What would you like to see as the main theme for RA A... - NRAS
What would you like to see as the main theme for RA Awareness Week 2017?
Does sjorgens , pins and needles , severe pain plus neuropathy have symptoms of ra and have an impact
I think all 3 are very valid topics. RA has a huge impact on all aspects of life, some people are affected more than others. From reading posts it can be a struggle if you look well but have severe symptoms that are not immediately visible.
Michele
Agreed...actually tried to tick all...LOL
All of these and other border line symptoms plus neuropathy connected
If Fatigue is regarding as an invisible effect, that would be my highest priority.
Hi Jora , I can confirm fatigue is a part of the invisible illness theme.
Tiredness fatigue funny eyes you name it
I agree all three very important but I have learnt to manage my RA ( well after a year of denial ) over the last 15 years due to meds but after being diagnosed with pulmonary fibrosis a year ago, I was in total shock as never had I heard of rheumatoid nodules in the lungs, since then I've found out these awful nodules can damage any muscle including the main organs. I had been complaining of breathlessness tiredness and chest pains for 5 year's and nobody mentioned the chances of lung disease even though it is very rare, only a small percentage of RA patient's get pulmonary fibrosis. So as well as the other invisible effects this is one we definitely need to know about.
Linda
Hello Linda I too have suffered damage to my lungs from the RA. I have a page on Facebook to connect us all if you would like to join. You can find the link on my profile page. Breathe easy hun x
Thank you orchidcass, I'm really glad I didnt just vote but aslo posted as I have been feeling very isolated with this diagnosis. I have been monitored over the last year, 3 lots of ct scan and lung function tests. I am going to see my consultant again in November. Would be good to know what questions to ask.
What a day to post this as I am just getting ready to go for a pulmonary rehabilitation assessment. I will be in touch after and look up the face book link
Thanks again Linda x
You're very welcome hun, I know how isolating it is, hope the page can bring you some support and knowledge. Best wishes and good luck with the pulmonary rehabilitation x
I am so interested in what you have to say and wonder if that is possibly my problem? I bet you hate hearing those words!!!!
I too have been complaining of chest problems for more years than I can count. Even as a child I had the same problems. Now at 78 they have diagnosed a mass on my left lung. So now I have refused all future ( CURES ).
I think hospitals are doing heir best but are over stretched .
Too many foreign workers who do not speak or understn
Hi Cynthia,
It is a frightening diagnosis and quite rare which I think maybe that's why not many doctor's test for it. Luckily if you have a good gp they can refer you to a lung specialist and its easy to diagnose.
I will send you a private message, Cynthia and if you want get in touch for a chat if it will help.
I would say what ever problems you are having with chest pain and breathing needs looking at.
Take care Linda x
I went for invisible affects...by this I mean that it's not simply arthritis you know? The "disease" swells up most of our organs too. This can kill
I voted for the Invisible effects of RA because people really don't 'Get it' until they know someone with RA well, and even then...its valuable to us as people living with RA because our relationships with the world are affected by how people experience us: DWP, health providers, families and friends. The psychological impact of being poorly understood may (almost certainly in my considerable experience) ultimately adversely affect our health even further. The work NRAS undertakes already acknowledges all this and we need to keep getting the message across.
Definately invisible effects, it may well throw up things that carer, family and even RA sufferer may not be aware of.
RA never comes on its own,it always brings something else to the party.xxx
What a difficult choice. All three themes deserve to be highlighted as this is such a misunderstood disease by those who don't have it!
The truth about this illness and the damage the drugs do
Too difficult for me to answer was actually looking for answers
I woul like to weight that I've gained but have no get up and go at all this year. Always tired and sometimes sleep well and then awake half the night. I'm not getting any younger but would like to be fitter..
I get fed up with people only hearing the arthritis bit and not realising how different RA is. All three topics should be addressed equally.
That's why a lot of people, professionals and patients would rather RA be renamed rheumatoid disease as the stiff aching joints are just a small part of this awful disease that actually can affect every part of the body. Linda
I feel like a fat, wallowing, hermit at times. They are the visible effects, the invisible low mood, pain and constant searching for comfort is not addressed. I was lucky that my GP immediately did a blood test when I explained my symptoms and had me referred to the hospital immediately. However I seriously thought I had RSI or carpal tunnel syndrome that I tried to ignore it for years.
The reason I picked up on the stiff aching joints Steffi is, ( and I'm sure we have all experienced this ) how often I have come across people, mainly friends and work colleagues, even work's OH once, who when you explain that you have RA come out with the reply, "oh I know exactly how you feel as my joints ache a lot now, its an age thing "
The only people who know how we feel are other RA sufferers so thank goodness for this site and the people on here.
Take care Linda x
People do not know how we dread winter and the pain we go through. Its when
the cold reaches our bones and so many of us cant afford to keep warm. Sad
isn't it when you think it is 2016 and pensioners who have paid their stamp all their working life.
This Government need to help people who have contributed all their life. Needs to be new laws brought out. I know pensioners who are too proud to ask, or don't know they are entitled to help.
Cynthia Rood
All three you could tick and a lot more catogries as RA affects everything
RA impacts not just on work, but school too, for those of us diagnosed as children.
I have both RA and OA and osteoporosis. Would love out see a booklet with the 'samenesses' in it and not the differences. How to cope with having more than one of these diseases., I am not the only one to have all three.
I agree all 3 topics but my no 1 choice impact of RA on life is a valid topic
Also how fatigue affects everyday life.
Not always seen by others but affects your life
All 3 choices are valid, but like most I've gone for the invisible effects because of the fatigue - no-one understands... I know that I'm "lucky" compared to most of you in that my RA has only badly affected my feet joints, so far anyway - but the overwhelming tiredness is worst thing. And even people in my life that I thought would care enough to really listen, really understand - don't. I now call it "medical fatigue" to try and make the point. But still end up feeling they think I'm making a fuss about very little!!
Sheena
For myself fatigue is a major issue but all three are important
I voted for invisible because people always think I'm in glowing health till I tel them at anytime I can get swollen fingers, wrists, knees, ankles, feet, shoulders, and jaws that can render me incapable of walking, talking, writing, sleeping, eating, staying awake, and thinking.
I have had RA for nearly a year, Im about to lose my job as I can't do night shift anymore. I don't feel I am any further forward. It took 5 months to get diagnosed I saw RA doc for 10 min. I have been on MTX this has been stopped at least 3 times due to , low white cells, and now anemia. It is hard to manage on very little money. I love to do things with my granddaughters , however , I don't have energy like I had before. I am 61 and I am supposed to work until I'm 66 . It's affected all my family as they have seen a change in me, I still have to remain positive. Hoping things will improve . Wish everyone well.
Sandie
I tried to click all 3 found them all valid but eventually opted for invisible because that's how it feels
Voted for invisible effects. Fatigue is like trying to wade through porridge everyday.
Amazing description mumbledoor, couldn't have thought of a better way to describe fatigue. Linda x
I voted for the differences between osteo & rheumatoid, as I've lost count of the times I've told people I have RA, and they say 'oh yes, I've got that in my thumb/wrist/knee' or whatever. However this would naturally also include the invisible effects, as these are a large part of the differences, as are the impacts on life, so there's a lot of overlap here.
Omg same here
You feel like a parrot repeating the same thing to people as they are so un educated about it and still say oh Yeh my elbow clicks too 😕😕😕
I think, "most" people" think that Rheumatoid Arthritis is what "just happens when you get old" and do not understand that many of us are "sickened" because our own bodies are attacking us/our own cells, by something called an "auto immune response" The confusion between arthritis and rheumatism is understandable but their is a difference: like two different conditions: osteoarthritis and rheumatoid arthritis. I say if you are seeing a physician who is calling them the same, exit, and find another Physician, hopefully a Rheumatologist....someone who specializes in the management of diseases of joints and the connective tissues and stays up to date. Arthritis literally means "joint inflammation" but it is used as a collective term for a COMPLEX family of (muscle and skeleton) disorders that include over 100 different diseases or conditions. Rheumatoid Arthritis is an autoimmune disease, meaning that the body mistakes its own tissues as foreign and attacks them. The immune system attacks joints and other parts of the body, producing symptoms that often involve pain, fatigue, and warm, swollen, inflamed-looking joints. Osteoarthritis and rheumatoid arthritis are separate conditions. One is due to wear and tear, the other is because of a faulty immune response.
I think all 3 but especially number 3.
Totally agree on all 3 points. impact on us and famy and work its a daily struggle but people can not see nothing wrong so they don't understand what we go through daily so it's a tough call on the vote I think .
Get the media to emphasise the difference between RA & OA. I'm sure 99% of the population don't know there is difference. If more info was circulated about the difference it might wake people up a bit!
Three is interesting, since keeping separate the effects of RA meds and the impact of the disease itself becomes more difficult as the use of meds constantly increasing.
