MNers with rheumatoid arthritis - how can I support my DP?

[ladybee28]

DP(39) has had a host of symptoms over the past year that he's finally gone to the doctor about this week.

He booked the appointment in secret, went on his own, and didn't tell me about any of it until last night when he said he was going to sleep in the spare room and saw me look confused and a bit saddened (he's been doing it a lot recently and I haven't understood why). Then he followed me into the bedroom and explained what's been going on.

Doctor has said his symptoms all look a lot like rheumatoid arthritis and is sending DP for a huge barrage of tests toward the end of the month.

Understandably, DP is scared. He works with his hands as a musician and carpenter and he doesn't know much about RA and the impact it might have on his life, other than it's probably going to be really tough.

I also have never really looked into it until today... and I'm sad for him, and for us.

But I don't want us to get ahead of ourselves – it may not be RA, it might be something else – but just in case, I want to make sure I'm as well-prepared as possible to support him through the whole diagnosis process and then whatever comes next.

For those of you who have been through this, what did you need most from your partners? What helped that you didn't think would help? What should I be doing and thinking about that wouldn't occur to me as someone who's never been through this before?

Thanks so much in advance for your advice –there's nothing quite like real people's stories and guidance and I really want to support DP as much as I can.

I have a different type of inflammatory joint disease (but very similar to RA)
I have also worked within rheumatology.

Although diagnosis can be scary, the treatments are usually very good, with high success rates.
He will probably be very tired all the time at the moment, and could be very sore and stiff (particularly in the mornings), he’s probably finding every day tasks difficult too.
Try to reassure him that the days of deformed joints and people being bed bound with RA are gone, and that if it is RA his rheumatologist will get him on the correct medications to help him.

@TightPants - you're right, he is - he's sleeping really badly, aching horribly for at least an hour after getting up every morning, and collapsing for a 2-hour nap every afternoon.

His hips and shoulders and knees ache, he's low-energy a lot, and about 6 months ago his hands and forearms swelled up and became really inflamed (scary for a guitarist).

He's been trying to stretch every day and go for walks to see if it helps, but although he's becoming much more flexible(!) it's not helping with the aches and tiredness.

It's really hard to see him struggling like this –he's not outwardly unhappy, but he's not himself, and I know he's probably hiding a lot of how he's feeling from me because he doesn't want to worry me.

Hi ladybee,I have R.A,was diagnosed 23 years ago.There are so many new treatments out there nowadays and normally treatment starts early so there is less risk of deformities.I myself don't respond well to treatments as I have other health issues.I have found the best way to support someone with this type of disease is understanding,especially with the fatigue which goes hand in hand with R.A.
The rheumatologist will want to start your DP on treatment as soon as possible.Everyone is different who lives with R.A,some have flares often whilst others may only have one or two flares in their lifetime.Stress also plays a part and contributes to flares.I started getting symptoms gradually,pain,swelling etc and was diagnosed by a blood test back in 1996.My 1st flare was the worst and thankfully I haven't had one like that since.The best thing you can do for your DP is support him and understand the disease.I have found peoples ignorance and lack of understanding the hardest to deal with.Wishing you both well for the future.

With my ex, a daily cod liver oil tablet helped. Might be worth a try, as I don't think it can do any harm.

I was diagnosed with RA a few years ago, at the age of 36. It has been tough but I am now on meds that keep me feeling relatively normal a lot of the time. To echo previous posters - if you respond to the medication, it can be very effective and there are lots of options. I won't lie, I have bad days and as the pp says, stress is a big trigger, but it is manageable.

One thing I would say is don't underestimate the mental/emotional impact of being diagnosed with a chronic health condition. Although it was a relief in some ways to have diagnosis, it took me quite some time to come to terms with the fact I will always have this and will probably have to take medication for the rest of my life. I still struggle with it sometimes.

I also had the added issue that I wanted to have a second child and couldn't do this while taking methotrexate (this is the main first-line treatment for RA, and will probably be offered to your DP if he is diagnosed). But I eventually managed to come off it for long enough to conceive and now have my lovely 2-year-old DD :-) So another positive outcome in the end.

I am eternally grateful to my DH that he understands, and never questions, the fact that sometimes I just need to go and lie down now without any warning.

I can get very snappy when I'm in pain, and I don't realise I'm doing it. I don't think this is fair on my DH and I do try to explain that I'm sore, so he can avoid me! Also I talk very quickly when I'm in pain, and I've asked him to (gently) point this out to me so I can take steps to calm down.

Basically - listen to what he needs. But he does need to try to mitigate the effects on you too. It can be hard on a relationship. I can't do loads of the things that DH and I used to do together, and I worry that this must frustrate him or make him feel unfulfilled. Communication is key I think.