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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Everyone Sorry I haven't been posting much recently. I have had my grandchildren here most of the summer holidays. We flew back to Gibraltar with them earlier this month and came back middle of last week to a quite bungalow and me having empty arms with no little people to kiss and cuddle[.sad] I know that we have talked at great lengths on here how RA should be renamed and how most people just don't understand what an awful illness it is and I have found something on an American web site RA Warrior http://rawarrior.com/ that I am sure you will want to read. The lady that does the site put it on there on the 31st August, if you go on her site you will be able to read more about it and her followers replies. There is also lots of other interesting things for us to read to. The link that I am referring to is one that an American doctor wrote http://www.the-rheumatol...tity_Crisis_for_RA.html
It's abit long but well worth the read!!!! Love Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I have just read the article and speaking as someone who knew virtually nothing about RA just a few months ago I have to say I wholly agree with the arguments made here. I too had a vague concept of what 'arthritis' was and did not understand the severity of the condition. I think it is this misunderstanding in the public's conception of RA that presents us with so many challenges to add to the difficulties we are already facing. If people were more aware of the realities of this illness we would surely receive more support at work, more funding might be invested in services and research and people who need them would gain better access to benefits. I'd be interested in reflections from other forum members on the contents of this article. Thanks for posting it Paula.
Best wishes and hope you are all relatively well.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thanks for showing us this Paula. I totally agree with Naomi's comments, and the rheumatologist who wrote this article has obviously been feeling the same way we feel. Maybe this will lead to more public awareness of autoimmune disorders BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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An interesting article. I think most people only ever hear the word "arthritis," whatever precedes it; consequently it would be better to substitute another word there. Don`t ask me what, as we`ve had this discussion before! Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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It was a very good article, but I don't like the term rheumatic arthritis any more than rheumatoid, it sounds too much like rheumatism, which is associated with old age!
A lot of consultants are now calling it rheumatoid disease , I quite like that.
At least it's not just us who have RA who are now saying it should be called something else , it's good to have someone campaigning on our behalf on this.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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I always call it rheumatoid disease now and when anyone says "is that arthritis?" I just say that arthritis is only one symptom of the disease and it's quite a complicated illness. They then want to know more and I am happy to explain as this raises awareness. People will then pass on information to others.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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thanks for the info Paula,
i will need to read it again when i have more time.
we have had the discussion a while about about " Arthritis " as in a few aches and pain's in my knee or hands is giving me jip.
so like Doreen and Sheila i will refer to it as Rheumatoid Disease, i haven't had the need to use the term yet.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Very interseting - I think the author has grasped how exasperated we sufferers are!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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When asked I just say I have an auto immune disease which affects my joints, and has other symptoms BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I think that the name Rheumatoid Arthritis gives people the wrong impression of what RA is really all about. The first time I saw my specialist nurse she told me that if I told people what I had got they would hear one word and one word only that word...... 'Arthritis'. I must confess though that before I was diagnosed with it I would of thought that it was OA with a bit of muscle ache thrown in. Before I was diagnosed if I saw someone who sometimes used a stick and then other days they didn't I would of thought that they were only using it for sympathy or visits to the doctors. Oh how uneducated I was!!!!!
The first time that I told someone other than family and close friends what I had the 'Oh, I've got that in my knee, I just take the painkillers and get on with it'. I tried to explain to her what it was and she looked at me as if I was a Drama Queen. That really put me off telling people what was what. But I do think that we should try to educated people about it. I mean who would ever believe that you would take chemo for arthritis? Mind you it took me several months after I started taking MTX before I told my husband what it was, so I'm not practicing what I preach.
Paula
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Paula - good to have you back I HAVE MISSED YOU!!!!
I think we all look at RA in different ways. It has never bothered me one bit what people outside the family think it is and to be honest, I have enough stress in my life coping with RA without worrying about the name however right or wrong that maybe. I'm not trying to be difficult here, it's just that we're all so different and I respect everyones' views.
Love Jeanxxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Hi Everyone!
We have owned a Newsagents in a village for 5 years but my husband and his mum ran it for 3.5 years without me as I was working full time. Since I started on the "hard drugs" I have given up my full time position to work mornings in the shop. Dealing with customers from 4years old up to 93. You get to know your customers (some of them very well) and they too get to know you. When I first wore my splint I was asked so many times why I was wearing it and why couldnt I move I'd say "I have Rheumatoid Arthritis" they say things like "oh my great Aunt has that and shes fine" or "Ive got that in my little finger" or "You are too young to have that - its a old ladies disease". I agree people only hear Arthritis. They dont understand the Rheumatoid bit. Now I have stopped working customers ask my husband about me and he tells them I'm ok!!!
I used to deliver to a Housing Association for mature people! and 1 lady had had RA for years and when she found out I had it she cried because she could sympathise with me and it also meant that when I went over we could have a chat because no one knows the pain we go through every day.
I completely agree that more needs to be done to make people aware and that Arthritis is taken away from the name BUT I quite like the idea of re naming it Rheumatoid Disease BUT will people still this of as Rheumatic Fever. People only hear 1 word so I think the way forward is to rename it a one word name! 'CR*P' would be good. It sums up how we feel! Only joking! Then again maybe not, doesnt quite sound right in a sentence......
AAAArrrrggggHHHHH - Arthritis Rheumatoid Gosh it Hurts
Could be fun making up a name!
Lxx
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Great idea Louise - Aaaarrrgggghhhh sounds great. At least we can still joke about it.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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What about 'autoimmune arthritis' as a new name for RA. I think this would clearly distinguish it from OA. However it still includes the word arthritis and, for me anyway, the joint symptoms are only one part of the whole problem. I have also had skin symptoms, swallowing problems, Raynaud's phenomenon, headaches, pins and needles/numbness, malaise, fatigue, severe muscle weakness, breathlessness, eyeball pain and ectopic heartbeat (sorry to do on and on...). I would want to convey how diverse the symptoms can be if we were to come up with a new name. I really that the language we use to describe things are important because they have real consequences in the world. We and our families are the ones who have to suffer the consequences of this awful disease and we should recognise our power to (at least attempt) to alter the language used to describe it. OK rant over. It's probably the steroids making me so full of energy and new ideas.
By the way the Warrior site that sparked this thread is very interesting indeed and well worth a browse.
Best wishes to all from Naomi.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I think the RA Warrior site is good Naomi, I could get lost in there for hours, lots of useful information for us. You do have to be careful when on the internet reading up on things about RA because there is alot of useless and untrue information out there, but I do think that this one is OK. Also if you are on Facebook there is RA Chicks, just put it in the search box and you will find it. It's obviously from America but people ask questions and others answer them.
Paula x
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2011
Posts: 38
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Hi Paula
Thank you for putting the article on the site for us to read -I have just read it - it was encouraging to read that there is a professional who really understands how we feel but just highlights the inadequacy of those who make decisions regarding our medical support - during my last appointment for my feet - I was informed by the consultant (an extremely nice man who has looked after me regarding my problems with my feet) that he would see me again in 6 months unless I had a problem prior to the appointment when I could contact him.
He informed me that should I not have any progressive problems within that time it appears the the Welsh Assembly Government has issued a directive to the medical profession that people like me should be removed from the medical list (only cancer patients or patients with heart problems can remain on the medical lists irrespective of how their condition is)
Frightening isn't it - RA is a chronic illness with no cure but seems to be swept under the carpet by the "powers that be." Surely preventative medical care is better than leaving joints to deteriorate so badly that it would require surgical intervention?
I shall be contacting the Welsh Assembly Government under the "Freedom of Information Act" where I shall be requesting a copy of the directive which states that patients like myself should be removed from the patient list should we not have any deterioration in our condition between our six monthly appontments. Down to finances I think !!!!!
As you can see I live in Wales !!!
Jane
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Rank: Member
Groups: Registered
Joined: 12/7/2009
Posts: 21
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It is not surprising that many on the forum think the word Rheumatoid Arthritis doesn’t tell the full story of what is a debilitating disease. Say to almost everyone you meet you have rheumatoid arthritis and they and their dog know someone with arthritis. The fact that there are around 200 versions, some far worse than others I sometimes wonder how many have been correctly diagnosed. I for one believed I had RA for five years before my new rheumatologist told me checks indicated I had a particularly virulent form Adult Stills Disease.
It is said that the most people suffer from Osteoarthritis (wear and tear arthritis). While this can be extremely painful, it normally only affects a few joints. Nowdays these can often be repaired or replaced. The next largest number are those suffering from Rheumatoid Arthritis, a disease which works its way through all joints. There is no cure but happily a number of drugs can control the problem and sometimes help you go into remission. Then there are the other 198 versions, how many of those are serious and how many virtually nothing.
Sadly it is for the above reason and the high cost of many treatments the health authority don’t want RA sufferers to get their medicine on free prescriptions. Cancer, heart and thyroid patients get it but I am sure the thyroid sufferers only get it because of the low cost of Thyroxine. Why they should our drugs cost so much I don’t know as most arthritis drugs researched by drug companies get much of their funding from charities such as the Arthritis Research Campaign.
Finally, with everyone reacting differently to the many drugs on the market, unless one is lucky, since most take several weeks to have any affect, by the time you find the right one for you the damage has already begun.
Sorry to be the messenger of doom but perhaps we should all keep up the pressure on our local MP after all they are always telling the press they listen but to what.
Clive
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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You're not the messenger of doom at all, Clive - just telling it how it is.
I couldn't agree more that we should all lobby our MP's. As well as doing this as individuals, get together with your local NRAS support group and invite your local MP to a meeting to ask him to join the RA special interest group and support our cause. We won't get anywhere until WE, the patients start making waves.
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