In your personal opinion, do you like... - Fibromyalgia Acti...
In your personal opinion, do you like to read posts on FMAUK website/social media/forums about any of the following?
Just shows what an open minded group we are.
Or maybe just desperate lol 😘
Yes I would prefer to read everything even if the content I disagree with as I feel it is important to discuss with others why it is not credible. One Media story springs to mind in The Sun was 'This £9.95 helps relieve Fibromyalgia Pain'! I think if we don't know about such articles that we are not an informed patient but that's just my opinion. It will be interesting to see what the poll says as a point of further discussion 
Forums
Yes, very open minded
Think I've messed up s bit here!! Xxxx
👍🏻
Hi Craftysmither
Just to inform, this isn't about what general members post but about what FMAUK share or don't share on all their social platforms
Thank You for the lovely comments about this community
Emma
Personal experiences and recommendations have helped me most of all.
I understand but as above it is about what FMAUK share not general members experiences which of course highly valued contributions to the site - as you've alluded to. FMAUK wanted to look at this poll in regards to what they post to see what people prefer
Think we all read and reply here because we no we not alone and can share stories.most of time hospital staff tend to give you booklets because they can’t really help us understand what it is as they don’t really no much themselves only a list of symptoms we might have. That’s impressing I get from my nurse
I really do understand but as above it is about what FMAUK share not general members experiences which of course highly valued contributions to the site - as you've alluded to. FMAUK wanted to look at this poll in regards to what they post to see what people prefer
Yes I no I that’s why I picked I like to read and reply 🤣
Okie dokie just making sure as you mentioned sharing stories with other members
You may need to re-post this survey to get an accurate result, as many people seem to have misunderstood the question. 🥀
This data is not the same as an accurate survey and merely just used as a discussion point and as a rough estimate to the views of supporters of FMAUK. I don't think reposting will make any difference, do you desquinn ?
Ha, no! Good discussion topic then! 😂
desquinn asked for this poll and I will let him explain why - but obviously this data cannot be quantified like research can. I personally think it's a great discussion, as I think discussing all aspects of Fibro as I mentioned above means the patient can make informed choices
I would like to be informed on everything whether it's good, bad, right, wrong or indifferent. Only then can I make an unbiased opinion for myself. Even if it turns out to be the wrong decision in the end.
Prefer to read everything, that way I can make an informed decision. I also like to read peoples posts, help if I can but not a regualr contributor cos of the condition. I will try most things to help and give opinion of things I have tried.
Would love it if something worked for all but the medical professionals are still learning so you never know.
Fibromyalgia is a name given to different health problems.
People who are given drugs that will never make them well.
Magnesium and other vitamins and minerals are missing from their bodies. Dr Chatagee showed this.
Doctors have not been taught about nutrition or the need for vitamins since the 1960s The next generation are now able to educate themselves on a good diet and the need for vitamins.
I feel it's time to have input on your side from Nutritionists
Diet is something an individual can control which is empowering and a good diet is good for you. But at present there is no evidence that diet is linked to fibro.
I have had tests and I have no deficiencies in any minerals or vitamins.
I am seeing a nutritionist and following their advice on a good healthy diet.
I'm cured...Yippee!! Oh, hang on...no I'm not.
It is worth noting that Dr Chatagee is a very engaging TV doctor with an opinion..He has expressed his opinion but he is no expert on chronic pain and he certainly hasn't found a cure or identified the cause.
That said I agree with him that we should all eat healthy whether it cures our condition or not.
It would be very boring if the only posts are those that everyone agreed with! As long as there is understanding and compassion we are all entitled to our opinion. Personally what I enjoy reading the most is people's experiences, especially when they are positive which can lift you up. Being in pain all the time sucks! but reading posts on here shows you are not alone.
Agree 100%, we should be free to discuss anything related to fibromyalgia here and as long as we're not advocating dangerous treatments, we don't need anyone poo-pooing our opinions. We are free to be negative and accept our fate as victims or try to do something about it. All established treatments for all kinds of medical conditions have to be tried out before they become an accepted treatment. None of them would ever get developed if everyone was too negative to give them a chance so as long as it's safe, experiment away I say!
After taking condine for so long I don't think I will be poo pooing anything 😂!
Exactly! Sometimes it feels like we've got nothing to lose.
Try some Metformin and Alogliptin for T2 Diabetes...I seem to be poo pooing all the time since switching to them.
🤣🤣
Hermes123
Hi Mdaisy, I would like to see genuine Research papers as to where we are today and what the near future holds? Not Interested in papers produced that are todays news and tomorrows fish and chip papers. there are for to many theses papers written with all sorts of claims, that the day after publication its the last you hear of them. I would like pain research university's to give us real facts on what the future holds for all the various pain conditions being controlled and pain ! I was going say relief medication, but if they were relief medication I would not be writing these comments. Hermes.
Try searching Green Med Info, it’s a collection of research papers and articles. Also I subscribe to Health Rising, Cort (site owner), publishes & discusses the latest research and attends health conventions, he covers fibro, ME & chronic fatigue syndrome. Dr Mercola writes evidence based articles, as does Dr Jockers. Both have articles on fibro and chronic pain and fully reference their articles with links to the research papers. Of course, not all research is valid or of good quality and more is needed. As you say, the source material can be wildly different to the articles that appear in the popular press!
I almost got sent to a Fibromyalgia specialist a year ago. I am trying to learn about this disease from any resource you think is the most helpful. My aches are back with me this morning so I will definitely be reading this forum’s ideas today.
Probably the weather, that always triggers a flare up for me. Nothing helps really, I just take my prescription strength painkillers, have a long soak in a hot bath with Epsom salts until it gets too cold to stay in any longer and do as little as possible until it passes enough for me to function again. I've got a magnesium oil spray that you can rub into sore muscles and areas with cramps, it takes the edge off a bit. If my back is particularly painful and I feel hot, I put ice packs on it and rest for as long as possible. It numbs the area at least in the short term and if I'm really lucky, I feel an improvement for hours afterwards. I hope you find something that helps, take it easy x
Please see my reply above Clarissa, I’ve listed several sources.
Errr...howdo we know before reading which articles we agree/disagree with?!
Basically we are asking if FMAUK should post a range of articles that might be disagreed with by supporters to discuss all topics OR would supporters prefer it filtered/ tailored to post things that the majority would agree with.
I personally think it's best to see everything and all comments/opinions on the posts to make an informed decision. Being filtered may mean people may miss important information about snake oil, poor research etc
Hope this makes sense
Emma
Some interesting research into fibromyalgia
It takes 40 50 years for things to ever come about don’t think I will see the in my lifetime.
More needs 2 b spoken about relating 2 fybro its a debilertating health condition.
Their r people who think it's mental health & were faking it!
If only those people could b in our shoes 4 a while & mayb they would change their opinion
Same here.... how would I know - and how would others know how to channel their writings in my direction for reading. 🤔
I don’t trust social media and most fora so, for me, there’s a difference between FMAUK and other online resources.
The links would only be on FMAUK social media and community forums
But those links take the reader through to another social media site.
And it’s those I don’t trust, so why would I be interested in reading anything posted there? I’d be concerned that a direct link via a reputable site, eg FMAUK via Health Unlocked could suggest unfounded and misleading views are supported. There’s enough of that already
I do not read everything. The reason is lack of time. Replying to things takes a lot of time.
Hi Mdaisy, l want to hear about everything, especially if it’s natural therapy, l want to know what is out there for my pain relief. For several years I’ve been dosed up with opiates which I’m now doing a slow withdrawal from. Before I found out about Acupuncture my carer took me in desperation to a drug centre, they turned me away even though I was suicidal with my withdrawal because l was on prescription drugs from my GP!!!
I was sceptical about Battlefield Auricular Acupuncture, but, due to my spasms and chronic pain l decided to try it. As long as you go to a qualified professional practitioner you are safe and this has helped me, changed my life and is helping me with my spasms, pain and withdrawal. I’m not saying it will help other’s suffering but for me it’s helped. I kept saying no to my carer but eventually gave in, thank God l did. I have many illnesses, now my body is calm.
Please understand, when you have led a full life and you are now unable to dress yourself, even walk a few steps you WILL try anything.
Thank you so much for reading my post.
All research helps to support and keep my mind open. Knowledge about my own body is vital in these difficult days of the health service and knowledge is always ipower.
The more knowledge you take in, the better the informed choices you can make. xx
The more you know about Fibro the better you can help yourself and medical staff that deal with you I suggest.
All information l can find on arthritis,
after six joint replacements l have to be aware of what can happen next.
Thank you all for the wonderful work that you do, it helps so very many people to realise that they are not alone and all benefit from reading other sufferers suggestions on pain management etc. Thank you!
Other: People, Us, Fellow suffers and their experiences, thoughts, feelings, stories.
Having the connections with someone who knows what our ' Fun Filled Friend Fibromyalgia' is like.
I like to read everything. I just want to see how many people know what they are talking about and how many are clueless
just to read about other peoples experiences with living fibro to learn more about the condition and how it effects them. and just to chat because i don t do other social media because of anxiety but find it more safe if you know what i mean i don t think anyone will judge you. and accept you and i have liked a few things that relate to me music ect. and any new knowledge or research that will help me or fellow sufferers. so if you want me to be to be a test dummy for research you are very welcome thanks antbeech
