Not just a joint disease!

I feel I have to get it out because RA is so misunderstood, even on here, and I find it frustrating. I partially blame the name and the fact that people get osteoarthritis and RA confused. Perhaps it's not explained adequately either.

NRAS (and the other reputable sites) state that "RA is a systemic disease, meaning that it doesn’t just affect joints. RA can affect a person’s whole system, including organs such as the lungs, heart and eyes."

Ok, mini rant over! ;)

12 Replies

  • I totally agree with you and your right! RA doesn't really describe the whole range of autoimmune symptoms we get and most people say things like, oh my gran has a little of that on her knees etc!

    We have discussed names on here but I think it would cost a lot to change the name in reality. NRAS would be what ? National rheumatoid auomune disease?? Maybe NRAD ?

    What do you think ?

  • All inflammatory types Arthrtis affects other organs of the body, yet it appears it's only us that worry about the wording. Even family members don't want to know when you try and explain to them. I had to complete a form recently all they wanted to know was if I had ra but I changed it to 'PsA under the same family as RA. When a copy came back which would be sent to my gp it stated I had no Arthritis, this was from a physiotherapist! Needless to say I was hoping mad especially as I had listed my medication. Another rant over.

  • A really annoying thing happened when we were planning a holiday in New York last October. The travel insurance company I was recommended by the travel agent have a medical team and I told her I have RA and Hashimototos - she said back to me "so arthritis". I responded no not arthritis - RA is an autoimmune disease and I have a lot of autoimmune things happening under this umbrella so it was important that it was covered just in case i needed medical care while there. She was really rude and said RA is not listed as an autoimmune disease on the company's list and they would not be able to give me cover if I have autoimmunity? I was so angry! Went elsewhere and stopped searching when I found Staysure do have RA listed as an autoimmune disease - hurray!

    I get upset when people assume RA is same as OA - although I do have both and don't agree with my GP that this is just an ageing thing because my younger sister has it very aggressively in her knee pre-menopausally. I know of people your age with all types of Arthritis too.

    I don't call it RD like others here because somehow the term disease suggests it is just one disease - and for many of us I know it's a whole gamut of diseases. Just "Rheumatoid" seems more apt to me. I think that campaigning is the best way of getting across that the arthritis side of things is just one small (but awful) aspect. I played my joint problems down with my rheumy the other day and emphasised my nose sores/ bleeds, dry eyes, GI issues, chest infection, small fiber neuropathy and fatigue so that he couldn't just dismiss it all as wear and tear. My physio says I don't actually have that much arthritis - apart from normal ageing wear and tear in my neck and lower back and fingers. She says most of my problems seem to be in my tendons and connective tissue these days. Not sure about my jaw and it's much easier to tell people I can't fully open my mouth and am in pain there because of arthritis - then they at least nod and say "ouch".

    If I can be bothered I tell people I have a multisystem autoimmune disease these days rather than RA. I know this covers Lupus, Sjogren's and Vasculitis and I strongly believe I have shades of these even if they are all sero-negative to date.


  • Simply put as one who suffers both if anyone asks I say I have RD & OA, gets the message across if questioned. Both are Rheumatic Diseases affecting my joints & body in different ways.

    My unmedicated OA pain is equally as bad as unmedicated RD pain, my OA pain relief is much stronger than my controlled RD pain relief. So believe me it's no bed of roses if OA is left unmedicated. I had a good 6 months of it & my Rheumy noticed the difference in me between visits once the pain was under control.

    Rheumatic Disorders, an umbrella term for over 200 diseases, all have the ability to cause serious joint problems & associated conditions so whatever one wishes to call it they have the capability to affect our life not the incognizant so maybe it's better to put our energy into keeping well & not stress over a word.

    It's unfortunate that the two both have arthritis in their names but as long as we understand what our particular disease has the capability to do left untreated then I think all that matters is that we're aware of it & recognise any changes.

  • And not only is inflammatory arthritis confused with OA but even rheumys seem all too willing sometimes to ignore the fact that inflammatory arthritis causes OA. So many folk say "I have RD .... oh and OA too" and often I suspect that it is no coincidence. Once you have OA in a joint, some rheumys dismiss it as incidental wear and tear when it clearly isn't.

    OA is no picnic .... it's a matter of degree mostly I suppose. But the fact that most people will have it to a certain extent as they age makes it the perfect get out clause for anyone who wants to downplay the severity of inflammatory arthritis by lumping them together or making out that damaged joints are no biggie if the damage is 'just' OA.

    I think I'm having a bit of a rant now .... so I'll keep going! The other prob (just one, lol!) with having a systemic disease is that some of the commonest systemic symptoms are just more severe, persistent and random versions of what normal life does to people. Like fatigue for example. So only the wondrous few actually understand. They do exist though ....

  • Hello all. I hope everyone is staying a well as they can.

    Seems to me that the medical profession itself needs to address this lack of knowledge and/or understanding about this disease.

    A good start might be to use the title Rheumatoid Syndrome? Removing 'arthritis' from the title completely might stop the confusion? Syndrome would encompass the huge variety of symptoms/diseases associated with this relentless health problem. Just my thoughts.

    Take care all.


  • Liking that linbin , great suggestion

  • Hello Crashdoll, this is a subject that comes up quite often. It is an issue that really irritates RD sufferers to no end. We have all had occasions where our disease is compared to 'Granny's sore knee'. Now before I go any further I'm not for one minute saying that OA isn't a very painful condition and some suffer greatly from it. The point you correctly made is that it is not in anyway the same as RD and really should be renamed to distinguish it from OA.

    I think it comes down to money at the end of the day (the cost of printing, programmes, education etc, etc). Also it has been said that there are so many different types of RD too to put it under one umbrella term.

    My rheumy nurse, whom I have to say is worth her weight in gold, referes to my 'arthritis'.....cracks me up! As you can see there are a few replies to your post, I haven't read them yet but I could nearly tell you what they say. It is a bone of contention with many RD sufferers. I used to ignore it when people refered to my having arthritis but now I swallow hard and try to explain that it is not the some. Some people just look at me with a blank stare but many others have said that they never knew that there was such a, education, education......thats the way to go. I have to admit there are other times when I so sick of the sound of my own voice that I just don't bother, it all bepends on just how I'm feeling on the day.

    One thing we can all do as sufferers is to completely drop the RA title. Some people will ask what Rheumatiod Disease is and then you have an opening. Otheres will just ignore will know when you have an opening to re-educate.

    Good luck to you anyhow and hope you are well. Jean

  • Hi crashdoll,

    It is very frustrating that the term 'arthritis' is generally misunderstood and we certainly struggle to get the national press to use the full disease name to make it clearer that RA is not osteo. There's over 200 types of arthritis so it doesn't help lumping them all under one term! As people have said there is lots of debate about whether to change the name but I'm not sure this is likely to happen. In the meantime we just try our best to change people's perception of the word 'arthritis'. I think one day we'll finally get there!

    Our RA Awareness Week will be taking place again from 15-21st June this year so I'll keep you posted on how you can help us raise awareness!

    Best wishes,

    Ruth Grosart

    NRAS Digital Media Manager & HU Admin

  • Ruth, at my appointment last month my Rheumy & I were discussing this subject, I noticed she was saying RD (I'd said it at the previous appointment & said she thought it was a good idea). She explained her team all use the term now & that there was to be a big push to educate, it's to be something similar to the Act F.A.S.T. Stroke campaign. I'm not sure if it's to be done by the NHS or when it will be, she didn't say, but I've not seen it yet. I wondered if you all at NRAS had been informed or included in it?

  • Well there's an Public Health England awareness campaign which was being piloted in the Nottingham area very recently which may be what she was referring to?

    We are waiting to hear how effective it was and hope it may be rolled out nationally... Time will tell!

  • Thanks for replying Ruth, & also for the link. Off for a lie down now but will read it later.

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