Here’s a free collection of resources on Rheumatoid Arthritis- Arthritis blogs, videos, support groups, first-hand experiences and advice from people who have Rheumatoid Arthritis, etc.
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- Rheumatoid Arthritis Blogs
- Rheumatoid Arthritis Support Groups
- Rheumatoid Arthritis Survey
- Rheumatoid Arthritis Symptoms
- Rheumatoid Arthritis Causes
- Rheumatoid Arthritis Interesting Facts
- Rheumatoid Arthritis Pain Relief
- Rheumatoid Arthritis Difficulties
- Rheumatoid Arthritis Advice
- Rheumatoid Arthritis Recommendations
- Rheumatoid Arthritis Resources
Rheumatoid Arthritis Blogs
Here’s a collection of Rheumatoid Arthritis blogs- written by people with Rheumatoid Arthritis, or about RA.
Rheumatoid Arthritis Support Groups
RA Support Groups On Facebook
- Rheumatoid Arthritis Support Facebook Group (13,390 members)
- Rheumatoid Arthritis (RA) Squeaky Joints Group (10,281 members)
- Rheumatoid Arthritis Managed Naturally Group (6,909 members)
- Rheumatoid Arthritis *RA* FACES OF RHEUMATOID ARTHRITIS Group (4,690 members)
- Fighting Rheumatoid Arthritis Group (4,543 members)
- RA Support Group (3,590 members)
- FIGHTING WITH RHEUMATOID ARTHRITIS Group (2,449 members)
- Rheumatoid Rioters Group (2,332 members)
- Rheumatoid Arthritis Group (1,780 members)
- RA Strong & Autoimmune Group (1,427 members)
- Women With RA, Multiple Scleroses, Lyme, Autoimmune Group (1,226 members)
- RA for Dummies Group (1,116 members)
- Juvenile Rheumatoid Arthritis Awareness Group (1,002 members)
- Rheumatoid Arthritis UK Group (869 members)
- R.A.W.- Rheumatoid Arthritis Warriors Group (559 members)
- Rheumatoid Arthritis and Fibromyalgia Support Group (556 members)
- RA Tray (Loving Rheumatoid Arthritis Support Group ) (552 members)
- Athletes Beating Rheumatoid Arthritis Group (426 members)
- Treating Rheumatoid Arthritis Naturally Group (361 members)
- Rheumatoid and Osteo Arthritis Australia Group (346 members)
- Rheumatoid Arthritis Sucks Facebook Group (275 members)
- Rheumatoid Arthritis (RA) LOVE, LAUGHTER & FRIENDSHIP Group (242 members)
- Runners with Rheumatoid Arthritis Group (200 members)
- Mums With Rheumatoid Arthritis ( Australia) Group (186 members)
- Rheumatoid Arthritis Babe (RA Babe) Group (179 members)
- RA Divas & Gents Group (172 members)
- RA (Rheumatoid Arthritis) HATERS Group (115 members)
- Rheumatoid Arthritis: Our Voices Group (112 members)
- Rheumatoid Arthritis Aussie Rheummates Group (101 members)
- RA Strong Group (100 members)
- Mommies with Rheumatoid Arthritis (RA) Group (90 members)
- RA Rockstars (team formerly known as Bert’s Blessings) Group (85 members)
- RA Mommies Group (66 members)
- Rheumatoid Arthritis (RA) Support for Pregnancy & TTC Group (65 members)
- Rheumatoid Arthritis Mothers Chat Group (43 members)
- RA. Rheumatoid Arthritis Group (38 members)
- Rheumatoid Arthritis and Chronic Illness Support Group (34 members)
- Rheumatoid Arthritis Support Group (29 members)
- Above Rheumatoid Arthritis (RA) Group (20 members)
Google Plus RA Support Communities
- Rheumatoid Arthritis (RA) Community (883 members)
- Raising RA, Lupus & Fibromyalgia Awareness Community (350 members)
- RA: Sharing Your Skills Community (285 members)
- RHEUMATOID ARTHRITIS ADVICE Community (200 members)
- Fibromyalgaia and Rheumatoid Arthritis Community (185 members)
- RA Our Fight Against Rheumatoid Arthritis Community (147 members)
Other RA Support Groups And Forums
- Arthritis Support Group (17,198 members, 6,302 posts)
- Arthritis Foundation Group (13,861 members)
- HealthUnlocked National Rheumatoid Arthritis Society (12,342 members, 17,323 posts)
- Rheumatoid Arthritis Sub-Reddit Forum (1,560 members)
- Drugs.com Rheumatoid Arthritis Support Group (875 members, 1,104 posts)
- Daily Strength Group (846 members, 15,281 posts)
- WebMD Rheumatoid Arthritis Community
- MD Junctions Group
- Caring.com Rheumatoid Arthritis Caretakers Group
- In-Person Meet-Ups In The United Kingdom
In-Person Support Groups In The United States
Arthritis Introspective Support Networks (Click link to become a member, view local meet-ups, etc.): Phoenix, AZ, Tucson, AZ, Fresno, CA, San Fernando, CA, San Francisco, CA, Los Angeles, CA, Denver, CO, Jacksonville, FL, Miami, FL, Springfield, IL, Fort Wayne, IN, Downeast, ME, Maple Grove, MN, Las Vegas, NV, Harrisburg, PA, Venango, PA, Dallas, TX, Houston, TX, San Antonio, TX, Seattle, WA, Madison, WI, Milwaukee, WI.
Rheumatoid Arthritis Survey
We’re surveying people about their experiences with Rheumatoid Arthritis (RA). Here is a collection of their responses.
*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!
*Response format = Answer (Name, Time With Rheumatoid Arthritis)
**Click here to share your experience with Rheumatoid Arthritis**
Rheumatoid Arthritis Symptoms
What RA symptoms have you experienced?
- Joint pain and stiffness, inflammation, fatigue, swelling, deformed joints. (Ila H., 50 years, diagnosed April 1966)
- Joint pain, swelling, redness, joint deformity, dry eye, dry mouth, stomach issues, hair loss. (Lorna, 37 years)
- Pain, Felty Syndrome, blood clot, crippling, rashes, blurred eyesight. (Anonymous)
- Lots of swelling and redness, being in pain A LOT. (Carla P., 24 years)
- Pain, inflammation, limited movement. (Samantha W., 20 years)
- Pain in my feet, my hands, my neck, my elbows. Morning stiffness of my knees and hands. Pain in my jaw. (Roschell, 19 years)
- Pain, stiffness, deformities. (Chrissi C., Since I was 16 months old)
- Joint pain, raspy voice, Episcleritis, fatigue, brain fog, nodules, osteopenia, frequent infections. (Wendy, 16 years)
- All of them, I think. My hands are deformed. (Dottie G., 16 years)
- Pain, fever, inflammation, rash, red hot joints, headaches, chills, nodules, deformities, bone loss, loss of movement, brain fog, sjorgens. (Rebecca, 16 years)
- Pain, swelling, infection, fatigue, stiffness. (Dee, 15 years)
- Inflammation, swelling, pain. (Patricia W., 15 years)
- I was 35 when I was diagnosed with RA and Fibromyalgia. At first it was inflammation and my being able to make a fist or raise my arms, because of the swelling. It’s progressed and now, at age 49, I cannot work a normal job, stay on of my house and washing, and spend many days laying in bed, crying from the VERY intense, sharp, consistent shooting pains. The doctors had me on 10mg Norcos for pain…two every four hours or as needed. After 10 years I quit them cold turkey. I couldn’t stand being so dependent. So, I have Icy Hot or Ben-Gay in every room, drawer, nook and cranny, and I take Motrin or Ibuprofen. On the really bad days, those two things, a heating pad and the bed are my best friends. I have no insurance, so I have just adjusted to the lesser quality of life, pray a lot, and do the best I can. (Denise P., 14 years)
- Stiffness, exhaustion, kidney malfunction. (Zuleika R., 12 years)
- Pain, swelling, fatigue, anemia. (Nicola, 12 years)
- Joint pain, stiffness, extreme fatigue, swelling, blood in urine, rheumatoid nodules, dry eyes and dry mouth (sjorgrens symptoms), flu-like symptoms. (Brenda, 12 years)
- Painful joints, red and swollen joints, fatigue, frequent headaches, blurry vision, weak muscles, inflamed tendons, lack of concentration, dizziness, confusion, insomnia, anxiety, depression. (Laura, 12 years diagnosed)
- Joint pain, wide-spread granuloma annulare, fatigue, rashes, numbness in feet and hands, Raynauds Syndrome, lung problems, gluten intolerance, many drug, food and environmental allergies, anxiety, depression, weight gain, loss of mobility, fear. (Marianne H., 11+ years)
- Fatigue, swelling of joints, muscles and tendons. Loss of muscles. Used to lift 50 or more pounds. Now 10 or less. Pain like no other, etc… (Suzanne, 10+ years)
- Joints swollen, hot pain. (Barbara, 10 years)
- Chest pain, hip pain, knee pain, fingers ache and are starting to twist. Have node on one of my finger joints. Muscles get weak in legs and arms. (Kelly D., 9-10 years)
- Swollen joints and fatigue. (Kimberly, 8 years)
- Fatigue, body-wide joint pain, deformation in left foot/toes, in general feeling unwell, sores and infections. (Sarah K., 8 years)
- Seizures, rashes, joint pain. (Amy K., 7 years diagnosed)
- Extreme pain, muscle aches and chills. (LaTrece, 5+ years)
- Tender, sore, stiff joints. (Kim G., 5 years)
- Joint pain…mostly in my hands and wrists. On occasion it had gotten so bad that I couldn’t walk because my feet hurt so bad. (Stacy, 5 years)
- Pain and swelling in joints, fatigue, depression. (Gayle, 5 years)
- Swollen joints, tmj, stiff neck, fatigue. (Brenda, 7 years)
- Fatigue, brain fog, stomach issues, painful swelling joints, feverish and depression. (Katie, 4 years)
- Severe pain, gingivitis, tooth decay, severe fatigue, depression and anxiety, asthma attacks, muscle spasms, blurred vision, stiffness, joint pain, swelling and tingling, numbness, resistance is low, frequent low-grade fevers, frequent infections. (Shanna, 4 years)
- Pain in hands, feet, knees. Fatigue, brain fog. Lung problems. (Jim K., 4 years)
- Joint pain, fatigue, fevers, anxiety. (Lisa M., 3+ years)
- Stiffness, swelling, fatigue, pain in joints, burning in joints. (Libby B., 3 years)
- Inflamed wrists/hands with lots of pain. Two always swollen knees- unable to walk comfortably- especially up and down stairs. Swollen ankles/feet- some days I can’t wear shoes. Fatigue/frustration. Some mornings it’s hard to get dressed- especially putting on a bra and brushing my hair. (Lori, 3 years)
- Pain and swelling in my thumbs, elbows and knees are my biggest problem areas. Lots of extreme fatigue. (Anonymous, 3 years)
- Fatigue, pain, swollen joints, stiff joints. (Ruth, 3 years)
- Pain in joints, swelling, fatigue, brain fog, vision issues, headaches, loss of mobility in hands, legs and feet, loss of appetite and illness related to medications and pain. (Tina, 3 years diagnosed)
- Joint pain, joint stiffness, loss of range of motion, inflammation. (Michelle, 2-3 years)
- Joint pain, tendonitis (elbows/bicep tendon), bursitis (hips), fatigue, abdominal pain, GERD. (Anonymous, 2.5 years)
- Inflammation, pain, swelling, cramping, stiffness, limited use of elbow, fatigue and numbness in fingers. (Mauree J., 2 years)
- Joint pain and swelling. (Jaimie B., 2 years diagnosed)
- Stiffness and throbbing in hands and feet; lower back pain, starting in ankles and wrists. Fatigue, pain, poor sleep has worsened over the years. (HB, about 2 years diagnosed)
- Stiffness, joint pain in my hands, feet, ankles, elbows, wrists, shoulders and hip. Muscle pain, fatigue. (Steve, 20 months)
- Morning stiffness, fatigue, pain, immobility, malaise, flu-like symptoms, dry eyes. (Emma W., 1 year)
- Neck, shoulder pain. Reduced strength in hands and wrists. Reduced range in shoulders. Tired all the time. Mild depression. (Paul, 1 year)
Rheumatoid Arthritis Causes
Is there anything you believe contributed to your Rheumatoid Arthritis?
- I had pneumonia at 10 months old and also rheumatic fever when I was young. I have always wondered if there was a link. (Ila H., 50 years, diagnosed April 1966)
- I believe stress, high use of antibiotics as a child, childhood strep throat. (Lorna, 37 years)
- My family genes. (Anonymous)
- My pregnancy. (Carla P., 24 years)
- Mother smoking while pregnant with me. (Samantha W., 20 years)
- No. (Roschell, 19 years)
- No. (Chrissi C., Since I was 16 months old)
- Bad marriage and childhood abuse. (Wendy, 16 years)
- Yes. I took depo shots for birth control after my daughter. Within two years, I was found to have RA. I found in the small print a risk for it, especially if you have family members with RA. (Dottie G., 16 years)
- Septic hip before onset. (Rebecca, 16 years)
- It runs in my family & our childhood home was on a superfund site. (Patricia W., 15 years)
- RA, Genetics, Fibro, head on car collision. And 15 years behind a chair in my own salon. (Denise P., 14 years)
- Not really. (Zuleika R., 12 years)
- Yes, I smoked when I was young. (Nicola, 12 years)
- A tetanus shot and the year it started the farmer next to my house was growing buck wheat. (Brenda, 12 years)
- Major surgery including small and large bowel resection 6 months before my diagnosis. Major car accident about 6 years before my diagnosis. (Laura, 12 years diagnosed)
- Trauma. Severe child abusers, the murder of my mother, the death of my father. (Marianne H., 11+ years)
- Getting old. (Barbara, 10 years)
- I will quote my family doctor and say I did not ask for this and neither did anyone else. (Kelly D., 9-10 years)
- Hormones. (Kimberly, 8 years)
- My symptoms started shortly after receiving the first shot for HPV. Unsure if they are related, but interesting timing. (Sarah K., 8 years)
- Stress and grief. (Amy K., 7 years diagnosed)
- Emotional stress at one point of my life. Possible link to rheumatic fever as a child. (Brenda, 7 years)
- Lifestyle: damage to my body throughout the years. (LaTrece, 5+ years)
- I was a former smoker! Auto immune in my family! (Kim G., 5 years)
- Stress. (Gayle, 5 years)
- Extreme ongoing stress, first husband had a complete nervous breakdown, second had multiple sclerosis and the third a gambling addiction. (Katie, 4 years)
- I had breast cancer at the age of 25, I had massive amounts of chemo and radiation. I believe this may have started something which triggered my ailments. (Shanna, 4 years)
- Probably life style has been a major factor. Not eating correctly, working in a stressful environment. Also personal stresses losing parents to a long illness, losing a grandson suddenly- all stressful situations that sometimes your body cannot cope with. (Jim K., 4 years)
- Stress. (Lisa M., 3+ years)
- RA is in my family. (Libby B., 3 years)
- Being overweight for most of my life? Over doing things in life- like lifting, moving stuff I shouldn’t have, but had to. (Lori, 3 years)
- Genetics. Mine definitely runs in the family. (Anonymous, 3 years)
- Smoking, family history, poor diet. (Ruth, 3 years)
- I was CDC positive for Lyme disease which was causing my RA. (Michelle, 2-3 years)
- Environmental, dietary sources. (Anonymous, 2.5 years)
- Arm implant birth control. (Mauree J., 2 years)
- Nope. (Jaimie B., 2 years diagnosed)
- I think it could be hereditary, some genetic factor, injury from a bike accident which spiraled an inflammatory cascade, age and hormone changes after my hysterectomy. I believe there is a trigger could even be an allergic response or virus that is dormant which is activated. It is multifactoral. (HB, about 2 years diagnosed)
- No. (Steve, 20 months)
- Family history, virus. (Emma W., 1 year)
- Stress, crash diet. (Paul, 1 year)
Rheumatoid Arthritis Interesting Facts
What are some interesting facts you’ve learned about Rheumatoid Arthritis?
- RA is a horrible disease! I certainly hope my children and grandchildren never have to experience it. However, if you can remain positive, it helps. You can have RA “but it doesn’t have to have you”! I have also learned if you are diagnosed with RA, the possibility of getting other autoimmune diseases is high. I wasn’t aware of that for many years. (Ila H., 50 years, diagnosed April 1966)
- It can be managed better with your diet. (Samantha W., 20 years)
- That it affects a lot more than joints. That very few people understand what is going on. That what I eat has a profound effect on my body. That doctors are clueless and we have to self-advocate. (Wendy, 16 years)
- It affects females almost three times as much as males. How strong and determined I can be when I have to be. (Rebecca, 16 years)
- I never thought I could hate a disease so much. (Dee, 15 years)
- That it effects your whole body, not just your joints. (Patricia W., 15 years)
- It with Fibromyalgia, is very debilitating, and when they say it will progress, THEY’RE NOT LYING!! (Denise P., 14 years)
- That although it is a very physical condition, I can overcome it… 90% of the time. (Zuleika R., 12 years)
- It’s so different for everyone. (Nicola, 12 years)
- How painful it can be. Before I was diagnosed I always thought when people complained about RA pain, they had achy bones. Was I wrong. It is so painful, I thought I had bone cancer. (Brenda, 12 years)
- Medicine has come a long way, but it still has along ways to go. (Laura, 12 years diagnosed)
- How more and more people are diagnosed with it. (Marianne H., 11+ years)
- I am not alone in this. And found out the brain has to do with it, not just the stomach. (Kelly D., 9-10 years)
- It effects more than your joints. Eyes and organs too! (Kimberly, 8 years)
- The general lack of knowledge about the disease. (Sarah K., 8 years)
- That my pain is from arthritis. (LaTrece, 5+ years)
- You can live with it! Everyone reacts different to the drugs! Keeping your body moving is beneficial to your body! (Kim G., 5 years)
- I’ve learned that wherever you live it will take at least 6 months for you to initially be seen by a doctor. So don’t ignore your symptoms until you can’t move, because the doctors won’t squeeze you in just because you’re having a flare up. (Stacy, 5 years)
- You wake up in a different dilemma every day. (Katie, 4 years)
- I learned that age doesn’t matter. RA is not just arthritis. It is an autoimmune disease. You can live a decent life if you get treatment. (Shanna, 4 years)
- I’ve found there are many different aspects to it and a lot of drugs used which have bad side effects. I’ve also realized it can effect any joint in your body. It hurts my knee, then leaves and goes to my shoulder, then leaves and hurts my toes, then leaves. You really have to keep on top of it with exercise, massage and medication if it gets really bad. Stress is also a factor (that’s why yoga probably helps). (Jim K., 4 years)
- Too many to choose, but it’s bloody frightening and l personally think there is not enough publicity about the condition. (Lisa M., 3+ years)
- It does not have a cure yet. But with the right meds, you can have a better quality of life. (Libby B., 3 years)
- How many people suffer from it. So many different treatment plans. Just insurance doesn’t cover all. (Lori, 3 years)
- It can come and go depending on my food intake. (Anonymous, 3 years)
- That it’s not grandma’s arthritis. It affects all areas of your life. (Tina, 3 years diagnosed)
- Most people blindly follow their doctor and don’t seek out different answers. (Michelle, 2-3 years)
- That RA medicine can stop being effective. (Mauree J., 2 years)
- That it is a systemic auto immune disease and what other organs it effects. That a chemo drug is used for treatment. (HB, about 2 years diagnosed)
- It has no pattern. (Steve, 20 months)
- It most certainly does not just affect joints! (Emma W., 1 year)
Rheumatoid Arthritis Pain Relief
What are effective ways to relieve Rheumatoid Arthritis pain?
- Heat (heating pads, warm water, etc.), rest. (Ila H., 50 years, diagnosed April 1966)
- Humira, meditation, yoga, physical therapy, acupuncture, listening to music. (Lorna, 37 years)
- There is none. (Anonymous)
- Pain meds, heating pad, Methotrexate and Prednisone. I also had both knees replaced 16 years ago. (Carla P., 24 years)
- Medication and especially diet. (Samantha W., 20 years)
- Painkillers help a bit. Prednisone and metroxate. I am now on chloroquine. I was taken off the afore mentioned because I am diabetic also. (Roschell, 19 years)
- Usually nothing, but sometimes meds. (Chrissi C., Since I was 16 months old)
- Exercise, sleep, narcotics, heat, rest, not eating sugar, wheat, processed foods. (Wendy, 16 years)
- Celebrex, warm baths, heating pads. (Dottie G., 16 years)
- Nurofen, heat pack, ice gel, baths. Splints and bandages, elevating the effected joint. (Rebecca, 16 years)
- Massage, medications, surgery, ice, heat, rest, retirement. (Dee, 15 years)
- Pain meds, hot baths, heating pads. (Patricia W., 15 years)
- I did a 180 lifestyle change. I modified my diet (pescotarian), became more active (exercise every day/includes active recovery) and sleep. (Zuleika R., 12 years)
- Rest, meditate, fast. (Nicola, 12 years)
- Medications, plaquinil, ibuprofen, ice packs, heating pads. Some excercises. (Brenda, 12 years)
- Ice pack, heating pad, anti-inflammatory medicine, gentle stretching, get plenty of rest, plenty of sleep, try to relax, narcotic pain medication. (Laura, 12 years diagnosed)
- Hot bath, tramadol, meditation. (Marianne H., 11+ years)
- Humira, Ibuprofen and Medical Marijuana. (Suzanne, 10+ years)
- Hydrocodone. (Barbara, 10 years)
- I take Tylenol 2’s 1-2 times a day. (Kelly D., 9-10 years)
- Hot showers/baths, medications, keep moving, heating pads, ice packs, herbal scents. (Kimberly, 8 years)
- Medical marijuana, heat, cold, methotrexate, exercising and yoga, diet. (Sarah K., 8 years)
- Chinese medicine and acupuncture, biologics, walking. (Amy K., 7 years diagnosed)
- Hot showers, rest, pressure gloves, medicine, ibuprofen. (Brenda, 7 years)
- Prednisone. (LaTrece, 5+ years)
- Keeping an active pain reliever when necessary. (Kim G., 5 years)
- I’m not sure I’ve found any. (Stacy, 5 years)
- Advil, prednisone, biofreeze, diet restrictions, yoga, running (movement). (Gayle, 5 years)
- THC rub, advice and relaxation. (Katie, 4 years)
- NSAID, pain meds, heating blanket, cream, sleep, crochet. (Shanna, 4 years)
- Healthy eating, being very careful with what medicine you take some are not that effective but can cause side effects you don’t want. Losing weight, exercise (keep moving), yoga, weight training (light weights), be positive! (Jim K., 4 years)
- Hot water bottle, Paracetamol. If no relief, l could request steroids. (Lisa M., 3+ years)
- Resting and taking my meds. Taking aquatic therapy. (Libby B., 3 years)
- Heating pad, ice, taking Prednisone and Ibuprofen. Some pain medication. Spending time off my feet, with my legs elevated. Injection in knees works wonders, but doesn’t last too long. (Lori, 3 years)
- I eat a healthy diet, avoid my triggers whenever possible (tomatoes, peppers, dairy and sugar). I exercise 5-6 days a week with running, walking and strength training. I use ibuprofen when necessary. (Anonymous, 3 years)
- Exercise, diet, rest. (Ruth, 3 years)
- Pain management medicine and slow, light activity. (Tina, 3 years diagnosed)
- Near infrared sauna, change in eating habits (low inflammation foods). (Michelle, 2-3 years)
- Topical gels (Biofreeze), NSAIDS, sleep. (Anonymous, 2.5 years)
- None, I just have to deal with the pain. (Mauree J., 2 years)
- Medication, diet, moving, massage. (Jaimie B., 2 years diagnosed)
- Nothing yet. I started methotextrate too soon to tell. I had a few days where I felt better but most days I feel stiff and ache in pain. (HB, about 2 years diagnosed)
- Nothing, take lots of drugs. (Steve, 20 months)
- Painkillers (NSAIDs), heat. (Emma W., 1 year)
- Steroids, Methotrexate, Embrel. (Paul, 1 year)
Rheumatoid Arthritis Difficulties
What are the most difficult aspects of living with RA?
- Not being able to do what I once did. (Ila Hale, 50 years, diagnosed April 1966)
- The continuous pain, not being able to do everything I want and need to do in life. Not being able to find a good relationship as no one wants to deal with the day to day life of being with someone with a chronic illness. (Lorna, 37 years)
- Can’t do what you used to do. (Anonymous)
- Giving up being active and enjoying activities. (Carla P., 24 years)
- Daily pain that never gives up. (Samantha W., 20 years)
- Getting up in the morning. Sleeping pain-free. (Roschell, 19 years)
- It is so hard mentally. (Chrissi C., Since I was 16 months old)
- FATIGUE!!!!! I can tolerate a lot of pain, but there isn’t enough coffee in the world when a flare hits. (Wendy, 16 years)
- The fatigue. And others not understanding. (Dottie G., 16 years)
- Losing independence, the fatigue, not being able to work and have people, friends and employers understand. (Rebecca, 16 years)
- Fatigue, pain, pain, fatigue, pain and fatigue, infections. (Dee, 15 years)
- Not being able to work, standing for periods of time, walking too far, playing sports. (Patricia W., 15 years)
- Fluctuations in the weather causing extreme flare ups, and being reduced to laying in bed, because of the unbearable pain. (Denise P., 14 years)
- Feeling exhausted every day. (Zuleika R., 12 years)
- Having at times to take nasty medications. (Nicola, 12 years)
- Not being able to do what I used to do. (Brenda, 12 years)
- The limits that it puts on everything you used to do with ease. Missing out on quality time with family and friends. (Laura, 12 years diagnosed)
- Losing everything that I loved that defined me as a successful person. Loss of my sense of self. Fear of my future. (Marianne H., 11+ years)
- No strength or energy. (Suzanne, 10+ years)
- Moving, not moving, sleeping. (Barbara, 10 years)
- Not doing everything that someone normal can do. Knowing it is only gonna get worse. (Kelly D., 9-10 years)
- Not being able to do “normal” tasks. (Kimberly, 8 years)
- The fatigue, not remembering what pain-free feels like, lack of understanding from peers, family and friends. (Sarah K., 8 years)
- Constantly feeling sick. But not looking sick. Tiredness. (Amy K., 7 years diagnosed)
- Not having full mobility, dealing with the pain. (Brenda, 7 years)
- Being active. (LaTrece, 5+ years)
- Not being able to do things I used to do! The pain and flares! (Kim G., 5 years)
- There are not a lot of visible symptoms, so people do not understand how terrible you are feeling because you look “fine”. (Stacy, 5 years)
- Impairment in my life, feeling old, fear of the future and joint damage. (Gayle, 5 years)
- Never knowing what will happen next. (Katie, 4 years)
- Not knowing when or where I will get a flare up. Getting sick frequently. Rescheduling plans. Being active with friends and family. (Shanna, 4 years)
- The pain can be indescribable but when this happens you need to rest your body although this can be difficult because of the pain. Because of this it is sometimes difficult to hold down a regular job which can be depressing. (Jim K., 4 years)
- The unpredictability and the fatigue. (Lisa M., 3+ years)
- Not being able to do the things you used to. Can’t plan for events. I get fatigued quickly. (Libby B., 3 years)
- Walking, trying to get doctors to understand I don’t want pain medications, but some days I do need them. Not being able to kneel to do my normal gardening. Getting a doctor to follow-up on what they say they will try for you. (Lori, 3 years)
- The fatigue!! It definitely can change all your plans. (Anonymous, 3 years)
- Having other people in my life understand what it means, how I feel, and why I don’t look sick when I’m miserable inside. (Ruth, 3 years)
- Fatigue, pain and mobility. (Tina, 3 years diagnosed)
- Friends and family don’t understand chronic illness. Everyone assumes there is a pill that makes it go away. (Michelle, 2-3 years)
- Pain. People not understanding because “you don’t look sick”. (Anonymous, 2.5 years)
- Not being able to use my left arm. (Mauree J., 2 years)
- Relearning my body’s capabilities. (Jaimie B., 2 years diagnosed)
- I guess I’m still in denial that I have it. I always thought you needed obvious inflammation and certain positive blood tests. Now I find erosion can occur with inflammation, but it doesn’t have to be extensive or severe swelling or inflammation. I hate my grip strength to hold my children’s hands is weak and painful. I feel fatigued and the pain makes me feel more irritable. I wish I could take that away. (HB, about 2 years diagnosed)
- Everything, it’s life changing. (Steve, 20 months)
- Unpredictability. Being unable to do all the things I was able to do before. (Emma W., 1 year)
- The fog off the steroids, mentally slower, less motivation. (Paul, 1 year)
Rheumatoid Arthritis Advice
What words of advice/encouragement could you give someone recently diagnosed with RA?
- The first years are the worst. You will find things you will no longer be able to do. Don’t let that stop you! You will find many others that you can! Let this help you learn new things and do them well. Always keeping in mind that “you can do this”! Determination and an upbeat attitude will help get you through the really bad times. Look around you…so many other people around us are dealing with illnesses that make me thankful that my trial is mine. Make adjustments and try to find joy in other things! (Ila H., 50 years, diagnosed April 1966)
- Just try to stay positive, hope for a cure, have good relationships with positive, understanding people, try to minimize stress as much as possible. (Lorna, 37 years)
- Hang on and join many support groups for info and to rant. (Carla P., 24 years)
- Find a support group. Don’t let it define you. Don’t compete with people to be the most affected, the most in pain. Take control and dominate this disease. (Samantha W., 20 years)
- Stay on your meds, if it does not work for you, go back to your specialist. (Roschell, 19 years)
- Keep at it and never give up. (Chrissi C., Since I was 16 months old)
- The first year sucks, but if you work at it, you will get your life back and you will be changed for the better. Learn to prioritize and don’t always put yourself last. (Wendy, 16 years)
- Hang in. Do your homework. Get more than one opinion on what drugs to take. Call the drugs manufacturer. Most have nurses to ask questions of. Do call and ask. (Dottie G., 16 years)
- Don’t give up and don’t be afraid to ask for help. (Rebecca, 16 years)
- Have a positive attitude. (Dee, 15 years)
- To stay positive, you will have good & bad days. Pray a lot- it helps to have God on your side!! (Patricia W., 15 years)
- SWIM, SWIM, SWIM, MASSAGES, MASSAGES, MASSAGES!! (Denise P., 14 years)
- Seek what works for you! Do not give up! Always remember that you will have VERY bad days and amazing days…And we live for those amazing days. (Zuleika R., 12 years)
- It is going to get better, read as much as you can about it. Make sure you are aware of all aspects of the drugs you are taking and that drugs are not the only way to deal with it. (Nicola, 12 years)
- When you are having flares, rest. Don’t push it and overdo things. (Brenda, 12 years)
- Learn all you can and don’t accept no for an answer. Don’t be afraid to change doctors if yours isn’t working for you. Stay strong. (Laura, 12 years diagnosed)
- Educate yourself. That is your best tool. Allow yourself to grieve. Good times always follow a bad flare. (Marianne H., 11+ years)
- Keep moving. (Suzanne, 10+ years)
- Don’t judge, just encourage each other. (Kelly D., 9-10 years)
- You’re not alone. (Kimberly, 8 years)
- Learn to listen to your body and swallow your pride. (Sarah K., 8 years)
- It’s a hard journey, but you’re not alone. We need each other for support. (Brenda, 7 years)
- Do research. (LaTrece, 5+ years)
- It’s natural to be in denial and feel sorry for yourself! This too will pass- stay positive! When a drug doesn’t work after about four months, move on! Don’t be afraid of the biologics, because they work!! The side effects are very minor for most!! (Kim G., 5 years)
- Pray. (Katie, 4 years)
- You have support. Crochet or knit, it’s so peaceful. Any hobby of your interest. You are not alone. (Shanna, 4 years)
- It can get better a lot better but be your own person and find out what helps you. I have also looked at taking certain drugs short term and don’t want to be on any of them long term. So you need to find alternatives to make you well which means some big changes in your habits. Diet has to change in a lot of cases, more better exercise needs to be done and most of all look after yourself and be positive. (Jim K., 4 years)
- There are people out there who understand exactly what you are going through. (Lisa M., 3+ years)
- Don’t give up. See a rheumatologist as soon as possible. (Libby B., 3 years)
- Find a good doctor who will treat you, who you can afford and handle. Find people who have been through it. It always helps to know your not alone. (Lori, 3 years)
- Rest when needed. Exercise whenever possible and watch what you eat. (Anonymous, 3 years)
- It gets better. It gets easier to deal with. The more educated those around you are, the better it can be. (Ruth, 3 years)
- Be strong and educate yourself about symptoms and medications. (Tina, 3 years diagnosed)
- Get tested for chronic infections. (Michelle, 2-3 years)
- Keep strong, don’t give in! (Mauree J., 2 years)
- Patience and stay positive. It will not always be so hard. (Jaimie B., 2 years diagnosed)
- I’m sorry. I felt alone and frustrated with my diagnosis and it is difficult because so many people are misinformed. Is it like HIV? Is it contagious? Oh, just arthritis. What you have to take chemo? Is it a form of cancer? I think I felt frustrated because outward appearance is misleading and others may not see your daily struggles. But you are not alone. You will have strength and survive because that is what we do. (HB, about 2 years diagnosed)
- See a specialist, keep talking to people, if in Australia get all medication from one chemist, Chemist Warehouse is cheap. (Steve, 20 months)
- Remain positive, the right treatment is out there somewhere. Stay mobile! (Emma W., 1 year)
Rheumatoid Arthritis Recommendations
Anything you would or would not recommend for someone with RA (drugs, diets, exercises, remedies, etc.)?
- Try to stay as active as you are able. Exercise is important even if it isn’t what we used to do. Stretch yourself a little farther than you think you are able. I’ve taken many medications over the years. In the beginning for me, Aspirin was recommended, then Ibuprofen, Tylenol, Prednisone and NSAIDs. Not much relief there for the pain, but it all contributed to an ulcerated stomach. I have always tried very hard to stay away from the addictive pain meds. I’ve since gone to biologics, which has helped a lot, but I’ve had to change from one to another throughout the years. (Ila H., 50 years, diagnosed April 1966)
- Gentle exercise that is not too strenuous on joints. Be careful of remedies that have not been proven to help and could be damaging. Always ask your doctor first. (Lorna, 37 years)
- GP used daily, Methotrexate and Prednisone. Ask a good Rheumy. (Carla P., 24 years)
- Poor diet. You need to be careful what you put in your body. So careful. (Samantha W., 20 years)
- No alcohol. Stay away from energy drinks. (Roschell, 19 years)
- Never give up! (Chrissi C., Since I was 16 months old)
- Exercise and movement, eating healthy, taking care of yourself. (Wendy, 16 years)
- Try to never take methotrexate. It rotted my front teeth along with the steroids, which has caused bone density loss. (Dottie G., 16 years)
- Heat packs- any form of heat works well for me. Trust your specialist and look around to find the best one for your health. Learn your limits and every day decide what’s worth pushing or not pushing those limits. (Rebecca, 16 years)
- Stay on your meds. The disease will destroy you if you don’t. And cherry juice does nothing for you. (Dee, 15 years)
- I take turmeric & cinnamon caps in addition to my meds. (Patricia W., 15 years)
- No, but I do to young people. Be careful and thoughtful of how you treat your body when you’re young… it’ll let you know one day, you’re not as invincible as you feel and think you are. (Denise P., 14 years)
- Try things for yourself and modify accordingly. Unfortunately, RA is not a one size fits all. For this reason we need to make sure that we are continuously conducting trial & error to make sure we find what works for us. (Zuleika R., 12 years)
- I would recommend diet, to keep moving and most important to reduce stress. (Nicola, 12 years)
- Listen to your doctors and don’t be afraid to talk to them. (Brenda, 12 years)
- Exercise is important, keep moving for as long as you can. No matter how big or small, just do it. Try to eat healthy. It makes a big difference in how you feel. Try to get a great night’s sleep as often as possible. (Laura, 12 years diagnosed)
- Get tested for allergies. The Elisa Act test was one of the best things I could have done for myself because it defined foods and other things that triggered inflammation. I was able to change my diet in a very targeted way for my body. Exercise. Get a good rheumatologist. Keep a journal of how you feel for each doctor appointment, so you don’t forget to tell the doc about symptoms. Find a support group. (Marianne H., 11+ years)
- Avoid red meat and rich food. (Suzanne, 10+ years)
- Warm wash clothes, hydrocodone, not being on Medicare. (Barbara, 10 years)
- I guess don’t sweat the small stuff. Do what you can and ask for help when you need to. (Kelly D., 9-10 years)
- Don’t take all the medications doctors tell you. Educate yourself first. (Kimberly, 8 years)
- I would recommend medical marijuana. Everything else seems to be individual- based on whether or not it helps. (Sarah K., 8 years)
- Meloxicam. (LaTrece, 5+ years)
- Keep a positive attitude! Keep your body moving! Eat as clean as possible! (Kim G., 5 years)
- Stay away from sugar. It really aggravates my symptoms…too bad I can’t seem to get enough of it. (Stacy, 5 years)
- Sugar. (Gayle, 5 years)
- Drugs, as much natural remedies as possible, essential oils, etc. (Katie, 4 years)
- Methotexiate is dangerous when TB is present. Get second opinions. Be careful choosing a rheumatologist. Let family help you. Get up. Get a hobby (mine is crocheting). (Shanna, 4 years)
- Try to go gluten-free or as close as you can get to it. Eat lots of fruit and vegetables. Keep dairy to a minimum or not at all. Eat salmon and keep red meats to minimum. Make sure you get plenty vitamin D. Don’t do intense exercise but exercise with yoga, cycling, swimming, walking, weights. Smile, be positive and don’t get down-hearted. (Jim K., 4 years)
- Try and get out, walking daily, even if it’s a very short walk. (Lisa M., 3+ years)
- Prednisone is the one things I am scared to be without. Keeping warm helps more and than getting too cold. Always stretch and don’t stay in one stationary position for very long. (Lori, 3 years)
- I recommend getting enough sleep and know your limits. Take it easy when flare ups come along. (Anonymous, 3 years)
- Try everything and find out what works for you. Everyone is different and finding your remedy- your help will be different than someone else’s. Don’t stop doing. Sitting back and letting the disease take charge is almost worse than the disease. (Ruth, 3 years)
- I have found medications outside of pain management to cause more illness. Any extra activities cause extreme pain the next day. (Tina, 3 years diagnosed)
- Get tested for chronic infections from an integrative or naturopathic doctor. (Michelle, 2-3 years)
- Gluten-free diet, little to no alcohol, low-sugar diet, movement (as much as possible). (Anonymous, 2.5 years)
- Give everything a valid try. (Jaimie B., 2 years diagnosed)
- I recommend listen to your body; I can run better than I can walk distance. I’m not sure about diet, but being active helps. I’ve tried supplements, but I’m not seeing results and I’m still waiting on DMARD to see if it will help, but have 2-3 months still to go. (HB, about 2 years diagnosed)
- If you are finding it too much, make sure you are talking to some one- a doctor, family, friends. Just vent. (Steve, 20 months)
- Exercise!! Rest. Listen to your body. (Emma W., 1 year)
Rheumatoid Arthritis Resources
What specific RA resources have you found most helpful?
- Internet and support groups. (Ila H., 50 years, diagnosed April 1966)
- Creaky Joints, Arthritis Introspective, Arthritis Foundation, Arthritis Today magazine. (Lorna, 37 years)
- Nothing. (Anonymous)
- Articles, other support groups. (Carla P., 24 years)
- Facebook group, pages for support, compression gloves. (Samantha W., 20 years)
- None as yet. (Roschell, 19 years)
- Nothing. (Chrissi C., Since I was 16 months old)
- Forums with lots of supportive people doing positive things with their lives despite RA. (Wendy, 16 years)
- Support among others with RA, internet research. (Dottie G., 16 years)
- RA Guy, RA Forum, a lot of RA Facebook groups, my doctor. RA-specific websites. (Rebecca, 16 years)
- Rest, sleep, massage, hot showers. (Patricia W., 15 years)
- Help groups. (Zuleika R., 12 years)
- The internet. (Brenda, 12 years)
- RA apps, online support groups, therapy and counseling. (Laura, 12 years diagnosed)
- Charities that help with co-pay for biological drugs, an online support group, therapy. (Marianne H., 11+ years)
- RA Doctor. (Suzanne, 10+ years)
- Haven’t found anything helpful- you get your hopes up, then nothing!!! (Barbara, 10 years)
- Being honest with my family doctor and my rheumatologist. (Kelly D., 9-10 years)
- RA groups. (Kimberly, 8 years)
- Online support groups. (Sarah K., 8 years)
- Facebook support group. (Brenda, 7 years)
- Online support groups! (Kim G., 5 years)
- Support group online (talking to people with RA). (Gayle, 5 years)
- Watching my diet…attempting to get enough sleep. (Katie, 4 years)
- Reading forums, Facebook community, support groups. (Shanna, 4 years)
- Books by people who have had RA and online there are a lot of blogs related to RA which can really help. (Jim Kelly, 4 years)
- Online support groups, Health Unlocked, NRAS, Arthritis research. (Lisa M., 3+ years)
- The internet and my rheumatologist. (Libby B., 3 years)
- Alternative relief advice, friends advice, not much. (Lori, 3 years)
- Online groups help. Lots of insight on the internet as well. (Anonymous, 3 years)
- Arthritis support groups, good medication, understanding physicians. (Ruth, 3 years)
- Online groups and information from other RA patients. (Tina, 3 years diagnosed)
- Internet. Google. Health websites. Facebook groups. (Michelle, 2-3 years)
- Support groups. (Mauree J., 2 years)
- Others with experience. (Jaimie B., 2 years diagnosed)
- Arthritis Foundation, Facebook support groups, some of those who have RA, and searching the internet. (HB, about 2 years diagnosed)
- Web. (Steve, 20 months)
- Arthritis UK. (Emma W., 1 year)
- Nothing of note, pretty much had to figure it out myself. (Paul, 1 year)