Rheumatoid arthritis support group

Rheumatoid Arthritis resources

RA is a progressive disease and symptoms may appear and disappear over time. Symptoms should never be ignored or untreated because of the risk of damage to joints. A rheumatologist can help patients determine what stage their RA has reached and suggest a treatment plan. A rheumatologist can also prescribe medications they should be taking. If a person is having difficulty with painful symptoms, a rheumatologist can suggest actions that will help alleviate the pain such as exercises, diet changes and supplements.

If you believe that you or a loved one are experiencing symptoms of rheumatoid arthritis, the next step is to talk to a doctor or rheumatologist. The American College of Rheumatology offer a helpful resource for locating a rheumatologist in your area:

RA Support Groups

Joining a support group is a good way for people with RA to learn more about the disease and cope with the physical/ emotional issues of it. Groups often support each other and patients feel more at ease knowing they have friends to turn to when they are experiencing difficult times. RA can leave people feeling depressed and out of control but having the support of others can make people feel more confident. Arthritis Introspective, an organization focused on helping the lives of young and middle-aged adults with arthritis and rheumatic diseases, has a wide network of support groups that meet all over the country. To learn more about local support groups, find your region on their list here.

If there are no local support groups and you would like to begin one, Arthritis Introspective can send you a free training guide on how to become the leader of an independent support group. Information on starting a

Another option for group support is to join an online community for people with RA. WebMD and The Arthritis Foundation both have forums where people ask questions and discuss their options for treatment, medication and lifestyle choices. Online communities still give the benefits of a support group, but can allow users to remain anonymous or discuss sensitive topics openly.

Literature on RA

Arthritis Today is a print publication that provides information and advice for living with arthritis diseases from the world’s top doctors and health experts. It covers topics like new treatment options, fitness and nutrition advice, and much more. You can subscribe to a digital edition though the App Store on most smart devices or to be delivered to your door.

Arthritis & Rheumatology is a top rheumatology research journal published by the American College of Rheumatology. It is directed towards medical professionals and scientists interested in learning the details of the “natural history, pathophysiology, treatment, and outcome of the rheumatic diseases.” They also published articles and editorials written by top scientists in the field of rheumatology. Arthritis & Rheumatology is free for members of the ACR, but non-members can order issues of the publication here.

The Rheumatologist is a monthly publication by the American College of Rheumatology that covers scientific issues and trends that affect the RA community. They also cover the latest on research conducted and the practicality of new treatments. Issues of The Rheumatologist can be purchased here.

Arthritis Drug Guide: Keeping track of all the different medications a person with RA must take is difficult. All medications affect the body differently and come with different side effects. The Arthritis Today Drug Guide produced by the Arthritis Foundation allows a user to look at information about the specific drug they are taking including dosages, potential side effects, special instructions and if there are special precautions known with that medication. Treating all medications the same is dangerous and this guide offers facts that patients need to know.

Rheumatoid Arthritis Blogs

There are several blogs that are kept by people diagnosed with rheumatoid arthritis. The authors use the blogs to share their struggles and to reach out to other members of the RA community.

Rheumatoid Arthritis Warrior is kept by a woman who has been battling RA since 2006. She shares her research, personal struggles and even some recipes with her readers with the goal of informing and empowering.

All Flared Up is run by Amanda, an active 32-year old who has battled RA for 14 years. On her blog she speaks candidly about the struggles of leading an acive lifesyle with RA and hopes to inspire others to “live rather than wallow”.

RheumaBlog is different from the others because the writer treats the blog as a journal and tells poetically written stories about her experiences. She has lived with RA for over 20 years and often has debilitating symptoms.

Other rheumatoid arthritis blogs include:

  • Rheumatoid Arthritis Guy
  • Inflamed: Living with Rheumatoid Arthritis
  • Carla’s Corner
  • A Figment of Fitness
  • An Attitude of Gratitude
  • From This Point. Forward.
  • Mommy With Rheumatoid Arthritis
  • Pollyanna Penguin
  • Living with Rheumatoid Arthritis
  • ∞ itis
  • RA Adventure Rider
  • My Rheumatoid Arthritis Journey
  • The Life and Adventures of Cateepoo
  • Arthritic Chick
  • Oh My Arthritis

Because some blogs are updated more frequently than others, we grouped the blogs listed above into a Feedly Shared Collection (available here). Feedly is an application that allows you to read articles and blog posts from you favorite blogs and publications together in one place so you don’t have to check each individual website to look for new articles and posts.

Apps for Pain Management

There are several apps available for smart devices that will help document and manage rheumatoid arthritis symptoms.

RheumaTrack was designed by rheumatologists to help patients keep track of their good days and bad days. This free app allows you to log your pain levels and will remind you when it is time to take pills. It is interactive and even allows you to export the information to bring to a doctor. RheumaTrack is available for free for Apple products at the App Store here and also for Android users here.

MyRA makes it easy to let your doctors know how a person has been feeling over the past weeks or months. The interface is visually simple and will help you better record your feelings than a journal. MyRA is available free for iPhone and Apple users here and for Android users located here.

Track + React was developed by the Arthritis Foundation to help those with rheumatoid arthritis manage their daily lives. Record your food, exercise, sleep times, medication and pain levels in one simple place. It also gives immediate and helpful advice for managing symptoms. Available free for iPhone and iPads and Android devices.

Local Resource Finder: The Arthritis Foundation (AF) offers a local resource finder on their website that allows a user to search for RA support in their own communities. You can search for local AF offices, community and fundraising events, Rheumatologists and other health care resources with just a few clicks. This finder can take a lot of the research and guesswork out of looking for resources on your own.

Help paying for medicine and treatment

  • BenefitsCheckUp
  • GoodDays
  • HealthWell Foundation
  • NeedyMeds
  • Partnership for Prescription Assistance
  • RxAssist
  • RxHope
  • Together Rx Access

Non-Profit and Government Organizations

  • American College of Rheumatology (ACR)
  • American Chronic Pain Association
  • Arthritis Foundation
  • Arthritis Introspective
  • Arthritis National Research Foundation
  • Centers for Disease Control and Prevention (CDC), National Center for Chronic Disease Prevention and Health Promotion
  • Juvenile Arthritis Association
  • National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
  • Rheumatoid Patient Foundation

Other Arthritis Support

Dog and Other Pet Arthritis: As many of us have support dogs and other pets and up to 20% of dogs develop some form of arthritis we’re starting a new section dedicated to our furry friends and helping them with arthritis. We’re actively looking for guest writers who are subject matter experts on pet arthritis to help us build out the most knowledgeable content for treatments such as glucosamine chondroitin and curcumin. Please do contact us if you know someone who’d like to help.

Psoriatic Arthritis

Psoriatic Arthritis (PsA) is a form of arthritis with many symptoms mimicking Rheumatoid Arthritis. One of the most differentiating factors is the presence of psoriasis in up to 85% of individuals living with this disease. In our new section on Psoriatic Arthritis, you can learn about the symptoms and triggers and how to minimize joint pain and inflammation.

We describe what areas of the body PsA affects the most and the most common treatment options. In addition to drug therapies, natural remedies, lifestyle changes, and dietary triggers and suppressants are discussed.

Support groups have been beneficial to many people living with chronic diseases such as rheumatoid arthritis (RA). Studies show arthritis support groups can improve mood, provide better coping skills, decrease pain and provide relief from negative emotions, such as fear, resentment and hopelessness, according to Vicki Helgeson, PhD, of Carnegie-Mellon University, Pittsburgh, who has studied the impact of support groups for more than a decade.

However, support groups sometimes get a bad rap because some can become a ceaseless cycle of negativity in which members continuously vent, but do not learn to cope and accept their illness.

“Some people don’t like support groups, because they think they’re a pity party,” says Ellen Fleischer, 67, who started a support group with fellow RA patients after they became acquainted in her doctor’s office in Delray Beach, Fla. “But I think arthritis support groups can be exactly the opposite. I think they empower people.”

“Certain support groups might be more beneficial than others in providing skills that enable members to move on,” says Helgeson.

For example, an educational group moderated by professionals sets a formal pace, while peer, or self-help, groups are open-ended exercises run by a participant. “I found that peer discussion groups work best for people who lack support at home,” says Helgeson, noting that for people who do have sig­nif­icant support systems in place, an educational support group might be of greater use.

Whether the leader is a professional or a peer, you should ask about the leader’s role – would she just facilitate the discussion or moderate it so participants do not share inaccurate health information? Helgeson favors those groups moderated by an impartial trained leader.

“When the leader is involved in the discussions, there is greater potential for successful healing,” says Helgeson. “That is why the qualifications of the leader are so important.”

Finding the right group

There are several types of support groups:

Closed – not open to public without preregistration; requires commitment to attend a set number of sessions.

Group therapy – directed by a mental health professional, with a time-limited purpose for specific therapeutic goals. Some teach coping skills and relaxation techniques.

Peer – led by a fellow patient, this group’s casual format focuses on sharing experiences, and learning from others’ experiences.

Educational – features an expert’s presentation, with a question-and-answer session.

Online – support found on Facebook or chat sites are considered peer groups.

The Arthritis Foundation has a nationwide network of peer-led social, networking and support groups, called Live Yes! Connect SM, which strengthens our ability to provide connection, education and empowerment to those looking to meet others who share their interests. To find a Live Yes! ConnectSM group near you, check out this list of local support groups for Adults with arthritis and JA Parents.

As we continue to enhance our tools and resources, you’ll be able to find even more arthritis support groups using our Arthritis Resource Finder!

Related Resources:

  • See Articles About Arthritis and Your Life
  • Get Help Coping With Change

Arthritis Foundation

This is a national not-for-profit group that provides a wealth of information and support for all types of arthritis, including RA. , you can learn more about rheumatoid arthritis, review the latest studies, and even find support with others who have the condition.

American College of Rheumatology

The ACR is a prominent organization of doctors, scientists, and health care experts. , you can find information on the latest educational programs, topical research, and recommended medications. There is also a section for people who aren’t doctors that explains rheumatic diseases and conditions, and support for caregivers.

National Center for Complementary and Alternative Medicine

NCCAM, part of the National Institutes of Health, provides a lot of insight, information, and research on complementary and alternative medicines. , you’ll find cutting-edge information, including topics such as acupuncture, botanicals, and supplements.

National Institute of Arthritis and Musculoskeletal and Skin Diseases

NIAMS, part of the National Institutes of Health, is a large group of professionals that support ongoing research in arthritis and musculoskeletal and skin diseases. includes information on arthritis, back pain, gout, knee problems, osteoarthritis, rheumatoid arthritis, and more.

For people living with rheumatoid arthritis (RA), or newly diagnosed with RA, support groups can offer an opportunity to speak with others who experience similar concerns, struggles, and frustrations. Support groups can help reduce negative thoughts and feelings, and also provide useful information.1 But how do you find the right group or even start your own?

Different types of support groups

If you are in the market for a local RA support group, understand there are a variety of formats. Professionally led groups run by competent leaders such as nurses, social workers, or trained facilitators, usually involve a therapeutic and/or educational element. These groups provide structured meetings and aim to keep the sessions positive and helpful.2

Alternatively, peer-led groups can take on many forms: program-based; open-ended discussions;3 or combined lectures from healthcare professionals followed by group discussions. All groups have advantages, and many times it’s simply a matter of finding one that feels right.

How to find a local support group

It may not be easy to find an RA-specific support group. Broaden your search to include groups that deal with chronic pain instead of the condition itself. While conditions vary, common bonds tend to exist such as pain and the emotions it causes. You can find chronic pain support groups in hospitals, standalone pain centers, and HMO clinics. Additionally, try some of the suggestions below as you start your search:4

  • Ask your healthcare providers if they have any recommendations
  • Check with your local hospital(s) about support groups for patients with arthritis or chronic pain
  • Call your local Arthritis Foundation office as a resource for their groups and/or exercise programs (http://www.arthritis.org)
  • Check the American Self-Help Group Clearinghouse website (http://healthfinder.gov)
  • Call the local chapter of the American Chronic Pain Association (http://www.theacpa.org)
  • Look through your local telephone book or newspaper listings
  • Contact trusted local community centers, libraries, hospitals, or houses of worship for a list of support resources
  • Search www.meetup.com and use key words such as “arthritis support group” or “chronic pain support group”

Keep in mind that group diversity can be beneficial. People who have already walked-the-walk have a lot to teach people, especially those with a new diagnosis. If you’re hesitant, speak to group leaders and members, and attend a few meetings. It’s perfectly acceptable to shop around until you find one that’s a good fit.5

Lastly, don’t rule out therapeutic exercise groups (e.g., aquatic programs, gentle yoga) as an alternative or supplement to support groups. (Always check with your healthcare provider first.) These exercise programs frequently have a strong social support element. Also, most participants have something in common (arthritis or chronic pain) and they all “get it.”

Start a new support group

It’s possible that you won’t find a group that matches your exact needs. But don’t give up! Think about starting your own support group. It’s a lot of work and responsibility, so make sure you’re ready for the challenge.

First, get a sense of what types of groups (if any) are offered in your area. If there is already a general support group, then think about creating a more specific one such as “early arthritis” or “young mothers with chronic pain.” Also, try to find out if there is a strong need for a group. You’ll want to maximize the benefits by making sure more than a few people show up for meetings.

Next, talk to facilitators or check out some websites that offer instructions for starting a support group. For instance, the American Chronic Pain Association has a facilitator guide and accompanying video to provide assistance and ongoing support for its members who want to start a group.6

Once the basics are setup you can start to spread the word about your new group:7

  • Promote meetings through websites (e.g., www.meetup.com, www.creakyjoints.org)
  • Create a Facebook page to share information about upcoming meetings
  • Ask local healthcare providers, pain clinics, houses of worship, libraries, and community centers if you can post or distribute flyers
  • Place an ad in your local newspaper

Remember, whatever group format you decide is best, be careful about taking advice from another person without first checking with your healthcare provider. What works for one person, may not work for another.

Support groups can be a valuable resource to help deal with RA issues. Be sure to express yourself honestly and share your compassion with others.

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Rheumatoid Arthritis Ra Connect

Groups

Rheumatoid Arthritis Support Group

The group provides education and support for individuals, caregivers or other family members affected by Rheumatoid Arthritis.

Meeting Details

  • Location: Arthritis Foundation, 3300 Monroe Avenue, Suite 319, Rochester
  • Time: Last Wednesday of the month, 6:45 PM
  • Fee: No fee
  • Facilitation: Member facilitators
  • Eligibility: For individuals, caregivers or other family members affected by Rheumatoid Arthritis

Contact Information

Contact Joanne Insull, 585-264-1480, [email protected]

3300 Monroe Avenue Suite 319 Rochester, NY 14618
Website: www.arthritis.org

Sponsored by: Arthritis Foundation– Upstate New York Chapter

Sjogren’s Syndrome Support Group

The group provides education and support for individuals, caregivers or spouses affected by Sjogren’s Syndrome.

  • Location: Call for location
  • Time: Meets four times per year. Call for dates, times
  • Fee: No fee
  • Facilitation: Member facilitators
  • Eligibility: For individuals, caregivers or spouses affected by Sjogren’s Syndrome.

Sharon E. Hoffman, 585-582-6114, No e-mail available. Contact Melanie Young, 315-483-4528, No-email available

Website: www.sjogrens.org

Sponsored by: Sjorgren’s Syndrome Foundation

Find an Arthritis Support Group Near You

Benefits of Support Groups

Joining a chronic illness or arthritis support group can be very beneficial to your physical and mental health. Support groups can offer a safe environment where you can share painful experiences that you might be too embarrassed to tell a friend or loved one. It also is a great way to get out of the house, meet new people and interact with others. In talking to them, you will see that you’re not alone in your struggle. You can get emotional support as well as learn new strategies for managing daily challenges – not just from your symptoms but also from any underlying anxiety or depression you may have, as these are common in people with chronic diseases.

Traditional Support Groups

Traditional, in-person support groups have the added benefit of giving you in–person interaction. Typically in these meetings, people sit in a circle at an intimate gathering and talk about how they are dealing with their condition. Some groups may bring in local nutritionists or physicians to give members additional strategies for managing the condition. In addition to the group sessions, support groups often organize informal, social events like picnics and family outings. To find an in-person group, ask your physician or local hospital, or browse our interactive map above.

Rheumatoid Arthritis: Choosing a Support Group

People with rheumatoid arthritis seem to agree that the best source of understanding and support comes from other people with rheumatoid arthritis.

Tammy Kerker, 39, of Orlando, Fla., has had rheumatoid arthritis for most of her life and has found support both in-person and online from people with rheumatoid arthritis..

Kerker is involved with the Florida Arthritis Foundation, formerly sitting on the central board of directors. Now that she has three small children, she finds herself with less time for live meetings. She is also involved with an online support forum called Moms With RA. Kerker says these groups help her live a full life with rheumatoid arthritis. She offers the following suggestions as to what you should consider when choosing a rheumatoid arthritis support group.

Rheumatoid Arthritis Support Groups: Three Big Reasons to Go

  • Solidarity. “It’s moral support. Sometimes is downright depressing,” Kerker says. “It’s nice to make friends in the same position. Things that aren’t simple for us, things that seem easy for other people — they understand.”
  • Practical advice. “You get tips on how to handle different situations,” Kerker says. When you face challenges you can tap into the collective wisdom of other people in the rheumatoid arthritis community.
  • Finding a new normal. A disease like rheumatoid arthritis often makes people just feel different, and that can be isolating. Kerker keeps in touch with a 12-year-old girl in her area who was recently diagnosed. “It was good for her to see that it wasn’t the end of the world,” Kerker says, “for her to meet someone who had it when they were young and now has a husband and kids.”

Rheumatoid Arthritis Support Groups: Pros and Cons of Online Support Groups

Pros:

  • Not limited by location. Online it’s easier to find a group that meets your needs. A live group that addresses your specific concerns may not be available in your local area. Kerker says of her local chapter of the Arthritis Foundation, “There is not a ton of young people participating in it.”
  • Accessible anytime. Live groups may meet once a week or once a month, but what if you have questions immediately? It’s been nice to be able to go online with a question at any time of night, and get a response pretty quickly,” Kerker says.

Cons:

  • Not personal. You may not really get to know the other members. If you thrive with face-to-face support, a live group might work better for you.

Rheumatoid Support Groups: Other Things to Consider

  • Group size. A larger group, be it online or in person, will grant you access to a diversity of opinions and experiences that you may not find in a smaller group. But, a smaller group feels more intimate, with a chance to get to know each member.
  • You changing needs. Make sure to re-evaluate whether the group is right for you. When Kerker was younger, she wished for a local group that was geared to the needs of young people; now that she has kids herself, she’s more interested in issues that face moms with rheumatoid arthritis.

Rheumatoid Arthritis Support Groups: Where Are They?

Once you’ve decided what you’re looking for, there are a number of rheumatoid arthritis support groups.

  • Online: Blogs, forums, and social networking sites. Look for a group on social networking sites like Facebook, MySpace, Meetup, and others.
  • Live: The Arthritis Foundation and community groups. Your local chapter of the Arthritis Foundation may offer classes and support groups, or ask at your doctor’s office about groups in your area.

Both types of support groups offer a wealth of knowledge about rheumatoid arthritis, as well as practical advice and support from others who know how you’re feeling. One of the most important things is that you feel comfortable with the group you choose. If you prefer in-person social interactions, you may want to look for a live group. If you would rather get information and support while at home, online may be the way to go. Either way, you’ll be glad to have a connection with others who have been there.

Are You Suffering from Rheumatoid Arthritis?

Rheumatoid arthritis (RA) is a disabling disease that affects the joints with pain, swelling, and stiffness. RA is a systemic disease, which means it can have an impact on a person’s entire body and may even impact one’s sense of well-being.

RA often results in a gradual limitation of normal activities because the joint damage and symptoms that occur with it usually progress slowly over time. When those who don’t know they have RA feel pain or stiffness, they naturally try to avoid what makes them hurt. They may first start by changing their schedules (such as stopping early morning exercise or getting to work later), changing what they do (reducing physical activity, switching chores to lower impact ones, or avoiding activities they enjoy because it makes them hurt), or reducing activities because they may not want to ask for help. Eventually, people with RA may start to withdraw, cut back on social activities, and even reduce their work hours. Some patients, with or without appropriate intervention, may even feel the need to quit their job due to limited mobility. This effect can have emotional, social, and economic consequences for patients and their families.

Getting Care for RA

As a rheumatologist, I have seen many patients with RA who believe that they must endure painful symptoms on their own, often because they are embarrassed to say that they are in pain or because they feel that their pain is a part of the normal aging process. Some patients give up on life the way they’ve lived it before because they are no longer able to hold onto a zipper or button a shirt. But, for many, when RA is appropriately diagnosed and treated early on, it may be possible to put RA symptoms into remission or a very low level of disease activity so that RA sufferers are able to get back to living a relatively healthy and normal life.

So, the first and most important thing for someone with RA symptoms, such as tender, sore, stiff or swollen joints, is to see a doctor who can offer a proper diagnosis—in most cases, a rheumatologist. There are RA treatments that can help to control symptoms. In fact, the goal of RA treatment is to get the patient to a state of clinical remission, that is, a total absence of symptoms; if this is not possible, then the lowest level of disease activity. While this doesn’t always happen, many people who are treated early on may be able to get to a state of low or very low disease activity.

Don’t Suffer Alone

Living with RA may not always be easy. When the symptoms take away the ability to do the things a person takes for granted such as personal grooming or turning a door knob, this may lead to embarrassment and shame. It is not surprising that some people with RA (especially during flare-ups) become withdrawn or feel depressed.

I encouraged my patients to keep a journal and write down their feelings, thoughts, and reactions to the difficulties they are having living with RA. I have found that this is a very effective way for patients to get some psychological or emotional relief. The idea is to help them become aware of the issues they are facing and to feel less burdened by their worries. It may also help to find someone trustworthy to talk with about their thoughts and feelings.

Your doctor is always a good place to start for discussing your concerns about your illness and mood. But there are also social workers, psychologists, and psychiatric professionals who are well-trained in helping people with chronic illness when mood becomes a problem. My patients also reported that support groups can be very helpful. It can be comforting to meet people who have similar challenges and who can share insights on how they cope with RA.

You can find information about local support groups by contacting your local Arthritis Foundation chapter. Connecting with other people who have RA may be difficult if you live in a remote area, but there are also many online communities and forums. It can help to find out more about RA support groups.

Caregivers and Family Members

Families with a loved one who has RA may have a hard time understanding what their loved one is going through. If a patient is willing, I encourage caregivers and family members to join the conversation during routine medical visits. Most RA doctors are willing to answer family members’ questions and even explain what is happening physiologically and emotionally to the patient.

For instance, I might explain to a patient’s young children that their mother or father is not abandoning her or his duties, but instead, is just not able to do a lot of normal things that the rest of the family can do easily. This becomes an opportunity to engage everyone (kids and young adults) by letting them know they can play an important role by pitching in more, and more readily supporting their loved one on the RA journey. If you are comfortable, ask those close to you to be part of a conversation with your doctor.

Raising Awareness to Break Isolation

Every day, I wear a lapel pin that has a fork with bent tines, which I received from the RA public awareness campaign called “Simple Tasks.” The campaign is sponsored by the American College of Rheumatology and is meant to bring awareness about the challenges of people living with RA. The symbol of the fork stands for a debilitated hand—it stands for the people with RA who have difficulty doing simple tasks, like picking up a fork, or zipping a zipper, or making a fist.

You can get involved in this campaign by learning all you can about RA and helping others to understand it, too. Breaking the secrecy and discussing your own challenges with RA may also help to end the social isolation that often goes along with this debilitating disease.

Andrew Koenig, DO, FACR, is a rheumatologist and was the Inflammation/Immunology Group Lead for North America Medical Affairs during his time at Pfizer, Inc.

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