I really am in my mid-30′s. I really am a guy. I really do live with rheumatoid arthritis.
That said, a real superhero never reveals his true identity.
My rheumatoid arthritis started when I was in my 20′s, although I had no idea back then that I was dealing with rheumatoid arthritis. My heels hurt, my knees creaked, and I slowly began to realize that these and other symptoms became more prominent during winter. I thought this was the normal aging process and that my body was just a little more achy because of the cold weather. (Ahh, the innocence of youth.)
As soon as I reached my 30′s, my body went haywire. The pain never went away. I lost the use of my knees. During my odyssey from doctor to doctor, I stumbled upon a rheumatologist, who confirmed that I did indeed have rheumatoid arthritis. I really did not know much about rheumatoid arthritis up until the time I was diagnosed.
In the five year since my diagnosis, I have learned a lot about rheumatoid arthritis.
I learned what TENS means. I gained weight. I regained the use of my knees. I got on meds. I got off meds. I got back on meds. I started doing yoga. I lost a lot of weight. I started taking hot baths. I started sleeping with wool socks. I started taking lots of NSAIDs. I started having stomach problems. I got depressed. I started wearing ankle braces. I started wearing wrist braces. I got happy. I started meditating. I started writing positive affirmations. I started pacing myself through my day-to-day activities. I went into remission. I came out of remission. I had lots of flares. I started therapy. I started getting early joint damage. I started this blog.
Most importantly, I started to learn how to LIVE with rheumatoid arthritis.
I have no doubt that I still have a lot to learn. I wish to share some of my ups and downs as I continue my journey through chronic pain and debilitating inflammation. I hope to use humor to try to lighten the situation. To my fellow superheros, when your joints start signaling with pulsating pain and red inflammation, please know – Rheumatoid Arthritis Guy is there!
Hello~
I noticed that you have both a blog and DS profile (mine is aharmony) as well. Keep up the good work. And if you don’t mind I would like to add you to my blog roll?!
I’m slowly making my way through your posts and you seem like such a cool person! I really enjoy reading what you have to say
Hi Rheumatoid Arthritis guy! I just discovered your blog and I think you’re just what we all need. I can’t wait to read the rest!
Hi R-A-G,
Nice blog site! I was sitting here tonight after going to the rheumatologist today – blood, xray, medication etc… Thought that there must be others out there and what a great idea it would be to share what we have all learnt so far into our adventures and quest for relief! A quick search on google blogs and hey presto http://www.rheumatoidarthritisguy.com
Well done and thank you for sharing
Regards
Rog
Just happened to come across your site while searching for info. on my weird blood test results from my last visit to the rheumatologist. I was hit with “sudden onset RA” at the age of 60. I didn’t know what was happening to me…violent hand pain one night…to the point of swelling and the splitting open of several fingers, a neck that would no longer turn, knees that no longer supported me,..a living death. My hubby took me to the E.R., but they sent me home with some pain meds…not knowing what was happening to me. Oddly, it was my psychiatrist (I have had SEVERE panic disorder and SEVERE uni-polar depression since age 23 and am on two medications for that disorder) who took one look at my suddenly crooked hands and said..”You have RA!” and managed to get me in to see a rheumatologist immediately. I was started on Prednisone..which led to violent behavior and had to be cut immediately to just 5 mg. Then came Methotrexate..8 pills every Saturday. Still no relief, and I wore wrist spints to do what I could of housework. The pain was unbearable…months without sleeping because of pain. Finally came Enbrel..which did not work..then Humira! Humira is injected every two weeks by my hubby as I no longer have the strength to push the needle. It gave me my life back…sort of…for about a year..although my wrists had already been destroyed. Now, my blood work is suddenly coming back all screwed up, I now have high cholesterol and high triglycerides (no..not my diet) and all these weird infections..plus crying spells, no drive to do anything and a constant “dying feeling” which is hard to describe. Still..I keep pushing along as we live in a remote country area on 118 acres…raise all our own food, never go into a town except for medications and to see my doctor and rheumatologist, and HATE the city and noise. My hubby and I are country people without living relatives or friends. Family died many, many years ago, but I guess that happens as one ages. I am 62 (too YOUNG to die
( ) and my hubby is 79, but in excellent health. I’ve only worked at hard physical labor type jobs as well as player piano restoration, etc. Now because of my hands, I can no longer do this, nor can I work in my shop. I have trouble just getting the garden in, and my poor hubby now has to do the roto-tilling. Back to the point…I’m so upset over weird lab tests..even my routine pap smear from my regular doctor was abnormal for the FIRST time in my entire life. I don’t know what to do. Neither does my rheumatologist…Do I continue with Methotrexate and Humira? Or do I stop these drugs and become bed-ridden? At this moment, I wish it was just all over..except I haven’t any beliefs in a “hereafter” and know the “END” is “THE END”. My hubby just will not discuss it with me and “pretends” that I don’t have RA. Adult life has been hard for me..with Panic Disorder and Severe Depression at age 3, raising three step-children who are grown, married and long-gone, (I have none of my own), an accident in 1978 where I lost my entire right eye and lower half of my face (I had been a fashion model before my marriage 
( ), but still filled with HOPE that the latter years of my life would be healthy and happy. Then RA HIT!! I dealt with that mountain, too..all alone…as usual (aren’t we all..in reality?) But now…with the odd blood tests, constant tired feeling and intermittent dizziness, I’m having problems deciding just what to do. All the FIGHT I’ve always had to conquer each problem seems to have gone out of me. I wish I had someone to talk to who is dealing with the same problems as I am having trouble handling the fact that I MAY die soon..having lived a meaningless life. I am NOT clinically depressed right now, but just having problems coping. WHY isn’t there a COMPLETE CURE for RA NOW?? The rheumatologist told me the Humira would “cure” me, but heck..it’s a band-aid approach and now I have other health problems because of it. If I stop it, though, I will go back to the way I was. I do not have “friends” to help with housework, cooking, mowing, the farmwork, the garden, putting up our food, etc. and my hubby really relies on me. This is funny, but when I was terribly sick, he just stayed in bed, watched TV and complained he was hungry, needed a drink of water, etc. In a way, I guess, it FORCED me to move and use wrist splints and crawl on my knees to do things as I’ve always looked after him since his retirement. Before the RA, I built a THREE story addition on to our small home, too..with only minimal help from my husband. Physically, I was always a VERY STRONG lady for my size with tremendous strength. Now that’s gone….I was lucky to be able to finally complete my FIRST new kichen. Now it’s complete and gorgeous, but I feel I will die before I’ve used it very long. The bottom line is this…”I’M SCARED AS HELL!!!” I just wish there was a true cure for this disease. Oh well…”that which doesn’t kill us just makes us stronger”, I suppose.
Came across your site via Twitter… Haven’t had a proper look yet but certainly liking it so far!
I was diagnosed with stills disease aka juvenile idiopathic arthritis when I was 2. I’m now 34 and while its been in remission for 22 years, the damage was done to my joints so I’ve had various joint replacements.
Absolutely loving your alias…. especially as I should rename myself Bionic Woman! hehe
Keep up the good work!
Congratulations on your new website. Very well done. I learned about it from a message from Daily Strength website.
You are way too young to suffer from this insiduous disease. I am 62 and I am just starting to live with the pains, achiness and limitations of this disease! Every day is a challenge, that’s for sure. I just had knee replacement therapy and probably on my way to be a bionic woman also! The best part is the pain is gone from that knee, but the pac men seemed to have moved further down into my ankles now. If I did not know any better, I would think an alien has invaded by body and has moved on to another dwelling (my ankles)! There has to be something else coming down the pike that can quiet our immune systems down and not do so much damage to the rest of our bodies. I will be waiting for that day, as I am only taking NSAIDS and small amounts of pain killers.
Anyway I will be visiting your site often and I wish you long remissions and a painfree life! What more can I wish for you?
Best wishes,
Lenore from NJ
I think we might be related! I’m going to follow you on Twitter as I like your graphic a lot! Thanks for adding me to your blogroll, I’ll put you on mine! This is a great blog, I can tell you’ve put a lot of work into it!
I’m intrigued… the wool socks, what do they do!? And more importantly, do they work and should I get some??
Love your blog.
RAGuy – love your blog. Keep up the good work.
Catlady – read your comment and sorry you are so discouraged.Humira didn’t work for me but finding orencia much better. There are other drugs out there, you just have to find the right one for you.
Best wishes to everyone. We just have to keep on fighting!!!
Humira Enbrel Arava Methotrex -what? Its enough to make my head spin.(and my stomach nausiated) Orencia is better but we need a cure. Keep up the good work R-A-G. I find my story very similar to yours. Didn’t get diagnosed right away. Had pain all through my 20′s but thought it was cause I worked hard-diagnosed at 27 (every1 says too young for that of course), in my 30′s trying to find a way to live with this monster.
I just want to say: congratulations because you really have courage and believe in yourself. This new amazing way to meet with other people who have RA is incredible.
Never forget that the success in controlling the RA is based on three pillars. The first one is to follow the medications of the doctor. Second, do daily exercises to keep the normal function of the joints. And third the positive mental attitude.
YOU ARE A REAL SUPER HERO!!
your friend A. Gutiérrez
I was just diagnosed with RA last week and I’m only 30. Too bad I feel like I’m 90. I look forward to learning more.
Although not confirmed, my wife has RA. She will receive that confirmation upon visiting the rheumatologist in December. I’ve subscribed to this blog so I both educated myself and try to understand this life-trial my wife will be entering. Is there any input on how a spouse can help?
Hi I am 28 years old diagnosed with RA. In December 2008 my knees and feet got swollen. I was hospital for three days x-rays blood work and fluid taking out of me. Could not walk for three months not knowing what it was. She sent me to the arthritis doctor. The doctor did not want to touch me she thought I had aids. When all the blood work was done then she said it was ra. I would have it for the rest of my life. Now I have pain all over sometimes I can’t even move. I have four or more meds in the morning what else can I do. I am getting to know about the subject by buying books and going on the enternet for help. I get lots of support so thats to all.
Thanks to All sorry.
RA Guy….all us Ra-er’s need a Super Hero to look up to………..Thanx for this blog…..It make’s me laugh out loud!!!!! Staying tuned for more your mighty adventures…..:)
I’m 35 and was recently diagnosed with RA (although I tried to convince the rheumatologist otherwise!).
For several years I dismissed all the symptoms as nothing more than the stress of being a recently divorced single mother, trying to make ends meet as an administrative assistant by day and a piano instructor in my home studio by night (my own super-hero identity in the making?). Not once did I think my poor health was due to anything other than sheer exhaustion and stress.
So when the rheumatologist confirmed what my family doctor speculated, I was in shock. I went into denial. I tried to convince myself that I could be healthy if I just tried harder to manage the stress better and stuck to a strict diet/exercise plan.
In fact, I think I still am in denial at times: I’m struggling, stubborn, and stupefied.
I agree with others that a diagnosis of RA causes feelings of isolation due to the general population’s lack of knowledge about it (myself formerly included). I’ve always ‘burned the candle at both ends’ to take care of myself and my family, and admitting to myself that I cannot physically do something was/is very upsetting.
But reading your blog and the interactions with others with RA has helped immensely. I’ve laughed a lot, and laughter is the best medicine of all, right?
And now I have all the more reason to finally purchase a grand piano before the age of 40….it’s going to happen, and I’m going to play Chopin on it beautifully, with all my students on stage with me, and my two wonderful children at my side.
Thank you, and best wishes.
Hello
I was looking around for a web site where I could talk about my experience about RA. And I noticed your blog. I was diagnosed when I was 16 and I am now 26. I have never been in remission and I had a really bad flare around 19 where it went everywhere, it seemed like where ever there was a joint the arthritis was there. Your story confirms what I feel is going to happen to me when I turn 30, my body going haywire, but I do know my doctor is working hard to prevent that. You story sounds like my story that all. Keep blogging.
My story is very similar to yours. Although my symtoms started in my teens and i thought they had something to do with overweight. I was diagnosed six months ago. im 30 now. Dealing with this illness is hard sometimes… i had to quit my job because of the sress and the pain that was coming stronger than ever. thank you for being there. besos from Argentina
RA Guy~
I found your site through another RA blog I read and I have to admit, your comic strip made me laugh out loud. Actually, the first post I read was your mothers- beautiful and I couldn’t be more happy that I have a mom just like that. I’m 23 and I was diagnosed 6 months ago not only with RA but Fibromyalgia also. 23!! I’ve had many questions and found a lot of sites that I can visit for info and be in the “presence” of people in my situation but it’s your site and others that don’t let RA rule your life that bring light back into my eyes when I’m in one of those moods.
I was told to get blood drawn because my ankle had been swollen for a month.. told I was positive for it but my family doc (whom I’ve had for 20 years) had hope that it was a false positive. He tested me again.. it was not (darnable)! In March I went to my first Rheumy appt who did not believe that I had RA because I didn’t seem to have pain when he pressed here/there.. got tested yet again and definitely a positive. I am not as bad off (maybe advanced is better) as some of you and I’m still getting used to what a flare is- fact of the matter is though, I’ve not been pain free for 5 years!
Sorry I started to ramble- it’s just all very mind boggling.. I was already worried about having kids with my bad back let alone something like RA that can worsen at any time. *Sigh* Anyhow, blogs like yours remind me to keep my chin up and head in the game. I won’t give up and I’ll take my meds if it means someday I might be better off.
Anyone reading this- you can find me on Facebook, I’m a regular
Add me, I always appreciate more friends, especially those that understand a picture post of a weeks worth of pills! lol
Congratulations on your website. I’ve only been diagnosed since last September. I found great supportive material on rawarrior. Check it out. Now there are two great websites.
Hello there fellow fighter!
Nice to read your posts…I gave up full time work 2 years ago, no. not because of RA I was made redundant…but hey I started a cooking blog, something I should have done years ago, & I’ve met so many friends, I’m having a great time, cooking & eating & blogging, methinks maybe I shouldn’t eat all the foods I make, not all gluten free, but if I read everything I shouldn’t eat I’d be on a glass of water all day lol..keep up the good work x
Great blog site, RA Guy. I admire your attitude and determination to keep moving forward despite fighting a disease that throws sucker punches at any opportunity. Love that you’ve included yoga and meditation to your regimen of lifestyle reclamation. I am a former yoga and pilates instructor…had to give it up as a profession after my RA diagnosis three years ago. I continue to practice and also rely heavily on meditation to help me coexist with pain and acceptance of a disease I never saw coming. Good luck on your journey and be well.
Your story sounds a lot like mine except I thought my pain was from bursitis, ha!
What woke me from my early diagnosis fog was a book called The New Arthritis Breakthrough by Henry Scammell. Well that and roadback.org was what gave me a new life. 8 years after diagnosis I can hike again so long as I don’t push myself too hard and I listen to my body.
Sheer determination is the very best weapon against RA of you ask me…
Hola. Yo estoy aprendiendo cada día más de esto, desde diciembre 2009 que diagnosticaron a mi hijito, de 2 años. A veces encuentro esperanza y a veces mi preocupación aumenta, no se que pasará más adelante. Día a día pido a Dios para que Diego este bien, y Él me escucha, mi hijo hasta ahora esta bien, a veces con dolor, pero con los medicamentos se controla, yo casi nunca me enfermo y casi nunca tengo dolor en mi cuerpo, pero al ver a mi hijo me duele mucho más que eso, quisiera poder hacer algo más. Gracias por compartir.
Hello all, I don’t know whether to be pleased I was diagnosed at 19 after five or so years of symptoms, or to be darn jealous of all those older newly-diagnosed folk – must be fabulous to be pain free most of your life! As it happens, I hope I can inspire all the new people – medication is really working wonders for me. I can’t to all the things so many people take for granted, but there are so many small victories along the way that make it all worth while. In my twenties, I could only wear the most awful clod-hopping shoes, and thanks to my treatment, I can now wear heals again (I’m 35 now). Like I said, it’s a small thing, and it’s not for very long, so I make the most of it while I can! Take each day as it comes, and enjoy what you can…
Hello,
It just happened to be on my very worst ever day of RA, that I stumbled upon your site. I’m so glad I did : ) I am in my late 30′s and have been living with RA for the past 5 years. It’s been a never ending roller coaster of not only pain, but emotions too. There are those days when I feel as though I can take on the world, and then there are those days where I feel as though I am crushed beneath it in a small heap. Having one of those heaping days today,your site was a welcome distraction for me. I will be sure to check back often. I hear and feel every word. Deb
Hi all
I stumbled acros this blog when researching the effect of piano playing on someone with arthritis.
I just bought a piano today and am loving it already – not a grand piano – the dollars only extended to an upright! I have played since a child and also run a hobby studio but until now hadn’t owend an “acoustic” piano.
I have had RA for four years now and have fortunately controlled it very well with Enbrel since the latter part of the first year.
I lead a very full life and am a self employed Solicitor (part time Muso) and full ime Dad to a very special little boy who is now 6 – I am also lucky to have a very supportive wife. I have had a couple of speed bumps along the way (a double hip replacement in 2008)and initial CRP readings in the 130′s. However I can truthfully say that I am enjoying my life more than I ever have and I had a pretty damned good time before getting RA in 2006 at the age of 40 ( I am now 45). I wish evryone on this blog all the very best with their lives.
Steve
Hi RA Guy,
I know we kind of met each other via twitter awhile back and how much hard work you do along with the rest of the community. Congratulations! I am hoping we can work together. You’re so current with your information so you’ve probably heard about my RA memoir. My story tells of my journey with RA and it is a story of love and hope. I’d be so grateful if you could support me and the RA community by putting it on your book list.
Enemy Within – A memoir of strength,determination and acceptance – by Karen Ager.
The Arthritis Foundation is supportive; there is an article in AT about my work with advocacy.
It would be nice to be on your team. With thanks for your consideration Karen
Thanks and I hope you are well
Karen
Hi,
I’ve just found your website, I’ve had RA since I was 14, I’m about to turn 28. I think I must have tried every drug under the sun, currently on Simponi injections, prednisolone, mobic and methotrexate, trying so hard to get down to a lower dose of the prednisolone since I seem to have been on 7mg or more forever, currently it has taken me 6 months to get that to 6.5mg daily. Going through a flare up this week doing what you do – too much, then my body says ‘Oi there, slow down misses!!’. Thanks for sharing your thoughts and life living with RA, I would love to help more people who’ve only just been diagnosed, feel free to write to me and I’ll try and help
Hi Rheumatoid Arthritis Guy!
I just stumbled across your website and I think it’s so courageous of you to share your story with others. I was diagnosed with Systemic Onset of JRA at 12 and after the rollercoaster of ups and downs I’ve had with it, at 19 I’ve decided to blog about my experiences too.
I also think that the way you’ve condensed “Rheumatoid Arthritis” into a 60-second guide is brilliant! Imagine if this little concept was available to newly diagnosed patients and families: there would be a lot less confusion amongst us all, for sure! Keep up your positive attitude and humourous take, on what can seem like an endless battle between oneself.
And the idea that we could all be little heroes in fighting this disease is inspiring and heart-warming.
I’m currently building up some ideas for a zine (self-crafted magazine-type book), on Arthritis and also plan to write a novel/memoir on my experiences.
Best wishes for your health,
Lauretta
Hi RAguy, I was told about your site from someone on the RA support group. I was asking if there were any guys with RA since most of the blogs are from women. Ironically as I read your post from today, I could really relate. I also was forced to leave the classroom, however, my reason was my inability to restrain a 6 year old autistic child. I was a special ed teacher. I’m older than you but after learning about RA (diagnosed around 4 years ago) after getting the doctor run around, I realize that I’ve had symptoms way back to my 20′s. Fortunately they didn’t get severe till the last 15 years or so. I look forward to exploring this site. It would be nice to get a man’s prospective on this wonderful thing we call “RA”.
Feel good or at least pretend.
Bob
I admire all that you’ve done and continue to do! Keep it up!
~ Peter
Hi! I found your blog while looking for resources after my psoriatic arthritis diagnosis. Thank you for providing such an informative, entertaining and honest view of living with arthritis and all that entails. I’m enjoying Chronic Pain Wizard’s blog as well (http://chronicpainwizard.blogspot.com). I find both your blogs uplifting as I get used to my new “PsA Powers” as my 5 kids like to call them (canes, wheelchair, “the voice”) and grow accustomed to my sudden (within the past 6 weeks) challenges just to move. Laughter truly is the best medicine, and I thank you for providing me with several doses a week!
Hi,
I am a freelance writer with Web MD who is working on a story about RA in young people in their 20s. I was hoping you might be willing to speak with me (or know someone who is), as I see you were diagnosed in your 20s. I would really like to include a male perspective in the piece. Shoot me an email if you are interested.
Thanks,
Carolyn
Hi RA guy!
I stumbled across your website when I was searching for NRAS running tops as I am running for them this year in the Great North Run
I was diagnosed around 3 years ago when I was 28 although lived with alot of pain and discomfort until I was diagnosed. It can be quite depressing when at 27 you can’t put your own socks on without help or it taking about 20 minutes! I finally got a diagnosis after a bit of a battle to get there and was started on some meds. I took up running just over a year ago as a bit of a personal challenge and now want to do something in return to NRAS who raise money for RA sufferers!
Loving your website and blogs
Hi RA Guy
Just found your blog.
It’s wonderful. wish I could have your sence of humor.
Needed the lift.
Thanks
Linda
Thanks RA Guy-
for blogging and sharing and bringing your superhero rays of light to the murky RA world- keep up the good fight!
from a grateful citizen
Thanks RA Guy- reading your blog made the tears flow. i like everyone with RA can relate to every thing you said..the pains unreal and the fact that you living on time bomb..its hard for people to understand the pain we suffer.Thank RA Guy Tricia
thanks for sharing this with others that have the same problem. i dont feel alone on this anymore.
I just wanted to say that I love your site! I just got a definitive diagnosis 4 days ago, but have been battling this for about 6 years. I just wanted you to know that you are a superhero and your website has already provided hope for me. Thank you, Rheumatoid Arthritis Guy, thank you!
RA Guy,
I just found your site, and I’m glad it’s here. I needed some humor to move me forward. Dasnosis: seronegative RA. Presented last year with an autoimmune tsunami (woke one Friday feeling normal; couldn’t hold a pen by the end of the day). Looking back, though, symptoms were there on and off for decades. As others have noted, this disease is very isolating and unpredictable.
RA Guy,
So I managed to send my comment by accident before I finished. Perfect. Just like my life now. Maybe God was telling me to shut up, but I’m going to keep talking, at least a a little more. I’m a 52-year-old single mom. I’m also an emergency pediatrician (like George Clooney was in ER, with a life not at all like George Clooney’s or his character’s). You might think that my colleagues would “get it.” They don’t. It took a broken pelvis for my director to believe what I have is real.
As you pointed out, cancer and diabetes are taken more seriously. Even among autoimmune disorders, RA commands only moderate respect, especially compared to lupus. Part of that could be because symptoms often aren’t visible. Another reason, though, could be because people are less likely to die directly from RA than they are from these other diseases. They may become disabled. They may succumb to complications from meds or surgery. But RA, itself, is not thought of as a major cause of mortality, which is the easiest outcome to measure and understand.
What the world, including the medical profession, doesn’t understand is that RA can rob a person of his or her reason and will to stay alive. It’s not just a nuisance. Just living becomes painful. And being seronegative is not a reason to feel “lucky,” like one website suggested. That’s why I was online tonight. I was having one of those “I’m a lousy parent and could lose everything I’ve worked for” moments and was looking for someone, somewhere who knew what those feelings were like. Anyway, I enjoyed the reading, got a laugh, and feel a little less alone. All good things.
Finally, my specialty is not rheumatology, but if I can ever be of use in helping with medical issues or questions (obviously nothing diagnostic or related to specific cases), feel free to contact me. I’d be happy to try to make someone else’s journey through autoimmunity easier.
I was diagnosed with Juvenile Rheumatoid Arthritis when I was only 14 months old. I’m 43 now so I’ve been dealing with this nasty disease for 42 years now so I have a little experience in the game! I’ve been on all the drugs (& I mean ALL of them), I’ve been done alot of physiotherapy, had several operations, & have dealt with various specialists including my current family doctor, rheumatologist, chiropractor, massage therapist & acupunturist & I’m still looking for that evasive CURE! Maybe one day….just gotta keep my chin up & keep hoping right? I just take it “one day at a time!” My worst time of day is in the morning when my stiffness makes getting out of bed & walking about 10 ft to the bathroom very diffcult (sometimes I wish I had a scooter for the morning but then I’d never get going right? – as you all know that you have to start moving the joints to get them to start working even on your BAD days when the RA is telling your body it’s not going to co-operate!) I recently fell (tripped over a cement curb in a parking lot) & broke my right knee-cap & ended up spending a month in the hospital to recover & then another month at a rehab center for physiotherapy to get the knee working again. I go back to my surgeon next Wed. & hopefully everything is healed & I can get back to my normal routine! I had seen him 6 weeks after my surgery because that’s when a normal knee is supposed to be healed but with the drugs I’m on (currently Enbrel & prednisone), my healing process was much slower so of course the xrays showed that the knee wasn’t completely healed yet so I had to go back to see him in another 6 weeks so now at this 12 week appt. my knee better be healed or me & the RA are going to have a serious talk about who’s in charge here! Anyways I do what I can & try not to dwell on the things I can’t do. I could never sit cross-legged on the floor for story-time in kindergarten when I was in school but hey I really didn’t miss that too much as I was given a chair to sit on & had a much better view of everything! The only thing I really miss, as a woman, is being able to wear beautiful high-heeled shoes! I’m sorry but flats just aren’t that sexy no matter how much you dress them up! Well that’s my story! Glad to hear everyone’s stories & comments here & thanks RA Guy for setting up such a fantastic website! Looking forward to talking to you again:) Have a great day & remember the only disabilities you have are the ones in your mind…you are an “Able-bodied person” in a million different ways so stay positive:)
Hi, I am a daughter of one superhero and that is exactly what you all are. This day is not about celebrating the disease, it is about the way you are living with it. And I am so proud of all of you.
All of you guys and gals with RA are hero’s and I don’t know how you do it. My favorite nehpew (he’s the only one I’ve got
) – just got diagnosed with RA so naturally I started researching. I’m working on a website for him too so hopefully we can get as much information out there as possible.
Thank you guys for being so open about stuff like this.
I love this site, I really really do. Never have I found a resource where I could read things from so many people that could mean so much to me and my life. I see myself in most of the postings. I can relate to you, too RA Guy, in that my RA started a long long time before any diagnosis was made – in my early 20s as a matter of fact – I had no inkling either.
Keep up the great work with your site – I appreciate it’s existence!!!
A shout out to everyone on here, too – keep strong!
Hi RA Guy. Thank you for this wonderful site. I don’t feel so alone now.
I am 24 years old.
I am constantly fatigued, have constant joint pain, and the always pleasant morning stiffness.
Over the last 5 years I have had these symptoms plus also an outbreak of urticaria which they found no cause for and also a rash similar to pityriasis rosea, but they weren’t sure if that is what it was.
I have only had these 2 skin problems, it is the fatigue and pain that never go away. It does flare up and get worse and get better at time, but is always there. My fingers and toes are starting to change shape.
I had blood work done …
I had a positive ANA with low titre 1:80 speckled.
My RA Factor came back negative.
My dad has been having treatment for 5 years for the same things, they say his illness acts like RA but may not be. Neither of us can get a definitive diagnosis. My hands have started to change shape and he will start to notice soon. (He doesn’t know it is this bad in me, he would feel guilty)
It is nice to know that not everyone gets a diagnosis straight away but that there are other young people who have experienced what I am.
Thanks again.
Any tips?
Hi RA guy,
I am a 30-yr old male diagnosed with RA a year ago. I have been competing in triathlons and recently completed my first Ironman race in Coeur d’Alene, Idaho. This was and continues to be an extremely tough diagnosis for a person as active as myself. If there is anything I can do to help, please let me know. Best wishes-
Hi Ra guy my name is Jerry nick name “Buzzsaw”. I am 53 years young Married to my best friend for 30+ years, have 3 Children and 4 beautiful Grandchildren. I as diagnosed with Ra 11 mos ago. Probably had it for 2 or more years. I just wanted to tell you I enjoy your sight and your humor! Sometimes that is all we have when we feel like crap inside! My thumbs are pretty well shot and no more power lifting for this guy! I still work out in the Gym but have come to realize that I can’t do what I used to. I think that is the hardest part about this disease, we have to accept the limitations that it puts on us. Don’t get me wrong I will never give up! I have learned to give it to God because I truly believe that God will heal me! If not in this lifetime then in the next Thank again and keep writing!!
It looks like you really went through the medical ringer. I jumped through similar hoops to no avail, actually, even though what I have acts a lot like RA. So, I get the you don’t look sick and therefore you aren’t sick because no one can figure it out anyway.
I did get a kick out of your what’s wrong with this picture cartoon. There’s a lot of truth in that. Hope you get to feeling better.
Hello all. I just came across yr website and find it great! At 39 i was diagnosed with chronic RA and at 43 with rectal colitis. I also got a lazy thyrod gland…”hypothyroid”. I’m 45 now and on Orencia.. My transminases are elevated due to the treatment. Orencia is my 8th trial treatment. I’ve tried the most known meds and nothing seems to work. Actemra caused a respiratory problem after a year and a half of applying it via IV.
Living with RA is difficult, but people’s indifference and lack of understanding is hard to cope with especially at work. I can easily relate to most of yr stories. Thanks for sharing!
Hi,I was diagnosed within 2 weeks!I was out walking and suddenly my knee locked the next day I couldn’t walk and it went downhill from there, that was 4 years ago now.But I have become a different person since having it.Having RA has made me determined and stubborn,It will not win!!.I am very lucky as I am still working with amazing kids whose lives are really crappy.Even on my bad days I will drag myself to work for them,they are the best medicine I take.
Omg… I just came across this sight… Hats off to RA guy this is just awesome what you have done and is so helpfully to so many including me, I have lupus,diabetes HBP RA and a bleeding tendency I can so totally relate to you and all with RA… Thanks for keeping it real and giving us hope through humor …. Rock on!!!
Your blog is truly inspiring for me. I’m a 22 year old student diagnosed with severe RA in August 2011, and I’ve just started to blog about it myself, in the hopes of reaching out to the RA community and finding myself and my own ways of coping in the process. Thank you for this blog, which has been a huge inspiration.
I would love to add you to my blogroll, if that’s acceptable.
Thank you,
Kathryn
RA guy,
I was diagnosed with RA 3 yrs ago and I’m still able to get around pretty well. But now I have planned a week’s trip to Disneyworld with my husband, hyperactive 6 yr old, and 9 yr old. I’m kind of worried about surviving the trip. We are taking a stroller for the 6 yr old for when she is exhausted at the end of the day, and also for hanging stuff on and for me to hang onto when I’m really tired
I was wondering if any of your readers might be able to provide me with any tips for surviving Disneyworld with RA?
Nice to meet you RA Guy. Look forward to reading your blogs. I just started one myself since I’m held hostage by RA during this rough winter season. You have joined your voice to countless fellow warriors and I thank you for that.
Hello RAGuy. I just ran across your site and all I can say is THANK YOU! I was formally diagnosed April 2011 (I self diagnosed Jan 2011 but my primary wouldn’t believe it until I begged for the bloodwork). Your 60 sec doc on RA is awesome. Everything I read is right on; It’s so challenging to feel a way that’s so hard to explain and have those closest to you not comprehend. “But Cynthia you look so great!”… lol.. Again Thank you!
Just came across this site after looking for ages to find a group of men that have RA. My son came down with it this year and altho’ I am his “friend” more than “mom” because I have it also…he does need the male side. How does one register as a member to this group? I have sent him the link already. If you could email me to let him know it would be appreciated. Thank you so much for being there….
heya, iv come over this blog and it has been a really interesting, im 22 and had RA for about 4 years now. i want to make a profile to promote RA in teens and 20s.
just got a new ra doctor he seemed surprized my meds methtrx embril make me ill 2 days that surprise look when i say i have pain or energy problems 6 years ago i was a man now pain and pregnzone surprize doc im hurt n scared we pay 1000 dollars a month for my insure my family are always one step ahead of me i never catch up today i make the choice i quit when i go back next month no more meds ill take what comes
I love your 60-sec guide to RA!! Have you considered putting it on a t-shirt. I would love to be able to buy one or have the permission to use this on a t-shirt.
Hello RA Guy! I read your “About Me” and laughed and cried at the same time! Thank you for being so candid in sharing… your journey sounds oh so familiar. I was diagnosed with RA 1 1/2 years ago though looking back it’s been lurking around for nearly a decade. I’m struggling today with pain, been off work for 6 months now (wow, I was a jumping bean, now I feel like a couch potatoe!) I’m going to cut to the chase, DMARDS are not working much at all and my Reumy is wanting to start the Remacade Infusion Treatments and I’m scared. Any input from this support group would be appreciated. Thank you, thank you!
RaGuy – Did you ever remember taking quinolone antibiotics. Levaquin or Cipro or Avelox?
I took Levaquin and within 3 days I started having tons of joints, tendon and connective tissue issues. It’s been 14 months and I’ve been to all sorts of doctors with no resolution.
Hard to go through these types of issues at a young age. I wish I could bring more attentino to my issues that many others are suffering such as you have.
Wow. You ARE a superhero! A friend with RA posted this on facebook. I learned so much from your RA in 60 seconds. This is a great public service and clearly you are insanely talented. These illustrations rock.
Please let me know if you should start an additional blog with like “calculus in 60 seconds.” You need a series! If your real identity isn’t a teacher, the world is missing out.
hello. I have been strangely ill for 15 yrs. in so much pain and enstranged from everyone. I was diagnosed with ra 2 weeks ago and possibly lupas. Ive never talked on a computer before i havent talked much at all in yrs, catlady your not alone,
God Bless you RA Guy. I needed smiles & chuckles tonite and you provided them to me. I’m very anxiously awaiting my return appointment to the rheumie’s tomorrow. He said all my signs & symptoms are RA and the trial prednisone worked after two doses. But my bloodwork came back normal so I’m confused…Really scared. Thanks for being there for so many!
Thanks so much for having this site….I don’t have RA, but I was diagnosed with ankylosing spondylitis (AS) a few months ago, and as I ride on the medication roller coaster and figure out how to negotiate my daily life….it helps so much to hear how others cope.
Thanks for the super site RA Guy! So encouraging!
I have 6 years with RA, Im 33, but my symptoms started on my early 20′s. I was on metrotrexate and steroids for a while with no effect. Then I started on Actemra and in the first month my Protein C reactive went back to normal. I also have anxiety and started treatment after my actemra (5 months after). Actemra was great for me, but still had some pain here and there (lot less though) now Im remission, but I have the great question mark on whether tmy remission is due to my anxiety treatment or the actemra or both. I have always been extremely stressed up for everything, anxious and prefectionist, so I tend to relate my brain chemical imbalance and stress to my RA. Anyways, this blog is super great!! If any one has other mental disorders and have RA let me know if you have seen a conection. Thanks!!!
I was diagnosed with JRA when I was 13. I’m now 25 and have had both hips and both knees replaced. After living with RA for 12 years, I can say there are good days and bad. I had the very unlucky fate of not being helped at all by any medications. I stopped taking all medications about five years ago. I was sick of doctors and wanted to just stop. In those five years, I’ve had four surgeries that changed my life. I can walk better than I have since I was a teenager!
I’ve since scheduled my first rheumatologist appointment in almost five years. With all my recent flare ups I’ve decided to give medication a try once again. Your story is inspiring and I wish you luck with conqeuring this crazy disease.
I was diagnosed with severe RA when I was 12. That was 30 years ago. How time flies. I have tried many, many drugs, naturopathic therapies, had my amalgams removed by Dr. Huggins, had a hip and both knees replaced, used a cane through college and have been told millions of times how I am “too young and pretty” to have this disease-as if age and physical beauty have anything to do with this insidious disease. I am sick and tired of being sick and tired. But life must still go on, right? I am just so lucky to have married a guy that I have known since middle school who has been my personal hero for 20 years now. I am a true believer in the movement to cure diseases with foods. I just watched the movie Fat, Sick and Dying about juicing and the documentary about Dr. Gerson and the cure for cancer (both on Netflix). I know that many of you think that since the medical community doesn’t endorse or believe that this treatment can cure diseases that it is not an option for us. The funny thing about the medical community is that they don’t know what this disease is, what really causes it, where it comes from or any beneficial treatments without severe side effects. So what makes them the experts?
I would like for all of us who suffer from this disease to take a moment and really look at our diets. Since the traditional, western medicine hasnt helped me in 30 years, I am trying an alternative: the Anti-Inflammatory Diet. Dr. Weil has a food pyramid on his website that breaks it down. It is basically a whole food approach to eating-lots of vegetables, fruits, no wheat, etc. Many people with RA are also allergic to wheat or gluten. Hmmm. I started the diet last Wednesday and I am following it strictly. I really want to experiment and see, once and for all, if a micronutrient diet really helps or even cures RA. Has anyone reading this blog been to a Gerson clinic or seriously tried this approach? I would love to hear if vegans get this.
Hi RA Guy, I found your blog via Pinterest! Although I have not currently got the diagnosis of RA I do have PA(psoriatic Arthritis). I have gotten the RA diagnosis once but it was changed to PA, but in my research it’s like they are kissing cousins. Lol. They are both auto immune diseases, they both not only affect joints but can affect organs, connective tissue etc… Thanks for the blog and best wishes to ya!
So happy I have found this site. Sitting here and wanting to share it with my colleagues, particularly the 60 second guide! Diagnosed in July and on Methotrexate with (touch wood big style) only minor side effects so far. Lost all strength in my wrists, can’t use a stapler, struggling to cut up my dinner and need to change to an automatic car as my ankle hurts so much when I use the clutch. The real pain is the reaction when you finally give in and tell people what I am suffering with and how I feel, they respond with “oh my Aunty has that but she is OK she just gets on with it”!!!! It’s a shame you serve so long for murder in this Country. Also, tell me the login with an Occupational Health Nurse who says you’re disability is so bad that they can’t offer you a priority parking space as they are reserved for people with short term illnesses!
Thank you all. Somethimes I wanted to know if anyone else felt like me. Found out @14 now 41. Glad I found you all
Hi -
Is there a way to search your site? I’m new to RA (less than a year) and have burned through treatments so now am on pred, mtx, and now actemra. I’d love to search your comments and folks’ responses to treatments.
thanks!
Mary
Hey RA guy,
Nice to know there’s others out there–though to be honest, I’d rather none of us had it. 21 and had since 17. Has it been interesting, in a morbid sort of way. Best of luck everyone, perhaps one day this can be undone, even though I know it can’t be cured yet.
Thanks for this blog! — it’s quite reassuring when times get tough. I know it is for many others too.
Thanks for the comments. I was diagnosed last month, am on prednisone and soon methotrexate. I am sad, overwhelmed and very scared. No one knows but my husband and my doctor. I don’t dare tell the folks where I work for fear of losing my job. . Everything I read online terrifies.me. I think I need to hear something positive. And yes it hurts so bad…
Hi,
28 years old male here .. well i dont know from where to start..because i dont know how did this happen.. all i know that i had pain in right elbow 1 year ago and that pain was very very bad .. even without moving the elbow it was hurting ..Doctors didnt know what is this .. and they took the fluid sample and they did not find any virus etc.. anyway i lost some power in my right elbow and things become ok .. now again pain started on my right shoulder.. then now it has gone to right knee..and it is very fast.. Went to my left knee .. my left shoulder.. my right ankle my left thumb..
i went to see an orthopedist and he was a good man who told me that is not his job .. he sent me to the proper doctor and he diagnosed that i have RA. for me this is really really difficult to get up at morning .. and this is very painful .. but nobody can understand as i look normal.. i am 180 cm tall my weight is 75kg.. i used to run in a marathon .. i was going to gym also not every day but sometimes .. but i was active.. i know my two things were really bad .. one is eating habbits .. because i have been eating foodless food .. and second is sleeping habbit.. i used to sleep very very less.
i have been taking MTX 7.5mg for 4 weeks .. but that is not helping .. doctor has increased that to 15mg .. lets see if that helps ..
ah but this is painful .. i am a computer engineer .. with good job .. however this thing is affecting my job … people start to notice that i walk with limp since i am in pain..
i am still single .. just depressed who will marry
haha what to do ..
i have been reading alot about RA .. there are good things there are bad things.. but i just want to live normal ..even with medicince .. i dont expect a very active life .. but a normal ..
i just wanted to share this ..
I was diagnosed with RA three years ago, i have been suffering for the last six years. My doctor told me i have OA and keept me on meds for nearly two years, but I knew this was not OA, this was something more. I keep telling him check me for RA, he refused to, thats when i decided to se anoth doctor, by then I was having ankles, wrists, knees elboes and hip pain. While my new doctor checked me he said this is not OA, this is RA. I had lost so much time being miss diagnosed that I went through a depression. He put me on meds and things were getting better, till now. I am loosing grip with my hands, my right knee is going really bad on me and my hip is hurtting me a lot. I live in NJ, so we have cold weather here, my husband who has MS can not tolarate winters either, he can not tolarate heat either, so we decided to check out California. They say the weather there wont go above 85 in summer and around 50-60 in winters. If anyone leaves in california please let me know what city is good fo MS And RA?
I am 56yrs old and once was a very active person until i was dx with discoid lupus 5yrs ago which left me feeling unnaturally tired and joint pains,hair loss and slight skin lesions. Then about 2yrs ago starting getting inflammed swollen joints, would start in one joint and then move to different ones but would go away after couple of days. My dr did bloods rhematoid factor was 900 she sent me to rheumy who took a long time to dx palindromic rhematoid. Was put on hydroxychloriquine which i had to stop after 1mth due to it flaring my stomach ulcer. Then dx with autoimmune thyroidystis with multiple nodules on both sides of gland and mildly underactive thyroid, but no meds given. About 6wks ago my rheumatic pain has been constant nearly 24/7 and cant sleep with pain in my wrists, shoulder etc, hard to do housework, dressing etc, am off work but i do not want to go on methrotrexiate as suggested by my rheumy due to bad stomach but I still have not been told I have rheumatoid arthritis even though my rheumatoid factor is so high, because all other bloods are normal they say it is palindromic. Has anyone else progressed from palindromic to rheumatoid?. The pain is severe, am now worried i might have to give up work as the pain has never stayed this long before.
hey, i got diagnosed about a week ago after having months of severe pain, can anybody give me an web adress of were i can get information for my husband he simple dont understand the fact tha he cant just pick up my legs and thro them down on any anckle he wish i understand his position and anger after i had to give up a job inteview due to severe pain that i wish id rather turn to dust, with that our changes of moving out of the hell hole of a small town blown to pieces, docter did say that my illness is fast progesive and i have pain 24/7 even when i dont do anything. I just wished he understand how i feel having to give up what i love and never being able to move normal without feeling like crying out.
Hi RA guy! I am following you on facebook and I know you are in NY. I wanted to let you know I would love to meet you. If you have any down time and would like to meet with me and my husband please feel free to email or private message me on facebook. I hope things go well for you at the hospital for special surgery! I had my total knee replacement there and they are awesome! I live n Poughkeepsie and would look forward to meeting you. Have a wonderful stay here!
Im so glad I found you on facebook. It’s nice to know I’m not the only person dealing with the craziness of RA. Everything started when I was 17 and it took a very long time to get a diagnosis. Most Rheumatologists dismissed me or told me to wait until i turned 18 then they would see me, apparently I was too old for juvenile arthritis and too young for “normal” arthritis. The whole ordeal was pretty awful. A few years ago I found a great pain specialist that got me back on my feet and recommended a Rheumatologist that finally took me serious. Im 26 now and am being treated for RA, fibromyalgia and raynaud’s disease. I manage the pain the best I can but I always had that feeling of being on the outside. I started visiting a retirement home just to meet other people with arthritis but Ive never met anyone close to my age. Your pages have showed me that Im not alone and there are so many people who understand and are going through the same things I am. I truly appreciate what you do and am so grateful for all of your hard work. Thank you and stay healthy.
Im still trying to deal with my Ra , I was diognosed when I was 30 while I was carrying my son. I think I had ra before but never knew it was that , anyway two year on and its still active I’m still in pain I’m on metretrexate injectable 20 mg which I can’t tollerate well , had to stop other meds that where combined becauce I couldn’t
tolerate them . Basically not having much luck with meds and finding it hard to pace my self and getting a good nights sleep , fed up with the pain . My reumy has basically said I will still be in pain even on meds .??? I don’t get it . I have four kids and daily life is a struggle