talking to people about RA

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I seem to be finding it really hard to explain RA to some of my closest friends. Has anyone else found this difficult? How did you explain it to friends and family?

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5 Replies

  • Posted

    Hi Lona

    I was diagnosed with RA in 2010 and found it really difficult to accept at first. It was easy talking to my closest friends and they were and still are very supportive. I have found that because it's an invisible disease, that people I work with don't seem to understand and I get the impression they think I'm exaggerating my symptoms which is very upsetting as living with the constant pain is bad enough.

    I don't know how old you are but it really doesn't matter what age you are, it's a hard thing to explain when people assume RA is for old people.

    I hope you can talk to friends and family about it and I'm sure they will understand. Maybe you could show them the many leaflets available at the chemist or hospital which details everything you need to know.

    Good luck. Chris

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  • Posted

    I am 55 i have RA had i for about 3 years...i work. Butv lately i am in pain all joints but i find it hard to explain to work mates what im going thro...they see me but they do.nt see the down side to this RA....
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  • Posted

    Hi Suzanne

    You don't say if you are on anything for your RA. It sounds to me that you may need to talk with your

    rheumatologist or nurse about the constant pain you are suffering.

    If you are taking methotrexate, sulfasalazine or similar, would they be able to increase your dose?

    arrow I know exactly what you mean though about explaining your pain. It's only people who suffer this pain who

    can understand. It's like you have to wear a mask at work to hide how you feel as our disease is an invisible one. If you had a broken leg everyone would know but we have to suffer in silence.

    I don't know where you live but where I live, there are meetings for RA sufferers each month although ours is always while I'm at work. If you do have them near you, it might be a good idea for you to go along and join other sufferers. At least you can talk to people who understand your pain.

    The first thing to do though would be to go back to the hospital and get your medication looked at. Even

    your GP might be able to help.

    I do feel for you because I've been there and it isn't a pleasant experience. The constant pain makes you fatigued to the extent that getting up in the morning is the last thing you want to do, let alone then go to work. I hope my reply has helped you. Please take care and update me how you get on. Chris

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  • Posted

    im on 6 metotrexate on a wed and 6 silfasalazine a day i go for bloods every 6weeks i told the consultent about my arms dumbness in bed and he said sleep with my arm.s stright ? i live in wales i feel im going backwards in work because of my RA iv been there 18 years.
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  • Posted

    I don't understand why he says to sleep with your arms straight. How can you do that all night? I think you should ring them again and say how it's affecting your work. Have you seen an occupational therapist? I had one and she was great. The specialist nurse sees me if I ring up too. I've been given a direct access phone number now so as I can ring when I need extra help. I feel happy with the care they give to me.

    Have you anyone in your family who could go with you and speak on your behalf? They might listen to someone else. I wouldn't put up with the problems you're having.

    Try this link for occupational health in the workplace it may give you some advice.

    http://www.healthyworkingwales.com/i-advice

    Good luck

    Chris

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