Help explaining ra to family : Hi is there a book or... - NRAS

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Help explaining ra to family

Conster profile image
20 Replies

Hi is there a book or website that I can show to my family to explain how ra affects The body I am getting tied of trying

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Conster profile image
Conster
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20 Replies
Gottaloveastaffy profile image
Gottaloveastaffy

not sure but you will always be trying to explain xx imthinknNRAS have a leaflet that helps xx or maybe your GP has info xxx it’s very difficult to explain xx good luck 💕

Conster profile image
Conster in reply toGottaloveastaffy

Thanks

KittyJ profile image
KittyJ

NRAS do lots of publications covering various topics including this, you’ll find them here to download, print off or to order copies

nras.org.uk/publications/

Conster profile image
Conster in reply toKittyJ

Thanks

Madmusiclover profile image
Madmusiclover

bless you. Kitty J has put the link for you. You can order hard copies.

julie1908 profile image
julie1908

If you have instagram this is Dr Amir Khan explaining it perfectly x

instagram.com/reel/CqArtEit...

Conster profile image
Conster in reply tojulie1908

Thank you so much

calflo profile image
calflo in reply tojulie1908

I’ve just looked at this link but it says Rheumatoid disease NOT rheumatoid arthritis?

Jackie1947 profile image
Jackie1947 in reply tocalflo

Depending where you live in the world it's referred to either and it's the same condition

Ninnin67 profile image
Ninnin67 in reply tocalflo

Hi my consultant has always referred to as a disease which may make it easier for others to understand

calflo profile image
calflo in reply toNinnin67

I’m more confused than ever now lol. Dr Amir Hans video says NOT RA??? Lol

Happy5 profile image
Happy5 in reply tocalflo

Yes cos the "arthritis " is misleading in that ones just think it only effects the joints.

Mmrr profile image
Mmrr in reply tocalflo

RD is more accurate, we live with systemic issues not just arthritis.

Sheila_G profile image
Sheila_G

Yes this is difficult. NRAS has much information to help and you will find lots of info online but only access reliable sites like NRAS and The Rheumatoid Arthritis Society. Good luck.

Happy5 profile image
Happy5

I once sent a link about it from Versus Arthritis to my hubby, no idea if it helped him really?

As he says hard to understand what you've not experienced.

Mr_Hinn profile image
Mr_Hinn

Good luck with that!

cuppa69 profile image
cuppa69

Hi,

I'm sorry to hear of your frustration. I've only been diagnosed relatively recently (September last year) and it's difficult enough having to live with R.A in the first place without exhausting yourself trying to explain it to other people.

I'm a bloke so when I'm explaining it to other people I use blokey terminology, but this is what I say to them:

1. It's an autoimmune disease, which means my immune system isn't just attacking viruses and cancer cells, it trying to kick the crap out me too, 24/7.

2. A common side effect is fatigue caused by anaemia, which means that there's not enough oxygen reaching my body, so it's not psychological, it's physiological. On my worst days it's like being on 5% battery life, no energy, can't think, can barely move.

3. The autoimmune response means that it's attacking my body, causing inflammation and pain. On my worst days I felt like I'd been beaten up or run over.

4. Inactivity causes the synovial fluid in my articulating joints to thicken and gel up. This often makes moving after sitting down difficult, and it takes time for the synovial fluid in there joints to become less viscous and for movement to be less painful.

I hope that helps in some way. Obviously tailor it to your own unique experience and narrating style, but I've found that giving some extra information as to the "why" it is how it is seems to satisfy people more.

Good luck! 😊

Conster profile image
Conster in reply tocuppa69

Thanks for your reply I will try your techniques

cuppa69 profile image
cuppa69 in reply toConster

Best of luck with everything. Hope it goes well

TerrilouiseS profile image
TerrilouiseS

for the younger ones instagram @butyoudontlooksick is v v good

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