My sister has been diagnosed with RA

[TheWeeMacGregors]

Does anyone out there have RA, or know somebody else that does, who can give me some advice on how to support her? I know so little about it, I just don't know how she is likely to be feeling about her diagnosis, so grateful for any advice (apologies in advance for slow replies, am at work)

In some ways I think that the name is unhelpful as people immediately connect it to osteoarthritis but it's the autoimmune part which is so worrying for me. Constantly explaining to people that what's just a cold to them can lay me up for over a week.

I didn't realise so many people got diagnosed after having babies. That's when I had my first big flare. GP really hadn't a clue what was going on. But it actually seems quite common reading everyone's stories on here.

I don’t have RA but have CRPS in both hands which comes with similar pain and difficulties. I also have had both children since having it. I don’t know if CBT is offered routinely (it often is in pain clinics). I found that very helpful. Initially I pushed back for years as thought it wouldn’t help my hands but it taught me about acceptance and managing the pain. If she can I’d recommend it. Also just accept the cheats. Aunt Bessies mashed potato is nearly indistinguishable to homemade (and less lumps than mine). Precut veg and fruit. I even buy pre cut bagels. It’s just one less thing. I have a breville hot water dispenser. It boils like a kettle but you don’t lift it, fill with a jug and means I don’t pour boiling water over me or the children. I would also say with the children I found life so much easier when each one got to 4. They could clamber into the car by themselves, do more by themselves and so much less lifting. I know hers are still tiny but it helps to know there is a bit of a reprieve coming. Management for me is key - there is an idea of two tramlines of activity between which you want to stay. Too much activity or too little leads to great swings of manic “good” days and disastrous bad ones. If you can sort of even it out (between any flare ups) you actually do better and achieve more. Took me so long to master as have tendency to go mad if ever feel slightly better. Finally if she can afford it a cleaner is a godsend. There is only so much she can do and getting rid of cleaning and ironing just means that energy can be used for the children and her.

ememem84 did your GP say Reactive Arthritis? Also used to be called Reiter's Syndrome?

@Cauliflowerpower @NomDeQwerty
No psoriasis although am aware that psoriatic arthritis can present without it. And yes dr said reactive arthritis.

It went away after around 7 months or so after having ds (coincided with me going back to work)

I’m keeping an eye on it now though. Hopefully it goes away.

Thank you. I clearly need to understand the medication situation, I will look into it. A specialist nurse? Like you have in cancer? Is that a thing?

I've had RA for almost 22 years and started when I was in my teens. Mine has been difficult to control and I don't fit neatly into a diagnosis box. But I've gotten married, had two children and had a life. It's been difficult and I'm in pain everyday. I would really recommend for her to seek support from the various charities. Knowing what options are available for treatment and things that can help day to day (electric jar opener is a god send) is vital. I've had a couple of rheumatologists and getting the right one is really important. They have to be on the same page. And I'd really recommend taking someone with her for the first few appts as having a second pair of ears can really help when there's a lot of information.