ITV This Morning @ 11h15..

[Vanessa2712]

Hi guys, may be of interest to you.

The Agony of Crippling Joint Pain on ITV at 11h15

[nomoreheels]

Yes, but it's about OA unfortunately, so not that helpful in getting the message of RD across.

[Hidden in reply to nomoreheels]

Hi Ive noticed people here prefer RD instead of RA. I've already experienced this difficulty in the past year with friends and family. When I try to explain the pain a few people will reply with telling me about their arthritis or sore knee or shoulder, neck etc. I've then tried to explain my pain as stiffness and deep constant toothache like pain and sometimes stabbing in every joint in my hands elbows and feet but they've just looked at me like I must be exaggerating. I've found it hard to explain because I'm seronegative and I've got no swelling or redness so I look fine to them. I think it's hard for them to understand how tired it's making me feel. I also didn't know it can affect other parts of the body until I read about it. I don't think there's enough awareness so it would be good if a programme like this morning covered it to help people understand better.

[nomoreheels in reply to Hidden]

Agreed! It's just not RD though, other autoimmune diseases are covered in the media..... This Morning is good at getting the message across but it tends to be Coeliac, Thyroid etc that receive the attention. That's not to say that the public don't need to be aware of the ones that are talked about it's just that RD is very rarely given the same coverage & is also a chronic disease, an autoimmune disease all the same!

[angel-delight in reply to Hidden]

Hi there, This morning a little while ago, covered OA but not RD/RA. I also am seronegative I have swollen hands, wrist, feet, knees and legs. They are very swollen at the moment whilst waiting to start on a new biologic infusions. I understand how you feel, my RA travels around my body, never knowing where it will show up the next time, I am always tired no matter what time of day or night, if it wasn't for the pain, I could sleep for England, I am sure the meds I am taking play a part in that as well.

Take care, wishing you well. S

[Hidden in reply to nomoreheels]

RA and RD ? I'm out of the loop.. sorry.

[nomoreheels in reply to Hidden]

Just changing the A to a D for Disease, makes people who don't know what it is stop & question it rather than the usual "oh I have that" . Using RA people focus on the Arthritis not realising that Rheumatoid isn't the same. As one who has both it helps people to understand the difference between the two if they question it. I have used it some time now & my RheumY & her team does too.

[Hidden]

Even if it's about the agony of any kind of arthritis surely all media interest is progress. Arthritis's of all types need much more understanding than they currently get and I think people forget that spending the last decades of your life in crippling pain in this day and age is pretty awful - to my mind just as awful as lots of other diseases which are classified as "sexy" such as cancer. Also, as you yourself have said NMH - OA can be just as painful and doesn't get taken seriously by specialists because serious drugs are not involved in its treatment. While waiting for my physio session I just watched an elderly gentlemen in the GP's waiting room and the poor man could not get comfortable at all and when he was invited into the GP's consulting room it was so painful to watch his very slow progress - I felt really sad for him.

[nomoreheels in reply to Hidden]

No, not unless the two are distinguished as quite different, they don't even have to go into detail, just explain that the two are not the same. Yes I have both & yes I have experienced the pain of both if unmedicated & can empathise with anyone with advancing OA left untreated but it doesn't affect my heart as RD is doing now & has the capacity to affect my other vital organs if not monitored. Thi is the message which needs to be got across. The meds needed in an effort to control us speak volumes yet the media isn't making it aware, that's all. Allanah's said before from when she was nursing how the "sexy" diseases are allotted crazy money compared to autoimmunity, rightly so but that doesn't mean those with chronic diseases shouldn't receive a portion of the funding available, it's a chronic disease & then there's the prescription side of it but, why do we not get free prescriptions, or is it that we can manage without our meds if we choose? I don't think so, we need the meds if we're to stop or slow down progression & in turn damage in an effort to prevent needintg costly surgery so can't effectively can't do without them yet still we have to pay! Look how we've to jump through hoops if it's necessary to move onto biologics, going off the subject a bit here but it's somewhat relative don't you think?

[Hidden in reply to nomoreheels]

Sorry NMH but I don't agree that it's a case of rightly so at all. I think it's massively disproportionate. I may not come from a nursing background but I am on inspection teams for hospitals and for strategic health and care services - having had a lot of training for this role. As a person representing the public I see what health authorities and those who allocate funding think of as the priorities- mainly children's illnesses, cancer and Alzheimer's. Sure these are horrible but what about Motor Neuron disease, Parkinson's, MS, COPD and of course RA - but also what about OA?

Arthritis accounts for a huge amount of unacknowledged suffering. People with RA often have secondary OA very badly as do people with Lupus and many other systemic inflammatory diseases.

So you may see it as an opportunity missed - but in a sense there are lots of awful diseases that people just have no concept of - including many people with RA. How much do people here know about Systemic Scleroderma for example? People with this also often have OA as part of their most terrible disease.

So focusing on the crippling pain of arthritis should be a cause for celebration even to this RA community I feel. We should just be pleased when the focus is on any disease that is under acknowledged and underfunded.

If this programme had been about MND we wouldn't be talking about it as an opportunity missed for RA. If it was about Lupus we wouldn't either. RA has many overlaps and if there's a programme to be made about it I feel it should be as a systemic autoimmune disease - not put in next to OA just because it shares arthritis in its name.

Surely it's time to end the comparisons over sister diseases which overlap with our own. Pain is pain and no-one should have to live in chronic pain unnecessarily - especially not in the last years of their lives.

[nomoreheels in reply to Hidden]

Ok add all those in but I think that would just be confusion, the one disease that's mistaken for OA is RA, it's why I change the A to D whenever I'm questioned, particularly if people don't know me then it's assumed it's OA, not RA, RD whatever anyone prefers to call it, not any other disease as they don't figure in people's lives so much as they age. I've been told too often they've never heard of it & those who knew I had something thought I had OA, or rather just OA & when I outline the difference their attitude changes. With friends in particular, I'm not looking for sympathy, even less so where relatives & friends are concerned that's not me at all, I'm not a poor me type of "sufferer", (I so dislike that word but it is apt in this instance as that's what I'm thought to be before I put them right) but I get it & then compelled to fully explain that I'm pretty well controlled & why they've not to worry but they would have done if they'd seen me before diagnosis. This is why I think it's necessary to explain the differences in the two, Rheumatoid, not even heard of it! They understand OA, or rather the aches & pains of ageing, so even OA isn't completely understood unless they've had experience of how damaging if it has the opportunity, it's just getting old apparently.

None of the other diseases you mention are pertinent to me & my argument for the two to be seen as conditions & diseases in their own right, yet unfortunately the two which are are joined at the hip (sorry!) by a word, arthritis, the problem is that very fact, they have arthritis in the title & of course all arthritis is the same isn't it? No, of course it isn't but you wouldn't believe how many times I've heard that & why I would prefer it was made clear it isn't the same. That doesn't for one moment mean I don't empathise with anybody else with a life changing condition, nobody who's looked after someone with Parkinson's Disease for example would be so foolish to think any of them aren't seriously afflicted with such conditions, their whole lives turned upside down, particularly partners & then with the onset of dementia it's so very hard for those who care for them. Gone off the subject somewhat but I still maintain that more awareness is necessary, if only to differentiate so people get early diagnosis & treatment, earlier than if they put off going to the GP because it's "just" a bit of arthritis.

[Hidden in reply to nomoreheels]

Well I think we are basically saying the same thing - but I just feel we need to move towards the other diseases such as thyroid disease and Coeliacs and not see it as a competition for coverage so much as solidarity between autoimmuners. So many of us have several AI diseases. And no offense but thyroid disease affects many more people than RA does and is terribly misunderstood - even by sufferers such as myself. In Scotland all prescriptions are free.

[nomoreheels in reply to Hidden]

No Twitchy I'm not treating it as a competition, you're reading me wrong. I'm not as well versed as you are on what to look out for regarding initial thyroid problems or Coeliac, I don't know anyone with either apart from what I've learnt here, which doesn't amount to much, so you're right there but neither are they under the Rheumatology umbrella. I only know what I do as they're generally mentioned in passing & not detailed on the NRAS site & as not having either I don't go on the appropriate sites & here they're only really referred to in passing as another issue the members that also cope with so really I don't see that it's relevant in my crusade if you like, bit dramatic but it's a sort of one! Agreed they're autoimmune & so in the same group if you like but none have the arthritis tag, to that end not confused with osteo. You know how much pain I was in before it was confirmed mine was galloping at a pace so I would never say it's better or worse just it's not the same, but I've gone there! Good gracious, I need the highest dose buprenorphine patches, would I need those if I thought it was nothing & I could cope with the pain, not even max dosing highest dose co-co's plus some at times took the edge off!

I know that in Scotland & indeed Wales prescriptions are free & another reason it bugs me that we have a long term condition yet we're not exempt with the amount of meds necessary to keep us upright, 11 presently in my case, not including acute meds. Grrrr.

[Hidden in reply to nomoreheels]

I am not exactly disagreeing with you NMH. Well only about the "rightly so" remark re how funding is allocated.

However I do feel you have much further to go in your campaigning than you are possibly aware. Both PsA and RA come under the heading of "Musculoskeletal" for political expediency - rather than "Autoimmune". I am guessing this is mainly because there are so many truly awful autoimmune diseases that neither RA nor PsA nor AS wouldn't feature very highly in this category and may well even get lost - whereas under the heading of musculoskeletal RA and PsA actually come pretty much at the top of the list for funding purposes - as compared to Osteoporosis or OA.

So there is much more to this than the name we give it. And I stick to my description of multisystem autoimmune disease because mine is a very cunning seronegative beast so I feel this is genuinely the best way to describe it. As you know I have some OA - especially badly in my fingers just now. These joints can't easily be replaced and I believe this is pretty close to the kind of arthritis which ails people with other autoimmune diseases.

I realise yours is a more aggressive beast than mine where both RA and OA are concerned but I think mine are far more entwined than doctors realise. So I do know where you are coming from but I still believe that highlighting the differences all the time is to discredit how severe OA can be for some - even for some children and young people.

Also the reason I flag up a few of the other autoimmune diseases here on this post is because for some here these come along like buses and indeed there is so much overlap with thyroid disease and RA that I simply see mine as part of my rheumatic disorder. I can't separate them out really and neither can my doctors. The thyroid disease was one of the ways my RA was diagnosed in fact.

What I know is that I've really benefited from learning more about other autoimmune diseases - including ones I may or may not be diagnosed with myself one day.

[nomoreheels in reply to Hidden]

Right, dinner finished & relaxed back resting rubbish sore feet. I agree it's disproportionate but I think many people would be up in arms if funding wasn't there for those in desperate need of life saving treatments, if we're to accept the 4 in 10 (according to Cancer Reseach UK) we're told will develop cancer there'd be an almighty uproar if funding to treat wasn't there. The advances being made to change that figure are on an upturn so maybe in the future there'll be less need for the percentage of the NHS budget it has now.

If that's all we can't agree on then so be it. I'll hold my hands up & say ok so we don't agree, nothing more to say but at least we can be sure we'll still be supportive of one another, it won't change that! x

[Hidden in reply to nomoreheels]

Yes true re supporting each other. However I should just clarify that it's not actually the NHS budget allocation for cancer which bothers me NMH. I agree it is an impossible job allocating public money appropriately and cancer should qualify for a substantial chunk of it given how many it afffects- research especially.

I'm more concerned at the way society supports charities and endowment funds for these diseases and how much less goes into long term conditions - especially painful and debilitating ones.

I think it's about improving quality of life that I would like to see more people supporting re charities - rather spending money mainly because of the terror of death.

Like most people I've had close family and friends die from cancer and it is always terrible - especially for those who are younger and leave behind young families. But the other day in the GP's waiting room an old friend was telling me about her struggles with very advanced cancer. I told her that her health issues put my spot of pneumonia into perspective. She just shrugged and said "not really - people die of pneumonia too and that's pretty horrible. And anyway my brother-in-law has just died of motor neurone aged just 48 and it was the most terrible death. That puts my struggles into perspective. There's always something worse" x

[Hidden in reply to nomoreheels]

I hear what you're saying, nomoreheels, and I agree with you. I have real issues with lumping autoimmune diseases in one homogeneous group. Although there is a recognised and accepted link, the sheer number of autoimmune diseases makes saying "autoimmunity" a bit of a vague term with questionable meaning. Imagine a programme that covered Psoriatic Arthritis, Crohn's Disease and Type 1 Diabetes! The disease arises from an abnormal immune system response but the treatments, the symptoms and the prognosis all vary hugely and that isn't accounting for the difference in severity within the same one disease.

[Hidden in reply to Hidden]

This is presumably why RA sits under the heading of musculoskeletal rather than autoimmune Crashdoll. And having queried this a while ago I came to the decision that it's a good thing for the reasons you outline. But this discussion arose out of a tv programme this morning about arthritis and I don't think diminishing one form to raise awareness about the other is a good idea.

[Vanessa2712]

Interesting to read your replies. I watched it and thought "i didnt learn anything new" selfishly not thinking it may be helping those not afflicted to better understand.

When a friend of mine was diagnosed with Cancer (now all clear thankfully) his doctor said to him, "IT COULD BE WORSE, IT COULD BE RA" When he told me I'd been 3 months into my diagnoses and it really brought it home to me. I had the same perception as people without RA - ITS JUST ATHRITIS, whats the problem. I do now fully understand its not JUST athritis

I hadn't seen my dad for a good few years and when I did, he said "you look fine, you been telling me porky pies for sympathy" I thought about sending him my diagnoses notes etc, and realised I didnt have to prove anything - i know what i have, i know what i have to live with and I sometimes think those doubters need to feel it to understand it, but in all honesty i wouldnt wish this disease on anybody.

I dont, and i suppose many of you, want sympathy at all - just understanding that RA or any of those types diseases are not easy to live with and make allowances for it.

[Hidden]

he was doing ok with oa but nothing about rd what a opportunity missed the programme researcher's could do with some information sending to them I am sure they could put it on file for suggested future program

[Hidden]

Well I also watched it, I have PSA plus OA, plus ankylosing spondy. Firstly, the exercises shown would have been totally impossible for me!! I simply cannot bend, never mind get on the floor, putting knee over opposite hip etc. so I had a little giggle to myself at the very simplistic demonstration. Best to take it tongue in cheek.

There are several in my family suffering OA, mostly elderly, who are in a massive amount of pain, but they have also had joint replacements which have given them a new lease of life. We also in our family have myself, with my horrendous problems, and three others, my daughter, my sister and an aunt who have lupus. I have to say me and my other auto-immunies get not much understanding or sympathy by virtue of the fact we are younger !! No matter how seriously ill we can get. I'm used to it, I just chill and take it in my stride, but it would be good if there was a bit more public knowledge of RA and all the other auto immune diseases.

I have read earlier comments and the word 'Sexy' has popped up in talking about cancer. I,am afraid I don't like this phrase at all, how on earth can such a totally life changing and often terminal illness such as cancer be 'sexy'. I speak with personal experience, my own husband had life saving surgery 4 yrs ago for colon cancer, changing his life and mine forever. He is still fighting this terrible disease. I lost my beloved sister in law to breast cancer recently, she was only 55 and endured a long, painful and protracted death. No, cancer is certainly not sexy !!

All illness and disease is horrible, I never try to compare my illness with that of my husbands, I try to get on with it the best I can, and try to support unfortunate others, not score Brownie points saying RA is worse than OA or similar. It's a personal cross I have to bear and stops me from feeling too sorry for myself. Lynda x

[Hidden]

I used the term "sexy" in inverted commas Lynda - only to discredit it. This is in reality the term used by NHS managers, charity fundraisers and others for the diseases which have most people putting their hands on their pockets, pulling out cheque books etc. Of course there is absolutely nothing sexy about any disease - let alone Cancer or Alzheimer's. But it is funding speak and my feeling is that it should be exposed because using this term to prioritise funding and education is so hugely inappropriate.

For example I have just been helping a group to raise money for the neuro ward in Aberdeen - which was I discovered - almost a third world environment used by people with brain tumours, MND, MS, CNS Lupus and all neurological conditions in this large health area. The fundraiser explained after our concert that the reason things are so dire for this ward is political rather than because of a cash constrained NHS. All the so called "sexy" diseases get huge endowment funds where neurological conditions don't - and this includes people with brain tumours. I find this deeply shocking but it is the reality we are faced with.

NRAS needs all the support it can get - but not at the expense of other equally underfunded an misunderstood diseases such as PsA, Lupus, Scleroderma and many other autoimmune diseases. But I still don't think it helps us to diminish OA. There just need to be more programmes about all of these diseases and the impact on sufferer's lives. Txx

[Hidden]

Well it's very badly used terminology to call any disease 'sexy', Wholly inappropriate and quite offensive Lynda x

[Hidden in reply to Hidden]

Completely agree with you - hateful - but this is what we are up against and this is why I feel autoimmune diseases should stick together where possible- and that in itself will hopefully distinguish RA from OA without diminishing the damage and pain OA can cause. And even my rheumy who is an arthritis man on many levels called it simply Rheumatoid at last week's appointment. I think this is because he realises that arthritis is currently the least of my problems. I can't face using the word disease myself but I do speak about my version of RA as a multisystem autoimmune disorder. This has people intrigued rather than dismissive. I believe scientists now say that RA is in reality a syndrome - or a spectrum of different rheumatic diseases. Tx

[Hidden in reply to Hidden]

Not to be too pernickety but Rheumatoid Arthritis IS a multi system disease.

[Hidden in reply to Hidden]

Yep it surely is! But I think of it as a syndrome more than a single disease and this is how I describe mine. Others can describe theirs however they like - arthritis if it is more musculoskelital and they feel this fits or Rheumatoid Disease - whatever. I'm just saying this is what I call mine it better conveys the variablity and invisibility of mine. Some people have sero positive very definite and erosive RA in the form of swelling and altered joints. Maybe they are happy with the term arthritis - if so that's fine too. I don't really worry if people think of mine as arthritis because sometimes it is and I can't take on the world - just my friends, family and those who express an interest.

[Hidden]

Yes, I agree Twitchy, I think RA does belong to a whole spectrum of different auto immune diseases, rather like being on the autistic spectrum, which most people are quite clued up about these days, me especially so because our grandson is autistic.

The NHS is struggling so much at the moment, and I personally am very grateful for the care I receive and I personally could not care less what they choose to title my illnesses ! Take care, Lynda xx

[Hidden]

Ah you have it so tough Lynda, what with your own symptoms and your family's I always admire and respect your take on things. Perhaps I have a different take on this spectrum business too because I've grown up with profound deafness in my immediate family - as opposed to hard of hearing - and my son has Asperger's Syndrome - an autistic spectrum disorder. Also I've never had good health and my health problems are always shifting so I suppose I find it easier to think of it as a spectrum or syndrome than I do a disease. I feel quite optimistic that attitudes will change, just as you rightly point out that they have with autistic spectrum disorders. We just need to keep raising the flag for autoimmunity as individuals I think. TX

[Hidden]

I don't much like comparisons. Just this week figures released show that the UK is lagging behind other european countries in cancer survival rates. Badly lagging. More research, more money needed all round, I believe.

[helixhelix in reply to Hidden]

Don't wish to add more fuel to this particular fire, but if it is true that a third of cancers are related to "lifestyle issues" then how much of the UK lagging behind other countries in survival is also due to the UK's poor record on weight, exercise and so on? Just a thought....

[Hidden in reply to helixhelix]

Agree, possibly a factor. Time was I tended to blame people for being overweight ..... I've left that behind. Now I think more in terms of societal trends. There is massive but massive pressure to buy and eat - over-eat - the convenience foods that probably confuse whatever it is that regulates appetite as well as being packed with sugars and wotnot. Add in reduced incomes and overwork - little time to cook or to think carefully when shopping - and it's a perfect storm.

People have to get seriously defiant to counteract the pressures. Worth it though. I'd also like to see the NHS going all out to help those whose poor mobility makes exercising very difficult.

[helixhelix in reply to Hidden]

Agree, lots more on prevention as well as lots more on research needed.