Rheumatoid Arthritis Message Boards
The subject of RA message boards has come up recently in a couple of conversations. I want to ask what you think. From what I’ve heard, message boards and forums are popular sources of RA information. Some are fully moderated so that posts are kept positive and kind. Others are less so.
However, none are moderated for accuracy. A couple of doctors have mentioned to me their dismay at this fact. If someone writes an opinion on an RA message board, it is often taken for fact. Some doctors complain about confusing or inaccurate information. Maybe that is why one doctor practically laughed in my face about using the internet.
Why Rheumatoid Arthritis message boards are popular
While it frustrates some doctors, there are good reasons many people with RA seek help online. RA’ers require support and information. I know I did. This is probably also why there are so many blogging about Rheumatoid Arthritis.
I can think of five reasons Rheumatoid Arthritis is a most frustrating disease, requiring plenty of assistance:
- RA is an extremely complicated disease.
- RA is invisible, so support and accommodation is sometimes minimal.
- RA medications are complex and cause side effects.
- RA is emotionally devastating because of the intense pain and sudden disability.
- RA patients need help finding ways to manage sudden disability
What do you think about RA message boards?
- Do you use message boards more for support or information?
- How soon did you search online for Rheumatoid Arthritis information?
- How does your doctor react if you quote something that you read on the internet?
Note: The Facebook page for RA Warrior fans functions much like a message board. There is a wall for comments & discussion threads for various topics. The fans can keep the conversation going and post links they find helpful. It is also common to see questions posted so that others can add their opinions. I have postponed adding a message board to this website for now, but you are welcome to join the fabulous & positive group on our Facebook page.
Recommended reading:
Medical Records Tip for Your Rheumatoid Arthritis History: Read the Doctors’ notes
To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?
Rheumatoid Arthritis and Depression
RA, Blogging, and Mary Poppins
I have found blogs and message boards my savior, exactly for the reasons you stated, especially the “emotionally devasting” part. I was so alone and scared and not knowing what to expect but reading the information and postings on the internet gave me the support I needed. I think everyone has to use common sense when it comes to looking up medical information and only use reputable medical sites, and when reading blog postings or MB’s realize that everyone is different and what is good for one, not good for another. Plus with RA being such a complicated disease we can learn from each other. My nurse practioner actually asked me if I have been doing research on my meds and the disease, when I told her yes, she said good. I do think a small downside is that because of the internet, I am not sure doctors or NP’s give you all the information you need because they think you can just look it up…just a thought, not true in all cases. I was at first nervous about responding to blogs and MB’s and posting my own experiences, because I don’t usually, this is the first time ever I have got involved in something like this. I am finding there is no judgement and only support from fellow RA’rs, no matter how much you need to whine, everyone is so understanding, and that in itself is a god send. See I can’t believe I actually wrote this much…thanks for listening.
Good comment. Great question. I wonder whether that is one more reason doctors don’t tell us what to expect. 😕
Thanks Kelly. I don’t find all sites, blogs, MB’s, etc. helpful, but this one in particular has been.
Doctors get upset about the net and message boards b/c it take’s away their self appointed control… heck MANY doctors have various opinions and give conflicting information…. i had docs tell me things I knew were not true… so.. it happensall ways.. unfortunately a lot of ppl arnt taught to be careful information consumers. But we can always TRY to help others know things like Wikipedia isnt valid many times.. it’s not truly peer reviewed and inaccurate information can be provided there either intentionally or not.
Anyways, my feeling as a FBis that this already feeels sorta like a message board but not only that there are endless amounts of blogs, message boards and more out there on the net. It can easily become lost or overwhelming. The Arthritis foundation has message boards and even ppl they hire or at least promote their blogs and such… which i think is great but also has a special agenda. sometimes things are just overly controlled to protect people from things they dont want to know like.. oh people with arthritis have sex.. or arthritis can lead to death or wow, we all aren’t all hero’s poster childs and some of us do have issues with drug abuse or other things we like to pretend isn’t part of the real world of life.
Ooops am I allowed to say that here?
then we have the other end of ‘everything goes’ messsage boards and i dont know about you but I REALLY get tired of the alternative vitimin/juice/shot/ choclate pushers.. not saying none of these work or could not b e helpful but doesn tmean I want it shoved down my virtual throat everytime I try and reach out for support.
i don’t think most of us have the health to Babysit the people who post. it’s enough to do the blog alone.. or to post it.. or promote it.. or do all of this. i have wanted to do this sort of thing for yeaersssss yet i havn’t b/c i just dont have the energy and i wouldnt go for the message board thing b/c i just feel like.. how much MORE can I do and will it REALLY help.
My opinion is that there are a ton of message boards around…. many active.. many not… that’s the nature of that sort of thing and the time/energy that goes into adding and moderating one.. will it really be that worthwhile in the long run.. will it make a difference??
I know for me as someone who has had JRA for many years… I limit the time i spend at sites for people with this disease. I believe in awareness and information but i just LOVE how this blog, etc is just perfect… not 2 long.. not 2 short.. messages allowed if ur on facebook.. it doesnt follow the grain of some social/political agenda… etc
i think adding a message board will take away it’s simplicity and the value of it being YOU taking the time to do this and share and help vs a whole bunch of ppl coming together to discuss whatever… that DOES have its place.. it IS great.. when you NEED that sort of thing… esp those newly dx or facing something ‘different’ but again, those places exist and i REALLY love how things are here. It’s personable… etc etc…
it’s also funny
i know, for me.. i LOVE to help people.. get information for them. help them find accurate reliable information however on the other side of things, I can’t spend very much time reading and trying to help lots of people and it gets discouraging, depressing, and difficult to manage the emotions. I think it’s real nice like it is. It’s the RA warrior.. by you.. not the RA version of NA or online peer therapy or whatever
okay can you TELL im very opinionated on the topic? I feel a lot more strongly about it then I even realized until I started typing my reaction.
Peace!
Ohh BTW- I avoid telling my doctors I Read ANYTHING from the Internet LOL. I tend to.. make it sound like something i heard and if i REALLY Want to discuss it seriously, I get peer reviewed journal articles to back up my concern and so they will find it more acceptable and palatable for their egos.
I found most of my JRA support through attending AJAO (american juvenile arthritis organization) conferences and talking with the individual young adults with this disease. I learned most from them and hopefully them from me. I also google and look for sites ran by people who actually LIVE with and have the disease. I will go to say webMD or whatever for some basic information if there is something new i dont know about or need the definition of. I also look for information from multiple sites to decide on its validity.. at least.. validity for my personal intuition which may not bode well with popular medical opinion.
My primary reason for using message boards in the past have mostly been for support.. to get and give. I went for medical information when it was me needing to share something iw as facing and wanting to know if others were out there like myself …. so i guess thats indirectly support as well…. more like validation…. so i would say many times it was for support.
ive been involved with alot of message boards and notice people come for information quite a bit but in that.. it turns into support as well.
I also think this depends on being female or male. Research has implied that females are more likely to use social networking etc for support while males dont tend to go this direction but if they do, its for information. i think that has more to do with society and its expectations but whatever the case, this too makes a difference. I have also noticed that peop[le will send their friends/family to message boards to get information and validate their issues coming from someone else.. not just the person with RA or whatever… i believe i had taken stuff i found online and used to to Prove to my mom or some other doubting thomas that I wasn’t the ONLY one that experienced this or that!!
I first looked for information/support online when I got my own computer in my early 20’s. I had email since late high school but was very very nervous about the net. I did slowly get information over time but i didnt REALLY get into this whole blogging, social networking thing until I was about 25…. im 32 now so it has been awhile but not that long esp since i started using computers in 2nd grade.
i find that, if you know what your doing, information online can be very helpful and useful but unfortunately, a lot of people aren’t sure where and how to get accurate information.
okay i think i covered all of your questions!
I searched the internet immediately after being diagnosed. That’s how I found you, Kelly! Like you said, some things I have found are quite helpful and some are probably very inaccurate. My doctor seemed to encourage me to look on the internet but also prepared me for some of the inaccurate things I might find. By that I mean he told me he knew I would probably look online for information but not let any of that information replace what he was telling me…. just to use it as an educational tool. I think that was smart advice.
Reality is the doctors don’t have the time or patience to really sit down with us and tell us what to expect. And b/c RA is different in each person – what works for one doesn’t work for another. I think that is why the msg boards are important. I just in the last couple of weeks have gotten very active. I’ve found ppl being very judgmental – yes, RA ppl. Meaning, if you aren’t doing it their way, you are obviously wrong. Whatever. But, that is not across the board. most people have been nice and helpful and I like hearing other people’s stories, challenges and successes.
Yes, there are a mixture of supportive & judgemental people online – just like in the rest of the world. :silly:
Do you use message boards more for support or information?
In the beginning, I was looking for information and thought the support was a bonus. Gradually I discovered that the info provided on message boards needs to be verified – it’s just a starting point, and sometimes it’s wrong. The support can be nice. Now, I mostly try to watch for newbies and extend the hand that I was looking for back then.
How soon did you search online for Rheumatoid Arthritis information?
When my PCP gave me my lab results and referral to a rheumatologist, I started searching for information about the ANA test, which led to a search for info on RA and SLE.
How does your doctor react if you quote something that you read on the internet?
I try to include the source, such as, “I read on the Arthritis Foundation’s web site that…” or “Mayo Clinic’s online information about RA says…” and then ask a question. My doctor just answers the question, no problem.
WS: Well stated. And it’s true that as you make your way through the maze & are able to help others some, you are helped by them again… Every time I feel completely alone, I read some story & my heart is broken again. Every time I want to give up, I hear someone’s story & remember why I do this… Good technique with your doc.
1. Do you use message boards more for support or information?
I initially went to the message boards for info. Some of them were sponsored by the pharmaceuticals, nixed those. I couldn’t get enough info from the AF website, I looked at others that were filled with cranky people and just kept looking but never joined anything (until yours). I found you while reading the responses to the NY Times series “Faces of RA”.
2. How soon did you search online for Rheumatoid Arthritis information?
Right after my PCP gave me my bloodwork and referral. I already had a feeling that I had it and had done a little bit of looking online, which is why I insisted on the bloodwork.
3. How does your doctor react if you quote something that you read on the internet?
On my second visit to her, I came armed with a set of written questions that I had formed after reading on the internet. I asked her if she minded and warned her that I would be a “problem patient” with lots of questions and opinions formed from half-assed research. I also told her that I was bringing her the questions because I knew that she was the Doctor and that she would have the answers, not the posters on the message boards. She laughed and said that she liked lists of questions and had no problem with me being who I am. Caution: as was pointed out by an earlier poster: this may lead the doctor to think that you know more than you really do. Sometimes it is better to be less confident.
This reminds me of when I lived in France for a short time. I memorized certain French phrases perfectly. People assumed that I spoke the language and so would start conversing with me. I had no clue what they were saying!
I started looking for information on the web immediately…before diagnosis. I had trouble getting diagnosed and took printed web info to my primary dr. to tell him what tests I wanted him to run. He referred me to a rheumy saying they could run whatever tests they deemed necessary as he didn’t want to delay things by running something they didn’t need. (Alrighty then!)
My rheumy just smiles at me as if to say, “Ah. I see. The internet, huh? Well, here we go again.”
Yes, I know what’s on the internet may, or may not, be fact and may contain errors. It’s helped me to maintain my sanity, however!
The support I FEEL from you (Kelly) and others who share their own stories on here has been immeasurable!
I don’t expect to get a doctorate on here. I just need to know I’m not alone and know there are others who understand.
This is my RA “church”, if you will! I may not “have” to come here, but as a person with RA, I do come here for the same reasons I go to church…it is my responsibility to lift others’ spirits when they’re low, if I’m able, and to allow others to receive blessings by lifting my spirits when needed.
God bless each and every one of you, my RA family! Thank you for being here for me! 😀
Amen Tawnya 🙂
I believe that interaction is critical to develop support and understanding. That’s a beauty of newer Web 2.0 (and 3.0) technologies. The internet is no longer a static source of information (good and bad). So in that regard, RA forums are needed and important. But, I think that you raise an important issue about moderation. Unless they have experienced RA, doctors may not have a clear and comprehensive picture about how RA affects patients. On the other hand, there are a lot of wild ideas out there and unmoderated forums can perpetuate misinformation. I like to compare to online courses I teach for graduate students. Based on learning theory, the courses are not independent, self-paced, or unmoderated. There is much interaction via discussion forums and collaborative projects (via wikis). But all of this is moderated and guided by the “expert” (the instructor) otherwise chaos and confusion would ensue. I like to think of the RA Central site as a model of a quality, moderated site.
Andrew
I agree with you Andrew, RA Central has been a very helpful site for me.
1.Do you use message boards more for support or information?
No, I don’t. I find the Arthritis Foundation’s site EXTREMELY clunky to navigate, and found that the questions/information posted were far to basic for me. As far as the AF site, I should maybe explain that I’m a much more informed patient than most; my mother had RA for most of my life, and I have worked my entire professional career in the pharmaceutical industry, writing and submitting drug approval applications to FDA. I know how to read drug information, and furthermore, where to find it.
Other message boards strike me as either a congregation of whiners (oohhhhhhhhhh, I couldn’t do *this* today, woe is me, poor poor pitiful me….) or prayer chains. No offense to those who find the latter helpful, but to me they rank right up there with the suggestions to take fish oil or glucosamine. More power to you if you find them helpful or comforting, but they are not my cup of DMARDS.
This is the first site I’ve found that I come back to on a regular basis. I found it through the NY Times link as someone mentioned up thread, and I have come back everyday. THIS is information I can use, and ‘tho it doesn’t necessarily have a “chat” per se, the comments are usually intelligent and well thought out. I may not agree with every post, but I do think about them.
2.How soon did you search online for Rheumatoid Arthritis information?
Almost immediately. Actually probably as soon as I got home from the initial RD appointment. And I was tremendously disappointed by the dirth of real information out there.
3.How does your doctor react if you quote something that you read on the internet?
Luckily my RD knows what I do professionally, we’ve discussed it when I’ve been in some clinicals with him. He respects that I’m more savvy than the av-er-age bear (thanks Yogi !) and will actually give me leads to track down (i.e. you should Google tocilizumab…). *That’s* one of the reasons I love him !
Hi Roberta. Thanks.
I can certainly agree with this: “Almost immediately. Actually probably as soon as I got home from the initial RD appointment. And I was tremendously disappointed by the dirth of real information out there.”
Me too. But he did not appreciate it at all…
You have an edge with that career. Would love to have had a foundation like that to help me with all that I’m learning… :struggle:
I have found some very helpful sites on the internet for help with RA, I have a lot of support friends at daily strength- you are a member there Kelly, you know how helpful that site can be, and they have doctors who try to help answer a few questions. Not all is lost – there are both the positive and negative!
And I have recieved some very helpful information from another site daily strength . com
Welcome, prissy!
Yes, that’s a very postive site.
Having been diagnosed in 1964, searching for information on the web is a relatively recent development for me. 🙂 It’s been extremely valuable in getting accurate information about medications and side effects. Until then, I had to track down a drug reference book or rely on what the doctors told me, which wasn’t always complete.
I have to say I never sought out support groups or counseling. I guess I was too busy trying to live as normal a life as possible – I didn’t want a regular reminder that I was different. Stubborn, I know. 🙂
I landed by chance on the Creakyjoints.org (back then, a .com) and it was like I’d found my “herd”. I found that by sharing my experiences with other people who are just starting out on this RA journey, it helped me at least as much as it helped them.
The board is relatively unmoderated, as far as I know. Drive-by spam posts by people selling some “miracle” product are relatively rare and, once reported, quickly removed. In the years I’ve been on the board, there have been no flame wars – just honest, caring support.
Good to see you, Carolan! It was a pleasant surprise when I opened up the comments today. The web is really changing the way we get info isn’t it. It will never be the same. My 4 year old uses it… 😉
nothing to say about message boards:) but just wanted to say that i just found your blog and am already encouraged and excited to start following! i’m a momma of 2 kiddos, wife to an amazing hubby and lover of Jesus and am a 35 year old who got jra at age 3. thanks for all of your research and info…LOVE it!
:rainbow: Welcome, Anne. Thanks for the shout out!
I have to agree with Carolyn in that when I was first dx’d, the internet didn’t exist like today so I would say that the first years of my disease I really struggled with trusting my rheumy that she was doing the right thing. I also am a very “in control of me” kind of person and the fact that I didn’t have any way other than going to the library to get current info was very frustrating. My Grandmother got the Arthritis Today magazine but of course I was 28 and TOOOO young to read that…after all it was bound to be for OLD people(of course I had never read it to find out lol!!). I have been so luck to have the rheumy I have now. I’ve bee with him for 8 yrs and unfortunately will have to change because he is relocating to El Paso TX(so if anyone is in that area, email me and I’ll give you his name!!!). When I see new info on medications, I tell him what I saw and he gives me his honest opinion. I have also learned that boards are places for people to discuss THEIR experiences–good or bad–and that their experiences are just that–THEIRS. My experiences may be different and when I post, it is from my 18 years of dealing with my disease, beginning with treatments that felt like they were from the Stone Age to my current treatment which would have seemed so science fiction if I had even considered it back then. As for the trolls that try to push their “instant cures” on me, I either hit the Report button or if it is a person, I thank them for the info and I will discuss it with my dr. I thank you Kelly for your forum here because it fills an important need for those of us who don’t have a support group or system for dealing with these frustrations. Thanks again and Happy New Year everyone!!
Ooops, I’m sorry Carolan, I misspelled your name! I think my brain has shut down for the evening :).
Kelly, you posed some interesting questions. As I am working towards my Ph.D. I have become more skeptical of online forums with message boards. I have found some very misleading information that sometimes can even be dangerous. I think it is incredibly important to cross reference any and all information that you are considering ingesting as fact. Cross reference via websites such as MayoClinic, Medscape and other reputable sources.
I have gone into my doctors office and said that a person that I know had found x to work well and I would like more information on why or why not this would work for me as well. But even when doing that I would research it on a reputable site such as MayoClinic.
I would suggest asking your doctor what websites do they recommend you use for additional information that you may like to know between appointments. For prescription information I have found Rxlist.com to be very helpful as it has both patient and doctor information AND reviews from patients just like us!
I often use sites like rawarrior to listen to others experiences, to have a group of people who understand and support each other and to be in the know as new things become available whether it arthritis friendly scissors or a new drug treatment that is in trial.
The difference between rawarrior’s site compared to so many other sites and especially blogs out there is that rawarrior/Kelly does her research on reputable sites, she does not promote herself as a medical professional, just a professional patient (like all of us) and she cross references, asks doctors and has learned to be proactive. She does not take things read obscurely as fact until she has found it to be proven. How many blogs out there cite references? This is the first one that I have seen! VERY impressive. Kelly goes above and beyond the basics/minimum requirements, she is not filling our minds with nonsense but educating us and encouraging us to think for ourselves and be self advocates.
Thank you so much Kelly for all that you do for us. You truly go above and beyond!
No problem, Becky. Happens all the time. LOL Call me anything, just don’t call me late for margaritas! 😉
I wanted to really think through my answer before I gave it- so I have taken a few days to “percolate”
1.Do you use message boards more for support or information?
There are 2 messageboards on facebook that I participate in on a fairly regular basis. The messageboards on the AF site and a few other “big name” sites- almost turned me off messageboards completely because they do not fit with my own “strategy” for dealing with this hand I have been dealt. I am trying (note: TRYING) to tackle my illness with positivity and it seemed that those boards were very…doom and gloom for lack of a better term. I would log in and leave feeling worse than when I started reading. I too was very disheartened by the number of “miracle cure” spammers on some sites and quickly left them.
2.How soon did you search online for Rheumatoid Arthritis information?
Immediately. I am a bit of a computer geek. I went to an appointment because my hands just were not functioning in the morning and as soon as my NP said “let’s test you for Rheumatoid Arthritis” and explained that it was not like traditional arthritis- I came home and hit the web.
3.How does your doctor react if you quote something that you read on the internet?
I get my medical info from Mayoclinic.com and if I have questions I will ask and tell them that is where it came from. When I was first diagnosed- my NP steered me that way because WebMD is less user-friendly and can be misinterpreted- leading to more questions. If I find something that piques my interest elsewhere, I will research it long and hard before I ever bring it up- and then I usually mention that I heard it from another RA’er but I have found X/Y and Z and would they help clarify for me.
In closing- messageboards can definitely fill a need. If you find the right mix of people you can give and receive a lot of support from people who really know what it is like to live with this. My advice to someone who is newly diagnosed is to check out a lot of different boards (there are many) and see which fit your approach best.
Hi
I don’t know if I can mention the name of the society on here, so I won’t just in case. I only use this one website for help, advice and support. It is run by people who have the same rare condition as me and it also has a forum so I can ask other people for their advice and support. I don’t know if you would call them a board though. They don’t make any claims they are just trying to spread awareness and offer support to one another. My Rheumatologist during a visit looked up a question I asked him and used the website for the answer, so if it’s good enough for him. They state they are for informational purposes only and to always talk to your Dr/Rheumatologist whereas there are so many other sites disguised as something else trying to convert or sell you something. Like this website warns you if read anything on the internet always discuss things through with the Drs before you take any cause of action.
I have been on other sites and had issues on forums where people, members are always knocking traditional medication and make you feel bad for using it. They come on and try and convert and recruit you for their forms of treatment. When you report them they just go mad at the moderators for freedom of speech. You think some of them are on commission with the ‘medications’ they try to persuade you to take. They claim they have found a cure but none of them are cured and the problems they experience with that form of self medication is just explained as something wrong with them and to just add something else to over come the problem rather than stop taking their meds.
I know people read sites and believe in anything because of diseases like RA, PR which have an unknown cause and unknown cure encourage people to come up with their own theories and treatments and until there is a proper medical answer it will go on.
Thanks
I’m thrilled to see this topic! I belong to a forum that I love and I’m always wondering what people want from us. If there were a way I could get the opinions of more people I would welcome it.
My biggest turn offs are the forums that allow fighting to become a free for all, members who shove their alternative treatments down my throat, and misinformation that goes unchallenged.
Thanks again!
Kelly,
My heart goes out to you. I know how frustrating RA can be, my wife, an RN by the way, had RA. She suffered many years with it and never did find much help, she tried all the medical profession could give to no avail. I do hope they will come up with some dicovery of treatments that will at least make it more tolerable.
Frank
In Terre Haute, IN
Thank you, Frank.
Love your blog so I’m going to subscribe
Could anyone please give me some advice?? I was diagnosed with “inflammatory polyarthritis” in October 2010 by one Rheumy and “mild RA” by a second. The only reason one is calling it inflammatory” is b/c my blood work has all been negative but my symptoms and clinical presentation are indicative of RA. Either way, he is treating me with DMARDS. I was on Plaquenil from Nov-March with no relief of symptoms. He then switched me to Azulfidine and Relafen 3 weeks ago, with no relief as of yet. He is holding off on the methotrexate in part b/c my blood work is negative but also to see if i find any relief with the “less damaging” meds first. How long will it take for me to feel relief with the Azulfidine?? As long as with Plaquenil (3-5 months)?? Or should i start to feel better rather quickly?? I am in so much pain and the swelling in my fingers is so bad, especially in the morning and when i don’t use them for extended periods of time. My elbows and wrists are killing me but no swelling in those joints. Any insights or information would be most appreciated. THANK YOU!
Michele, doctors do sometimes change diagnosis or more often disagree w/ another doc’s conclusion. RA diagnosis is subjective, but there is a new checklist – read here – that is supposed to make it more objective. Maybe that will help you figure out what happened with the different docs on different days.
RA can present with swelling and no pain or pain with no swelling. Pain, stiffness, and weakness is evidence that a joint is affected even if it does not swell at the time. Swelling can come on a different day… have you read through the swelling post – click here?
I’m not sure how long it could take for the new meds to work, but I’d tell him that you are not any better. He could treat your symptoms in the meantime. Methotrexate is the most used RA med. and I had not heard from a rheum doctor that it’s considered “more damaging” than the others you mention – that must be a matter of opinion.
I was just diagnosed with RA. The medications for RA are expensive and seem to maybe have some horrible side affects. I came across this drug DNAJP1 and would like to share. I’m not sure why this is not available for us to use yet. Maybe it would put all the other drugs out of business. Maybe this is not about improving peoples lives but about making money with all these crazy expensive drugs one which I’m going to have to start on soon. 🙁
http://tucsoncitizen.com/morgue/2008/02/20/77417-rheumatoid-arthritis-aid-may-come-from-ua/
Hi Kelly,
So far am impressed with your site – mainly that it is user oriented, and not medical/pharmaceutical oriented – where info is thrust at you, as if whatever issue any one has, there is a standard medication you must take.Basically they are not real forums, because they are owned or sponsored by medical and pharmaceutical companies.
I have useful info to share, as much as I look forward to engaging with people and learning and developing my knowledge base.Tom
thanks Kelly, for opportunity to join this forum, will do so now. I am looking forward to reading and engaging with other interested people.
Tom.
Hello,
I am a 29 Year old Female and am showing most of the classic symptoms of RA. Since it is quite difficult to diagnose, I am starting to question if I have RA, or another disease. Please read my story.
About 2 months ago I woke up one morning and my hands, and feet were bright red, Warm to the touch, and swollen like crazy. There was no pain, just stiffness. I assumed that due to the cold weather my eczema was about to flare up.
Within days, I started to notice that i was developing small, hard, peas sized, flesh colored bumps underneath the joint of a toe on one foot, then the next day my other foot would mimic the bump until both of my feet had identical bumps on each joint. It was pretty concerning, and had no idea what it could be.
Within a few days, while trying to sleep i felt pins and needles ( my hands and feet felt like they were falling asleep). Not even a day after that the pain set it..first they would be achy , then very sharp pains ( a stabbing sensation). The symptoms continued to get worse for about a week. The pain began to spread to my ankles, wrist, arms, legs, and knees. I hurt so bad i was almost in tears. I went to my PCP, and he believed it to be a possible form of Arthritis. He put me on Prednisone (50 mgs.. 2 pills per day..for 6 days) i had a blood test done for crp and esr. The prednisone instantly took the pain away but never cleared up my inflammation in the slightest. The test results showed both test to come back normal. The dr. said that I was fine and didn’t have arthritis.. within days of coming off of the prednisone my symptoms came back and the pain was twice as bad. I started getting really bad headaches, and my vision started to change. while driving during the day I started seeing tons of floaters in my vision, and while driving at night I was seeing tons of purple flashes of light. Everything is getting worse. My Doctor has now called me in a prescription of Naproxen. I am about to start taking them to see if this clears up the inflammation and pain. I have done a lot of reading on RA since this whole thing started 2 months ago…It is making me feel crazy..the DR said i don’t have it but I know something is not right with my body, and I have all of the classic symptoms of the disease. I do not know what to do. What does it sound like? I’m desperate for advice…
Does anyone know the significance of a positive RF factor of 320 IU/ML? Is that low, medium, high etc? I don’t have a clue. Thanks!
Hi Susan, that is high, which is a definite positive. Rf is not always the best way to be assured of disease activity level since it can vary and not always with symptoms. There is some more about that here: https://www.rawarrior.com/rheumatoid-factor-test-should-we-rely-on-rheumatoid-factor-levels/
Hello.
Im glancing through some of these posts, and seeing as I am having a super bad day, thought I would share some of my experience with JRA.
I was diagnosed officially at 13, which for juvenile RA is quite odd and considered to be old. Since that moment, nothing has been what the dr’s considered to be “normal” as far as RA went. I have some sort of factor in my blood, as well as the physical arthritis, which only 2% of people get. The RA started slow, and within 3 weeks of my first tiny little ache in my foot, I was almost completely immobile as my knees swelled to the size of large softballs.. And so started the next decade of my life.. At the age of 15 I had to get emergency total hip replacements, as the RA quickly ate through the fluid cushioning the joints, and thus I had been walking about, bone on bone, for a very long time. By the time this happened I had been on numerous medications, none of which worked for longer than a month. In the two short years from being diagnosed to getting my hips replaced, my whole body had gone from normal, to having just about every single joint in my body being active with RA. It took a long time to hear, but finally one day my Rheumy told me that my case was one of the worst she’d ever seen, and at that point was just trying to control it. Which she admitted, wasnt going too well..
Im almost 23 now. Ive struggled with depression since i was about 10 years old (before i even got RA) but after getting this illness, it’s gotten much worse. With age I learned to hide it mostly, and I do have my good days and bad days. Lately though, the last year or so, Ive been struggling more than usual with my situation. Ive been told Im in remission, and so i am trying to lower my dose of prednisone. It’s pretty rough, but Im doing it. It’s hard to explain to people why you cant do certain things when you know there’s no way in hell they could even begin to understand. I try to politely smile and nod to people when they talk to me as if they know more about my disease than I do. It’s very frustrating feeling alone, and feeling like you have no one you can talk to. I love my family and friends, and theyre great for being patient with me and trying to understand. But after 10 years I find it just leaves me more depressed and frustrated knowing that for all the venting I do, no one even gets what I mean.
I find it very hard when so many people tell me “You’re so strong to be able to go through this and still laugh and smile. You’re the strongest person I know.” I love this, i really do. But at the same time, it eats away at me when Im having days such as today where I cant seem to stop crying over the pain, and over the emotional thoughts that won’t seem to leave. I keep thinking “If Im so strong then why am I crying so much? Why do I complain so much? Im not strong” It makes me feel like Im lying to my friends and family to some extent.
Everyday is something different for me, for most people with RA. It’s so draining to live like this, yet somehow we manage to keep going.
The past month Ive decided to start writing a book. It’s helping me in numerous ways. It keeps my mind busy, helps me vent my thoughts and my experience. But most of all, Im hoping, so hard, that if / when i finish that book, it will eventually raise awareness for RA of all forms. Too many people I have encountered that dont know or dont believe just how much of an impact RA has on someone’s life, and the people around them. I know personally, it changed my life forever. I am not the same person i was 10 years ago. I never will be. I will never be able to run full tilt like I used to. My knowledge of the medical world is better than my knowledge of my own country’s geography.
I hope to someday do something positive towards RA. I dearly want to raise awareness, as there doenst seem to be much of that outside of the patients and Drs.
I do believe that is enough typing for me right now. My hands are getting quite achy! I hope the best for everyone and really hope you have many good days ahead of you all!
Many years ago, I joined an arthritis chat and message board to seek support for my then mystery illness. I explained my symptoms there (doctors first thought I was suffering from Rheumatoid Arthritis) and was told by an extremely smart lady to look at the symptoms of Adult Onset Still’s Disease. I took that information to my M.D. (we didn’t have Rheumys where I lived at that time) and he agreed that I most certainly had Still’s. Today, I help operate a small chat and and message board for arthritis sufferers. We don’t discriminate – be it Rheumatoid (the vast number of our members, or Osteoarthritis, or any of the other 200 diseases that fall under that category. While our web page is far from complete, and may never be, our message boards and chat are up and running. We do have a disclaimer that we don’t offer medical advice, but we function as a support board. We don’t tolerate flamers (so many unmoderated boards do). We’re a small board, looking to grow. Many of us have had our diseases over the course of many years, so now, we don’t talk about it much. But we are always open to support members who are seeking advice. Yes, I think chat and message boards are extremely important if moderated.
I was thinking and came to the realization that doctors do not cure anything, unless of course its a bacteria and they inject you with antibiotics and all other conditions are incurable. Got to thinking and made a list of a few. Cancer,arthritis,lupus,osteoporosis,alzheimers, parkinsons,ms,chrons,ibs,gout,diabetes,migraines,heart conditions,even hemmoroids, and could think of not one condition doctors can cure. I wonder why that is. Are they healers or just treaters? For the big bucks we pay them they should heal something, but I can think of nothing. Am I missing something here or are we all just being taken for a big pharma ride.
I WONDER JUST HOW MANY KNOW THAT THE SO CALLED MEDICINE DOCTORS AND DRUG COMPANIES USE TO LESSEN THE PAIN ACTUALLY CAUSES THE RA TO GET WORSE AND THE ONLY WAY TO CURE THE CONDITION IS TO ADDRESS THE LEAKY GUT AND DIGESTIVE ISSUE THAT CREATED THE CONDITION IN THE FIRST PLACE. THAT IS HOW YOUR DOCTORS HELP THEMSELVES TO MORE OF YOUR MONEY AND DO A DISSERVICE TO YOU.
There are two causes of all chronic degenerative diseases and only two therefore the means to correct those diseases are in the causes even in the so called incurables like arthritis. Those causes are deficiency and toxicity. In RA that toxicity is in the form of a leaky gut leaking toxins into the body from the colon. Correct the toxic colon and you can correct the RA except the medication adds to that toxicity.