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Conditions > Rheumatoid Arthritis > Self-Help for RA > Can Support Groups Help You Cope?
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Can Support Groups Help You Cope?

By Kelly A.J. Powers

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 have gotten 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 Internet chat sites are considered peer groups.

To find arthritis support groups, contact your local Arthritis Foundation chapter, speak with your doctor or call area hospitals.

cindy moran
12 Mar 2010, 21:35
additional thought:

maybe we could have a 'virtual support group'--and help/support each other via email.

for those with RA- if you're interested, plz contact me at

cjmoran@tampabay.rr.com

ps today's been a tough day for me, feel really bad,tired, meds not working well, trying hard to get out of the funk. want my 'old self' back. badly. Am currently on humira(wkly), methotrexate, sulfasalazine, mobic. Are the infusion drugs better/more expensive? Worth a try?
cindy moran
12 Mar 2010, 21:28
I, too, would like to be a part of a RA support group in the NE TAMPA BAY AREA. If anyone out there is interested, plz contact me at cjmoran@tampabay.rr.com. No one is going to go this for us--we must do it ourselves.

The frustrations, ups and downs etc., seem to be universal. Those without the disease and close to me are supportive and they do try to help, but without the first-hand knowledge of the disease. I would like to find some friends that truly understand. Maybe we could help each other.- Cindy 3/12/10
renee thomson
11 Mar 2010, 09:39
I am 49, female, diagnosed 5 years ago with the RA. first 2 years were too horribly painful and depressing to remember. I went thru all the other drugs first, to no avail. Nothing helped. Chemo, [methotrexate], a very dangerous drug. I am told now that has caused a .5 nodule on my lung. I have since stopped using that. I have been taking twice weekly injections of Enbrel the past 3 years. It does work, but not 100%. I still suffer from intense flair ups, fatigue,inmobility at times, etc. But, I would never want to feel the way i did the first 2 years without it.A support group would be helpful. anyone listening? just try everything you can to eleviate your pain. good luck
anon
06 Mar 2010, 03:36
i have raynauds disease but the last two months its felt worse and my joints ache, the pain locates in different joints each day and is getting me down. the doctors are doing more blood tests but say its possibly rheumatoid arthritis or another chronic rheumatoid condition. The not knowing is driving me crazy, its hard to stay positive when your aches and pains are a constant reminder something isn't right. Is there a support group out there for me? People say im being pessimistic but its hard for them to understand. Im in the north east of england and only 26 but feel 86
christa moorehouse
25 Feb 2010, 14:48
am moving to lansing,MI next month. Have just been diagnosed with RA and am devastated.Is there any support group up there that I can turn to? It almost feels like getting a death sentence what with the prognosis for a future life.
Teresa Kemp
15 Feb 2010, 09:39
wanting a support group in Fort Worth Texas
Colleen
11 Feb 2010, 01:46
I am also looking for a support group. RA is such a life changing disease. I was diagnosed 6 years ago and have gone from the relief knowing what was wrong with me and thinking that I could feel better to the absolute frustration of realizing this stupid disease is NOT going to go away and I will spend the rest of my life in pain. It is hard on me and hard on my husband as well. I have always been very active and been able to “keep the pace” with him on our small farm, building fences, barns, taking care of animals, etc . . . Now he plans his life around doing most everything by himself while I feel like crap and guilty for not participating in the up keep of our world. It is a hard and lonely spot to be in. I try to talk to my husband and even though he loves me, I know he really does not understand the pain, fatigue and frustration that is now my everyday life. I am on lots of meds which help sometimes; I go to physical therapy regularly and also exercise 2 to 3 times a week. Between that, this stupid RA and working fulltime my life is one painful foot in front of the other every day. I am disappointed that the Arthritis Organization does not have support groups as part of the local chapters, and I agree that fund raising seems to be the thrust of the organization. Even the doctors don’t have a support network set up. After my initial diagnosis (congratulations you have RA) to the appointments every 3 months I still walk out of the office feeling confused. Reading this article and the subsequent comments it is nice to know that other people with Rheumatoid feel the same but is it enough to be a catalyst for the Arthritis Organization to add support groups as part of their purpose? I hope so because we need help!
Pam
08 Feb 2010, 16:24
I am looking for a support group in Buffalo, NY.
I have FM and RA little to no health insurance and I'm on disability. What advice can I get to help me do my daily things, showing, doing my hair, cooking and lite housecleaning. Often I have flare ups in both hands.These days all I can do is stay in the house its to cold outside and walking hurts to bad to move. Life has to be more than this is there any hope.
Charles Donnelly
24 Jan 2010, 21:59
I am a husband to a Arthritic wife. It's been extremely frustrating on my part to see how she walks and not get around as well as most woman. I become angry and upset when I see other woman younger and older perform so well.

I have been doing a lot of praying for my wife and myself. Yes, we flare up that she does not want to go to Physical Therapy. She does a great deal of sleeping. She is missing out on life.


Frustrated Husband
Peter Johnson
19 Jan 2010, 08:32
Where are the support groups????
Marcia Young
06 Jan 2010, 12:55
1 year ago I was a happy health farm wife. I could lift hay bale, feed sacks, even animals if I had to. Then one day I passed out in the barn yard. My goats surroumded me and continued to nudge me until I was able to get up. from that day my life changed, I was so sick, so weak, I went to the doc, they took out my gall bladder, I got worse. after 3 months of testing I was finally given a diagnosis of RA. Today I can bearly lift a coffee cup. I hurt everywhere, all the time. bedtime is torture,getting out of bed is worse. an I won't even go into what it's like just trying to get off the toilet. I'm angry,I'm sad, I miss my life. I rarely leave the house because it hurts too bad to go down the steps. The meds perscribed made me violently ill, and my hair fell out, I simply can't take them. sometimes I just don't want to go on. I need someone to talk to that understands. my husband and family just think I'm being a baby and that I need to "suck it up,and move on" I would, if I could move! I'm only 53, I don't want to spend the rest of my life like this. Is there any hope? Thanks for letting vent.
Renee
18 Dec 2009, 08:48
I just turned 29 and have been dealing with this disease for 4 years now. I went into anaphlactic shock after taking Avelox (an antibiotic) and 5 months later I developed Reumatoid Arthritis. I lost my job last month. I could go on and on. Basically, I have allowed RA to ruin almost every aspect of my life and I can't find a support group in the Seattle area.

Also, I do try to make goals for myself and that seems to help somewhat... good luck to anyone who reads this.
Angel
29 Nov 2009, 18:11
looking for a support group
Tina Dietrich
24 Nov 2009, 21:02
Anyone know of any R/A support groups in the Lansing MI area?
Meridith Farmer
22 Nov 2009, 00:48
Hello, name is Meridith and I was just diagnosed with RA earlier this year. I am 37 years old and am still working as the lead receptionist in a medical office 40+ hours per week. I am adjusting to earlier bedtimes, haven't yet gotten on a regular exercise program and have made some minor changes to my diet. I am so sorry to see all the frustration from all of you above! But for whatever it's worth, I just picked up a book by M.E.A. McNeil called "Rheumatoid Arthritis: The First Year (Everything you need to Learn & Do)". I am finding it extremely informative and helpful. For any of you willing to step out and start a support group in your area (because it sounds like they don't exist anymore!) maybe this would be a good place to start, reading it with others.
EMS
16 Oct 2009, 10:23
Hello My name is Rochelle & i work for EMS research in London. We have been asked to conduct some research in September with Rheumatoid arthritis patients who are currently being prescribed HUMIRA & are using an auto injector pen. You will be paid to take part & it will be an opportunity to be able to have a say in the way your condition is managed and if you feel the Auto Injector Pens can be improved. If anyone is interested, please could you either email my colleague arthritis@ems.eu.com or call her on 0208 996 0498. Please be assured that any details given to us will be kept completely confidential & will not be passed onto any third party Many thanks for your time Regards
nanci
21 Aug 2009, 09:34
I too, am a sufferer of RA. I was diagnosed 4 years ago. I am currently injecting myself once a week with enbrel which has helped me a great deal. I still have flair ups but not as often.....mostly due to the fact that Im afraid to move most joints that can trigger the flair up. I've learned to accept the pain ( although, no one ever really learns to accept it ) but the emotional aspect of this disease has changed my life completly. I am always depressed, and yes, angry, and take it out on those who love me most. It saddens me that I have changed so much because of the horrible disease, and I am looking for a support group that can help me with the emotional side of it all. Bless you all that are suffering from this disease..and let's hope they come up with some mental support for us all.
Karla Hinkel
01 Aug 2009, 13:50
Hello,my name is Karla and I was diagnoised with RA four years ago, due to not having insurance I had to stop seeing a Dr. I now am on disability due to my condition, just 2 months ago I was told I have fibro on top of the RA. No one understands the pain that I live with and they think I can get over it by complete exercise. That is not so if you cannot walk well. I live in a rural section of Indiana and can travel to Indianapolis but looking for a support group has not been available to me. I need the physical, and mental support as I feel I am loosing my mind. I am on antidepressants and have been on them for four years. If anyone knows of any groups in my area PLEASE let me know.
Therese Biehler
07 Jul 2009, 09:54
25years ago, when I got my diagnosis, there were some good support groups, and even some very good educational sessions by the Arthritis Foundation. But now it seems that the only thing the Foundation does is plan these :Walks, Runs, etc. to get money for research. Research is needed, I don't deny it. But what about the now!!!!! I pray that the foundation reads all these commets and can do something to help us!
mindy ventola
28 Jun 2009, 11:53
I too am looking for a support group. My son has had JRA since the age of 6 & is now 27. He is miserable &I just don't know how to help him & it upsets me. I'm interested in learning how you income limitations being on disability. He is just about living in poverty because he doesn't know what is out there as far as benefits. He's limited in what he can do as far as jobs. Any suggestions? I'd appreciate anyone's input. Thanks
Ria
10 Jun 2009, 10:47
I live in the Salisbury, MD area and have called several organizations for help in locating a local arthritis support group with no success. My rheumatologist has no new treatment plan for me and gives me no hope for any new/upcoming treatment options. I was diagnosed with osteo-arthritis many years ago and this past spring the pain has greatly intensified. I am very interested in finding a support group in my area.
Mary
20 May 2009, 17:15
Hi My name is Mary and i was told back in 1989 i have RA and as year go on it get worth ,and i'm looking for a support group to help , i.am get frustratred and mad at my self for the pain i have every day ,i do talk with my doctor and he said try a support group in my area but i have found one yet .my family and friend dont understand the pain every day ,i pray AND ask GOD TO HELP ME EACH DAY.
I.M ASK FOR HELP THE DOC SAID TALKING WITH OTHER WHO HAVE RA WILL HELP.
THANK YOU FOR LISTENING MARY
Tammi
12 May 2009, 18:47
i was diagnosed with ra when i was 16 im 29 now i was curious about support groups a friend of mine introduced me to this site
Jeannie Anderson
05 May 2009, 10:10
I have rheumatoid arthritis that developed into a rare condition called vasculitis. I would love to find an online support group. Seems something shared helps.
Thanks for any information.
Jeannie
Theresa Neligh
25 Apr 2009, 17:02
Hello, Is there a fibro group in Russellville Arkansas, The one group has been disbanned. I can create one if it is needed.
Rita Webber
21 Apr 2009, 11:20
I am 53 years old with FM and RA. The Arthritis Foundation here in Los Angeles used to have meetings for those people afflicted with other arthritic conditions other than FM. Now there are none when I contacted two branches here in the LA area. I can find FM meetings but nothing for the other arthritic conditions that people may have. If anyone knows of any RA or other groups for people with arthritis please let me know. There are so many people out there with RA, OA and the other hundred arthritic conditions out there and we are in pain. I need support from others who have the same condition I have. I have considered starting up a support group for people with RA since the Arthritis Foundation does not offer them. I am in a lot of pain and having difficulty coping with the RA and need others to talk to.
Allie
13 Apr 2009, 23:20
Hello. I need help. My relative has been struggling with Rheumatoid Arthritis for a couple of years now. She tells me I cannot understand her pain and the changes that are occurring internally and externally with her body. She is right to say that I do not understand what she is going through. She is willing to go to a support group with me if I find one. I have yet to find a self help group in the Northern NJ area ( willing to travel south, west, east for her support group if need be). The rheumatoid arthritis gene runs in the family. I am fearful that I will suffer from this disease in the future especially when it has affected the majority of the women in my family. I am desperate for help because she is a good woman that at one point enjoyed life. She has some good days but they often seem rare when the flare ups ( that last at times a week) out weigh that one good day. I have faith that there is help out there. Any information would be greatly appreciated.------Allie.
Joanne Schaut
04 Mar 2009, 15:06
I am frustrated trying to find a support group for Rheumatoid Arthritis. I live in Burien, Washington. My doctor recommended contacting the Arthritis Foundation - and here I am, reading above that I should contact the doctor. I have searched area hospitals for support group recommendations, and found none.

It seems like someone just have the answer

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