I was quite surprised when my RA nurse told me not to Join any RA forums! I could understand it if Fife NHS ran a group of some sort, but they don’t and when you are diagnosed you really feel isolated. As few people understand what this disease is like, it makes sense that sufferers come together at some time so we can see we are not alone in our suffering. That’s why this forum is so useful. We are all pretty much anonymous though on the forum so there’s no chance of actual meetings, so I think local organised or informal get togethers would be beneficial. I have a great team by the way in Fife but sometimes it’s good to speak face to face with fellow-sufferers. I don’t know anyone else at all with RA. How does anyone else feel?
Forums: I was quite surprised when my RA nurse told me... - NRAS
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JanetMaryBishop
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Why did she think it was a bad idea to join a forum?
She didn’t elaborate as to why! And I didn’t argue as there was no point. I just took it all in!
Would have been nice to hear her reasons🤔
I think some Rheumy nurses might have encountered people who go rushing to Nursey ....when they read of something on a forum & insist they have it.
A bit insulting if that is the case....I think we are all adult enough to know what needs our overworked nurse's attention& when we can "wait & see"
I think forums like this must save medics a lot of time.
Probably because most posts about treatments only talk about the negative side affects of medication. People who are totally satisfied with their treatment which is working well for them are usually getting on with daily life and not worrying about their illness.
I for one have been scared by what I've read on this site about MTX so delayed starting it due to all the scare mongering. My rheumy nurse also advised not to read these posts. She said u never hear about the good only the bad. That is why!
Well you clearly haven’t listened cos here you are lol😀 Good for you. None of her business what you do as an independent adult I think. I do find some of them can be a bit patronising, overstepped the mark there: you’re entitled to peer support and totally agree with rest of your post x
JanetMaryBishop in reply to
Ha! That’s me all over!
in reply to JanetMaryBishop
Maybe she's worried you might find out more about RD than she knows and might make her feel silly. I think any means of learning how others cope is a good thing. 
How strange. I can sort of understand as you do tend to get the newly diagnosed and the struggling who may give a newbie the colleywobbles. However, I can safely say that this forum has been very useful to me as I know of nobody else with RD. Swapping experiences and answering questions I would have been embarrassed to ask the rheumy team. I've even had many a giggle. So, well done for ignoring the probably well-meaning advice you rebel you
J
And think of all the little tips we pick up from each other Gnarli!
Ooops. Sorry, it's a brain fog day. I should have said 'and the tips have been invaluable from those angels here who have lived with our nasty disease and happy to share'.
I always find brain fog is dispelled by a nice glass of wine...I go to sleep, & it's gone when I wake up!
Perhaps she has heard of something that she considers might be harmful.
Or is one of those people - like one nurse who told a friend of mine that he couldn't have his blood test results 'because doctor knows best' !
From my point of view the more information that someone has about their condition the better.
And this forum is amazing in that everyone understands what it is like having the disease and doesn't say 'I have that too in my knee'.
' I have that too in my knee' haha - Brilliant and so true! Maybe the Fringe here in Edinburgh is a good place to point out the differences between RA and OA ! A humourous theme of course but getting the point across! 
It's the unknown that keeps us coming back for more and the support is real on this forum and it's helped me and so many others with RA ,RD and all the strange meds we have to deal with i don't think I could of managed without this lot fantastic forum oh and my rumy nurse gave me my first booklet off here so she said it was a really good I've just received the one on fatigue and I've found them really helpful better than the bits of leaflets from hospital
Hi, I have had RA for nearly thirty years and was pretty much on my own. I found this website by chance a couple of years ago and I am very glad I did. I have found it a huge source of friendship, understanding and helpfulness. There is nothing in my area either, Lanark so to find a place where people share personal experiences and advice is a relief. I don't understand why the nurse would advise not to join but glad you did. Perhaps she felt it would be a negative experience but in my experience it is the exact opposite.
How curious. I wouldn't tell anyone not to go on a forum like this. I might not be recommending it if someone was minimally affected( I know two people who are, and don't feel ill or fatigued, and it doesn't effect them much at all, so they wouldn't relate to it.) If I knew someone had health anxiety about all illness I would also be cautious. However 99/100 I would recommend it wholeheartedly for the reasons stated by others. In an ideal world there would be easy access, lots of support, time, and sharing of information by Doctors, but that doesn't necessarily happen in the real world. I think the balance between optimism and realism is a difficult balance but 'it is as it is' on a daily basis. Reasonable hope seems the way forward and this site allows support to each other in this. On this site we all know RA is a misunderstood disease and anyone can post with as much visibility or lack of it as they like. ( i feel vaguely exposed as I have only come across one person who is the OH of the one with RA. ) Anyway, good for you for doing what you want to do!!
Hi all - thanks for your responses. I’m glad to be part of this because sometimes we know best! After all the rheumatologist and the team, wonderful though they are, have not got RA so can’t always know best. Needless to say, on my visits I always give them the benefit of my experiences (!) in the hope that future sufferers will benefit. Have a good weekend. J
Well said JanetMaryBishop X
I think some doctors/nurses feel that the forum's aren't representative of the majority experience of living with RA, so you tend to get a skewed view as proportionally there are more people with the most difficult & unresponsive disease on here than in real life. So they believe it will upset and worry people needlessly. Which is sort of true, but also not true at all as there are quite a few of us who have well managed disease to give hope to newbies. And it completely overlooks the fact that it can be a lonely disease as I don't know anyone else with it.
Ah but everybody we speak to thinks they know all about it don't they HH?
I'm 20 years diagnosed & people I have know since before RA still ask if it is because I played too much tennis or because wore I 4" heels in my 20's!
I just can't be bothered to reply these days!
I might still be in a lot of pain and had RA a while,but i will always support others.xxx
Hi JanetMB, I live in Australia, we have no online or F2F forums here, so I’m very happy to have access to this one, cheers Deb
This has made me so angry as we need this forums so we know we are not alone and this site is the best of the best.xxxx
I am so grateful for this forum-a safe place to share and learn. I too know no one else who is experiencing what I am. And then, here you all are! ❤️❤️❤️❤️🙏🏻🙏🏻🙏🏻🙏🏻
It’s a fine day here in Fife!
Hi JanetMaryB
I am very surprised to read this. I am not that far away from you in terms of distance and my Rheumatology Team have leaflets and information about NRAS and forums all over their Department. The nurses actually highlight the charity and encourage patients who want/ need to talk, share etc their stories because they don't have the work time to do that as much as they would like to. As you have mentioned, and in the clinic I attend, I don't know of any nurses who have Rheumatism therefore although they can do the practical side of things very well and do sympathise I dont think they can relate to it to the extent someone with AI Disease can. I understand the founder of NRAS herself has RA.
Suzie x
Its strange how regional health boards differ in their approach - I did get loads of leaflets and things but I was surprised in this day and age of social media that the department didn’t direct me to a group. Anyway, you take it into your own hands ...!
I know! Was surprised too! Good on you though Janet for following what you wanted to do! X
Most odd. Our Rheumy dept doesn't dissuade from contact with others, in fact they have NRAS posters in each treatment room, or they did last time I noticed. If it helps you I see no reason not to be a member, you're an adult after all & can choose to do as you wish. I'd be tempted to ask why she "told" you not to join any RD forums, it could be someone in real need of contact with others in the same boat she's also "telling" not to join. Maybe she's not looked on here & seen how well it's run, how well it's monitored by a charity wholly dedicated to those with RD, providing their support & giving out information. I'd let her know it's NRAS run, see if that changes her view.
There's an NRAS group that meets at Ninewells hospital, Dundee relatively close to you I think. If it's of any help details here nras.org.uk/groups/tayside-...
I wonder if the person making the comment was aware of this particular forum. I've signed up for them on occasion and eventually left because so many people were advising to avoid medically necessary treatments and Medications. To place over emphasis on quasi medical treatments, etc etc. Some Forums can be really bad for that stuff and give all forums a bad rap.
Hello Elisee55
Maybe she wasn't but maybe she was trying to reinforce that if I had any problems I could contact the team any time. I don't go back to her for 5 months, or at least that is the plan at the moment, but I will be reviewing everything with her then, and will make her aware then that this site exists and has an active support network. J
It's possible she wasn't aware it's run by the NRAS & why if it was me I think I'd let her know which one I'd joined & to take a look. I know the type of forums you describe, not helpful especially for the newly diagnosed, just when you're looking for positive advice & at the start the of treatment then being told you can treat RD, PsA etc without meds. It's confusing & has fractured this group before, caused debate, being new you wouldn't have experienced it, & whilst the NRAS as a charity has to lean more towards the guidelines as set out by NICE I'd like to think we can tolerate other's choices. If we wish we can make our own minds up once we've tried meds, but to have it forced upon you, that doesn't help as you know. A well balanced diet helps me, specific supplementing too but meds are what have kept me pretty well controlled & joint replacement free for 10 years. Also, given early intervention is key personally I'd follow the medical professional's advice initially. It's a different matter if you're unfortunate enough to have given them a good go & not responded or have intolerances to meds, the trouble is when one or other won't acknowledge we have made our choice & continue trying to 'convert'. I don't hold with knocking "big pharma" either. In a life or death situation would those who knock it really not accept medical intervention, or worse, insist their child doesn't? That would be just wilful, criminal. Anyway, we're a happy group despite the difficulties we can face & I hope you enjoy being here Elisee, sans bad rap!
Thank you nomoreheels I will have a look at the link. I’ve always believed that you should be involved in your own medical treatment which is why I am on here. I think contact with others has to be beneficial and that is certainly what I’ve found here. In life, you don’t get everything you need from one source, and that applies to dealing with illnesses too.
Being educated in your condition is vital I think, it is for me anyway & something my first Consultant drummed into me, even gave me info & guided me to reputable sites by way of a hand written list! I agree you can't get everything you need from one source, especially when it's from someone who doesn't live with condition, how can we expect them to know how we feel in flare for example? We obviously need their professional input, knowledge in meds & which is likely to be best for us but they've never walked in our shoes. I relate it to something my GP said once, when she was a medical student to understand how a patient with angina felt, the pain etc, they were given an injection, then they'd experience something like it & could be empathetic. There's no such injection for our Rheumy team to understand the pain of a flare is there?! We know though... you can come here & be listened to, given tips to help ease specific situations, share experiences, the list goes on. Your nurse is potentially denying other patients all this & more. More than 20,000 members have found this particular site, that's around 5% of the population in the UK with RD alone, not to say associated diseases. Hmm. 🤔
I haven't been on here for long but had RA for 26 years. I'm learning lithe things that I wouldn't any other way. So let's keep it going please
I think when you get diagnosed it is quite daunting and you do feel isolated ,but you would probably be surprised if you knew how many people in your area have it .These forums are good as you can learn all different tips on how to use meds and help symptoms and side effects of meds ,every little bit of advice is beneficial to controlling the illness .I suffer from Psoriatic arthritis (PsA) ,not easy to live with but the forum helps me cope when it's getting me down .If you organised a meeting inbuilt area for *RA sufferers ,I bet you would be shocked at how many people come ,good luck *
Hello Magymay - I think I probably would be surprised at the number of sufferers in my area - after all there is a whole team there including consultants, Nurse, Physio, podiatrist and Occupational Therapist, at the end of the phone and the health board wouldn’t do that for a handful of patients. Our paths never cross though so you feel as if it’s only you! I’m going to try to get to the Dundee meeting in September and take it from there.
This forum is a lifesaver as we all have things in common, this disease and a great place to make friends and interact and I wouldn't be without it xxx
It was my RA nurse at Bath who recommended NRAS, telling me this was a reputable site and she knew I would be scouring the net for info!
This is a common failing within the health community, they do like secrets, I know my local CCG have decided that 3 of the medical proceedures that I have had done in the past, which will need to be repeated at some point, will no longer be funded but have given no explanation of their decision making process, that is the bit they don't or won't disclose just the decision itself. The other issue they have is people making self diagnosis, I did exactly that after being told of each of my symptoms by different consultants, unlike them I investigated further on university medical sites and joined up all the symptoms which included the one that was never written on my medical cards when I was younger and the last consultant I saw actually agreed with my findings. This meant I knew how it would progress in the future and treating my symptoms was the only course of action but it meant that the relationship and interactions between the drugs I am prescribed could be better monitored, by them and more importantly me. Unfortunately they do have reservations about those less able to research beyond wikipedia and I understand that, but this site is not about diagnosis, it is about having a common forum for sufferers with understanding from fellow sufferers, so keep with the site and try to get the nurse on board an to understand that a support network is very important.
I was told the same by my consultant as he felt I would read nothing but bad news, to the contrary.....such a wonderful network who understand fully
Hi Janet, I got similar advice but worded differently. My Rheumatology Nurse advise a pinch of salt with anything other than official websites because of some of the utter nonsense on some sites (I'm sure we've all seen crazy claims and advice online). I totally agree that forums like this are such a lifeline to speak to others going through the same thing. I've also met face to face with others with the same condition and it really helps to chat. You're following your instincts, best thing to do x
Do ask. You can ask anything, anyway. It's your body! Good luck.
Thanks everybody!
I think support groups are excellent. You are correct, how else would you be made to feel included and share experience of others who share the same illness, feelings, and symptoms.
Follow your gut instincts.
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