Receiving a new health condition diagnosis can be overwhelming. There can be too much or too little information coming your way and it can be difficult to remember exactly what was said at your medical appointment. All of this can leave you feeling lost.
If you have been referred to see a specialist, we recommend that you write down all your questions to take to your specialist so that you can get the best out of the appointment.
If possible, we highly recommend taking someone else to your appointment as a second set of eyes and ears will help with your understanding after the appointment.
We have curated advice for people who are newly diagnosed or struggling with their arthritis. Here are tips to help with lifestyle adjustments and keeping a positive mindset that we curated from people with arthritis in our private online support groups.
Advice from Arthritis NZ
Keep visiting the Arthritis.org.nz website
Our website is chock full of information on different types of arthritis, including osteoarthritis, inflammatory types of arthritis (rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, and more), as well as conditions that you might not think of as arthritis, but they do have joint pain features, such as gout, fibromyalgia and even lupus.
We suggest you keep coming back to the arthritis.org.nz website to browse the information in bite-sized pieces. Visit a page or section and take the advice and put it into action. Then come back another time to take on the next piece of advice or information.
Keep an eye on the Arthritis NZ YouTube channel
Our YouTube channel has a variety of short and longer videos on a number of topics, curated into playlists so you can find relevant videos. Arthritis New Zealand – YouTube
Use our Arthritis Assist service
If you want to talk to someone who understands and cares, call our Arthritis Assist team on 0800 663 463. They are here to listen and understand your unique situation and will provide information by email or post if you prefer hardcopy.
Join an online private support group
The support groups provide invaluable advice and support from other people living with the same condition. Find a support group to suit your needs Support Groups – Arthritis New Zealand. The advice below comes directly from members of our online support groups.
General Advice (from Arthritis NZ Facebook page)
Be kind to yourself
“Forgive yourself if you don’t accomplish what you wanted to achieve today, be it exercise, sleep, diet or other commitments. Start again tomorrow.”
“Your life will change..it’s okay to grieve who you once were.”
“Take a long, deep breath. Don’t rush into making a lot of changes at once. Take it one thing at a time and only make adjustments that fit with your lifestyle. It takes time to see if a change will help you. You are not alone. Everyone you talk to will know someone also affected. There is a great online community here. Always someone to chat to, even if you just want to vent.
“Be kind to yourself. Know that you can manage; you are stronger than you think.”
Listen to your body
“Every day is different. Some days, it’s as though you have nothing wrong with you and other days, the pain can be exhausting. Be kind to yourself and listen to your body.”
“Take each day as it comes- some days you will feel like ‘normal’ and others will feel like constant pain. Talk to others about it, and always make sure you have a support network for the days when you can’t function. Over time, you will develop your routine.”
“Accept what your body is telling you. You have a whole lot of new information to process and probably new meds to get used to.”
“Listen to your body, keep moving as much as you can, even sitting, keep your legs doing exercises, and I found fish oil tablets worked well too.”
Move slowly and keep moving
“Move slowly when you bend over and then straighten up. Turn over slowly in bed. I have had facet joint arthritis since I was 40. Walking every day has strengthened my lower back muscles, so my facet joints are well cushioned now.”
“Keep moving – movement is my medicine – pace yourself.”
Explore complementary therapies
“Look into medical cannabis.”
Take control of your healthcare
“You are your own best advocate – keep holding your ground if you are being undermined by anyone. Be it a medical person or a friend or a family member. This is from my own experience.”
Educate yourself about pain
“Educate yourself on nociplastic pain and the protectometer – ‘all pain is protection’ and comes from your brain not the affected body part. Pain is not always a reflection of more damage to tissues, it’s your brain’s attempt to protect your body. Thus, acceptable discomfort during gentle exercise and movement does not necessarily mean you are making things worse. I find seated workouts on YouTube to do on days my walking is curtailed.”
“Pain sucks, but it doesn’t need to consume you. You can hurt in unimaginable ways and yet still know implicitly that you’re going to be okay. Make peace with the need to rest, the need to check out of life, and the knowledge that until someone experiences pain at a deep level themselves, they’ll never have the capability to truly understand – and that’s okay, all they need to know is you’re doing the best you can, however you can.”
Advice about eating well and staying active
“Take omega 3 and make bone broth, maintain healthy weight, take curcumin and glucosamine supplements, mild exercise to strengthen the muscle around the joint.”
“I let it determine what I could do, but a lot of that was in my mind. I was diagnosed in my 30’s with arthritis in my knees. I have done a lot of work to strengthen my muscles and joints that support my knees such as ankles and hips and I know no longer need daily medication. This won’t be for everyone but for me it was the shift in thinking of ‘this will not define’ me that allowed me to explore my options and move better.”
“Pace yourself, rest when you need to and don’t be afraid to ask for help.”
“What works for one person may not work for you. What works this week may not next week. Sorry not uplifting but real. What does work is diet and excercise what you enjoy doing to keep you motivated.”
Advice from people with rheumatoid arthritis
“Look at handling stress (maybe as simple as saying no or take a hot bath). Be kind to yourself and when you are tired or in pain rest with a herbal tea or something that feels good to you. Find ways to cope with the crazy times (pre-prepared meals work for me).”
“It can take quite some time to get to know what your dealing with. I had to disregard everything I knew about my body and more or less reacquaint to the new me. It’s a hard pill to swallow but it’s important to allow that for yourself! Be patient and kind to yourself as its hard-going physically and emotionally and mostly invisible to others. Reach out when in need of advice or to vent, it all helps.”
Advice from people with osteoarthritis
“The pain is real, even though it’s all in your brain. (If advanced OA) then slow down on good days and ask for a hug on bad ones. It’s ok to cry when you feel sorry for yourself, and then carry on.”
“Keep moving as much as possible. We have to do this for ourselves. Walking or chair exercises and hopefully a positive attitude but that’s hard sometimes.”
“Don’t count on your GP to fix it. Many just dispense pills…hard to do much more in a 15 minute appointment. Try everything. Different things help different people. Exercise is important. A good physio or trainer may be worth it if self help exercise programmes don’t succeed, and may also be good for recommending supports. A new bed or supportive pillow is worth considering, especially for back, hips and shoulders.”
“Just keep yourself warm, especially your joints. Get yourself a pair of wool fingerless gloves and warm wool socks for wintertime.”
“I’ve had two knee replacements and for years lived with chronic pain prior to that. The main thing I think is to keep moving one way or another. Even now I know I have to exercise or one of my knees gets grumpy. Somebody said once “motion is lotion” So hard when you’re in pain I know. Even if it’s just short bursts.”
“To still let yourself do what you enjoy until you can’t anymore . Be gentle on yourself.”
“I suggest an Elimination diet to discover any foods that cause you joint pain. I had no clue until I did this that nightshades cause pain in my joints! Even that sprinkle of paprika “for colour!”
Advice from people with psoriatic arthritis
“It does get better with the right medication. Be your own advocate – no one else knows you as well as you do. Try not to give into the ‘why me’ blues. Being miserable can make you feel worse, find a thing you CAN do that makes you happy.”
Advice from people with lupus
“Never feel guilty resting….don’t feel handicapped or trapped…..find things you are happy to do that give an easier life style. Be brave when faced with negative comments – you know your own worth so don’t try to be anyone else’s worth. And remember you will become an authority on living in pain – wear that with pride.”
“Sleep is how your body heals, if it needs it give it lots! Never feel guilty about having a nap.”
“If you change or add something, try to do one thing at a time because if you do two you don’t know which one is helping.”
Living well with arthritis can seem like a hard-to-reach goal, especially when you are first diagnosed. You may feel discouraged and wonder how you will manage living with pain every day. The truth is, it takes time to find the best combination of medications, treatments and lifestyle modifications, such as exercise, to help you cope with pain and live well with arthritis. There is no single remedy for everyone and finding the best combination is a journey. Living well with arthritis – Arthritis New Zealand