RA to be changed to RAD - your thoughts?

[Deleted User]

I think a change of name is very much needed. RAD somehow relates better to the condition we have. And maybe it would help people to understand it better as not many do. I am tired of hearing 'I thought only old people get it' or 'I have arthritis, too. My knee hurt badly the other night'... Not one person that I met (apart from doctors) and talked to about RA knew that it is an autoimmune disease and not a random pain in the knee or shoulder.
To be honest though, I would like to get rid of the word 'rheumatoid', too. It just is too close to word 'rheumatism', which many people use instead of arthritis (as in joint pains that affect the elderly).

Mat48

Does your niece have Rheumatoid Vasculitis I wonder Airwave? If so it is a serious complication of rheumatoid arthritis rather than just another form of arther as you describe? Once again this exemplifies why it might be better if RA were known as RAD - Rheumatoid Autoimmune Disease - because that encompasses the word autoimmune and disease and rheumatoid is also an important element of this condition.

I don't see why the arthritis needs to be in the title of this disease when it's only one aspect to the disease - which is fundamentally different to Osteoarthritis. Many with RA, PA etc also suffer from OA as a secondary symptom of their disease so of course arthritis is a very good umbrella title to cover all these diseases and no one is suggesting otherwise. Nor do I get why this should divert funding away from the big Arthritis charities who, as I've already said, do a brilliant job supporting, researching and raising awareness about these diseases already. There already exist smaller charities which cater more for the individual diseases and it wouldn't be a huge undertaking for NRAS to become NRADS? They all work hard together anyway and we are envied a lot by people in the States who would love these kind of umbrella organisations - although they have the American College for Rheumatology (no mention of Arther there please notice!) and of course RA Warrior herself - soon to be RAD Warrior if she and her supporters get their way!

As I said earlier in this thread it's a bit like the hard of hearing versus profoundly deaf debate. People with hearing loss should still be able to turn to a big charity that supports deaf people - but it seems fundamental to me that these charities focus on the people who are most disadvantaged - which in the case of Arthritis is often not the people who only have arthritic problems but rather people with many secondary conditions due to the autoimmune and systemic nature of their condition? Mat x

Airwave!

Good luck to you all if thats the way you want things to go. I do feel that you can't guarantee the charities the same income if you divide their support? Smaller charities cannot support research to the same degree or withstand such large variations in their income due to economic fluctuations affecting such things as interest rates.

Mat48

Smaller dedicated charities do exist and are thriving already in the UK Airwave? It makes no difference to AR or AC which are far larger and fulfil a different function. The great thing about small charities is that they can have more direct contact with their members and are often sufferers of the conditions they are representing. In fact I believe the examples I'm thinking of work very well together already and I for one use both, am a member of both, and sure many others are too even if they don't participate on both forums. Not sure where on earth you get the idea that this name change would make any difference to charity support or funding?

Colin1

Hello Mat48
An interesting topic I did ask what should we call PA some time ago. I’m one of those people who seem to be stuck in the past in most things. Like most people I dislike most forms of change unless of course I can see its for the better. Why should a name change make a difference to public attitude. Most forms of Arthritis have been with us since the year dot and some forms of arthritis not clearly understood by all the medical profession, and moreso the type of medications we take.
Its educating the public to understand or at least have a form of understanding of the effects that some forms of Arthritis have on us. I suffer with both PA and RA I am one of those people you spoke about where the RA can attack organs muscles and sinews. Apart from seeing members of my family suffer the pain of arthritis and the deformity of my sister with RA I knew nothing of arthritis apart from the name. I have never met one none medical person that understands the different forms of Arthritis or indeed anyone who understands RA or PA. To the
General public arthritis is arthritis. I don’t believe we can change that, and its not because of the lack of trying to promote Arthritis and give people a better understanding. I believe that the public are just not interested, its not until you have something like this that you try to find out what its all about. I have found when I tell people I have an auto immune disease they say what’s that. If I say I have arthritis they say ok. If you where to go to the local market and ask people what is LUPUS I would expect a very small percentage of people would know the answer. I expect that on the many times I have to go to A&E doctors should understand the drugs I take but they don’t. Many GPs and A&E doctors don’t even understand what anti TNF drugs are How do you get to educate the public when doctors don’t even know.
When you say a lot of RA suffers in the UK seem to agree a name change would be a good idea What is A LOT has some sort of survey been done, do we assume a high percentage of RA suffers have computers. Looking at the post in this forum it would seem I’m the odd one out. Perhaps it could make a difference perhaps it will make no difference at all. The public hardly understand now, do we just educate them to understand RA / RAD or all forms of Arthritis and autoimmune disease. I think if they haven’t got it they wont be interested.You try asking this question to none suffers and they wont even know what your talking about and they are the people we need to educate or at least give them an understanding of what people like us suffer. I think it no matter what tag or label you give this disease it will not make a difference to those who have it as we already know what we have. I also believe that some people who have been diagnosed with Oa/ Pa/Ra and other forms of arthritis don’t themselves understand. It is people like us who have computers who gain the upper hand. You only need to examine some of the questions on the site to see there is a lack of understanding by some people. Specialists who have little time to spend with new patients are no help but specialist nurses can help lots here if people use the facility. I believe that in the last 20 years health pros have gained a lot more insight into the field of rheumatology. It is the charitable organisations who bring it to the public and sites like the one we are using now give us the education we so badly need when first diagnosed. Anyway I get the feeling I’m going on a bit here so ill bring it to a close. I believe that a name change will not be of any benefit. Its educating the public that matters and the average person doesn’t want to know. The only reason I want to know is I have the disease if I never had it I would still be ignorant to it. Please excuse mistakes its really hard to concentrate today and I don’t seem to be able to find the words. oh yes I also suffer with Fibromalgia and at the moment I have the fibro fog had it for days it doesen’t want to go.
Colin

Mat48

Thank-you Colin but sorry you have to cope with RA, PA and Fibro. When I started the thread I didnt really have views one way or the other. Now I think I'm marginally in favour of a name change but doubt it will ever happen and wouldn't put huge amounts of energy into bringing such a chane about.

I suppose I wanted to see how aware people on this forum were as to how greatly the various forms of Arther differ. For me the arthritis aspect is the least of my worries - but I do spend a lot of time exercising and having physio in effort to not allow the RA to catch hold and start burning. This is early RA and I'm fortunate enough to have an enquiring nature so I've spent the past year researching the many types of arthritis and was startled, as many are, to find out how many different diseases the term arthritis has to encompass.

I was made aware of this debate on NRAS - another wonderfully educating and supportive charity - and also via RA Warrior in the US who is a powerful force in the International world of RA. I just wanted to see what people here thought - and where better to find out than on the AC site where people with so many different arthritic diseases come to raise questions and support each other in the UK.

The advantage of being on a smaller site though is that there are members from all over the world so I've learnt more from there about how treatments and healthcare work in the States for instance - where AC members are largely preoccupied with the NHS which is good for me too but living on the outskirts of the UK as I do it's also interesting to learn more about how this disease, RA, is treated and regarded elsewhere.

I am struck by how obsessed my own small place is with funding and supporting cancer where there is so little support for those with the more aggressive forms of arthritis. I hear people on my local radio daily talking about how they felt when diagnosed with cancer - but to me getting diagnosed with having a disease such as RA is just as daunting but also far more isolating i believe, becsuse as we all say the term RA or arthritis diesnt engender the shock and sympathy that saying cancer does. I think it should. So sufferers who can use the web really do turn to sites like this one for support and friendship even - in the commonality of suffering from one or more of these rheumatic or arthritic diseases and in the face of huge ignorance. If a diagnosis of cancer can bring such fear, understanding and sympathy then why on earth can't a diagnosis of RA or PA or AS or Lupus - could it be the term Arthritis makes this less likely by our association with something slow and disabling that will affect most of us to an extent if we live to a ripe old age? I think so - but wouldn't stake my life on it?! Take care all. Mat x

Colin1

When i was first diagnosed My rheumy told me i have verry agressive RA and PA, I sighed with relief because i thought i had something worse i then said thank god i thought it was something bad.
He looked at me over the rim of his glasses and said Mr Colin it doesent get much worse than this You have a form of athritis that is so agressive you will be in a wheel chai befor the year is out. But i recieved no education on the disease but i recieved education on the medications i was to recieve.
I found the answers i need on the WWW and three years ago found AC this site and the people on it are great. There issuch a wide variety of people and conditions that it is indeed a wealth of information.
Thak you and stay Well
Colin

dreamdaisy

This has been a very interesting thread indeed and thanks for starting it, Mat48. I agree with much of what Colin had to say - people don't care about stuff until it affects them and I reckon that is true in all areas of life. I don't drop litter as I realise it makes the environment unpleasant for others, others do however as they care not for any one else. Dyslexia doesn't exist until the nay-sayers find someone in their family is affected, then their tune tends to change. Nobody knows everything about everything, we all have our take on matters whether we know anything about it or not.

I suppose that because we are aware of the effect of this range of diseases on our lives we expect others to be just as aware but I really don't understand why this is, and I don't expect them to care either. My arthritis has given me an insight on life I wish I didn't have but I do and I have to get on with it. If I am asked serious questions then I answer them as fully as I can, some people are genuinely interested but if it's just a social enquiry then I don't bother with the detail. Cancer will always grab the headlines as that has a drama that arthritis lacks. People think they know what cancer is in that people go bald, perhaps lose body parts, the meds are nasty and they may die. People think they know what arthritis is - it's for the elderly and you use a stick. If you're dyslexic you can't read. These are the popular perceptions and all are mistaken to some degree.

Would the general public want to be made aware in more depth about arthritis? I honestly don't know, even the five-a-day message has not reached some after years of advertising etc. People perhaps don't have the room in their lives for more information about things that don't affect them, they probably wouldn't make the time and I think that is only human nature. DD

Mat48

While I do to a degree defer to both of your infinitely greater wisdom (born of experience undoubtedly)on this matter I also find myself still persuaded towards name change when I think of much younger sufferers of the forms of arthritis. I think it must be immeasurably daunting and distressing to have one of these diseases as a young person or as a young parent because of the age associations that go with these diseases and I think your acceptance/ resignation rather let's them down.

For me I'm really not bothered because I'm happy to explain RA if I have to but then I am not sufficiently disabled for this to be an issue mostly and if I can't get a door open or a bottle lid off or chop something on my plate then I'll be as resourceful as required to be. But when people say "your too young for arthritis?!" I feel a big wince coming on as my thoughts drift to students stopped in their tracks by overnight descent of RA,PA or AS or Lupus. I know dreadful things happen and I've had my share but the loneliness of having to cope with an aggressive form of this disease in amongst these levels of ignorance really upsets me. I think even if it makes a few more people understand how awful this must be because of the focus being on the title Rheumatoid Autoimmune Disease it would be worth it.

I know that if I had heard this description coming from someone in connection with their young selves or from a distraught parent I'd have had a lot more curiosity and compassion even before I had RA myself. I know you are right that people only hear what they want to hear or when it is relevant to them but not everyone is this way - many younger people veer towards the caring professions and would be receptive to the idea that these diseases can hit kids and younger people so they can look out for it themselves or in relation to their peers. I'm not talking about waking up the unwilling and unreceptive majority but just about those, often older people, who challenge young people with blue disabled badges on their cars or who criticise a young person with bad RA who can only travel if the use the disabled sets on public transport. I think this is particularly pertinent in the current economic climate where welfare laws are being changed and there is an obsession with benefit fraudsters etc. A name change might just help stop these ignorant people a little in their tracks I believe. It will never happen of course but it's been interesting reading how the thread has evolved at least. Mat x

Mat48

Ps sorry about all the spelling mistakes etc - I wrote this on my smartphone while out and now am unable to edit it!

scattered

I don't often post but I've been following this thread with interest and I thought I'd put a few words down.

I'm 24. I was just 19 when I was diagnosed and I'd been having symptoms for one sort or another for about 2 years prior to that. I still get medical professionals who tell me that I'm 'too young' to have RA and a lot of people just don't understand the implications of having the disease, nor do I expect them to. However, I don't think changing the name to RAD would change that, or people's perceptions. The most common, visible symptom of RA is pain, swelling, heat and deformity of the joints. No matter what you call the overall disease, you are still going to have to say to people I have arthritis. That is the medical term for what is described above. There is no getting away from it. I have quite a lot of systemic involvment with my RA and yes, it's hard trying to explain to people that a disease which primarily attacks the joints can also attack any other part of the body it chooses but by changing the name to RAD you are still going to have to go through the explanations of what each word means and what that means for you as a person.

I wish more understood what RA is and what having RA means, but I agree with DD: until you are actually diagnosed yourself, you are never going to give it much thought. You made me give a wry chuckle, Mat48, when you were saying about people on public transport: I don't drive so I'm relient on buses. If I'm having an alright day, and I'm without my stick I will move seats so an elderly, disabled or pregnant passenger can sit down. Some days though I get on with my stick and, because of my age, no-one will give me a seat. I've had to stand, even if I'm with my stick I get the evil eye for being sat down. I wish I had a big notice on forehead that said what was wrong. I have a disabled persons bus pass and all the bus driver and conductors accept this and don't question me if I'm sat in priority seats, but the other passengers are a very different story.

Sorry, I've rambled!

Mat48

Hi Scattered good to hear from you. I take everything you are saying on board but I just wonder whether the inclusion of the word "disease" would help when it came to people who just needed something to grab hold of and take you more seriously with. Of course arthritis is the overarching symptom that binds all these diseases together I completely agree - but even the nature of the arthritis is different to those who have OA because, as you point out it comes with swelling and heat and also for many sufferers that aspect is not as big as the systemic symptoms.

I am really lucky because I have it relatively mildly so far and hopefully the aggressive medication I'm on and all the exercise I am able to do will keep it that way. But since I've had it I've developed Raynaud's and dry eyes and I bleed more from my gums, my nose and other cuts and scrapes and these things are secondary to the RA and are not explained by the term arthritis - which I only really have in my hands and wrists daily.

But if you looked people in the eye and said "I have a disease that is chronic, incurable and systemic and am being treated by a drug used in chemo and that is why I have to sit down today - because I cannot stand up easilly" they would probably stop eyeballing you - whereas if you had a great big label on your forehead saying "I have Rheumatoid Arthritis" they would still say "you are too young for that arthritis"!? And that's why I think it might make life a bit easier for people in your situation but I may well be wrong. I do know DD and Airwave and yourself are all right to point out that until it affects us or those we love and care for we don't think much about it.

But really it's not my argument anyway - I'm middle-aged, drive or walk everywhere and if and when I can't my husband will help me out or we will move somewhere a bit flatter with better public transport and probably by that time no one will be saying "you're too young to have arthritis" anyhow! :roll:

stickywicket

My first thought on this topic was 'a weed by any other name.....'

Further thinking resulted in my agreeing with Colin and DD. None of us really understands, or has any incentive to understand, any illness or disease until it hits us firmly amidships. What do any of us arthritics know about Muscular Dystrophy, Multiple Sclerosis, Motor Neuron Disease?

As someone with a long history of RA, when people used to ask me wasn't I too young to have arthritis (It doesn't happen anymore ), I took it as an opportunity to enlighten them and tell them of the toddlers who got it. (Or, on a bad day, I'd just say "Obviously not" :roll: ).

I don't really see how this RAD umbrella term would work in practice as all our variations are different. Would some have Psoriatic RAD, others Lupus RAD, JIARAD etc etc ? Mine's actually Still's Disease, the juvenile form of RA, so I guess it'd be Stills RAD. I make sure I tell docs that, because there's more can go wrong with Stills, but a simple RAD doesn't give any indication of that.

I guess, after all my thoughts, I still feel that a weed by any other name.........

Colin1

It is indeed a very interesting thread, I must admit that I have told people I have an auto immune disease and also Rheumatoid disease. People haven’t got a clue as to what these mean. The word arthritis does cunger up all sorts of mental pictures of older people with sticks and all sorts of aids. We have what I can only describe as a hidden illness DD and scattered and you Matt must have had the day from hell yet to other people you don’t look sick, Hell came calling you feel like your about to die and your best mate drops in and says Hi Colin you look well.
You want to kill him or explain how ill you are but you say yes I’m fine thanks.
By the way have you all read the spoon theory its a good read if you haven’t. It’s a bit like the sick old woman and what do you see people don’t see what’s wrong with us. The other problem we have is it doesent matter how sick we are where going to do it anyway even if it does make us feel worse. We can’t help it because most of us by choice have in the past been able to help ourselves or put it right we can fix it. With this baby all we can do is fight it and resign to the fact this time we can’t fix it. One of you mentioned the loneliness of this disease and indeed throughout this disease we really do feel so alone at times. Despite the fact we have people who love and care for us RA can be a very lonely place shrouded in darkness. The uncertainty of the future and the toll it takes on you and your loved ones.
I wonder Mat why you have taken up the fight, what was it that prompted you and how far have you gone with this. Dispite my negative opinions regarding a change of name to RAD any form of Education for the disease is better than none. If it brings it to the fore all the better, Perhaps if kids where taught about it at school and I don’t mean weeks and weeks of it just one lesson during a term. I often get things like, our Marys like you she has a really sore elbow. I want to tell them but they don’t hang round long enough by the time you have explained the different types of blood cells you have they’ve normally gone. I like you feel so sorry for the young people and children who suffer, When I see young mums on here with a couple of kids my heart goes out to them. I fought so hard to keep my job but had no choice but to retire. Between work not wanting me and the Rheumy refusing to treat me if I continued to work I had to give in. Three years on I could not work but except it now. Long term medication also takes its toll, and that too has an effect on people’s lives. My wife says I have never been normal but I would give anything to have a day where I just felt normal and do normal things. I wish my GP understood how it affects our lives. People just don’t want to know and why should they. Think ill take up rambling
Colin

Mat48

Well Colin I think I've taken it up partly because I like a good debate and I come from a family of thinkers who have now died but I'm still thinking and imagining and communicating with them too in my head. I've never really been of the mindset that a disease or disability is just someone else's problem - if someone mentions having a disease to me then I want to learn more about it - am touched from the moment it is mentioned.

I grew up with people with many disabilities visiting our home and was always brought up to question and imagine yourself in other's shoes so expect other to do the same for me. That's called Society - and I don't mean Cameron's BS version - just that we should all care about people because what goes around may well come around - if not to ourselves then to people we love. Someone once mentioned Lyme disease to me and I looked it up and learnt more about it. So when my cousin told me she had it a few months ago I could relate and react appropriately.

For another example I have thought about MS often despite only knowing one person with it slightly - and always would ask someone to tell me about it if I felt they wanted to explain it to me in more depth. If I'm like this why assume everyone else isn't? But we are all prejudiced in one way or another so I also know that calling what I have arthritis doesn't feel like an accurate description of what is happening to me presently.

Oh dear Stickywicket what does this mean - that it should just be called the Pernicious Weed instead of RA/ PA/ Stills/ Lupas/ AS etc? "I would lift that box up for you old chap but unfortunately I have a pernicious weed that is taking over my joints, soft tissue, blood etc and won't stop gnawing at me until I stop living" - is that what you mean? If so it's a clever name and descriptive too - if not you have lost me completely but that's not hard to be honest. Brain shot from thinking too hard about what's happening to me and worrying what the drug I'm on (MTX) is doing and whether it is working or not. The only thing I feel I can do at this relatively early stage is try my level best to prevent the pernicious weed getting hold of my joints - and that's a full time job all by itself!

Still's Disease is horrid - I know two people with it - but then all these diseases are dreadful for some and just about bearable for others (to date that includes me). At least it's called Still's Disease which lets people know that it is a disease - no messing. I think I will just call mine same as my GP calls it - "Rheumatoid Disease" - until the arther starts deforming my joints - hands already starting to do their own thing a little re ulnar drifting. So when I need to add in the arther part I can always do so. It's a free county and we don't need the medical establishment or anyone else to tell us how to describe our own diseases do we? Mat xx

dreamdaisy

I've been thinking about this and one conclusion I have reached is that I intensely dislike the word 'disease'. To me it smacks of decay, rot, rats in sewers, plague. On the other hand I actually like the word 'arthritis', it's crisp and clear.

My arthritis does not define me, it's a condition I have to live with, I am sure I was put on this earth to be a constant source of income for the drugs manufacturers and I have played my part well. I actually don't give a damn if people don't understand its impact, or what it means, or why it's happened, but it has given me some empathy with others who have life-changing conditions and I think that is a positive. I freely admit I envy the healthy, those who take it all for granted and who blithely assume that their bodies will always be the wonderful things they have known throughout their lives and I chuckle at their outrage when it all goes mammaries-up. My friends of the past twenty-five years or so are now complaining of aches and pains, twinges here and there and more than once I have recently heard 'Now I know what it's been like for you.' No, you bloody don't and thank your lucky stars for that.

Now, the society issue. Living where you do perhaps it's easier to be concerned about the welfare of people around you, but in the urban conurbations that most of us inhabit I reckon it's an unrealistic notion. There are seven hundred houses in my street alone, in the town overall it must be at least a hundred thousand, and Ipswich is not that big a place. Sixteen thousand patients are registered at my GPs, and their practice is one of about twenty in the town. I would regard myself as a responsible citizen in that I don't litter, I don't drink in the street, I don't key cars, I don't have rows at three in the morning on the pavement outside my neighbours', so as far as I am concerned I am doing my bit for local society and its welfare. The drunks and the druggies (who are a constant presence around here) well, I am sure I should be concerned about them and their problems but actually I don't give a damn as I am too busy fighting my life and its difficulties. I have my syringes which I dispose of as I should, they leave theirs lying around, such is their concern for others. Society means social responsibility but I think that value that has gone out of the window. DD

Mat48

Shame you feel like that DD but I can understand it entirely of course. We chose to live in a small community 24 years ago as Londoners by origin. I don't mean we have to give a monkey's about the druggies and key wotsitis and the binge-drinkers etc - no one can be that big or charitable not even the saints - if you believe in them to begin with. I just mean that I've been brought up to enquire and if someone tells me they have a disease or a chronic condition I generally do ask what the implications of that are - both day-to-day and the longer term - well if I sense they are happy to explain that is.

But I have to laugh at myself because today I was at an exhibition preview this morning and someone asked my if I'd hurt my hand because I have my physio wrist splint on (it's the most discreet and knuckle avoiding one but unfortunately I only have one because she couldn't find the partner!) and I contemplated saying "I have rheumatoid disease" or just saying it was sore but ended up saying "I have arthritis and my hands are bad just now" which flies completely in the face of everything I've been saying here! My son amended this to "actually it's rheumatoid arthritis" but despite being an educated woman in her late 50s with a GP daughter she did not react at all or say "oh i'm sorry about that" or indicate that this was anything beyond just a sore hand. But no matter at all since she's a prospective employer and it's probably best that she doesn't appear to have a clue that my life has been completely turned upside down by this thing! Mat x

Mat48

Re Disease V Arther - depending on who I'm telling and why then on the whole I prefer disease because it suggests something potentially curable or at least treatable but also systemic, whereas arther suggests something purely mechanical and untreatable, brittle and brash and worst of all old and inevitable. Maybe when and if I gets as big a hold on me as it has now on you DD I will replace disease with arther for similar reasons. Judging by my performance today I already have!? Mat x

dreamdaisy

Strewth, word-for-word you sound like my mum, I express an opinion and what comes back? 'It's a shame you feel like that.' , 'Faulty reasoning as usual, you just don't think things through.' and my favourite, 'As usual, daughter, you are wrong.' I'm learning that it's easier not to say what I think.

Over the years I have found that, when in social situations, those who have genuine health issues don't normally discuss them that much as they dominate life enough. It's those who like to think they have something wrong who are far more tiresome and can bore for England on their latest set of symptoms. DD

suzygirl

Over the years I have found that, when in social situations, those who have genuine health issues don't normally discuss them that much as they dominate life enough. It's those who like to think they have something wrong who are far more tiresome and can bore for England on their latest set of symptoms. DD[/quote]


I wholeheartedly agree with you on that point DD!!! I have read the thread and think Colin has made some excellent points. I have lupus and inflammatory arthritis, APS and sjorgens. I suffer from multiple symptoms as well as arthritis, most people don't understand and I don't expect them to. It has taken me ages to understand it myself.

My point is that whatever the name, you won't change the fact that most people just don't care. Only a handful of genuine people will care and thats down to their character not the disease name.

Just my two pennyworth.

Mat48

Gosh DD and Suzy - just remembered why I decided this might not be the place for me. Said that DD 'bout shame because I think it's a shame that you put my reaction to your deliciously wry take on the world as being critical or patronising. I don't mean it like that at all - I just think its a shame that we assume no-one cares or should care about arthritis until they are touched by it or get it themselves. Also think a bit of a shame that you can't just tell your friends to shutup when they winge and say "now we know how you must feel" - they'd get culled by me for that I think - I expect quite a lot of my friends though I admit.

I hope you don't think I'm someone who could bore for England? Please remember I am the only person I know personally with RA or any kind of arthritis come to that apart from a few older friends with OA - and am still coming to terms or trying to. As with bereavement it's quite a shock still. If my friends said nothing to me when my parents died they were culled and same goes for this but doesn't mean I need to talk about it much to them. They are great - come with me for physio, drive me to town if I need a lift - come to rheumy with me - even do up zips and chop those huge lettuce leaves for me tonight with much laughter and discussion of everything but RA - that would be tedious in extreme. but they can see when I'm in lots of pain even though I don't say it.

I only tell people if they ask me why I'm hobbling or wearing my splint sometimes - and then it will be as brief as possible. But I am a newbie to RA and still in partial denial so haven't had years of pain to contend with like yourselves. I tend to ignore mine until its too late and end up as tonight after a long v social night singing at cancer concert followed by meal which I came home threw up - not from booze but having been so tortured by wrists and knuckles i could hardly function with the pain. No one knew but thought me quiet and could see the swell of raw red knuckles etc - just other half go surprise when asked to brush my teeth for me for first time ever. So not going to bore anyone apart from u guys while waiting for pain meds to kick in so I can sleep.

Get the picture though - u people don't want to see name change itts okay I was only starting a thread and thinking out loud a bit on the way. Sorry bout appalling spelling grammar etc writing this on smart phone while OH snores beside me. Going to try sleep well sorry if I've sounded pain in backside prig who knows nothing. Been lucky recently was starting to wonder if all a crappy dream but no not so feel torture chamber now in these joints. NSAIDs banned as ulcer has started. What to do hmmm? Night night. Mat x

Poppyg1rl

Hi Mat,
You sound like you're in a lot of pain, tonight must have been very tough for you, well done for hanging in there.
You know Mat, I personally think that you go through different stages when once diagnosed, shock, anger, the why me? bit, denial (and for me that took over a year) and finally acceptance. It is a life changing condition, and we wouldn't be human if we didn't question and plumb the depths searching for a cure or just something to ease the pain, and for our family and friends to understand. For me, I'm 38, a wife/mother and until March 2011 ran my own successful childminding business, but I had to give it up as my pa is rampant. It was a lot to cope with at first, never in a million years did i ever expect to have gone from someone who ran a marathon to being in a wheelchair and unable to walk. I did have conversations with my nearest and dearest and i still do regarding the treatment and progression of the disease, but I don't go into detail when speaking to acquaintances, i say ive pa, they do mostly answer oh youre too youn g for that, to which i reply no im not, there are young children with it too. Also it isn't nice for my family (especially my teenage boys) when people stop me and ask how did I hurt myself? that's where I'm sometimes a bit naughty and say I was out ski ing on my crutches I don't mind what people call this, will it change the symptoms? or treatment? because that is my priority. I'm on my 2nd anti TNF 20ml injected Mtx, Celebrex, oramorph/tramadol/ there are more it's just that it gets boring to type it all out and have been on all of that for a long time, it hasn't worked.
I would desperately like more research to be done and that's the most important thing for me. I'm glad you started this thread Mat, it is a good thing to have others input and take on things, we are all very different, but so do we all have a common goal here, to support, advise, and discuss, I for one would be lost without you all.

Mat48

Yes I always did see the other point of view Poppygirl - long line of civil rights campaigners me. Someone asked who called this lonely they were right. I called it lonely - only question whether a name change might make a tiny bit less so. Others think it might then came the stalwarts who defend the name of Arther strongly. Fair do's this is an Arthritis Care site and its great having so many types under one umbrealla but I am still not so sure that name change mightn't be helpful - 50-50 now me.

Yes I think tonight's my worst night in months. Lying here wondering how not to cry out and wake the household up. As bad as childbirth this but no bundle of reward at the end for it eh? Lonely is the word for this. Thanks for the company Poppygirl your story is another one of courage to add to the long list. Mat x

Poppyg1rl

You're right Mat, this is a very isolating disease, and honestly I could not understand what the heck was going on when first my symptoms presented, arthritis as far as I knew was for older people. I felt very alone, thats why when my GP mentioned Arthritis Care I leapt at the chance to speak to someone about this frightening disease. I cried for a good hour on the phone to the helplines, it was such a relief to talk to another person who understood. From the day I joined the forum I was welcomed, looked after by several kind members and it has helped me enormously, honestly Mat, I don't feel lonely or isolated now, so many wonderful people have helped me and although ofcourse I'd rather not have the disease, I am so glad Ive met and made some truly amazing friends. Mat, we are all here for you, if the pain is bad tonight and you feel low, I'm here if you want to chat? feel free to pm me if so love and very gentle hugs ((())) X

Mat48

Thanks for your lovely offer but I can't write - pain in right wrist and hand too terrible. know u understand. Take care hope will burn itself out soon, mxxx