In your opinion, which of the followi... - Fibromyalgia Acti...
In your opinion, which of the following are the most important aspects which may make a difference for people living with Fibro ?
Mdaisy316 VotersPlease select all that apply:
I voted for raising awareness, because of the way I was hounded out of my job by people who thought I was a hypercondriach, and didn't believe that someone could have so many things wrong with them. I've also lost all but 2 friends, who presumably got sick of me being unable to go out all of the time, and even my own family question how much of the pain etc is in my head. I would love for them all to be educated about Fibro, rather than me hoping they think enough of me to look into it x
Hi,
I'm really sorry for everything you went through/are going through. I'm really struggling on the friendship side of things at the moment too I'm guessing because I keep having to say 'no'.
I would say - All of the above. Everyone's experience of Fibro is different, after all, so some things will be more important to some people than others depending on the nature of their symptoms and circumstances. But none is less important than the other.
I would also say generally increased access to social support. If we have this we can reduce the general anxieties of people living with Fibro, and the subsequent increased vulnerability to flare ups. With more practical - and emotional, help people will start to feel more positive and better in themselves, and this will then help to manage the condition better. But this will increase with raising awareness of course.
Gentle (((hugs)))
xx
Hi, I agree with you here. On my first visit to the doc, he said if I had all those symptoms I'd be depressed. I feel I don't want to mention to people now as they don't really want to hear about all my issues anymore. I gave my husband the leaflets on my condition but even he didn't read up on it! So frustrating.
Totally with you, my employer has zero sympathy and my friends and family just don't get it. My employer is trying to get me to pass exams and I'm really struggling. I just can't remember anything, so much brain fog, my memory is like mush. I really feel like I'm being bullied, so much pressure to pass these damn exams. I know this sounds awful but if any of my friends or family ended up with this disease, I would not feel any sympathy for them at all. They have not showed me any mercy at all. I'm a very ill person but they all treat me like I'm trying it on. I would especially love my manager at work to go through this hell....I would laugh at him x
We need pain management NOW.
I voted for other. My reason is; that in the time I have been coming on the site I cannot remember a single day whereby somebody hasn't been worried about a tribunal, turned down for their benefits, needing to go to an appeal and the list is endless! Therefore I think what would make a real difference is if the DWP and government made it easier for people with Fibro to get disability / sickness benefits. Not to make sufferers anxious or depressed but to give them some dignity and self-respect, after all, this is a basic human right.
Take care everyone.
Ken xxx
If there was more understanding and recognition at 'grass roots' ie NHS, all of these points would be addressed.
Jenni. X.
Hi Matey, I agree that shouldn't happen. However, I must be in the minority - I can't complain about the DWP. I was awarded my benefits on the grounds of disability from Fibro. It was very quick and I am now registered disabled.
This is exactly why I haven't gone down that road. I've had to go part time now at work so have lost half of my income. If it wasn't for my boyfriend I wouldn't be able to manage. The thought of all that stress would cause me to have a flare and that's just not on.
I know that there are a few con artist out there that have now made it very difficult to get benefits that they deserve and it's so very wrong.
It petrifies me that one day when I can't work at all I'm going to have to put myself through hell having someone judge me who has absolutely no idea or understanding of fibro. But because we may look ok in there eyes we are.
So I really hope that the awareness and education. Of these so called professionals that sit in judgement improved tenfold.
Hi smelly
Thank you for this and sharing your personal experiences openly with us. I think you have hit the nail on the head, so to speak. I do feel that you should not have to be put in this situation however, and that some kind of benefit should be allocated to you to supplement what you have lost in salary reductions. If there could be some kind of professional liaison between the DWP, the NHS, government and employers alike and for us to achieve a greater recognition of our illness then maybe this could be achieved?
I hope that you are as well as can be?
Ken x
Not as yet am waiting an appointment
I find myself unable to say one above the rest . Every single one is of utmost importance. I also agree with Ken disability benefits and aids need to more easily available.
If there was one area I would after serious thought perhaps 2 and 3 would help us through are lives.
xgins
I'm with you on this all of then are valid and important, but from the results the increased knowledge is coming out way ahead of everything else and I think I agree with that, as so many people don't think there is a problem, because they can't see it. the number of times I've been in plaster due to breaks caused by my osteoporosis , people can't do enough to help, little do they know that I struggle even more on other occasions which go completely unnoticed !!
Foggy x
Hi gins
I hope that you are as well as can be? I think that you are right as an holistic approach to the matter would be much more beneficial all round. Hopefully one day the DWP, the NHS and all the other departments will liaise together and give the issue more validity as I have read so many posts from people who are really struggling both psychically and emotionally.
Take care
Ken x
I agree with Ken, it always amazes me that according to the powers that be fybro is not a proper illness that qualifies us for benefits, but try and get some health insurance and then suddenly you do! I also agree with lipbalmaddict there have been times when I have felt jealous of people who are diagnosed with socially acceptable illnesses because at least they get some support and yes some genuine sympathy and understanding. I can't say how many so called professionals have looked at me like I am some sort of apology and treated me like one, you know the line, go away and come back when there us something really wrong with you!
I ticked 3 and I also voted for other, as I feel that a site like this really does help us from day to day, it's like having someone in you living room with you, to share your problems laughter and tears and you can also share in theirs, this site is invaluable, hope I have made sense.....Have good day ....Dee x
I wish that there was more information available on complementary and alternative treatments on how to cope with the physical aspects of this condition. For a number of reasons I cannot (and will not) take prescription drugs so my only treatment is positive thought and biting the bullet. If the NHS provided c & a treatments this would be a Godsend to so many of us.
Hello Yorkshiregirlie,
FibroAction published a Complementary Therapies factsheet last year written by the Founder/Trustee Lindsey Middlemiss, evidence based & up-to-date information as we hold the Information Standard Certificate which you may find helpful. Here's the link;
fibroaction.org/News/New-Co...
I hope you find this of interest
Best Wishes
Emma 
FibroAction Administrator
Thank you! I had no idea this was available. Much appreciated.
No problem, you're welcome
Hello again, I just had a look and there are some techniques here I am unfamiliar with so definitely worth pursuing. I do have a question though about a herb I read about recently - Holy Basil. From what I have read this might provide relief from the pain symptoms of fibro but it is certainly not something I would try without a lot more knowledge about possible side effects. Have you ever heard of this as a treatment and, if so, what are your views?
Hi Yorkshiregirlie,
Holy Basil has been used by many cultures in traditional medicine for may years.
I have not heard of it used for fibro, however it does contain eugenol which is a cox-2 inhibitor so would offer pain relief and anti-inflammatory features like other cox-2 inhibitor medicines.
As for the interactions - I would be surprised if your doctor would know, it is an ayurvedic medicine so if your doctor practices that or is Hindu you may have a chance - your best bet is to ask them about cox-2 inhibitors and go from there.
It has been used in pagan medecine ( herbalism) for centuries as part of a poultice for fever and infection.
I know there was a study on using holy basil extracts to treat cancer patients but never saw the results so not sure how that went.
Also - apparently used in Thai cooking ( holy basil is different from regular Thai basil though so be sure to look for Holy basil or Thai holy basil if you decide to give it a go)
If your doctor is no use, try a nutritionist, or a herbalist or someone who practices ayurvedic medicine - they will know if it is suitable for fibro.
Hope this helps a bit.
M
Thank you for this information, it is very useful. There is so much nonsense on the internet about things it's hard to know what to believe sometimes. Much obliged!
All of them are just as important as one another
Having read all of your thoughts, I can agree with every single one. I suppose my choice was very personal to me as things are still very raw having studied for 7 years to qualify to do that job for a further 11 years, only to be bullied out because of this illness. But that is a very selfish view on the opinion poll, for which I apologise.
I've yet to go through the benefits battle, but having worked for a government department for the said 11 year career, I have no doubt in my mind that it will be a nightmare. The HR department for this particular body didn't know how to spell Fibromyalgia, never mind it's affect on sufferers!
I think support is the key, whether it's from friends and family as a result of raised awareness, GPs from more medical research and training, social services and the DWP with regards benefit and mobility aid, even alternative therapies made available on the NHS. I for one find remedial massage and acupuncture (Physio type rather than Chinese medicine) very helpful. Finally, with regards pain control, why aren't there clinical teams dedicated to Fibro? For example, Lupus patients are treated by a clinical team who look at pain, joints, skin, Physio, surgical, vascular etc to treat the various symptoms. Likewise, with Fibro, each patient should be under the care of a rheumatologist led team of experts including physios, gastroenterologist/urologists (for those with the IBS and bladder symptoms), social workers for home care, CBT for coping strategies, pain clinicians etc...why not??!
Right, I'm putting my soap box away now, that's the most thinking I've done in a while x
I recently been to my Rheumatologist who monitors my condition - to find out that he actually doesn't know anything about Fibromyalgia !!! - How does that work!!!??
Hi there, not 1 G.P has any answers, I totally agree with people wanting more understanding about this condition, e.g. the work place, I have gone into my job in agony, there should be a benefit for us sufferers to be able to get, after all we don't want to suffer like this day in day out, but there is no help what so ever when we are unable to go to work, its not understood by people and it makes you feel your making it up all the time, I don't have time of work because I know people wouldn't understand my condition.
I have now been diagnosed by 3 neurologists and a rhumatologist. The neurologists knew more about fibro than the rhumatologist who admited that he was not an expert in fibro. But at least between them they educated my doctor who wanted to do his best for me but could not believe that ALL my symptoms was down to fibro
Thank You for the comment. So you must have voted for more awareness in the NHS? You can help in a small way to raise awareness, why not ask your local hospital and ask if they will display our posters? We can send you Awareness packs for your local hospital, Dr's Surgery etc. Let's raise awareness together !
please would you send me an awareness pack.?
Of course please email me with your postal address and I'll be happy to sent one to you, here's the email address info@fibroaction.org.
Hi steve I have sent you a reply but for some unknown reason its jumped down the page
I'm still waiting for my appointment with the atos as I've been on the waiting list since October 31 last year
I think its all about awareness: friends , family, NHS, work & the one the poll didn't mention, the DWP. I've had this illness 16 years, so I've learnt how to live with it. I've also found out who my friends are! I think the hardest thing for us to deal with is not the pain, but the attitudes of others who often have no idea what we're going thro.
Hello All,
Thank You for all your comments.
I know increased knowledge for DWP/ATOS isn't mentioned I'm sorry, I originally put it in and then thought I knew this would be top,
So, I decided to add National Institute of Clinical Excellence, World Health Organisation & Pain Management assessment tool & the others to see what is more important to people living with Fibro, in regards management of their symptoms.
Especially as so many of you experience non Fibro Friendly Consultants & GP's. I think it is important and I'll know you'll agree to get the knowledge of Fibro within the NHS to try to stop the stigma we experience.
I too, have had GP's say things like 'What's wrong with you now?' implying I'm a hypochondriac pre diagnosis. I totally understand what is happening to some people and I hope we can bring about change somehow!
I personally hope at some point a Pain Management Assessment Tool is available for Fibro soon, as the normal Pain Ladder approach doesn't help us as we try medication after medication in the Opioid range without any relief in my case which leads to more disbelief by the GP's. An algorithm to inform the best treatment without trial & error of all the ineffective medication before we finally get a recognised Fibro treatment would be really helpful in my personal opinion.
I wonder if anyone has seen this post written by our Founder/Trustee Lindsey Middlemiss 2 years ago about the DWP recognising Fibro;
healthunlocked.com/fibroact...
You read this and yet so many say that in appeals, medicals and tribunals they are not understood.
Are people aware of regulation 35 when claiming benefits;
Regulation 35-Exceptional Circumstances, as it states that .this applies if 'The claimant suffers from some specific disease or bodily or mental function,and by reason of such disease or disablement,there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for work-related activity
Therefore if any WRAG group activity that will lead to a deterioration in your condition either mentally or physically under Regulation 35 you cannot be placed in WRAG, if you can prove that your condition will suffer which we all know would probably be the case.
I'm looking forward to the results of the poll and anymore comments
Best Wishes
Emma
FibroAction Administrator
Agreed. DWP/ATOS are completely unhelpful as organisations. That's not to say some individuals are exceptions.It's not their job to help US, it's their job to save public money by proving us wrong - but that's counter productive in the long run. Even though the NHS has recently talked about prevention being better than cure recently (now where have I heard that before).
That article about the nurse who testified about ATOS to the Scottish parliament was an eye opener. Sorry I can't conjure up the link.
It's worth remembering we're not singled out by a long way. I've just had an email from MS Society talking about ATOS/DWP claiming conditions like ours can get better!
I feel for those whose friends and acquaintances look upon them as pariahs. Actually, that's why I have only a couple, and I value those greatly. When you're in trouble you soon find out who your true friends are.
Regarding your link: There seems to be a mismatch in what spokes people say and what their minions do. (Yes, I've just watched Despicable Me).
dailyrecord.co.uk/news/scot...
Link to the nurse who testified.
Many thanks
I feel raising awareness within the NHS and generally is vital
1) so that people don't think you are making your symptoms up and that it is real and not just in your head, as diagnosis is not straight forward.
2) employers I have found to be the least sympathetic, they just don't understand!! a greater awareness here will sort out a lot of the stress people have to endure.
If they could just walk one week in our shoes maybe this would change opinions.
I voted for other - GP's need to actually believe people when the explain they are in pain and not keep shipping them to different hospitals for the same treatment - I will be going to the my 3rd hospital in Feb for the same treatment to ee if i have fybro.....I also broke my back 6 years ago and they don't seem to realise i can't do some of the exercises that are offered...why don't people listen!
Hello All,
Let's get these awareness packs out there as it's a start ! Why not ask for the posters to be put up in GP surgeries, hospitals, pharmacies etc. If you ask and they are willing, please email us info@fibroaction.org and we'll send them out to you.
Spread the word about Fibro & FibroAction too !
Emma
FibroAction Administrator
I went for WHO classification as that would have to be used by the NHS & DWP, which would effect and affect many other outcomes like info, increased awareness and Pain Management tools, and also kick off more interest in research (to save government money!). If in doubt go to the top 
I would say all of them. I have pains in so many random places, they can come on at any given time. I don't understand why I hurt. I would like awareness raised within the NHS and more public awareness but I would also like to know more.
if we could get a classification then perhaps people would presume i am a hypochondriac who could do with a little more motivation.....
less hassle from DWP
I voted for reclassification from rheumatologist to Neurology because its important to get the right classification to achieve the right diagnosis and treatment, as well as proper research
