20 Rheumatoid Arthritis Patient Facts I learned from RA Patients
Why call them Rheumatoid Arthritis patient facts?
There were many things that didn’t add up as I started to read so-called Rheumatoid Arthritis facts. What I read was not what I experienced. The more I heard from other RA patients, the longer was the list of things I wondered about. I can’t believe I’m finally saying this aloud. These are Rheumatoid Arthritis patient facts I learned from listening to people who live with RA.
By the way, yes, I realize that I’m generalizing. I’m sorry if that bothers anyone, but I’m not making any claims about percentages. These are just things I’ve noticed. The tens of thousands of comments on this blog support these conclusions.
Rheumatoid Arthritis patient facts according to RA patients
- Patients often disagree with rheumatologists about a status of RA remission or “control.”
- There are a disproportionate number of nurses and hairdressers with RA.
- There is not really a typical Rheumatoid Arthritis.
- Side effects seem to come and go, but patients do better when they are warned, which is not frequently.
- External obvious swelling does not consistently correlate with pain.
- In some ways, not much has changed in 44 years.
- I think people with RA are usually optimistic, kind, and helpful.
- So many RA patients are diagnosed with FMS for well-known RA symptoms.
- Almost everyone I meet with RA had symptoms for years before diagnosis.
- RA patients often don’t realize that their comorbidities are due to RA.
- Most RA patients are private about how much pain they live with daily.
- Most RA patients have a higher than average pain threshold.
- Using joints often causes flare. Using flaring joints makes them worse.
- There are things that some RA patients need that they don’t get – like work accommodations, medical treatments, or better mattresses or shoes.
- Most RA patients I meet hate people thinking that they just have “arthritis.”
- Most of us have already tried eating healthy, exercise, and juicing & it didn’t help our RA.
- Many of us have had a doctor doubt our veracity.
- There are often discrepancies between the facts of our disease history & what is in medical charts of RA patients.
- Most of us have a family member who doesn’t “get it” or won’t hear the truth about RA.
- Hoarseness due to inflammation in larynx joints is not rare.
I was really tired when I made this list. Can you think of any Rheumatoid Arthritis patient facts I missed?
Recommended reading:
- Bewilderment of Early Aggressive Treatment of Rheumatoid Arthritis
- Fibromyalgia Diagnosis: Do They Know for Sure?
- What about Classic Rheumatoid Arthritis?
- New Greece Shoe Policy for Diabetics Favors Amputation
Kelly: So glad I found your site. At one time or another I have had all these symtoms. One thing on your list I believe was missing is what I call my “traveling desease” It travels pretty much all the time. Maybe some times it stays in the same place for a couple of day but usually I have a new place of pain to look forward to each day. I will certainly be reading you sight from now on. Thanks so much for all your work. Kathy
Some people experience the traveling symptoms as you do. Others have flares that are more “one at a time.” I’ve seen people who have only one or two joints affected, without reprieve until the joint requires surgical treatment. And then another joint is attacked later. Some have many joints (or all) flaring at various levels all the time. It really does not behave the same in everyone.
i think patients with RA are kind and helpful people because they really know how hard is to live with this disease and try to continue with a normal life after their diagnosis its very important to consider that this patients usually can develop depresion due to the struggle that they have to go true daily to complete their normal activities.
Good points!
Yes, there needs to be a way to print the information without printing the whole page. I’d like to print it and take it to my doctor’s office.
It took me several years to get a diagnosis… it’s a long story. I’d like to help get the word out.
This. Is correct I love this list I wish I could hand this out to all the people who want to cure me so they can feel better. I’m eating well not jucing taking orencia and being drug complant It has been a long time since I have felt this good but part of me is waiting for the other shoe to drop.The mental part of ra can be a hard or harder than the phyiscal part.Atba ruemy appt this is never mention do they think we just live normal lives doing what we want when we want? Thanks for listening
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Here’s a potential number 21:
Guys with RA are expected to “suck it up” and be a MAN! Yes, and later in life those same loud mouthed dumb dumb’s end up with OA or their first attack of gout and the tears flow at the ER and they still don’t understand us. Because we generally don’t cry or bitch, nor do we run th the hospital when we get a flair of RA; we just take it in stride.
-Roger
Thank You
Bob
I completely agree with all the statements. I usually don’t tell commoners, even medical professionals, unless they are directly related to my case that I have R.A., because if I do, they look at me if I had five heads and seven eyeballs. I walk with a cane – against medical advice, but I refuse to be as young as I am using a walker. Somedays are bad enough I use a wheel chair.
Do you know what I tell people is wrong? MS. If we were in a public forum and I asked how many people had heard of MS, how many could raise their hands? I’d be willing to guess a lot. I bet you if I asked how many people knew how debilitating MS was I’d still not see too many hands go down. Whether medical community or not, MS has more PR, I guess. And R.A., we are so often told, is “just arthritis.” I have a very close foster sister, I was giving her some furniture for her house, she called me in the mid morning, morning stiffness had not worn off and I could already tell it was going to be a bad day. She wanted me to drop everything and let her and her boyfriend come and get the furniture. I had to tell her no. She’s been angry with me ever since. Not just because I’d told her no, but because on social networking sites she saw on other days I was fine. (Heavy sigh) And so she still doesn’t get it.
My mother, a registered critical care nurse, would complain when I was still trying to do a full-time school load deal with my house (which I forefited or an apartment in the last year) about coming over to run errands and cook dinner while I scrambled to do school work and help my daughter do homework. I was just too worn down to do it all.
I still am, but somehow I manage to do it all now. I don’t know how…by the grace of something. But I have my days…and there isn’t anyone who gets it, except maybe my daughter because she lives it with me. She is there when I have 3 different size tennis shoes given the swelling of my feet, or when my cane fails me and I don’t have the strength to catch myself, or on my semi-good days and just carrying my purse is like carrying a load of cement bricks. And she also knows how I have to sleep at night padded by pillows, so I stay comfortable, but also so my bed doesn’t bruise me so badly from all the steriods I’m on.
Thanks to all who have posted comments; such validation! Just saw my rheumy and she said my RA is “good”. – then why do I hurt?! She even brought up the possibility of seeing another rheumy! It hurts knowing that the one person who is supposed to understand is ready to turn their back on you.
I am new to this site, but you got it all correct. Constant pain some or everywhere.
I am absolutely floored about the inflammation of the larynx. I’ve had two episodes of not being able to speak for a month and numerous doctors could not figure out what was wrong with me.
Sometimes I wish I could make the people that I interact with read posts like these. I had the symptoms for ten years before I was diagnosed with RA, I had a flair recently which was made worse by my pharmacy not delivering my medication (basically a whole month out of work), I was almost bullied into quitting by a supervisor at my job, and I’ve been looking at disability (but I’d have to be unable to work for six months). I am only twenty-two years old! (Which means I’m also “too young” for disability)
And to a certain “troll”: NO I am NOT over-dramatic! Nobody with this disease is and while some of what is posted is a bit depressing, at least it’s not as bad as not knowing or thinking that you’re all alone.
(Also, I try not to respond to trolls but the prednisone is really messing around with my temper- just another “fun” little side effect of medication for being “over-dramatic”)
I think I understand Chris. I have had what I understand now to have been 3 prior flare ups. I thought they were bursitis…. super serious knee pain, not much else affected, there wasn’t the fatigue I am in now. Well this time every joint from the hips down to toes have been aching intensely, neck and then even got the larynx thing so bad I couldn’t eat for a couple days or barely swallow water. Point is, I think Chris hasn’t had one of those “serious life changing super flare ups” yet.
Is there a connection between cold weather and RD? By moving from NC to Vermont, I could have family near by to help me out. The only drawback is my question about weather.
Could someone tell me about living in cold weather with RD?
When I think back, i’ve had immune system problems from when I was a child. Runarounds on my fingers and fever blisters. Later in life, before RA dx, CMV (Cytolomegavirus) vaginal and anal cancer caused by a virus. Years before dx, I would come home from work exhausted on Friday and sleep all weekend. 6th grade, tore ligaments in knee. 12th grade, torn cartilage same knee. Warning signs were there. Just didn’t know it. And Chris,many blessings to you. I hope you never hurt like we do.
RE: I was really tired when I made this list. Can you think of any Rheumatoid Arthritis patient facts I missed.
The one you just stated for yourself. Unbelievable Fatigue. I don’t know how a mom can manage.
Another , so often getting sick , cold , flu , foods & recently I had shingles ( all within 4 months) .
I don’t think this is unique to me. I’ve been reading everything I can on your site. Thank you so much. Today I learned to not beat myself up trying to figure out how did I cause this , what am I doing to make it worse , better ? I’m not wasting anymore time agonizing over this.
Bless you , Karen
Surprised you didn’t mention
1) migraines
2) fatigue
3) flu like symptoms
4) tendon/ligament/ muscle problems.
oh Chris- just your last sentence tells
Me the kind of person you are- That you would assume someones politics and bring it into this forum is disgusting.
The fatigue is terrible. I often wonder how I get anything done. Sometimes I get nothing done. I move all my deadlines when I can. What I notice with RA is that people cannot depend on me like they use to. I often wonder if people think I’m lazy and just giving into my disease?! I reassure myself that no matter how many faults I have, lazy has never been one of them. When I was young I had a full active life. Now I have to pay attention to the amount of time I have to get things done, and think about how I can eliminate doing some things altogether. I didn’t mention how some chores are just done kind of half-baked now days. Also, stepping over a pile of clothes does not mean I am lazy either. It means I just can’t do the laundry right now. All ‘to do’ lists have been tossed in my house. I’ll get to it when I can… The stress will kill you if you let it. I have found I have to get work done through the RA problems, but I sure don’t go overboard anymore.
Sometimes my pain is so bad I just want to cry. My fingers swell my hands hurt. I also have it in my neck, the burning is unbelievable. My own family often doesn’t believe me. Its hard when you hurt all the time, I JUST TRY TO LIVE MY LIFE THE BEST I CAN. I hope Chris never has the pain That some of us go through.
Thanks as always, Kelly, for all this information. To Chris, “We can explain it to you, but can’t understand it for you.” (Quoted from a t-shirt I saw). Just think enough time on him. Ignorance is bliss and he must be a happy guy.
Another great post! I agree with them all and have a couple funny stories to back up #12.
In 2013 I had an infection in my tonsils that wouldn’t go away for over 3 months no matter what we tried, so PCP and I decided that I needed a tonsillectomy. That fixed it thankfully, but when I went back to the ENT for a follow up, he asked how bad my pain was, said almost all his adult patients say it was the worst pain they’ve ever felt, thought they would die, etc. When I told him it wasn’t that bad and I’ve had worse pain before, he looked at me funny, started cracking up laughing and and said “I like you, if you ever need an ENT again, please come see me”.
And earlier this month my sister, who also has RA and AS, and I went to Comic Con (killed me, but I love Doctor Who and my Doctor, David Tennant was there, so worth it) and they had booths with people selling stuff, we needed to sit and saw this booth with heat packs and TENS units, we let the guy do his sales pitch so we could use the heat packs and TENS units for free. Apparently her and I are “special”, most people we were told make them stop at 3, we couldn’t feel anything until 8 or 9, and my muscles didn’t react until 11. When both of us told him it didn’t hurt, actually felt good he looked at us like we were crazy. Needless to say, didn’t buy his overpriced stuff, but I got 10mins of free heat pack and a chair and he got a good story of the sisters with a ridiculous high pain tolerance. 🙂
Chris,
I’m curious to know what exactly makes you judge all these people on here so quickly and harshly and feel the need to resort to name calling? So you disagree with the list, great, you’re opinion. Just as the poster stated PRIOR to the article. It’s not based on statistics or a 20 year research study. Your gender bias is irrelevant here. And I find it strange perhaps even ironic that like you not having experienced any of these symptoms on the list and therefore deciding that it just must be dramatic females embellishing the facts, that your inference is not based on statistics or research AND that I haven’t experienced any women being overly dramatic about their symptoms. Speaking from my own experience as a EMERGENCY DEPARTMENT RN working at a busy Level II trauma center in L.A. And I have never NOT worked nor taken time off to be overly dramatic about my RA.
I am a hairdresser and my orthopedic doctor suspects that I have RA.
Thank you so much for this list ! I have been recently diagnosed and am struggling to wrap my head around it. I am a hair stylist and trying to figure out how I will keep working if I don’t get this under control. I am only 28. But the fatigue.. and pain…. all I can say is thank you for putting this out here for me to find.
Kelly, I just found you on Pintrest what is the easiest way to follow you & find the information you have published? I am not great at checking e-mails. It looks like you do very valuable work.
So crazy , I was a hairstylist for 20 years and also noticed that an awful lot of hairstylist seemed to have this disease . I sometimes wondered if the chemicals we worked with brought it on but I really don’t know. I do know that many times my rheumy will look at my hands and because they aren’t huge will assume there is nothing wrong with them but at the same time they will be in extreme pain , seriously annoying. I can relate to just about everything in that list.
I agree Candi. Lots of hairstylists. I’ve said so too.
Ik I am late to reply… But when this came out I was only 14 years old and never thought I would have a chronic illness and join pain so young.
I am only 19 years old and recently diagnosed. For me it was very different than how many others got diagnosed. It was very sudden in my knees and toes, making me unable to walk or bend my knees. Being a college student I had to drop out of school because of being unable to walk to class or even get off the toilet by myself. Most people don’t even believe that I have it, even most of the doctors didn’t believe it until the blood work proved it! I really hope more people find this site because especially people my age don’t have any clue what it is. The most common response I get is “you have arthritis? Isn’t that for old people?” It is so annoying. It is really hard being so young yet so tired and in so much pain all the time.
We have yet to find any meds that help. I am also still very confused to how one gets RA. I was 19 very athletic, healthy, and energetic before having RA. Absolutely no one in my family has it, so what did I do to get it?
I agree with all, especially with the fact that my Rheumatologist doesn’t get my pain, she is constantly saying it is just fibro pain. I know the difference. I also never have that much swelling in my joints never have right from day one. But my Rheumatologist that I have now argues with me and says maybe it isn’t RA! I have paid for all the extensive testing and it is RA! It just sucks when the professional is blind to how differently this disease affects each individual.
How about How tired you are.
That the disease progression is not slow. Finding joint changes happening literally overnight was a huge and sad surprise.
I’m sorry to hear about the swelling vs pain.
My RD doc is cool enough to say, with obese patients I have a hard time determining the swelling (I’m a very comfortable with being fat so…he knew I’d be like ah, that makes sense weight talk wouldn’t make it weird).
((((((hugs))))))
We have to become some excellent fakers.
I have to calm my rage at, At least it’s not cancer.
Hi Chris I have had ra for 27 YEARS.I am not a drama Queen and find your comment insulting.When you had ra for that long you may not hold the same view.
1) RA doesn’t always affect the hands (never my own at least).
I can relate to the discrepancies in medical documents. I just got a copy of all my documents to apply for early retirement/disability. I was astounded. Several things in there my MD has never mentioned like a lymph node that is 12mm but should be 2 to 3, granulomous disease, and over and over and over again I kept reading “RA Lung Stable”. Really? I haven’t been able to sleep in a bed lying flat in almost a year, because I can’t breath and I aspirate, I just recently spent a week in ICU with pulmonary emboli, both lungs, both legs too, and there’s infarction with the clots that means the tissue around the clots has already died. I begin to wonder….Just how bad off do I have to be before he no longer considers me “stable”. This was 3 weeks AFTER my right lung swelled to the point that it cracked two ribs. But I’m “stable”. I guess when this RA Lung finally does me in, my medical record will be marked “unstable”.
PS…I also meant to say that I started a blog, specifically to track and document my RA lung “journey” and have instructed a good friend to send to my doctors a card with the blog address on it so they can go there and see exactly all that I go through, after I’m gone.
I was diagnosed September 2016 so I’m a rookie! What I hate is when I say I have RA is for someone to reply they have RA in their knee or elbow or any singular body part. I always want to scream and say, really? I suffer from crown of my head straight down to ends of by big toes!
Most Rheumatologists don’t have empathy for the patient as they don’t fully understand what you’re living with.
Gosh, didnt know about nurses and hairdressers! I was a nurse for 43 years, retired and almost within 3 months, RA kicked in big style! Had steroid injections in knee and shoulder 3 times in the 10 years before diagnosis. Developed typical RA fingers 25 years before , after birth of my 5th child , but no pain or stiffness!
I find the thought of having to go off Actemra truly frightening. TNFs never worked for me.
Flares are a funny (i.e. weird) fickle thing. I have noticed, without exception, that if a joint area is injured, as in accidentally bumped, the RA dragon (flare) will find the injury within a day or two and that’s where the next flare starts. Flares last 48 hours plus an hour or two. Always. Totally agree that swelling and pain are not linked at the hip.