Testing, diagnosis, treatment plans, medication, surgeries, special diets, and even the little things like buttoning a shirt or walking up stairs — navigating the world of arthritis can be completely overwhelming. And while your doctors and family and friends mean well, they aren’t living with it. You can read all the books, google everything you can think of, and take non-stop notes during all your appointments with specialists, but nothing can quite prepare you for the reality of living with arthritis.
Thankfully there is a whole group of people in the CreakyJoints community who has been in your shoes and is happy to share the lessons they learned so you don’t have to learn the hard way, like they sometimes did.
So we asked people with all different types of arthritis to share the little things about managing their disease that they wish they’d known sooner. Here are their top tips:
1. Take it easy
Rest! Rest, rest, rest, rest when you need to. — Anne on the CreakyJoints Facebook page
2. A good support group is powerful medicine
“I live in New York City and so I have to walk a lot, but there are days when my arthritis is flaring up that I need help to get to work or go to the grocery store. I used to feel too proud to ask but my friends and family are so kind, it makes a huge difference knowing I can depend on them. I stay more mobile knowing I can always call for help if I need it.” — Jen P., New York City, psoriatic arthritis
(Here’s how to find an arthritis support group near you.)
3. Get a handicapped parking permit
“I wish I had gotten a handicapped parking permit and asked my job for disability accommodations a lot earlier. It can be embarrassing. I get it. I was diagnosed when I was 20. No one wants to see a healthy-looking 20-year-old jump out in a handicapped spot. But I could have saved myself so much pain if I’d done it sooner.” — Jen P.
4. Arthritis can be crazy expensive
“I wish I had known how expensive living with arthritis is. Getting a proper diagnosis was expensive, but it’s the day-to-day stuff that’s killing me. All of my copays to different doctors, special tools like jar openers, and aids for my house like assistive chairs — it all adds up fast. Look into supplementary insurance.” — Michael S., Salt Lake City, Utah, osteoarthritis
(If you’re frustrated about the cost of your health care and want to take action, become a patient advocate in our 50-State Network.)
5. Even a med that works may not work forever
“I’ve tried 11 different drugs to help manage my PsA. Some didn’t work at all. A few worked for a while but then stopped working. My favorite one I actually became allergic to. Finding the right meds isn’t as easy as getting a pill, you have to stay in constant communication with your rheumatologist.” — Jen P.
6. Don’t be afraid to switch treatments if yours isn’t working
“I wish I had known certain RA drugs wouldn’t work for me. I would have started alternative treatments as soon as I was diagnosed. If something isn’t working for you, try a different approach.” — Alison M., New York, rheumatoid arthritis
7. Arthritis isn’t just something the elderly have to worry about
“I was so naive, I always thought arthritis was an old lady thing and just affected the hands. Because it affects my back and hips, and I don’t consider myself ‘old,’ it took me a long time to figure out what the problem is. Now that it’s almost crippled me, I find myself wondering if there something I could have done if I was diagnosed sooner.” — Lisa G., Westminster, Colorado, osteoarthritis
8. Dr. Google isn’t always the best resource
“It’s hard trying to find good information. Doctors are busy and hard to get a hold of, so I tried going online. Googling info is overwhelming and hasn’t answered any of my questions. Plus it’s hard to know what you can trust and what you can’t.” — Lisa G.
9. Take advantage of being active while you can
“I wish I’d known when I had my first hip replacement at age 28 that those were going to be the ‘golden years’ with my arthritis. I would have traveled more, done some extreme sports and run with my kids more. I thought it was tough then but it’s so much harder now. I’ve had two hip revisions, four femur surgeries and a total hip, femur, and knee replacement and am praying I will be able to walk after rehab is over. ” — Alison M.
10 .Don’t underestimate the power of an anti-inflammatory diet
“I wish I had known about diet helping inflammation. I would have started earlier and maybe saved some joints from replacement a little longer.” — Alison M.
11. Get to be good friends with your physical therapist
“I wish I had known just how much time I’d spend in physical therapy! But it helps so get to your PT and listen to their advice.” — Alison M.
12. Get a second or third opinion
“I wish I knew that getting diagnosed isn’t necessarily a cut-and-dried thing. There are so many different types of arthritis and even the specialists can have a hard time telling them apart. I was first diagnosed with rheumatoid arthritis and now they just changed it to psoriatic.” — Carmen M., Los Angeles, California, psoriatic arthritis
13. Give pot (Cannabidiol oil) a try
“I wish I hadn’t been so scared of ‘pot.’ CBD oil has helped me so much with the pain and nausea I get as a side effect of my meds. I know it sounds weird but it’s not the kind of pot you get high from, and it’s provided a lot of relief for me.” — Carmen M.
14. Watch out for depression
“I am in pain all the time. People don’t understand what living with chronic pain is really like. I’m in hell every day and I feel like I have no one to talk to about it. Last year I got really depressed but I was so focused on treating my arthritis I didn’t think to get help for my depression until my doctor brought it up.” — Melissa P., Minneapolis, Minnesota, rheumatoid arthritis
15. Exercise can really help
“Once I got on medication and started eating an anti-inflammatory diet, I was able to start exercising. I started with just walking and discovered it helped reduce pain. Eventually I moved up to running and I just did my first 5K race. Eating well and exercising is hard but not as hard as being in pain all the time.” — Melissa P.
16. Pay attention to the smaller joints too
“Weirdly, the place I feel the most pain is in my jaw. Thankfully my dentist recognized it as arthritis and sent me to a specialist. I just got a diagnosis and it has helped explain so many things.” — Martin T., Seattle, Washington, spondyloarthropathy
17. Get a wedding band with a hinge
“My knuckles swell every so often and makes it hard to wear my wedding ring, which my wife wasn’t exactly happy with. You can ask a jeweler to put a hinge on the band making it easy to take off and on.” — Martin T.
18. Arthritis isn’t just joint pain
“I wish I had known that arthritis has more symptoms than just pain and stiffness in the joints. I had this weird collection of symptoms that I couldn’t explain, like sores in my mouth, eye issues, flaky skin, and problems peeing. My general practitioner first said maybe it was AIDS?! I guess that was one way to make me grateful to get an arthritis diagnosis.” — Kate S., Houston, Texas, reactive arthritis
19. Don’t push yourself
Take it easier on your body. Limit mowing, shoveling, lifting … every sports injury counts later. — Linda on the CreakyJoints Facebook page
20. Even over-the-counter meds can have life-changing side effects
“I wish I knew that NSAIDS, like ibuprofen, would give me kidney disease. I would have tried to deal with the pain without pills.” — Mary R., Westerville, Ohio, osteoarthritis