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)

I have it. I'm 34 and was diagnosed 22 months ago. Mine came on post partum and mainly affected my hands.

Best advice I can give is to read up on the condition- NHS, NRAS and Versus Arthritis all have good info.

DO NOT suggest random supplements, diets, medical aids that claim to cure it, if they worked then the Rheumatologists would suggest them.

Educate your family and friends that this isn't osteoarthritis, and it presents very differently. It's an autoimmune disease so she needs to make sure she has her flu jab etc, these are free for immunosuppressed people.

There's good Facebook support groups.

How old is she and what's her circumstances? I can give advice on managing RA with a baby/toddler but if she's got teenagers it's probably not that helpful.

thank you! she's 30 and has a three year old and a one year old. I think she is very concerned about that, the practicalities etc. She says she has a lot of pain in her hands and that must make it difficult with little ones right? She seems to be very depressed about it. She has a supportive husband and a great circle of friends, although she has mentioned that nobody seems to have heard of it or understand because they can't see it as such. To be honest, I was a bit confused about the difference between that and the other kind of arthritis. Am definitely going to read up!

can I ask which FB groups you find the best and most supportive?

At her age, she can try Arthur's Place Social.

Yes, young children are the worst with hand pain with RA. I had a bad combo of a 90th percentile baby and RA in my hands and wrists. A decent sling is a lifesaver as it meant DS was close to me and my hands weren't in use.

Lots of practical help was appreciated, for example coming with me to the park to help manoeuvre the pram, get DS in and out of swings etc. I chanted my pram from an icandy to a lighter one as it was 10kg without the baby in it, new one is much better.

I know it's hard but once I got on the right meds I was relatively pain free for 17 months until the next flare.

Probably worth looking at pacing, I'm personally not a fan but lots of people like the spoon theory.

Does she work?

We got DS the chickenpox vaccine as we couldn't risk him getting CP and passing it onto me, so I'd recommend that if her DC haven't had it yet. Her rheumatologist can discuss it with her but mine said any of her patients with small DC tended to suffer as they brought lots of bugs into the house.

Happy to answer anything else, I'll post if I can think of more.

Thank you so much. Spoon therapy I will need to look up!

Can I ask, sorry if this is a bit personal, do you get depressed about it? She is really down and don’t know if that is just to be expected really. She says she feels like nobody gets it (hence trying to get it more)

Don’t want to say the wrong thing if this is just part of coming to terms with diagnosis.

I have a different type of arthritis, thankfully currently well managed with medication.

Offer your help (practical when she is flaring) and your ears.

I was depressed to fuck when I couldn't walk for 6 months last year. It's a catch 22 as well as you can't physically get out the door / take exercise (things that often help when you feel depressed)

I was medicated quickly after diagnosis but it took several months for us to find a medication that suited me and worked.

My kids (3) were aged 5, 3 and a few months when I was diagnosed (I was 38!!)

You both sound amazing. I have no arthritis, and have found motherhood staggeringly hard.

Thank you for excellent advice. You’re making me think there are things I can do to help.

Echoing refraining from passing on information on fad 'cures', diets, supplements etc. I have had RA for over 25 years and people STILL ask if I have tried caffeine extract/Marmite/ crystal energy/leeches. No - high doses of evidence-based drug therapy is what helps me - nothing else.

I did feel very down, and still have days where I feel sad. I feel like I've been robbed of the chance to have another child, to continue my uni course (was an NHS role where I'd struggle too much), my ability to do some things. But most of the time I feel grateful for what I do have and what I can do. I find some of the fb groups can be very negative, and of course I like to moan, but being positive tends to work better for me.

I have RA. It is very common to be depressed about it. I have pain every day and mine is still uncontrolled as they haven't found medication that works well enough. A lot of it is about adaption and acceptance, I now buy prechopped veg for example as I struggle to hold a knife. If I have a busy day then the next one is a write off. I have has to drop to part time mainly due to the fatigue.

I will say, I have found turmeric helpful, add it to my food and drink it with ginger in tea. It is an anti inflammatory and encouraged by my rheumatologist. He is also encouraging swimming to keep my joints moving and for now has ruled out anything more energetic.

I don't have children though and I can imagine how difficult that must be. I think it could be about finding adaptions there wherever possible too. A hot shower or bath in the morning really helps me if she could fit that in somehow.

I was going to say say exactly what DreamingofSunshine has said. I have had RA for 26 years now,since I was 30,and believe me,if there was a supplement,diet,or medical aid that would help,I'm sure I would have found it by now! My consultant told me,that in her opinion,there are very,very few,if any,supplements,or diets,that make any discernible difference.

Also totally agree re. the makng sure that family and friends know that it's rheumatoid arthritis,not osteoarthritis. The two are completely different. When I was first diagnosed,I was constantly hearing remarks such as 'you're far too young to have arthritis'. Osteoarthritis is usually (but not always) an older person's condition,whereas rheumatoid can even affect young children. It has nothing to do with age. It tends to affect your whole body,in that your muscles hurt and it can make you feel very unwell generally,with fevers,flu like symptoms,loss of appetite and extreme fatigue.

Luckily (if that's the right word),my Dd was 10 when I developed the disease,and she was my only child,so thankfully,she had a certain degree of independence and I didn't have to worry about lifting or carrying a toddler. But believe me,I still found it very hard at times.
I suffered from numerous flare ups for the first 15 years after my diagnosis,but seems to have settled down considerably in the last 10 years. It is vital to get the balance of doing enough exercise and physical activity to keep mobile,but not doing too much and suffering for it. You just have to listen to your body,don't push yourself if it hurts.

And bless you for wanting to help your sister.
I have found the NRAS (National Rheumatoid Arthritis Society) to be very informative and helpful.

I was diagnosed in March this year. Still trying to get the right dosage of drugs so unfortunately I'm still in pain. Has your sister been prescribed any medication yet? I started on Methotrexate and a month or so ago Leflunomide was added in. One of the things I've struggled with a lot is the side effects of the meds and I felt like giving up on them but they are slowly improving so if she does get any side effects it's worth pushing through unless unbearable. I'm able to get anti sickness meds and painkillers from the GP.

Fatigue is also a massive part of the disease and the one I struggle with the most, I've tried to explain it to people but I think unless you've had fatigue before you can't really understand. It's not like normal tiredness, a nap or good sleep makes no difference and sometimes I feel like I literally don't have the energy to keep my head up.

Brain fog is also common, again hard to describe but sometimes I almost feel like there's static in my brain and concentrating is really difficult. I also keep forgetting things so have a million reminders on my phone.

Well done for wanting to get more information so you can support your sister, I wish some of my friends and family would. Agree with the above, please don't suggest any magic cures you've read about on the internet or someone has told you about.

I'd say just be there for her, support her and understand that she may have days where she feels like superwoman but that doesn't mean the next day she's all better. There are definitely good days and bad days.

There's a group on Facebook called "UK Rheumatoid Arthritis Wonky Group" which I have found to be an amazing support. There are some really knowledgeable people on there who helped me massively at the beginning and still do now, as much as I have supportive people around me it's nice sometimes to be able to talk to others who are in the same position.

Another one saying don't suggest copper bracelets or turmeric or cutting out citrus fruits from her diet. Nothing annoys me more.

Read up a bit yourself so you don't need to ask her lots of questions.

Apart from that just be sensitive to how she's feeling on a particular day. She might look great but be feeling shit inside, some days she might be feeling ok.

I also get quite irritated when people ask me how I am in a deep and meaningful way. I feel tired and sore most of the time but there's not much point moaning about it. Obviously some people like to moan, she might be one of those, in which case ask her a lot.

People tend to ask because they want to hear you're feeling better. But with a chronic condition it doesn't get better. It has good days and bad days but it won't ever be better. I usually just say 'oh it's fine' because there's not much point saying anything else. But that doesn't mean I actually am fine.

I don't have rs but have other life long disabilities and depression seems to be a common theme. your sister is mourning. The future she planned is going to have to change /adapt. Her role as a mother is going to be different from the one she envisaged. Her dc will not know any different but she will, they will likely become independent much younger than their peers and at times take on a caring role. If she works she may need adaptions, being immuneosupressed has its issues (especially with young dc who are building up their immune system).
I'm 5 years down the line with my illness and at the weekend my youngest found a picture of me on a bike she was amazed (she's used to seeing me in a wheelchair) she said I never knew you could ride a bike. Eldest went on to tell her about embarrassing mum who always joined in and was on the zip wire or climbing or helping on school trips. Unfortunately my younger kids haven't experienced the embarrassing mum and never will. Your sister will have to adapt her life to accommodate her disabilities and that will always be frustrating although I cope most of the time events like the weekend made me have a little wobble (& a its not fair moment). She will learn to cope emotionally and physically (especially if she knows she has support) but it will be two steps forward one back at times. Time will help all of you come to terms with the news, she's very lucky to have such a caring sister. Best wishes to you all.

Mourning is a really good way to phrase it. I feel like I've mourned my medical school plans, having another child etc and I'm trying to embrace what I have.

The other thing which upsets me is people telling me I don't look sick. I'm sure it's meant kindly but when I feel exhausted and I'm walking through treacle to pick up DS from nursery I don't want to be told that I look fine.

I have DS in nursery part time as I can't manage to look after him full time. It means I get to rest, and he gets to do things that I can't do with him.

You sound like a lovely sister, I wish I had a sibling like you.

Interesting thread.

I’ve just had dd and my hands are superbly painful. This happened port partim with ds and went away after a few months.

I saw my gp yesterday and they said maybe some form of reactionary arthritis. After having ds they tested for RA but all tests came back negative.

I’ve had RA since my teens, now 41 and am coping well. It is absolutely vital though, to get on a really effective drug treatment programme. I was palmed off by doctors, even Rheumatologists, for years because my symptoms weren’t severe enough. They gave me Ibuprofen or diclofenac/naproxen if I was bad.

I eventually went private two years ago and am on methotrexate. However due to lack of effective treatment for years, I now have moderate to severe, permanent arthritis in my wrists.

@ememem84 I had negative tests for years which I think added to the inaction of my doctors. One doctor mentioned sero-negative RA which I think doesn’t show up in blood tests.

@motheringshites interesting. “My” gp who I saw after having ds (2 years ago) sent me for x rays and bloods. All tests negative. The gp I saw yesterday suggested a “reactionary” arthritis he likened it to a ptsd like symptom after childbirth.

About 7/8 months after having ds it all went away. And has reoccurred now. So it’s a wierd one. Doesn’t make me think it is RA because it’d be there all the time. Which it isn’t. And doing things like riding and weights at the gym doesn’t aggravate it.

I’m going for accupuncture to hopefully ease the inflammation in a couple of weeks.

Practical as well as emotional help will probably be helpful. My friend has it. She struggles with anything heavy so has small cartons of milk, a small kettle, lightweight pans, lightweight vacuum cleaner. She finds it hard to put the bins out and struggles to open lots of packaged items. Any lifting and opening you can do will help.

She swims every day which is helpful, but needs to use a warmer pool than you tend to get in local leisure centres.

She gets the meds right for a bit but then gets a flare up and needs different ones and then repeat.

@eminem84 there are other types of inflammatory arthritis. I have psoriatic arthritis. Do you have psoriasis at all? Look at the Versus Arthritis website. It describes the main types AND and some other conditions that are similar.

I literally developed a sore inflamed elbow when I was 33, went to drs, they thought tennis elbow, take anti inflammatories , less than 2 weeks after that got into my car as normal drove my 20 minutes to work and virtually could not get out of the car I was so stiff! I didn't have psoriasis until later so diagnosis was slow. But I do have it fairly mildly.

I had my babies finally 4 years ago and had a terrible relapse after about 6 months after birth so then started on methotrexate after about another 6 months of asking! It for me is a wonder drug. Before that as I was trying for a family I was relying on diclofenac and pain killers only and occasional steroids.

Again look at the versus website, it's a good resource and can help you to understand it more fully. If she has a rheumatology nurse she could be a good call also.

As a pp said its the fatigue that's the worst for me.... but again get the right meds and it can be improved. Good luck to your sister

Wow. Thank you so much to all of you, you’re all very kind for sharing your stories.

I don’t think she is on medication yet but might be my lack of understanding.

I’m getting loud and clear message to avoid pushing anything alternative, which suits me fine. I think a lot of people are fooled by a lot of things for a lot of problems. She’s pretty sensible so I’m sure will follow doctors advice.

Such a shame it is so badly understood. Arthritis is definitely something you remember your grandparents having, it’s quite strange to think it is hitting women who are so young, and changing the course of their lives potentially.

Thank you all. I feel much better equipped and am going to check all these things out.

My dad was diagnosed with it about 12 months ago. He's on Methotrexate, and takes daily folic acid to deal with the nausea from it. He has good and bad days, and gets tired a lot more quickly than he used to. He also gets really down, but he goes every 6 weeks to see the RA specialist nurse and she's been invaluable in terms of help/support. I'm also very vigilant about keeping germs away from him as his immune system is so compromised.

I've found the best support is offering to do shopping and housework when he needs it, and just keeping him company on the days he's really low.

I have it too. I was diagnosed 8 years ago, post birth at 34. Being in constant, chronic pain is debilitating, exhausting and terrifying. She will be worried about what the rest of her life might be like, she will find the prospect of disability and ongoing pain incredibly hard. This will affect her mood. She will be tired but sleep won’t help because it might aid stiffness and there are very few really effective painkillers for the utter bone splintering pain of a flare. Be there for her, encourage her to research and seek out a top medical team and the drugs that she is offered. The upside of having RA is that it is well funded and researched and there are very effective drugs, some come with side effects but they will help her pain and she will be able to live a normal life. Help her to really manage her overall wellness and her health, fight for treatment and avoid being fobbed off. There is no need for her to be in pain. Her GP or consultant can prescribe oral steroids whilst her meds bed in, she can have steroid injections and all sorts of hydrotherapy. She can and should join online support groups dog the very best tips of how to manage through to a point where she can achieve remission. Your job is the help and support and encourage her. I have no joint damage at all, and mine is really aggressive, early diagnosis and drip therapy is the very best thing. I hve been in remission for almost three years, there are still hurdles but it’s ok, there are worst things to have. It’s very hard when you are suffering with something that is invisible, particularly as a mother when you feel thy e need to ‘do’ constantly. Allow her to rest, take t kids and give her some down time, she’ll thank you xx