10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me
Facts about Rheumatoid Arthritis I learned the hard way
There are some important facts about Rheumatoid Arthritis that you figure out pretty quickly and other ones, you get eventually. If these are some RA facts of life, then why doesn’t anyone sit you down and give you “the little talk”?
Why doesn’t the Rheumatoid Arthritis specialist tell you the essential facts about Rheumatoid Arthritis? I don’t know. Here are 10 facts I had to figure out on my own. Do you have some to add?
10 essential facts about Rheumatoid Arthritis
- Protect your RA joints as much as possible from traditional Rheumatoid Arthritis deformities.
- Don’t just accept a life of pain. You might need a pain management specialist.
- Rheumatoid Arthritis generally progresses or advances over time. You may get worse more than better.
- Vitamins C, D, and B-12, Omega-3, iron, and calcium supplements… would be a good idea.
- Usage Principle: using RA flaring joints can make them worse. Using non-flaring joints may cause flare.
- Lab results can vary over time & might be affected by medications.
- You can have a handicapped parking tag if you’ll ask for it.
- A really good bed and some great pillows are worth their weight in gold. Soft bamboo pillows or fuzzy plush animals make great arm or neck rests. Quality rest is your best friend.
- Do everything you can to protect yourself from cardiovascular disease. It can make people with RA die earlier.
- Rheumatoid Arthritis often affects the cricoarytenoid joints in the voice box (larynx).
Don’t miss! 20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me
Recommended reading:
- What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
- 3 Myths about RA that are Rheumatoid Arthritis Facts
- Would Relying on Patient Generated Data Make a Difference?
- Is the Course of Disease for Rheumatoid Arthritis Becoming Milder?
Great post! As a former RA’er who morphed into Lupus, I completely agree especially with #5. I had to drop out of PT earlier this year b/c it was just exacerbating my joint pain. It’s simple, if I used my swollen joints they hurt more, if I don’t the pain abates. So much for those who tell you to exercise through it! I use scooters and wheelchairs whenever I need to be in a mall, grocery store, etc.
And click on #6. Totally agree with finding a doctor who treats your symptoms and does not live and die by the blood work. Most of your common labs are awful at finding RA and other AI diseases.
Thanks, Emily. The excercise thing works if the joint is not in flare. I’ve done a lot of reading & most experts do admit that. They just assume we all have these periods of time between flares. Some do; some don’t.
Can I ask a question, speaking of labs, how do they confirm no RA for you? Thank you for helping me learn.
Re: No RA for me: I’m not sure what you mean by that.
Sorry. I meant, did they use a test to decide no RA? How did they know? I was just curious.
Still confused. I had RA and then I got Lupus. It took me 6 months to get my diagnosis back in 2003. I had a crappy dr. then got referred to a wonderful doctor out of Columbia Presybyterian who took one look at me and said “You have Rheumatoid Arthritis”. Don’t remember so much about the blood work, I know I had a high Sed Rate, can’t remember if I was positive for the RA factor.
Hope this is what you are looking for. The labs were done right in the hospital and I had results within an hour or so. Sadly, this wonderful doctor passed away.
My own experience gave me this tip: Better to have the walker and not need it than need it and not have it.
ugh… sounds like that belongs under the category: Brutal Truth.
My doctor never told me that this new government in UK would force me back to work even when i have RA and other illness and have trouble doing everything, that is if i can actually get out of bed. I am getting severely depressed my benefit has been reduced and i do not know where to turn.
That is something my RA Dr did not tell me!
Oh Lynn. That’s awful. 🙁
Lynn, I feel for you – I had the exact same struggle and had to fight to appeal it. I went to the Rights Office in Edinburgh who were phenomenal at helping me get the DLA in the first place and who went into bat for me when they tried to take it away. I wonder if there isn’t any similar organisation where you are?
Thanks so much for this post. I’ve been reading for a couple months, but this is my first comment. My RA developed after the birth of my 3rd child 10 months ago and, while I suspected it from the start, I was “officially” diagnosed a couple months ago. I’ve been lamenting this exact issue to my husband. The OB gives you a big packet when you get pregnant full of local resources and dos and don’ts and tips and suggestions. Why on Earth doesn’t the rheumy give you something like that with such a life-altering diagnosis?
Thank you for speaking up Megan. It’s great to hear from you. I have some ideas about how to change this – we sure need to! How do you even know what to ask or look up?? 😛
Great post Kelly… I definitely agree with point 4, and for those of us allergic to fish, add in flaxseed oil for Omegas. Point 7 – I have a disabled parking permit and it was the best thing I ever did. I don’t always use the disabled spaces, but on days when I’m at my worst, this is one thing I really appreciate.
Your last point about the larynx … I’ve had recurrent bouts of laryngitis since being diagnosed and my voice has become much more like Rod Stewart’s after a binge on whiskey since developing RA. I used to have a lovely soprano voice, but can no longer sing in key or pitch consistently. I still try a little jazz now and then, but mostly myself and in the car where no one else can ‘…hear the cat’s squealing…’
You know, this disease takes so much but I have to look at it with a sense of humour. God help me if I ever lose that…
Good points, Rebceca. Has your doc said anything about the larynx? Did you ask? It seems they really don’t know much on it?
Hi Kelly,
The only thing they’ve said is that once the larynx has scar tissue from numerous bouts of laryngitis, it’s usually a weak spot, but no, no one has taken it further. I have the ping-pong game of an rheumatologist saying it’s more likely to be the result of Hashimotos Disease (which I have), while the endocrinologist says it’s something else entirely.
Either way, I now have a sultry phone voice apparently 😉
Well, get what you can out of it! 😉 I’ve had that thryoid disease over 30 years and the larynx symptoms are not my thyroid – so I guess I agree w/ your endo…
I didn’t even know to mention my vocal changes to my rheumy until I read about it here. Soooo, last week (Feb 2011) I mentioned that my voice range had changed and that I no longer can carry a tune (I HAD perfect pitch, and WAS a very wide-range alto, able to sing any part from 2nd Tenor up to 2nd Soprano, but most comfortable in the alto-contralto range). He said, “Oh, yes! you probably have the crico-arynoid joint inflammation.” Just DAMN! RA – the gift that just keeps on giving! I always felt elevated, and that I was giving a gift back to God when I chanted in the choir. I can no longer direct (neither can my husband who was the primary director), and can no longer chant the services. What else is this disease going to take away??
Sorry, I don’t usually complain like this, but to no longer be able to sing – at all – not even to my grandbabies – that just isn’t something I can be accepting of.
One more point to add to your list… become a good self-manager, because as much as doctors may try to help, at the end of the day, they can’t live your life (though sometimes I wish that were possible for just a day so they can truly understand what we struggle with each day).
Hi, I just found your site recently. I think it’s GREAT! I totally agree with you about how we should take care of ouselves when we are flareing. No one knows our bodies better than we do. I learned a long time ago that if I don’t take care of myself NO ONE else will! I was diagnosed with RA 16 years ago and Fibro about a year & half ago. For me, takeing care of myself is easier said than done, though. I am a single mom of a 3/12 year old. Trying to balance out getting done with what I feel “able” to do has been challenging, to say the least.
Thanks for such a wonderful blog and for all you have put into it!
Happy Thursday
Thank you Denise! 😀 Good advice.
I wish someone had prepared me more for the truth that normal was over. That life from now on would mean harsh medications, lots of lab work, other complications such as osteoporosis, and hard decisions about what treatments are best and what the side effects will be. This sounds so negataive but I guess I am saying I would like honesty. Even though I feel lots better with treatment, there are still realities I was never informed about. Your site does a good job, Kelly, at being positive but real as well. I haven’t found that anywhere else.
Kay, Will you be surprised when you read Michael’s comment after yours?! – I just approved both of them so you could not have seen it first. Very similar points though! Normal is gone for most of us & we had to figure that out on our own. Yes, it’s not about despairing – just coping w/ the reality we face every day.
Thank goodness for your blog and the RA’ers here who comment. If I hadn’t read this and other posts, all I would have to go by is what my RA doc, and others who aren’t patients say – after almost 4 years of trying meds (and me being very open-minded and hopeful, maybe even too much) with no success (sure SOME improvement but not remission), doc still responds to my questions/concerns as if I were going to achieve remission. She says she wouldn’t be doing her job if she didn’t shoot for remission, but at what point do you accept that RA IS a progressive illness, and may GET WORSE RATHER THAN BETTER! Don’t get me wrong, hope is good, but to ignore evidence and just blindly expect remission isn’t reality!
Michael, I know you couldn’t have seen Kay’s comment because it came in about the same time as yours – same theme though. My doc did tell me I was expected to get better. I asked a lot of questions & the doc was eventually admitting to be at a loss that I was not improving. That was when I earnestly began this journey to find answers, a doc who seemed to have a clue, and a treatment that works… Remission seems like a fairy story, but I actively keep hoping. Even if it’s just so no one can say I gave up. If hope helps, I’ll get there…
I suspect that Dr.s don’t like it when they can’t get us into remission either. It is a little like failure. With all the new meds, I think it probably seems to them like something, some combo of meds, ought to work and they just have to figure it out!
I suspect that we haven’t invented the miracle cure yet!
“As good as it gets” takes on a new meaning, remission is so rare for RA. My rheumatologist never told me that until I asked.
I think RA people some how take peoples problems into there joints, let me explain before you shake your head, i have been on every RA med and for weeks i can say wow i feel ok, never great, but ok, i can live like this, not great but better than it could be, until something happens, that emotionally effects you, one week after a emotional experiance RA hits hard,RA just sits in the background and says ok ,we have been sitting and waiting and now we have a chance to hit hard, i thought Methotrexate was working great, just sits there, ready for the body to say NOW IS THE TIME, SOMETIMES I FEEL MY BODY HATES ME, CRAZY BUT I FEEL THAT WAY, JUST SITS AND WAITS FOR AN OPENING, I HAD 3 REALLY GOOD WEEKS, THOUGHT THANK YOU GOD, WIFE WAS STRESSED AS SHE LOST HER JOB AND I NOW HAVE 14 JOINTS THAT HURT AFTER I JUST TOLD MY RHEUMOTOLOGIST HOW GREAT I FEEL 2 WEEKS AGO,JUST AIRING OUT I GUESS, THANKS FOR LISTENING BUT THIS IS NOT JUST A FEMALE DISEASE, IN WAYS IT’S HARDER FOR MEN AS WE ARE THE TOUGH ONE’S ,
Yes, Kevin. A good point – it would be tough to be a man & hurt like this…
One thing I might add is to drastically amend your expectations for each day’s accomplishments…and unfortunately, possibly even your life’s accomplishment. I was always a busy person, a go-getter, up at the crack of dawn and worked hard all day. Now I get so frustrated when–on a GOOD day–I can maybe get the dishes done and a load of laundry in! I was a self-supporting artist…and now can’t hold a brush or pencil. You can become bitter–or you can become creative. Find other things to do that are within your range of abilities to give your life meaning and yourself some satisfaction. And then try not to compare that with what you USED to do!
So true! It has been some comfort to me that although I can’t be so physically productive as I used to be, my friends and family like that I am now slow enough to catch! I can often be found in my favorite recliner and have learned to be a good listener. 🙂
Very good point about expectations. I did put that on the Travel tips blog, but it would be good if it were told to pts so they would know it’s “normal.”
Great post Kelly!
I have had trouble recently with my voice/larynx, it will get very raspy. I have Hashimoto’s too, so I think my doctor has attributed it to that. Now I wonder. Thanks for including that info.
Hi Kristen,
Keep an eye on that.
I’m not a doc, but I’ve been a Hash. patient 30 yrs. For me anyway, I’m certain it’s not the thyroid that makes my larynx inflammed – I know it’s the RA. Autopsies show over 85% of RA patients have RA in there so it makes sense. I have no good explanation for why rheum docs don’t seem to know much about the CA. It’s just like them thinking that RA has to begin in the hands & some other things like that… 😕
I have an #11 to add to this list from some bitter experience this week–other things can be wrong with you that have nothing to do with the RA and you still have to take care of the RA when you’re dealing with whatever else..
Went in for x-rays and MRI of my amazing disintegrating hips and got called back for an ultrasound. “Ultrasound for my hip, hmmm that’s funny,” I thought to myself, “they usually only do that for injections.”
Imagine my surprise when I discovered they had a whole other kind of ultrasound in mind. And low and behold, there’s a tumor on my ovary, probably benign, but they have to do surgery to know for sure.
My rheumy is very pleased they caught it; wish I could be as pleased, but mostly I’m just worried and upset about having and recovering from surgery–regardless of whether it’s benign or turns out malignant, I just know that with the RA it’s going to be harder and that chances are this delicate “control” I’ve had over it is going to completely breakdown. That’s my biggest worry, believe it or not, not whether I have cancer.
Any advice from fellow warriors on keeping the RA in check after surgery? Did you have to go off MTX? Did it take longer to recover? To top things off my rheumy, who I like a lot, left the practice this week, so I haven’t been able to get any information about these issues since I found out.
I guess on the upside, if they have to take out my ovaries I might be a little closer to getting a new hip since I’ve been told I can’t have one until after menopause.. :giggle:
Samantha, I’m sorry you have to go through this too. I hear differing stories about how much or how long doctors recommend going off mtx. You’ll be seeing a new doc in the practice soon then? I hope the surgery & all this goes well for you!
Hi.
I got RA 6 months back. It is curable. I got treated by homeopathy doctor. She used to give me medicines for 1-2 weeks at a time and now my RA has gone. Maybe because it was at an early stage. Anyone interested can contact me. Anyone who has RA must try the homeopathy alternative
In regards to post 16, sorry but RA is not curable, it can go into remission, however it never goes away, it’s always sitting there quietly in the background just waiting for the opportunity to wake up and kick your rear into oblivion.
In regards to #7. I did ask my first RA doc for a Handicapped plackard. He told me, since the design was a wheelchair and I was not in a wheelchir he would not agree to my having one. My thoughts ran amuck. I had made my assessment of this doc, but continued to see him for a short time. In the meantime I needed to see my family doc and told him of my difficulties walking with RA feet and ankles. I politely asked if I could get a H plackard and he said I most assuredly could have one and it would be a permanent one. He was the doc who originally gave me the dx of RA and had my sed rate checked, which was off the charts. Yes there are times I don’t use the H parking, but for the not so good times I find it totally necessary.
I too fit into the survivor mode. I have been challenged my whole life in one way or the other. I have lost 2 close family members and 2 best friends with the doc/patient conection, which didn’t connect. My own dau could have died if I hadn’t questioned the wrong meds she was prescribed at 6 yrs old. There have been many others along the way, and many deaths that could have been prvented. I have to be the one concerned about me, and continue to scrutenize all medical professions, as well as the pill and medication field.
Kelly, my heart cries for the many years of challenges you have had to face starting at such a young age, and yet it leaps at how you have managed to remain sympathetic, caring and concerned for the life’s of others meeeting these and other challenges. To perservere and share with others the hours of research, reaching out to help and being able to reply is something many of us could not even begin to comprehend. I also thank your children for their understanding, care and devoted love. I thank God for His leading and helping to find someone inspirational and a guiding light to others in need. Robyn R
Robyn, I received a pretty negative comment at the same time as I read yours. It’s a rough day all around & I’m thankful that you reached out.
About the RA doc & the H tag: I want to figure this out. Patients tell me things like that. They say, “Doc says I shouldn’t be in pain.” or “Doc says he doesn’ t know why I’m complaining of fatigue.” or “Doc says the swelling is gone, so I’m in remission.” or “Doc says I don’t have RA b/c of neg Rf…” I don’t know why some RA docs are so mis-informed about what RA is really like. I just know I believe those patients because I’ve been there. Like you, I have a long family history of docs not treating – some family deaths & near misses. Right now, I’m reading Dave deBronkart (e-patient Dave’s book) called Laugh, Sing, and EAt Like a Pig. I was unaware of the whole e-patient movement when I started working on this, but there are a lot of poeple including good docs, working to change this system.
RA is curable, I think. I had stiff joints in my fingers in the morning when I got up about 6 months back. This would go away after 15 minutes or so. I could not curl my fingers in the mornings. I read in the Net that it is RA. I took homeopathic treatment for about 6 months. My homeopathic doctor told me to have faith and just take the medicines which she gave 1-2 weeks at a time. Now, I no longer have RA. There is a cure for RA in homeopathy. I want to tell everyone with RA to try the homeopathic alternative. My RA is really gone. I don’t know if it is because my RA was in the initial stages that it got cured so easily. But, it was well worth the try for me. If you have RA, you must contact a homeopathic doctor and see whether it works for you. Good luck.
I do not know why this same comment is posted on other websites. That is part of the definition of spam.
No, RA is not curable. There are rare cases in which the disease remits, even permantly. I believe the researchers think it is 5% of patients or fewer. There are no homeopathic treatments that cause RA remission. Delaying treatment to experiment with homeopathy could lead to greater permanent damage. In the US you have that option; it is a free country.
Hi everyone,
I really identify with these comments, life can be so tough living with RA, my biggest problem is who do you believe??? My consultant tells me to continue to exercise no matter how much pain my joints are in. He also tells me that there is no point in taking iron supplements even though I am aneomic(sp?) there is no point in taking any vitamin supplements even though my skin and nails are terrible. If I had a choice I would go elsewhere and look for a new Rheumatology team but the way it works here, I have to attend the one I am sent to or pay BIG money to go private.
I Love this site. Thank you Kellie for everything, you’re a star. xxx
Wow, Vicki. Thank you. :star:
It’s true that you can hear different things about RA from different docs. There are links on this exercise post which clearly explain that exercising flaring/painful joints is not recommended. I wonder if you went to those sites & printed out the info if your doc would read it. The pain of RA is not the same as the “good pain” of working healthy muscles & joints.
I hear you. My RA doc has also said, “It won’t help” to me when talking about some vitamins/supplements. But other my docs & other studies I read say iron may help the anemia, depending on what’s exactly going on – there are various types of anemia… It is always good to TRY. I’m sorry you are “stuck” with your doctor right now – Is it not possible to “request a 2nd opinion”? I used to have an HMO here, which is a type of insurance where you don’t have many choices – it was awful. Now, I can go to as many different awful docs as I choose! JOKING! Couldn’t resist… 😉 I have a good RA doc now.
OMG my voice box????? I’m a singer!!! I didn’t know…:(
We are not all the same, Jacque. Let’s hope not. :heart:
Kelly-
Re usage principle- right on! I have chronic migrianes to go with RA. They’re like Evil Twins (muwahahaha), who join forces to ensure I am in constant pain of one sort or another. My headache specialist, a neurologist who specializes in migraine disease, stresses the importance of exercise as a preventive for migraies. “I have trouble with most exercises,” I say, “because of my joints.” “No worries!” he exclaims. “Swim! Swim! Be a fish.” So I try. One week later, I am back on a Prednisone taper for a flare in my shoulders and wrists. Really, dude? I told you exercise is a problem. Yoga? Only if I do the kind where I don’t put any body weight on my knees or wrists. You know, the sitting still and breathing kind. Walking? Slowly on flat surfaces for less than 15 minutes. But tell a doctor that and they think you just DON’T WANT TO GET BETTER. Ugh. Doctors, what do they know about disease? It’s not like they’re sick.
Amy
Amy, reading your comment aloud to a friend and laughing. I guess laughing is our best “revenge.”
Kelly, I want to thank you for your realistic and informative emails and blog. You share the research I wish I would do for myself. You are the best.
Most Important thing they not only forget to tell us but frequently forget themselves. This disease is SYSTEMIC!!!! It can affect every system in your body. If it exists inside your body RA will find a way to harm it.
hi One of my past rheumatologist was a premier university connected world know rheum. He told me not too look for problems where there are not (in front of my husband and they actually nodded to each other!!) when I told him about my dry eyes and throat. I also have developed the dry hoarse voice. I never even got checked after years c/o neck and headaches with notable swelling along the base of my head. I could go on about other problems which were taken care of by other doctors all related to RA but my world reknown doc did not even check it out. I was never told about the systemic problems. Found that by myself.
I forgot to add. finally when I changed rheums she checked out all my complaints about neck and back pain and found I had a major amount of RA in my neck and spine.
That’s why we have to find a doc who doesn’t discount what we say our symptoms are. Good for you for moving on until you did Cindy!
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I am 26 years old and recently diagnosed with RA. I am only taking steroids for pain management because my husband and I are trying to start a family. We have been told that due to some other factors we can only conceive through IVF. We are not sure what steps to take next. Finding your site made me feel like I was not alone. I even shared it with family members that could use some more information on RA. Thank you so much for maintaining this website so we can all have something to hold on to. It give me hope knowing that there are so many other people that have fought through this disease and still managed to live their life. I wish you the best with your situation.
Thank you, Sadie. I wish you the best with IVF, too. I hope your friends & family will understand more of what you are going through as they read. We do have one post on pregnancy with some resources listed & some good advice in the comments page if you haven’t seen it yet – click here.
I have asked my RA doctor for a handcapped tag. I even sent in a completed form for him to sign. His assistant called me and told me he said to wait until my next appointment (6 weeks away) and we would discuss it. What does it take for this guy to realize that I can’t walk?! My RA started in my feet and toes. It’s excrutiating at times to the point that I can’t walk around my house, much less across an entire parking lot to the grocery store. And on another topic, how often should my RA levels be checked? I was diagnosed about 5 months ago and have not been retested since. My RA doc said he only tests my levels once or twice a year. Is that normal?
Kelly-
This is a great post. Thanks so much, especially for the info about how to spare your joints further damage. You are an angel 🙂
Hi Kelly,
I too have Hashimoto’s and have nodules on my vocal chords. I was having issues with my voice and my Rheumy had me see an ENT who discovered the nodules. Neither of them attributed it to my RA. In fact, the ENT said it was because I am a manicurist and talk all day long. Ha Ha, ok. I never knew it was due to the RA until today. I have also asked my doctor about getting a handicapped plaquered and was told I didn’t need one. These doctors sure seem to think they know what they are talking about and what is best for us. Boy, I wish they could have just one week to feel like we do. I’m sure they would change their minds rather quickly.
I do have to say though, I feel pretty lucky after reading many of the posts on here. I have had RA for 10 years and am doing quite well. I do take a buttload of meds as well as Orencia by IV once a month, but I am still able to work everyday and mostly have minimal pain. Of course that can change at any given time, and has, but I feel very blessed to be able to continue to work and run my business and feel fairly well most days.
Thanks so much for all you do Kelly. It does make such a difference!!!