people can't see pain ????

i have been diagnosed with rheumatoid arthritis for over 4 years i have regular flare ups and it does get me down after years of working as an electrician i can't hold a screw driver i had to pack my job in three years ago i worked for a few years before i even got diagnosed due to me thinking it was just me getting older..until i had to stop because i couldn't walk to the bathroom in the mornings.....anyway this is me ... : ) due to micro nodules on my lungs after being found after a scan before i took methatrexate...i cant take most meds only strong pain killers and steroids mainly when i have flare ups from the outside i look great on the inside feel really tired and in pain all over at times and on top of that sleep derivation which dosen't help...and then i see people and they say you looking well ....because people dont see pain !.....would like to hear off fellow sufferers how they cope ... paul

[sylvi]

Good morning Paul, i am sorry you have joined us. Welcome anyway to our lovely site,we do have men on here so your not alone. It is difficult when we look well to get people to understand how we feel. WHen i am having a rough day nobody sees me at all because i just don't go out.

DO you pace,thats when you do a little work and then rest and then start again. I know your going to get a lot of good advice from everyone on here especially the men. Though we all have RA men have different issues than women. You gentlemen see things diferently to us ladies.

So welcome and i look forward to hearing more from you in the furture.xxxxx

[Hidden in reply to sylvi]

i have found over the last 5 years that i do have to pace myself little and often i used to be keen sports man but now i just watch and short walks when i feel up to it its the tiredness that gets me ...and thanks for your message !

[Bazzypants]

Hi Matiod, I know where your coming from, I really do I am only 42 and when I tell people what is up they look at me sideways and some say that is what old people get lol but its only lack of knowledge that give people that impression. And as I have said before on here when you say arthritis most people just shrug and think yes you and half the planet have it ..... but they don't know they type or kind you have and they think if they cant see your pain you sure as hell aint feeling it lol xxxx Only you know how you feel deep inside and you haven't got to prove it to anyone we already have a daily fight on our hands with ourselves and this horrid RA. take care xx

[Hidden in reply to Bazzypants]

thanks for your kind words ...its not nice for sure i am just tired all the time lack of sleep i have to deal with it the best i can ! x

[hatshepsut]

Hi Matoid

You've hit the nail on the head, RA is the invisible illness. As others will say, you have to pace yourself, and try not to feel guilty when you need to rest.

The NRAS website can give you lots of info ( just google it), and they also have a great helpline

Just remember you're not alone, and this is a great place to talk about anything!!

Best wishes M x

[Hidden]

Hi Paul, I read your post and had to reply as I know just how you feel and it's so frustrating! When I first got diagnosed I was VERY naive thinking other people would get it but sadly as time goes on and I grow more aware of this condition I've realised very few do get it, I think we are a very special "club" to be honest as obviously we know how one another feels and can help and support one another! Best wishes x

[Hidden in reply to Hidden]

thanks Kiki i do feel my mates dont understand at all and can be quite hurtful i know its only banter today i feel really tired i only cleaned the kitchen and bathroom and today feel exhausted and aching all over feels like i have been hit by a bus lol... x

[norfolkjo]

I am 45 diagnosed last year but can track this back 13 yrs x it is sad that i have lost friends who just don't get it but this board always understand xxxx

[Hidden in reply to norfolkjo]

my friends always say the same to..." you look fine nothing wrong with you take some cod liver oil "lol....x

[imoches21]

I'm so grateful to all of you, I don't know how I would have coped, as you guys can relate to how I feel.

I have my days where I feel on top of the world, and some days I just lay in bed and cry because joints in my hands and feet are so stiff i cant even pick up my 2 year old.

[oldtimer]

I find it helps to say that I have an auto-immune arthritis. If someone is interested enough they will ask what that is, and I explain that my body is attacking my joints and other parts of my body causing pain, swelling and feeling as if i have flu all the time. If they aren't interested I leave it at that.

People always comment on how well I look and I say "Isn't medication wonderful!"

[Jeanabelle60]

i think oldtimer has it right. or i might say i have rheumatiod disease......i never use the arthritis word if i can help it. if people are interested they will ask more, usually they don't so i have learned to just leave it. there is a site i often tell people about to help to explain to non sufferers a bit of what its like......butyoudontlooksick.com

in the past people had terrible deformaties with this disease. thankfully that is not the case any longer. i have an iffy left hand and right knee that are never going to get any better but i can live with that.

cancer sufferers used to look like grey skellatons but again thankfully this is rare now. medical advances mean that we don't have to 'look sick' even though we are. you will learn to just let it go instead of trying to explain. but the site i have given you will explain to the people closest to you just what it is that you are going through.

have you never been put on any ant-tnf's? they are wonderful drugs and have helped millions.

anyhow, all the best to you and i hope this helps a bit. all the best. XX

[Hidden]

Hi Paul,

Welcome to the site, I hope you will find some support and understanding here. If you would like some more information about RA please visit our website nras.org.uk or we have a helpline team on 0800 298 7650 if you ever want to chat. You're post is very fitting with this year's Rheumatoid Arthritis Awareness Week campaign in which we will highlight the invisible symptoms of RA. If you want to find out more about what we are doing and how you can help, visit nras.org.uk/RAweek . We hope the campaign will help to bring a change in people's perception of RA!

Take care,

Ruth Grosart

NRAS Digital Media Coordinator

[norfolkjo]

I also avoid the arthritis word. I have even now asked work to call it psoriatic inflammatory disease. Like u say if they ask I tell if they don't I don't . xx

[Patsy-57]

Hi, I sympathise with you. I agree with the others about pacing yourself, but I don't get that right sometimes. I wouldn't get through a day without pain killers, and only people who know me really well know when my pain is really bad. Sleep is a problem and now I come downstairs, have a cup of tea, take pain killers and then go back to bed. Having a sense of humour helps. We cannot change our condition but we have to get on with our lives with it and accept that we will have good days and bad. Enjoy the good days!

[Hidden]

well here i am again had a good weekend then started to feel sooo tired, i know this is to be the start of a flare up aching shoulders and elbows woke up feeling like i have chopped 20 ton of logs ....feet aching and sore also stiff like have done a 20k marathon ....after not sleeping to well and then waking up this morning..... i am feeling more tired ! would like to know if flare ups start in similar ways with others...has anyone had tinnitus when they have flare ups ?