frangi-pan, I was diagnosed with ME/CFS, Sjogren's Syndrome, Lupus despite not having antibodies (?), a personality disorder and countless others but because my thyroid labs were in range or 'normal', this was constantly dismissed when it was glaringly obvious from my symptoms that I was hypothyroid.
I was put on a high dose of Diazepam (Valium) and several other antidepressants many years ago just to shut me up. This did for a while but the more dependent I became on this benzodiazepine, the less effect it had and I could not get off it. I now discover it is harder to stop than heroin. It will take me several year to wean myself off it and for it to get out my system.
But that's not the worse... Diazepam is known to suppress serum thyroid function tests and so my lab results would NEVER have gone out of range anyway. Not even my endocrinologist knew this but thankfully he did diagnose me by symptoms so I am forever grateful to him. I have now sent him the relevant study for his info.
So if anyone is on benzodiazepines or any antidepressants, you can be assured that any thyroid function tests done will be even more useless.
Silky x
I wouldn't say my Fibro was going for good but certainatly better and I have posted my efforts on here,my doctor has lowered my meds and my enery levels are up more than in the past an not kidding myself over a cure ,but certainatly taking my life back,,don't like those that post miracle cures as it annoys me that they pick on people whose frustrations of fibro and are so low they take advantage.I've changed my diet and excersize,( even throught the pain),given up smoking and am aspartame free,I am not blaming all these things but was at the point of trying anything and found it works for me as much as it can and my positive mind helps to,still have boom an bust days but they're getting less.
I am of the mindset that I'll try whatever it might take to help,and have been at the lowest point where I never moved,,for me now it's more the forgetfulness and brain fog,mind block on the phone or talking that gets me .
One step at a time and the suypport from this online group has been great
Well, my fibro seems to come and go, its certainly not anywhere near as bad as it was in the first few months and sometimes I have no real symptoms for months, although I always have myofascial pain and interstitial cystitis and when they have a flare then my fibro symptoms seem to come back but never as bad as in the beginning - I have a friend who had fibromyalgia for a year after she had chemotherapy and she recovered completely (from cancer and fibro). I read somewhere that most people who are going to recover from fibromyalgia do so in the first three years. But Prof. Andrew Holman from Seattle tests fibromites for positional cervical cord compression, 71% of fibromites have it, he treats that, and a lot of people either get better or improve significantly after treatment. I don't think fibro is a psychological condition but I think recovery is linked somehow with attitudes to the disease, you have to fully accept it and somehow work with it rather than fighting it, I do meditation, alexander technique, holistic massage, and trigger point massage on myself every day and somehow this gives me the chance to snatch my body back from the ravages of fibro and its nasty friends. There are others who use other methods and write about it - such as Jacob Teitelbaum, his book is From Fatigued to Fantastic. xx
This recent thread discusses the same topic:
fibroaction.healthunlocked....
There is no cure for Fibro, but the best case scenario is that it goes into long-term remission (usually thanks to good treatment). This is hardest if you don't have an accurate and comprehensive diagnosis (so treatments are not targeted) and/or if you have another condition that is not or cannot be well managed, so keeps aggravating the Fibro.
i know someone that has managed to deal with her symptoms and go back to work, and she was the person that interviewed me for back to work thingy. this lady helped me so much, i landed up not having to go to anymore thanks to her
wouldn't it be a wonderful thing if we could find a cure. I'm on maximum medication from the NHS and struggling with everyday life at the moment (the Dr wont give me anything else or change my medication, as found that changing never worked) My Dr is looking at alternative therapy to improve my situation. I have got the stage where i don't want to give up yet, I'm going to see and try what she offers me and ill let you guys know if it improves fb, maybe, and i live in hope, a cure.
I plan on it. I'm on my way. I know people who've had it and it just randomly came and randomly disappeared.
Fibro is essentially a list of symptoms, and the causes can vary a lot. I found the multiple things causing my issues, but it's taking and will take years to get better. I'm not sure if I'll have a 100% recovery, but I'll get close.
Has anyone tried acupuncture for Fibromyalgia? 
Has anyone taken Lyrica for Fibromyalgia?
Has anyone heard of \"Substance P\" and \"Tropisetron\"?
Fibro does it get any better
