How often have you found fake news or... - Fibromyalgia Acti...
How often have you found fake news or inaccurate information about Fibromyalgia online ?
Mdaisy216 Voters
I have not noticed but maybe Idont look !
I was diagnosed 18 years ago...every since no Doctor has had information to help me cope with pain...they just listen with no response just giving me medication,that I stopped going to my Gp.
I get so desperate at times that I will try anything that someone has recommended,knowing to darn well that it might have helped only one person,but I think oh maybe this might be the answer to my woes, but off course this is just another waste of money and in turn making me more desperate!!! So the moral of the story,what’s good for the goose IS NOT good for the gander!!! Maybe one day we will all get the relief that we deserve guys,but until them I’m pretty sure that the next person that says that they have found a magic bullet for themselves, like a shot I’ll be first in the queue hoping this time.....
It’s such a shame their is so many cashing in on vulnerable people essentially selling snake oil!! We do have to be careful as reviews can be fake now too!
Even official Health Forums or online sites can have poor or out of date information which then gets repeated back to you by people you know , asking , why don't you take this , or do this?
In some ways inaccurate reporting on recognised platforms is the most dangerous 'Fake News' of All!
Great Question
Yes maybe you’re right as not everything can be always picked up or monitored by volunteers for FMAUK (the majority live with Fibro & other health issues)
We do try our very best to correct information that needs to be corrected - but it’s not always possible.
Do use the report button even if it’s just to alert an admin of dodgy links or info that needs input as this helps us 
Glad you liked the poll and the community seems to come across lots of articles that are fake online it would seem!!
Ooh , I wasn't thinking about the great work of charities , more often than not , it's the charities and Support forums for illnesses , like FMAuk, that do all the hard work to build real awareness and break the myths that people hear elsewhere .
I was referring to recognised Health sites often run by a Country's Official Health Services , these are regularly out of date and do not acknowledge many of the side effects and related syndromes and conditions connected to illnesses like Fibro .
These are often the first sites sufferers , their carers and the friends and family head to when someone is initially diagnosed . Then the sufferer can end up with more questions than answers , or they get bombarded by myths by other people , including their GPs because the rely on what the Health Services will acknowledge.
If it wasn't for groups like yours , and charities for other Diseases , many of us would still be suffering and in the dark.
Thanks for your work
That’s great to hear! Yes some health sites can be out of date - so we must look for the information Standard logo as they regulate the registered sites then you know you can trusted the info!
I often look for new research/articles and such on the internet. Some, not all, can be misleading and untrue. xx
I always look for Natural options now as my body can’t take anymore prescribed medication.
It’s just the cost that holds me back at times but l feel better in my head if nothing else!!
Yes lots of nice products that are natural whichever may help general wellness reducing synptoms at little as help reduce the stress to the body but they cost as you say!
I have been taking Santogen and Laurcidin (£30 a tub) for a while and sure the latter helps my gut health.
If only the NHS had a budget for alternative and complimentary therapies - rather than other things- could help in the long run to save costs for those who are chronically sick. What do we know though, hey?! LOL 😂
I have 'friends' that regularly send me documents on how there is a cure for Fibromyalgia and stuff about diet coke. I don't even drink diet coke and when I get the documents I politely say, "Thank you". But it is very annoying when I get them.
Diet coke! Good heavens, if only it were that simple!!
Isn’t aspartam bad for your brain?
I avoid Aspartame, unsure what it does but one to be avoided I feel!
Me too!
Yes the ‘Fibromyalgia finally solved’ article has been flying about for many years with no back up studies!!
Don't really know!
I have for a long time, like 'Greetings'. just been offered pain killers that really don't work for the draining pain and stiffness, lack of energy and exhaustion. Three years ago I was diagnosed with Polymyalgia and put on a very low dose of steroids for a short time. They worked for a week or so but then faded, so a different doctor told me I didn't have polymyalgia but fybromyalgia and therefore steroids would not work. So I simply stopped going to the medical profession for help and struggled through each day - some good some not so good. But with the painkillers no longer working at all and getting more and more dispondent and unable to even sometimes make it through the day without falling asleep my husband urged me to go back to the doctor - and I am so glad that I did. My blood tests had come back 'within the norm' for polymyalgia but the doctor said ... "well let's just try steroids again and if they don't work then you definitely have fybromyalgia".
I have been on steroids 20mg a day for a couple of weeks now and THEY WORK!! I am almost pain free and have so much more energy. I know that they have a a lot of side effects and you have to be careful on them, but I am sharing this so that maybe others will be able to ask their doctors for a 'trial' to see if they get relief with them. If they do work it is almost straight away. I think that you can have both polymyalgia and fybromyalgia together and so perhaps that makes the blood test not always acurate.
I read everyone's comments and this is such an encouraging site with everyone 'being there' for each other, and it is interesting to see the comments on what works and what doesn't work for people. Thank you too that this is a trustworthy and informative place to go.
Great to hear you’ve got treatment for Polymyalgia now - there are other members with this too. We also have a post about Polymyalgia too! Wishing you well x
Thank you I will have a look at the Polymyalgia site - hope it's as friendly as this one. I think I may still have Fybromyalgia too so will still be following this one!
I don’t really look for information on fibromyalgia, I get any information I need via the health service, it’s not terribly helpful! (Nor does it reflect my experience, I remain unconvinced by my diagnosis)
You can ask for for a 2nd opinion if you are not sure 🤔 Have you visited FMAUK website yet? If not this might be helpful fmauk.org
I have lived with this progressive condition for about 40 years (or more, it’s a bit hard to know when it really began). At one point it was put down to musculoskeletal issues but as I was getting increasing loss of sensation in bits of my legs and pins and needles elsewhere I was referred to a neurologist. For years I saw him. He told me there was definitely something going on, but he couldn’t be sure what. It may, or may not, be related to the family history of neurological problems, which had mostly been diagnosed as multiple sclerosis, even when there was no conclusive evidence to that end - we know that happened to my mother. In the end I stopped seeing him as there was nothing he could actually do to provide any treatment.
Years later I was having increasing pain and more pins and needles, I saw a Prof. of pain management who put me on gabapentin on the basis that there was evidence it helped with neurological pain relief (it certainly helped).
Subsequently we moved to a new area, my level of impairment was increasing, they decided I had ME, so sent me to see an ME specialist, who decided I didn’t because I was not, and never have been, ill. My symptoms did not fit. Instead they decided I needed to see another pain specialist, even though I wasn’t complaining of increasing pain. Pain Registrar saw me for all of 10 minutes, took a very brief and partial history, and announced I had fibromyalgia. I had to “use it or lose it” and must be seen by the pain management service who would teach me how to manage my condition (which I had successfully managed for over 20 years, brought up 2 children, worked some of the time, grown our own vegetables etc). I felt compelled to jump through this further hoop as the GPs had been threatening to reduce and change my medication. I was obliged to attend a pain management course (I had previously through my work facilitated the setting up and running of a pain group for people in the city I worked in). I knew all the exercises, even knew the order they would suggest them in, I’d done this stuff about 20 years earlier.
I have been on the FMUK website, it has nothing to offer me. Whilst there are a few bits in common, I have also met and socialised with people with a fibromyalgia diagnosis, we have virtually nothing in common. I really cannot be bothered to see anyone else. I am 64, I manage my impairment totally successfully, it doesn’t matter what it’s called, it’s how I live with it that matters. If it keeps the Drs happy to call it fibromyalgia, then that’s fine, it really doesn’t matter to me. I hang about in this group just in case one day I can finally truly connect with someone.
These days it's hard to know what is truth. It's almost impossible to get a doctor to believe you so human nature tells you to find similar people. Some of the things that have been said to me is quite immeasurable. My own family still can't understand the way it works, and I guess that's because they read stuff on the internet which makes me look like a fraud.
Much of the false news comes by dismissing some of new health issues as just Fibro from some doctors. The most hurtful false ideas by have been from this site in another area that I belong to. Sad that even chronically ill people ( with something else) do not ‘believe’ our disease exists .. I am living proof & so are the rest of us.
Sometimes their are people on closed FB Fibromyalgia Support groups Who say they have fibromyalgia to draw people in then just want to sell stuff herbal life diet other supplements making claims it improved their fibromyalgia I never believe anything on these groups sadly newly diagnosed people do feel very isolated especially if their doctors doesn’t give any support and information it’s where You'd look to try and understand what Fibromyalgia really was and how complicated it people get nasty towards each other as well sadly it’s social media for you.
I no longer look on line about Fibro except the forum.
I read such judgemental hogwash masquerading as mainstream research. Can I say it's fake? Have to read the papers thoroughly to have any idea that they actually made stuff up. But I feel it is really that Medicine hates fibros. They have a negative image of them and therefore that's what they see. The PACE and GET trials are now in question as based on shonky research. (psychosocial model of health) But they stand, on account that it could be useful even if the research is dodgy and of course there is next to nothing useful to offer fibros. If the regimen doesn't work, they can blame the patient for not trying hard enough.
Fibros are attention seeking. (that was the last piece of research I choked on.) And Medical people needed to be aware of this, while seeking to treat them. The pain lasts so we can get more sympathy. Fibros are a bottomless pit wanting more and more. Now fibros, how many of you have gotten a jot of sympathy from their Doctors? Would you really bother to try?
If a dr treats us and we don't improve, It is horrid having to say, treatment didnt work. We want to please those that help us. We want our drs to feel good that they can help us. But most of us don't want to lie. How does making our drs feel powerless, give us the attention we crave? It doesn't.
I was accused of lying about pain, because the given treatment, had to work. It couldn't not!
Another time, I couldn't have the side effects I reported, so I must have made/dreamed them up. Later I realised the side effects should have led the GP to a new diagnosis. instead he was fixated on discrediting me.
Reckon if I wanted attention, I'd wear an attention grabbing outfit. A lot less trouble.
I fear there is so much dodgy advice out there much based on stereotyping. Lazy fat menopausal fibros need a kick up the Ar$£ and Drs should stop indulging them. The young slim fit fibros with PMS, what advice for them? Neurotic? Anxious? Wanting to sit out their lives? Good to know what your doctor thinks of you hey? Drs find it hard to care for fibros and some positively bully them. It is a shame, because after so many years of this, the trust is gone.
When I have had weird side effects, I've felt too foolish to mention them. Who knew some odd effects are actually tell tale signs the drug is dangerous for you?
Drs have peddled misinformation for too long. IBS is just stress? Wheat makes no difference with tummy issues? Gut bacteria affecting digestion is nonsense. Thinking what you eat affects your tummy means you are neurotic. But this is what the Drs were taught. For years their patients have complained in greater and greater numbers about wheat and they have been told they are being silly. Responding to a fad. Now we hear wheat is an issue. The way we grow it has meant greater and greater crop spray residues. GP's must have been aware of this yet they continued to deny the problem as per their training. Why?
I always get told different info which contradicts itself.ie I have been told I have complex pain syndrome following injury for foot . I also have other medical conditions as well as fibromyalgia diagnosed over 20 yrs ago.I was told I needed to go to specialised pain management because local hospital cant help as dont have adequate pain management clinic.iwas told I receive care such as physio,meds,injections.i go to the clinic only to be told you cant have any treatment if you have fibromyalgia.noone can have any other pain issues.also told treatment dont work if you have fibromyalgia.so I have been left in alot of pain and unable to wear shoes,cant bear anything on my foot or to be touched.if I didn't have fibromyalgia I could have injections,physio,meds,pain management techniques the lot.i have always selfed managed now I cant.
How would we know it was fake? Not always obvious is it?
I don't know what is fake or inaccurate. Who really does? It's the same with most things in this world in my opinion.
I agree Zoonie lot's of interesting stuff, I've been buying the science mags for years, there's always interesting tit bits in them as well. x
This has been the only source of information on this disease I have read. I was almost sent to a specialist for diagnosing Fibromyalgia earlier so I joined this forum to try & understand what it is. These earlier symptoms became less pronounced, but currently this winter they have once again become worrisome. I definitely have fibromyalgia features, at least it feels that way again now. This motivates me to read about it more here.
I see very little in everyday news or reading matter about fibromyalgia
I try to stick to research studies and find a lot of info on you tube from consultants and Drs
My dr is brilliant. He asked me to try Tumeric and black pepper. It is really good although expensive
I have read a number of reports circulated on Facebook which usually contain the wearisome plea "do not share but cut and paste this message.." and the even more wearisome "I know which of my friends will do this and which will not bother". It refers to Fibro as an auto-immune condition, which as far as I understand from my doctor is incorrect.The friend who circulated it did so with the best of intentions. My dentist asked me recently if I am 'taking anything to help, such as steroids'. I had to explain that steroids are not an effective treatment for Fibro, perhaps they were thinking of Polymyalgia (PMR). At least he and his assistant had a genuine interest in hearing about what life with Fibro entails, they asked me questions all the while my other half was having his check up/clean and polish!
Yes the old saying ‘if it’s too good to be true it probably is!’
Is it the new word for hypercondria physical mental misdiagnosed and used as an easy way to pip mmmmmm think you have to have it to know it’s real xxxxxx
Hermes123.
Like all pain related problems they have to be fake? other wise why are we all suffering multitudes of pain that cannot be released from our bodies, we are all in tension or exhaustion or both. Pain problems lag far behind all other sever problems, with all the hospital staff from physiotherapist to top Consultants all one gets if your lucky is a half measure fix, to date I have not met one person who has said I am curd from pain and have been for some while. Oh, I wish for that day after some fifty plus years. Hermes.
