My Bulletin Board

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Welcome to my bulletin board.  

Here’s some really cool stuff I’ve found! I didn’t want to clutter up the front page, but I need a place to pin something up for you to see. Like the front of my refrigerator.

 

  I can’t believe this Dell ad for integrated healthcare solutions has only a thousand views after almost 2 months.

 

     Song about RA on Hot New Hip Hop.
 

      Top-ranked hospitals for Rheumatology by U.S. News & World Report

 

It’s ePatient Dave from the Netherlands on part of his 2011 world tour! This message is Let Patients Help! Don’t miss the rapping! And he talks about RA Warrior!

Grant Jambois has Juvenile Rheumatoid Arthritis. He is a warrior we can all admire as he takes his strong medications & does whatever he can to continue to play the sports he loves. I know you’ll love his warrior spirit.

 I introduced my readers to the REF over the last few weeks in some reports about the ACR. You’ll hear much more about them soon on the blog, but here’s a little video that gives an idea how important their work is. They raise more money to fund research for RA than anyone else. We need to support them!

      

Don’t miss this! The Atlantic Magazine’s “Sixty Minutes”-style story about problems with applying medical research to real patients: Lies, Damned Lies, and Medical Science. It’s long, but enlightening. ”To say that Ioannidis’s work has been embraced would be an understatement. His PLoS Medicine paper is the most downloaded in the journal’s history, and it’s not even Ioannidis’s most-cited work—that would be a paper he published in Nature Genetics on the problems with gene-link studies. Other researchers are eager to work with him: he has published papers with 1,328 different co-authors at 538 institutions in 43 countries, he says. Last year he received, by his estimate, invitations to speak at 1,000 conferences and institutions around the world, and he was accepting an average of about five invitations a month until a case last year of excessive-travel-induced vertigo led him to cut back. Even so, in the weeks before I visited him he had addressed an AIDS conference in San Francisco, the European Society for Clinical Investigation, Harvard’s School of Public Health, and the medical schools at Stanford and Tufts.”

You’ll enjoy reading about patient advocate and social worker, Shelly Baer, LCSW.Shelly Baer

 

 

 

 

 

 

 

 

 

If these hands could talk by Carole Neesam The extraordinary photography of Carole Nessam can be seen via this link.With her permission, here is a small version of a photo of her husband Lee, who has RA.

  

 

 

 

 

 

Here’s a good doctor trying to raise awareness about the heart disease of RA which is responsible for the majority of rhematoid deaths. Part of the reason for RA’s high mortality rate is the lack of preventive care RA patients get. Too many doctors don’t view RA as a disease or realize the need to treat CVD or CAD in RA patients because it goes undetected. It is not the same as other heart disease. See the tags “Preventive care with RA” or ”Death & RA” for more on this topic. 

Here’s a blog I wrote for the WEGO Health site: Pain, Perception, and #Pinkification. Moving story about RA awareness and breast cancer.

 We have our own RA Warrior YouTube channel now! I’ve posted a couple of my videos & I’m working on adding some that fans made for us. Please ”Subscribe” & vote to LIKE them so they can become more popular on YouTube. Also you can “share” them to Facebook or Twitter.

 People are finding Lab Tests Online really helpful. You can look up stuff about your lab tests on the great site. There is a search box or you can click on tests. Thanks to Carol for pointing this out.

 This video covers many of the things we want to tell people about what it’s like to have RA.

Last week, I was a guest contibutor on The Orthopedic Posterous, the blog of Dr. Howard Luks. It’s an exciting collaborative project he has begun – patients and doctors working together. Thanks, Dr. Luks! I hope all my readers will check out your blog.

 

Look what I got in an email today! :D

Medical Assistant Schools

 

 Thank you, Sara for the lovely award. :heart: You are a special friend. 

 

  

 What can I say? Some docs focus on what they know…  and nothing else.

 You may have seen the Bridget Duffy 2009 Gel Conference video here on the site with my reply. I’ve just watched the 2008 one, through tears again. If patient experience is something you care about, you’ll want to watch.

Bridget Duffy at Gel 2008 from Gel Conference.

 Thanks for this, Laura! Her awesome solution: “I wrapped this shelf liner around my coffee cup. It sure makes it easier to get a better grip. I also wrapped this liner around my curling iron. I don’t want to get anymore face burns from a slipped curling iron!”

       

 Yes, this is a real photo! With a great story behind it: My FB friend Jakki’s daughter took this shot a couple of weeks ago traveling home from Cambridge. The flag is the one flying above the WWII American Cemetery at Maddingley. Later, she posted the picture on Twitter and it spread like wildfire. The other day, a reader of RA Warrior living in Hungary posted the photo on my Facebook wall! Imagine Jakki’s surprise to see it there!

Sunset smiling

 Survey 2010

Click sign to complete the Health on the Net Foundation’s survey about internet usage for healthcare information. RA Warrior is an H.O.N. certified site. See our certification seal at the footer of the sidebar.

 

 How fun is this? A Google video about RA Warrior!

 

Click here to go to Page 2 of the Bulletin Board for much more fun stuff!

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  1. Susan Roither says:

    Love the Pink Glove Dance!

  2. Jules says:

    Love, Love, Love the List of Life Lessons.

  3. Rachel (mommabird62) says:

    Same here! Luv it all:-) Thanks!

  4. Viesta says:

    Very Happy Holidays to all RA Warriors!

  5. david says:

    GOOD STUFF !!

  6. Jeanie Morgan says:

    Great site! I love reading all the articles, not to mention the videos! Keep up the good work! Thanks!

  7. ~Z~ says:

    Kelly!! You just provided me with a wonderful hour of procrastination!! ~;o) And I re-shared some of these things with my friends, so now they’re procrastinating too. ~;o)

  8. Pamela Montgomery says:

    LOVED the SURFice Dog video – have shared that one on my status as well as with family members – we have a a dog and three cats in this household – so pet lovers abound!

    I hope you are having a good day Kelly – After several of the worst days of all I have had so far 2 1/2 good days – I am sending positive thoughts your way that you too can have a couple of good days in a row!

    Bless you and thanks as always!

    PM

  9. Ronda says:

    Ahhh,I just found your video clip Kelly. Amazing to hear your voice instead of just seeing words on a page:D. Made my day. I’m not so sure you’re over 40 now??

  10. Michelle says:

    Hi There RA Warrior,

    I must say that as a newly diagnosed sufferer of RA, this site has brought me much comfort and reassurance. I was diagnosed with RA in November of 2009 and it is today after coming across this site that I have actually built up enough courage to start the DMARD treatment. Since my diagnoses i’ve been taking Celebrex to ease the pain, to no avail it’s not really helping me that much. I too was afraid of the side effects of the DMARD meds. My RA has gotten to a point that I can no longer deny the fact that I need to start treatment or loose my mobility all together. I want to thank you for all of the information that you have posted on this site and in such a humorous way ** I had a few laughs**, i’ve found it most helpful in helping me decide my next steps in fighting this disease.

    Thanks,
    Michelle

    • :) thank you for writing, Michelle. I’m glad you found us! I hope you find that treatment helps you to do much better. Which DMARD will you be starting?

  11. Nancy says:

    Just had the first chance to check out this section of your web site Kelly. Great stuff! That nun video is a hoot and I cried all the way thru the doggie one! I know I keep saying it, but THANKS for all you do for us! Having found this website 10 days ago has really been a blessing for me :heart:

  12. Beth says:

    I really like the Australian Video, I posted it on my Facebook. The idea for the coffee cup it terrific! I’m going to put it on my electric toothbrush. I already broke one and they are expensive!
    You are truely an inspiration and I’m so glad that you have all these links and discussions. It has raised my spirits considerably. Know that you are making a difference!

  13. Debbie says:

    Has anyone tried the supplement Arthri D and had success?

    • I don’t know about that. Sorry.

      • Debbie says:

        I was diagnosed with RA in June of this year and can’t take MTX due to liver and am now trying Leflunomide with Prednisone..I don’t think this is helping either. I truly appreciate this website. It’s the first I found with good information and a place I can talk with people with this same problem to see what’s worked for them. Thank you for this resource. I saw this product on tv and it’s probably too good to be true but when you’re grasping at straws, I’ll try anything. This is a huge lifestyle change for me and it stinks.

        • It is a huge lifestyle change – you’re right. I’m not liking it any more than you do. Most of those products are baloney to be nice. There are many combinations of dmards & biologics & antiinflammatories – so keep trying. Make sure your doc hears you about how the RA affects you and what you can’t do anymore. So they have an idea that it’s not working. Good luck.

  14. RaRAP says:

    The world breaks everyone and afterward many are strong at the broken places. – Ernest Hemingway “A Farewell to Arms”

    I saw this passage recently and it struck a note with me. May we all be stronger as we face our trials with RA and life.

  15. Tammie says:

    Thank you for creating this site. Now, I don’t feel so alone.

  16. Jane Robbins says:

    My RA started with a venegance on December 29, 1999. I had been running a high fever a couple days before but before that I had not been sick for years, had worked 2 and 3 jobs, sending 2 daughters to college and had a son in the Marines!!! Backing up a month to November 29, my youngest daughter, age 21, was in a major motor vehicle accident and was in a coma for 19 days with a closed head injury. I sat by her bed that entire time in ICU, at which time I was exposed to Fifth’s Disease (Human Parvo Virus) at some time while I was at the hospital. My immune system was down and so was I, no sleep and wasn’t in very good shape physically or emotially. Happy to say, my daughter is in perfect health today, happily married, 2 children, a Master’s Degree in Social Work, I however didn’t come out so well. One month later to the day, every joint in my body was swollen, I couldn’t walk, my jaws were locked, I spent 2 weeks in the local hospital, test after test, no answers. Finally went to UT Texas to a Infectious Disease Specialist, he immediately diagnosed me with the parvo virus, told me it would probably lead to RA, since I had it in my family, I spent 6 weeks in a hospital bed, requiring assistance with all aspects of my daily living, walking with a walker, requiring assistance to even turn over in bed. I lost my job, insurance and independence within 3 months of the initial onset of this horrible disease. It is the worst beast I have ever encountered. More research needs to be done. I have taken Enbrel, Humira and am now taking Cimzia. Also Plaquenil 600mg. qd, Prednisone 5mg. qd, Cymbalta 60mg. qd, Lyrica 75mg. bid, Ambien 5mg. hs, Vitamin D 2000iu qd., Lortab 10/325 1/2-1 q4-6hrs prn pain. Hope this helps someone else fighting this battle.

  17. jeannie says:

    Congrats on your Blog Award well deserved!!!!

  18. Dixie says:

    Kelly,
    My RA dr. has put me on Chemothearpy for my RA, what is your opinion about this?

    Thanks
    Dixie

    • Dixie, is your prescription for methotrexate? This is a chemotherapy drug, yes, and the most common treatment worldwide for RA also, but in a lower dose. Look up at the menu bar at the top of the site where it says Methotrexate. Click there and you’ll see a list of lots of pages w/more info that might help you. I hope that the treatment helps you, most importantly.

  19. dee hayes says:

    Amazing to see the way diagnosis wasn’t done until after you were pregnant. I suffered numerous joint pain attacks starting when I was 13..awoke one morning and couldn’t move from the hips down….numerous trips to the hospital…bursitis, tendonitis..I don’t know itis..they never gave me a diagnosis..they didn’t know.It was when I delivered my son at 19..1976 it was the nutritionist that brought it to a meeting, this young woman with years of undiagnosed joint pain…at that time they finally did a RA factor..lo & behold JRA. By the grace of god now I do fairly well although now I have osteo as well

    • Hi Dee, for me the symptoms were always worsening after pregnancy and then the last one was the final straw – it didn’t come and go anymore – It just stayed. :P Still, better diagnosis is obviously needed.

  20. Brian McDonagh, MD says:

    I heard about a novel treatment for RA from a colleague and I read about it on the web. It has been around for a few years and is apparently very effective for some. It is worth reading about.

    NOTE: Link was removed. This site has recieved hundreds of spam due to being mentioned on AOL.com this morning. There are hundreds of sites that promote those products and philosophies about RA. I do not have time to responsibly examine them.

  21. Louise George says:

    Wow! Your story will help so many people. A good friend of mine developed RA in college, and the doctors diagnosed her with Leukemia and other diseases before they finally got it right. She is a warrior also.

  22. Marie says:

    Kelly:

    I just want to thank you for your great article. Everything that you stated in your article fit me to a “T” I had two years of misdiagnoses. I was shuffled from doctor, to doctor, to doctor. From Infectious Diesease. to Hematologists, to even wanting me to see a psychiatrist because they told me it was all in my head. Even my own Rheumatologist at one time, with a straight face said that they wanted me to see a Hematologist and not to blame him when it came back that I had Lymphoma!! I can say that I have switched Rheummy’s and am happy with the one I have. Since then, I have been diagnosed with Stills Disease which is a more severe form of RA that I am learning to deal with even though it’s not easy. My cousin who was 10 months older than me, died from complications of Stills Disease at the ripe old age of 34. I must admit that when I think of it, it’s a bit scary. I thank you for bringing more awareness to this horrible disease!

    • Thank you for coming over and introducing yourself Marie. :) I have talked with several patients who have Still’s – some who do very well. I’m glad you have a good doc!

  23. Jerry Woody says:

    Kelly,
    I’ve looked for a “contact us” tab to give you some information that may help you. I didn’t find one so hope this reaches you. About 20 years ago when I was still working I mat a man who used to work for the IBM Corp. He told me that he had been forced to retire because he had RA and was so bad he was confined to a wheelchair because he sould not walk. He told me an old woman at the time told him if he would take Alfalfa Tablets, 2 tablets 4 times a day within 6 months he would see relief from the arthritis. He told me he talked to his doctor about it and the doctor told him taking the Alfalfa would not hurt him but he did not think it would work. John told me he felt he had nothing to lose since he was getting progressively worse and feared he would die, so he began to take the pills which he said he bought over the counter at a local Wal-Mart store. John said at the end of six months he was out of the chair, the swelling had receded and he was walking with the use of a walker. John said he kept taking the tablets and at the end of a year he was walking without aid, the pain was gone and the swelling had gone down and he told me I know this sounds crazy but it worked for him. I was a police officer at the time and John had just joined our “Citizens Assisting Police” program and he would ride with me a lot. When I met him you would never believe that he had ever had any kind of disablement. About 10 years later I was diagnozed by my docor with arthritis in my hips and shoulders. I kept working till I retired and put up with the pain. Then my hands and feet became affected and I noticed bumps that were very tender starting to grow on the knuckles of my right hand. Heat, cold nothing helped with he pain except vicodin. I don’t like to take medication of any kind if I can find another way to do it. Then I remembered John and the alfalfa. I admit I had reservations about whether or not it would help me but I guess like John I felt I didn’t have anything to lose so I talked to my doctor about it. He was skeptical about Alfalfa doing any good but told me he did not see a problem if I wanted to take it because there is nothing in it to that would cause a problem with the heart medications I take. So I started to take the medications. Within a month I noticed the pain had lessened. At three months I could visibly see the bumps on my knuckles were getting cmaller and at six months there was no pain in my joints, the swelling was gone, the bumps on my knuckles were gone and I wasn’t having a problem. So I quit the Alfalfa. I was alll right for about a year then the pain started to come back and the swelling started again. I re-started the alfalfa again and after another six months the pain and swelling were gone. So I have continued the Alfalfa taking just four tablets a day, two morning and two evening and I’m pain free, have full use of my joints and no swelling. My doctor is aware of the results and says he does not understand why it works but told me the medical community knows there are several natural herbs that help humans with different maladies but they do not prescribe them, because they also know that they do not work for everyone. I’ve told several people about it and almost everyone I’ve told had reported back to me it has helped them get rid of the pain and swelling. Like the doctor I don’t see what is in it but it works. I don’t know if it will help you but you may want to check it out. Alfalfa is just a green plant but evidently there is something else in it that helps. This is not a hoax. I do not say it will help you but am hopeful that it may. It works for me and I am very thankful.

    • i also had a physician recommend alfalfa in the past.. thanks for the info

    • I need some advice on how to deal with people and their comments about RA and starting methotrexate. I hear..but you look good, you are pretty active or they just dont want to comment at all. i started to slow down my social calendar in the past 2 yrs and have been told i am “antisocial” and could get off the couch to visit a little more at family functions. I am usually tired by the time i travel out of town and sleep in a different bed. I finally decided to be open about my RA and the comments are overwhelming. Its probably my fault because i covered for it so long. Help please…

  24. Theresa Jennings says:

    I am so glad I saw your interview to know that there is someone I can talk to about RA. I have read and tried to learn more about RA and the doctor monitors me but the pain is so severe at times and it wakes me up screaming and then it is scary and they put me on a steroid and pain killer and then I gain weight and now I am off steroid but have the fevers and pain and taking methotrexate and another pill and folic acid. I would like to have a support group —Thank you,
    Theresa

  25. Tracy says:

    I saw your story on aol. I was reading it and it sounded JUST LIKE ME!!!! But mine was found just a little earlier then 40. I was 34-35 some where around there. But like you as a child it was my feet that were the most problem and legs. My parents took me to Dr’s none could find any thing wrong except I was very FLAT FOOTED, and my hip bones did fit in the joints exactly right. But most of the time my parents were told “IT’S JUST GROWING PAINS!!” I as a child got picked on a lot because of the way I walked. Had special shoes made etc. Finally after Dr after Dr saying it’s just growing pains I just finally shut up about it and found my ways to get around the pain. As time went on I noticed hands swelling, elbows, shoulders, knees no reason to saying thing NO ONE EVER LISTENED!! And another little bit of info my aunt on my dad’s side was found to have RA later on in life so that was all ways in the back of my head when the FLARE UPS happened (Now they have a name I NOW KNOW WHAT TO CALL THEM!!) But the only way I found out was I accidently got my finger caught in a ladder at work. A month later the finger was swollen and my employer made me go have it looked at. Once again the Dr looks at me and tells me “OH IT’S JUST BECAUSE YOU DIDN’T DRILL A HOLE AND LET THE BLOOD OUT FROM UNDER YOUR NAIL THAT’S ALL!!” But this time I had something else. I told the DR NO I AM TELL YOU THIS HAPPENES ALL THE TIME THINGS SWELLING UP FINGERS, KNUCKLES, KNEES, FEET, ETC. Then the next thing out of my mouth was ok the explain this not only is my finger like this tell me why my knee is swollen like a basketball. I pulled up my pants leg to show him. He was stund. FINALLY I GOT THE RESPONSE I HAD WANTED FOR YEARS. Let’s draw some blood there maybe more to this!!! Once I saw the RA Dr she gave me an exam 1st couple of question were “HAVE YOUR FEET ALL WAYS LOOKED THIS WAY? YOUR HANDS ALL SO? Answer yes she then said and none of the Dr’s you saw thought that your feet and hands looked different then normal peoples. I had to say guess they didn’t think so. She told me I could have looked at you years ago and told you what was wrong just by the way they were misshaped. But the end of the story I HAVE FOUND THE MOST WONDERFUL RA DR WOULD NOT TAKE HER FOR A MILLION DOLLARS OR IF SHE MOVED ACROSS THE COUNTRY I WOULD HAVE TO FOLLOW HER!!SHE MEANS THAT MUCH TO ME!!! But I wanted to share my story to let you know you are NOT ALONE in your story as well. And I am enjoying your Website. Please feel free to write me. Thank you Tracy Ballew

  26. Keep up the great things that are going on through this group as tomorrow we leave for a trip to count dolphins and whales as they migrate…..and rest………….and eat and rest and visit and rest and what ever the heck we want to because of the motivation my husband has received by this wonder group of real people

  27. Judi Barry says:

    Kelly I just wanted you to know. I checked out the survey Health on the net…Its over now..I believe you can still look at other information…thanks Also i looked at the video of Grant and his ra…what a special guy! thanks Kelly

  28. Christy says:

    I am a graduate student in social work at University of Southern Indiana. I am doing my master’s thesis on the emotional impact of RA on women over 18. Could you please take (and/or pass on) my anonymous survey? It takes only 5-10 minutes. Thank you so much!

  29. This is a great site and feel fortunate to have found it. Will be here often. Thanks

  30. Jeannie says:

    I would like to read comments of RA folks and their results on Methotrexate. I am on week eight and not yet seeing results. Could really use some encouragement right about now.Thanks! Jeannie

    • I work with a RN who takes metotrexate injections and said she had hardly no side effects and felt more energized by 4 weeks. I am getting my pretesting done (chestxray and Pulmonary tests ) now and will start Metho. soon. I hope you get results soon! Are you having any side effects? stimach, hair loss? any info helps!

    • mary jane says:

      I had to stop using methotrexate because of severe dizziness and I also had thinning of my hair.

  31. Judi Barry says:

    Kelly your getting your just due..Now i pray for you to find a rheumy who can appreciate you! Thanks as always Judi

  32. I couldnt find any info here on Stills Disease (RA). any links?

  33. jeff mariotti says:

    Why was I removed as a friend on your facebook page? This is the only place that I have been able to find any info to help me and I was removed so I no longer receive your blogs. Why?

    • Jeff, I’m very sorry. I have no idea what you are talking about . But if somehow by an error of FB or your own account you “unLiked” my FB page, you can easily re-Like it. No one would want you to leave. Also, if you fill out the subscribe by email here at the top of the website page on the right, you can get every new post sent to your email too. I hope that helps.

  34. I have a simple question. Do we have a symbol or emblem for RA. For Lupus we use the purple butterfly and I have it on my blog (for copy if anyone wants or needs it). I would to have one for RA. Suggestions and or I don’t mind making one either if there is not one.

    Thanks in advance.
    Tammy

  35. Marilyn Bielstein says:

    Thank you…Dr. Duffy especially is doing a great thing in her work to humanize care.I have often thought that docs today are allowed to graduate with their arrogance intact, then decided it just might be the way things are in the ‘new’ society we have now. The women who shared their stories made me cry…very brave.

  36. ladybug says:

    At this site:
    http://www.kickas.org/medical/index.shtml

    you will find the following Rheumatoid Arthritis Technical Papers (pdf format):

    • Rheumatoid arthritis is caused by Proteus : the molecular mimicry theory and Karl Popper

    • Rheumatoid arthritis patients have elevated antibodies to cross-reactive and non-crossreactive antigens from Proteus microbes.

    • Cytotoxicity Responses to Peptide Antigens in Rheumatoid Arthritis and Ankylosing Spondylitis.

    • Rheumatoid arthritis is linked to Proteus—the evidence.

    • Rheumatoid arthritis is an autoimmune disease triggered by Proteus urinary tract infection.

    • Antibodies to Klebsiella, Proteus, and HLA-B27 Peptides in Japanese Patients with Ankylosing Spondylitis and Rheumatoid Arthritis.

    It’s always the bugs, isn’t it. Sigh.

    Ladybug

  37. Pam says:

    Can you tell me if you have ever tried Xango? It is a juice that I have tried to help with my inflammation. I love it and if I take it faithfully the pain is so much better. Would like to know if you have heard about it.
    Pam

  38. Jacob says:

    Kelly,
    I have multiple issued with ligament degeneration etc, such as spinal disc degeneration, tennis elbow and degenerated miniscus. I have been trying to fix myself for about 3 years and I am already getting better despite the doctors saying that it will never get better. I have tried a number of things and experimented with a number of various cures.
    Of all the literature I have read so far the below list makes the most sense to me. Practicing this seems to work and I would say I am 50% fixed only after 3 months on this diet. Fortunately I do not have RA.
    Try reading:
    1) “The Metabolic Typing Diet” by William Wolcott.
    Combine the knowledge from the
    2) YouTube video of MD Terry Wahls http://www.youtube.com/watch?v=KLjgBLwH3Wc
    and the knowledge from the book
    3) “The inflammation Free diet” by Monica Reinagel. If you study these books and the videos in the order I have listed it you get a pretty good picture of what I mean. I have listed them in order of priority the way I see it.
    Wish you all the best,

  39. Eve Gumbs says:

    2/16/12

    Recent Wall Street Journal article on upcoming research trial utilizing round worm larva to treat RA. Successful results in treating autism syndrom, Lou Gherics and other autoimmune diseases. Hopefully will be alternate to medicines now administered.

  40. I am interested in RA and intamacy… I am 68 and have lived more of my life with RAAthan without RS. Experience tells me that intimate relationships, love, marriage and sex all suffer and are often destroyed by this disease.. I am not sure if this aspect of the disease have been covered within these pages and perhaps the content is redundant. I do know that during my sexually active years one of the truly helpful things was intimate physical love and or emotional contact. Perhaps the endorphines and hormone levels are increased with physical contact but I think a discussion about RA and physical and intimate love might benefit some people. Relationships may suffer from RA but if one is open and honest the benefits of active sexual contact between husbands and wives or lovers relationships can be healing and perhaps another method of controling pain and easing stress.. We as RA Patients often prefer to be solitary for numerous reasons however love and laughter will improve our abilities to fight this disease.. Sleeping alone may be necessary for many of us but living alone is not a solution to our happiness. Love, sharing , caring and understanding is essential to both the physical and mental well being of an RA patient… I do encourage everyone to talk openly about their intimacy concerns to each other. Don’t feel guilty about occasional inabilities and the lack of desire during flareups. Be open, brave and confident and know you are not alone.

    • You’re right. I actually read somewhere once that sex relieves arthritis pain for up to six hours. I don’t know how true that is since ive had RA since i was born and its pretty bad now that almost nothing works but i know that the JRA hasnt affected my sex life for the most part. Obviously there are certain things I can’t do because of the lack of mobility but it hasn’t seemed to cause a problem. It’s finding someone who’s willing to look past the disability and love you despite your physical limitations that’s the hard part. But not impossible. I recently got married and my husband doesn’t care that i can’t do certain things and it doesn’t bother him that i have to get 16 surgeries, 12 of which are starting right after we got married. As far as what you said, sex and intimacy do release endorphins and help with stress and mood and mobility which is a big deal because staying active is the best way to keep yourself from becoming unable to walk or move later on in life. Good luck! And thanks for talking about this because a lot of people don’t like to and it is important.

  41. Vourn says:

    Hey there, just wanted to add a quick thank you to the many I am sure you have recieved, I have not been able to tear myself away from your site today.
    I have early ‘diagnosed’ and slow progressing rheumatoid arthritis and have been plagued by both doctors and myself thinking I am a hyperchondriac. I keep thinking I should go off the medications because I am probably just imagining the pain seeing as I don’t have any visible swelling.

    I had my first slightly traumatic MRI the other day and am concerned it will show nothing and I will be in the dark about my pain. But reading your site has helped me get back the will to look more into it and hopefully avoid severe damage of my joints. The pain is not good but I am more scared that one day I will not be able to move like my mother who is quite bad.

    Anyway, thanks again and I will definitely visit some more :)

  42. mary jane says:

    I am 49 yrs. old but feel older. It has been 3 yrs. since I was diagnosed with RA and several yrs. of miss diagnosis.I have had several doc.s, meds, and at this time I’m on 3 pain, 1 inflammation, and Orencia. I sure hope that something works soon because I’m scared of what the future is like for me.My feet hurt and are so swelled up I can’t walk or even put shoes on. My husband has been great though this but I feel so bad that we can’t do things together like we did before.

  43. Hey everyone. I’m new to this site but my new friend at the arthritis foundation is helping me find ways to help other people with ra or jra and she told me about this site and a FB page. I was diagnosed with JRA at 18 months old, osteoporosis at 5 and after having my daughter at 28 and coming out of remission for 8 months I now have osteo arthritis. Drs. Had no other choice but to send me to an orthopedic surgeon so now I’m in the process of getting 14 joint replacement surgeries and 2 foot corrections. I’m only on surgery number 5. So far had hips and knees replaced and healing from foot correction now. If anyone has questions feel free to ask and I’m sure I will Also learn from all if you. I am looking into visiting med students to help them learn from me and doing research studies. Oh and p.s. my daughter was born completely healthy and at almost 3 she still is! :) This is a great site for info for people like me. Thanks for giving us something to read that will give us hope!

  44. Laura Nance says:

    How can we post pictures, I have questions.

    • Laura, if you like you can email me a picture & send permission to use it. Also, on the http://rheum4us.org site, you can donate a photo to be used to benefit patients. And if you join there, you can also upload an image in the forum (discussion) area. You can also post things on our Facebook page, but those go away quickly down the page as new posts are made.

  45. Trevor says:

    Hi I stumbled upn your website. I was diagnosed 3 years ago with JRA. I recently got a tattoo for RA awareness. It is Toy soldiers hoisting up a RA awareness ribbon and under it it says Warriors Suffer Pain Silently. I thought you would like to see this and maybe post it on your website.