What positive things can I say to a friend who has be... - NRAS

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What positive things can I say to a friend who has been diagnosed with RA

15 Replies

A very good friend of mine, previously active and energetic has been diagnosed with inflammatory arthritis. He is about 60 years old and has never suffered any joint pain before. The onset was alarming rapid apparently from no pain to all joints in pain in a matter of weeks with significant restriction in movements. He is awaiting the results of blood tests etc but everything seems to point to RA. I have had OA since I was in my 30s and now in my 60s and following knee replacements etc have become accustomed to pain but for my friend it is a new experience. I want to be positive when I am speaking with him but he is no fool so I need to be upbeat without being dismissive of his fears. Any thoughts would be much appreciated. Thank you.

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15 Replies
LuckysJoy profile image
LuckysJoy

Hello I am so happy to hear you have this concern. As I have RA and Fibromyalgia and Most of my friends have abandoned as they can't understand I guess

Now to your question. I would just suggest to say something like. "I can't possibly understand what your going through. Or how you are feeling" But Know I am here for you and If you ever need someone to talk to or if there is anything I can do to help. Please ask as I will not leave you :). That would mean the world to someone like us. Prayers for your friend. Lisa

in reply to LuckysJoy

Many thanks for your reply Luckysjoy......its valuable to be made aware of your personal experiences although its sad when friends can't identify with your problems. I am learning a lot about RA that I didn't appreciate before, my sincere thanks and best thoughts to you for the future.

Hello and what a good friend you are! :). I would just like to agree with everything Lisa has said, I know from my own personal experience it means so much to have someone listen to you and to appreciate there are days you feel like rubbish and may have to cancel on a day or evening out even though you look perfectly well.....also being newly diagnosed is so mind blowing as there's so much to take in.... what didn't help me was people saying " well it's just a bit of arthritis'. I think a good friend would do just as you're doing by finding out as much as they could about RA so they could be there and have empathy. My very best wishes to you and your friend, maybe when they're ready they could post on here as they would get lots of support also.:)

in reply to

hi Amanda88 , much appreciate your thoughts that I will certainly take into account when I see my friend tomorrow. I guess that simply listening will be useful and I expect and hope that he will be able to unburden some of his worries.

helixhelix profile image
helixhelix

Yes, I wish I had more friends like you! RA can come on at shocking speed, and it's frightening as you really do fear the worst. When I was first diagnosed I thought that it would be the end of life as I knew it, and I had visions of being in a wheelchair very quickly. Anyway, it wasn't and I'm not. In fact I'm 95% ok again, and my bottle of painkillers has dust on it. So you can be a bit upbeat as the modern treatments can be very good. My best friends have always asked about what I'm worried about, and encouraged me to talk about my fears, and have reassured me that they'll help no matter what, and always ask whether there are little things they could do. They also seem to understand how variable this disease is, so you can have a rubbish day where you can hardly move, and then be back walking the dog the next. I think a big difference between OA and RA is not about pain levels, as both hurt, but that RA can also makes you feel totally, completely and entirely shattered. And it's hard for friends to understand that you can look fine, but really not have the energy to do more than say hello. But sounds like you're a great friend, so I'm sure you'll be a huge help. Polly

in reply to helixhelix

Hello helixhelix, delighted to hear of your encouraging experience which will be useful to quote if my friend is understandably depressed. Until a while ago I thought that the difference between RA and OA was simply about pain levels and differing deformation of joints but I am much better informed now. This site and the posted issues should be essential reading for anyone trying to understand this condition. Thanks again for your constructive comments.

watson3 profile image
watson3

You sound like a great friend. The fact you are trying to arm yourself with as much information as possible makes you a good friend to have around. Just being there when things are tough, telling him you will attend his appointments, if he wants you to.

Support him in his search for upto date info on medicines at the forefront of RA control. Show him this site and let him read the really positive posts of many on this site.

Best Wishes

Carole

in reply to watson3

Hi Watson 3 / Carole.....thank you for your thoughts and ideas which I will certainly take up. You make a good point regarding medicines. It is understandable that this new experience will tend to make him feel a victim but I guess that understanding his condition and available drugs and treatments will help him to feel more in control of his condition.

cathie profile image
cathie

The best advice I was given when I was diagnosed was to try to do one thing every day, not to overdo things. What we call pacing. Inflammation seems to worsen with stress. And they may get comfort in knowing that with the right meds you can lead a relatively normal life. It's good to keep exercising and not to be afraid of that. Tai chi has helped me but find a good teacher. And I'd love to have a. Friend who is prepared to listen and be there for the long term. Oh and remember that this disease tends to be different for each individual, so something that works for most of us, may not or vice versa!

in reply to cathie

Hi Cathie - when I saw my friend a couple of days ago I was grateful to use some of the useful ideas and comments made by people like yourself who contribute their thoughts on this site. I think it was very useful to get over that whilst he might have to accept some limitations there is much he can still do and as you say, once they get his medication right things should improve.

cathie profile image
cathie

Sorry I was late in coming to this, I'm on holiday in southern France. Doing things I didn't think I'd be able to! I hope your friend joins this list.

Bleakin profile image
Bleakin

I totally understand your anxiety on how to help your friend. I was frightened & v angry leading up to the diagnosis of RA, and what was happening regarding pain in various parts of the body. This is my take on an approach, 2yrs into having being diagnosed with the disease. I also have OA.

- once diagnosis, & consultants find right medication, usually DMARDS, presuming it's RA, this should get the pain under control, so the person feels some kind of normality again. Buy a note book to record symptoms, things to discuss with consultants, and record how your feeling, blood readings etc ( or on excel if you want to turn data in your own graphs - this becomes a target motivator).

- then slowly try to take control of things that aren't RA drug related. Diet is important and discussed by so many people with autoimmune conditions. I went on a full tilt Autoimmune diet to help control the inflammation for 6 months, and I'm still on a Paleo diet. You don't need to buy diet books, just look on the websites for Autoimmune diets/recipes. It's a good chance to turn your life around also, I lost nearly 3 kgs. Both these measures, diet and weigh loss help with controlling the inflammation and therefore pain relief.

- look at other ways to take control, and get inflammation down. A lot of people in RA community take fish oil, Tumeric/Curcumin in a gold paste with pepper ( there is lots of info out there), probiotic. I went to see an nutritionist, and had tests to see where I was deficient, rather than taking lots of random pill.

- check online, there are others who document their illness and inspire hope < while your still feel bad> for both recovery, living well, and use their sites as platforms for the medical profession, usually function medicine practitioners, usually in America, to talk about RA. See for eg phoenixhelix.com.

- excercise - support your friend by helping them get back to being active, perhaps, once the medication controls the disease/ pain subsides. Swimming, walking and talking are all good.

- then once your friend is all over the topic of RA, it will help him feel in control, however with RA, it's always possible it's going to throw you a curve ball, so you have to be on your best behaviour with all of the above, all of the time.

Kai-- profile image
Kai-- in reply to Bleakin

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Like the way you think, Bleakin. ☺️ 👍👍

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If I may supplementally add to your reply to this 4-year old post, (just as insightful/ applicable/ relevant today as it was back then) . . . that more 'mature' folks may want to have a look-see at what some of us ole' farts (said lovingly with a wink & a smile 😉 ) have been able to do (while those around us disapprovingly chanted "nay, nay, nay") 😯 :

👵 Sally: healthunlocked.com/cure-art...

👴 andyswarbs : healthunlocked.com/nras/pos...

👵 AARA : healthunlocked.com/nras/pos...

👵 Lyn & 👵 Cecilia: healthunlocked.com/cure-art... (Scroll downward on page for their videos.)

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For anyone who may stumble on this post (days, months, years down the road), kindly consider it's 'never too late' to lovingly 💓 help our body move toward improvement/ healing. 🙏 😌

Any improvement — no matter how seemingly slight, minuscule, 'insignificant' to onlookers — is greatly appreciated by those of us living within damaged/ ravaged bodies. 😌 🙏

Every little bit helps & is gratefully, blessedly appreciated. 🙏 🍀 🌺 🌞

.

Bleakin profile image
Bleakin in reply to Kai--

Thanks Kai, the posts look interesting. At times I get so bored with having this disease & trying to stay positive. I'm trying to follow my own advice now. I've taken MTX FOR 13 mths and now got something really v wrong with my lungs that an X- Ray & breath function test, ECG, & bloods haven't revealed. I even had to go to A & E in London yesterday because of the pain, but I'm all good on the surface, just something wrong with my with my lungs they couldn't find (except mild Costochondritis - nothing mild about the pain). The GP @ A&E even queried whether I had intergestion - they're doing their job, illuminating everything I guess. I just have to wait for lung specialist.

Kai-- profile image
Kai-- in reply to Bleakin

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Oh no, oh no . . . very, very sorry & concerning, Bleakin. 😳 🙏

Lungs/ breathing are nothing to mess round with. 😯

Yes, yes, glad you went to A&E pronto. 👍👍

.

If you want to research more on lung 'possibilities' (without scaring the bejesus 😱 out of yourself), consider exploring:

• British Lung Foundation: healthunlocked.com/blf

orchidcass77 's 'Rheumatoid Arthritis - Interstitial Lung Disease' Facebook page: facebook.com/rheumatoid.lung/

.

Wishing you the very best, Bleakin. 🙏 🍀 🌺 🌞

Breathe easy 🌬 💨 😌 .

.

Supplementally, don't know if you already saw this infographic noting 'respiratory symptoms' & 'lung disease': DMARD Infographic: Methotrexate (MTX), Leflunomide (LEF), Sulphasalazine (SSP), Hydroxychloroquine (HCQ): healthunlocked.com/cure-art...

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