Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis
Next week, the blog will be one year old. During this week, I’m sharing some personal thoughts.
Comparing severe Rheumatoid Arthritis & mild Rheumatoid Arthritis
I’ve experienced both sides of this comparison: I’ve been told I have Rheumatoid Arthritis too mild to understand the struggles of others: “How else could you blog every day?” Other times, I hear about those Rheumatoid Arthritis patients who can work a full time job, wash dishes, or take a walk around the lake. They assume if they can do it, then I can too – even though many days I can barely walk to the bathroom.
Most RA’ers have been through some days that are very bad, but then they eventually respond to treatment. Some patients don’t respond to treatment as well and stay in that hard place. However, even a “good” response to treatment can mean very different things for severe RA and mild RA.
I’ve been working on designing a chart to reflect the response to treatment. The current gauge falls short. Imagine the difference between a 50 percent improvement in symptoms in mild Rheumatoid Arthritis affecting a few joints and a 50 percent improvement in severe Rheumatoid Arthritis that involves every joint. They are both called an ACR 50 response to treatment – or “success.” One person can practically get on with life as normal while the other can do little more than dress herself.
There may not be a way to avoid these comparisons since they are important distinctions. But people do ask me, “Where do I fit in?” Here is what I tell them.
3 points on severe Rheumatoid Arthritis v mild Rheumatoid Arthritis
- Differences are inherent with the disease both between patients and in the same patient over time. Some have RA in only certain joints; some have all affected. Some have periods of flare with lesser symptoms in between; some have unremitting symptoms. Some can run and ski while others use wheelchairs or crutches.
- There is a blessed sympathetic feeling when one person with rheumatoid disease (PRD) meets another who has a similar pattern. But watch out for less productive comparisons such as: “Mine is worse than yours” or “If I can do this, then you can too.” What is implied? Are patients who claim greater limitations being accused of dishonesty?
- All Rheumatoid Disease (RD) is dangerous. All RD is a frightening and evil menace. Our uniqueness aside, we have this one common enemy: Rheumatoid Disease / Arthritis.
Severe Rheumatoid Arthritis, mild Rheumatoid Arthritis, & common courtesy
How do you feel when someone tells you, “Well I know someone with RA who can do ___”? Or “Why do you need that handicapped parking space?” Hopefully, we fellow PRD can be sensitive to anyone else who has the disease since they have probably suffered enough without our judging them.
Recommended reading:
- Do You Love a Rheumatoid Arthritis Patient?
- The American College of Rheumatology Redefines Rheumatoid Arthritis
- 13 Ways to Help People Living with Rheumatoid Arthritis
Yes, this is it exactly. We need a new chart for this. I’ve been at both ends of the chart, too. I’ve had months where I just can’t move, not even a little, but right now I’m having a drug-induced remission and I can pass for a normal person.
I was sitting around a table the other day with some peers of mine when one of them said “My m-i-l, who has SEVERE RA, not like Lisa’s little case of it…” and that’s just hurtful. I know that people can’t see our pain (oh, if they could!), but I’d like a little chart to whip out (or slowly drag out, as the case may be) and say “Look, here’s my progression and my expectations. Here’s where I’ve been and what it’s taken to get here and where I’m going.” I guess we’d all like charts like that.
I did not mean to confuse. Sorry. I have not been at both ends of chart since I’ve never really responded to the Biologics. I meant I’ve been on both ends of patients doing comparing.
I agree with you – ouch. Maybe you could draw one & keep it around to explain things. Let me know if you do – I’d love to compare. (Joking!) 😉
I know just how Lisa H feels – you are in a drug-induced remission so that you can “pass” for normal. Everyone expect you to be a cripple, having seen horrible pictures of gnarled hands and feet on the internet and people in wheelchairs.
As Kelly says, having a milder form of the disease does NOT trivialize the fact you’ve got RA. I do know what it’s like to be pushed in a wheelchair off a plane though baggage claim and immigration and to our waiting taxi, because I COULD NOT WALK. I know what it’s like to drop coffee cups and plates, and endure the agony of having to dress/undress for a shower. I know what it’s like to not sleep because of throbbing pain in my joints.
Never let anyone trivialize the fact you’ve got RA!
Jamilla, It does not sound like it was mild on that day! Thank God our hands gnarl more slowly due to these treatments – as you have pointed out before I know. Yes, even though my hands don’t look like my grandfather’s yet, they hurt very bad & they do not work very well any more.
That is the first response I get: they look at my hands and say, “but they look normal”. They may look normal to them, but boy do they hurt! I usually just say there are better drugs today that help prevent deformity, but not pain.
Lisa, Then you will like today’s blog with the part about the hands disease. ;-D
I think everyone’s RA is like a puzzle customized for each patient and we are constantly struggling to solve it! Surprisingly, in my first 3 years with RA I was in much severe inflammatory pain but was able to do a lot more things…attending classes to completing internships….except only I knew how horrifyingly difficult it was to manage (and yes, there were people passing judgments on how I could manage all that if I was actually in pain!!)..Over the period of time inflammation is nearly gone, but nature of pain has become more deep rooted….Today, I can say that I am in less pain compared to what I have experienced, but this kind of pain has forced me to cut down my activities like never before.
My point is that everyday with RA could be different, more painful or less painful….less active or more active, yet remains just as challenging for all of us! Compassion and empathy is the least we can offer to our other fellows. :heart:
Great points. & yes, it is different as it progresses – the pain is different than the early days – it is hard to describe how it has changed, but “deep rooted” is a good start.
And there’s also what’s classified as “moderate” RA.
So many variables…
First, I love your blog. Awesome information.
Thanks so much for this post. Sometimes, I feel guilty for being in drug induced remission. It’s funny how in order to be take seriously, we have to “look” sick.
If we are in remission, we should embrace and celebrate that.
Oh My! Seeking,
I celebrate that others can have remission. May we all find it.
My Rheumy’s office notes always state “moderate to severe” RA. But what exactly does that mean? Someone with “mild” RA can have days just like mine and I have days like them as well. Yes, we don’t always look sick, but don’t you just hate it when you feel like you have to justify yourself to others?? I’ve gotten to where I just say I have RA (not Rheumatoid Arthritis) so I don’t have to hear about this and that from others who have no clue. Most times people don’t question or compare RA, but then I do find some who still feel the need to compare. This disease scares the heck out of me – not only because of what it can do to my joints, but how it can affect all my internal organs. So when someone starts saying well I hurt in my little pinky or some other crazy thing trying to compare to me, it makes me want to scream – “how are your insides??!!”. So, I just keep quiet. Leave it alone. Let their ignorance be my bliss…
Doreen, :heart: ya!
I am so blessed to have (thus far) fairly mild RA– and to have people who are understanding about it. I do work, and raise my kids, and go for walks (slow ones some days), and most of the time pass as a “normal” person. But I’ve also had to use a steak knife to stab open a bottle of cough medicine because I couldn’t get the blasted childproof cap open. And I’ve dropped more small items on the floor than I can count, thanks to hands that no longer make fists. I’m thirty-one years old. I have many years ahead to watch this disease destroy my body. But for now I’m thankful for what I can do, and for the good days, and for the people around me who are so kind and supportive. I am blessed.
Last week a friend wanted me to drive five hours to meet him for an event we both wanted to attend. When I told him that I couldn’t drive that far, he was befuddled. “I’m handicapped, remember? The Rheumatoid Arthritis?” “You’re not THAT handicapped!” he said, which both infuriated me and knocked me down a few notches. I couldn’t believe a good friend would say that, but I have to remind myself that I usually look and sound “fine.” Only I know what goes on inside. *sigh*
terri
Terri, how are you handling it w/ the friend now? I have that with someone very close in my family. She insists I can do things I cannot do. How awkward to try to defend one’s limitations. ;-P
Kelly, I’m amazed you’ve been told you must have a mild case to blog everyday. What type of people get off on making an assumption like that? I consider it a sign of great stamina and resilience in the face of huge hardship. It’s much more than I could do, but I bet it’s a very important component of your self esteem, just to keep on keeping on.
That we with RA continue to judge each other is just very sad. Most of have or will ride the rollercoaster of this disease for decades. Sometimes the only break we get is when it stops to pick up new passengers or related diseases, but it’s almost guaranteed to start up again. Just like rollercoasters some are more scary than others. Mine is like a rickety old wooden one in Va. Beach, that I was sure was going to collapse at any moment.
After so many years of it, including being in the screaming match over handicapped parking, I just don’t care as much about other’s opinions (or I’m trying really hard not to). I’m lucky, I have doctors that understand and of yesterday a new dentist that gets the complications. Their opinions are the ones that count. Going back to therapy is helping. Thanks be, I have a new team that realized my depression and anxiety from this disease will never be pulled apart from just textbook mental health issues. So it’ll be treated as a whole. Do I like being back in therapy? No not at all, but too much has happened, outside the RA, not to. But everything that is going on sure affects the RA.
ps: I think my Humira/Arava combo is finally kicking in, it took months. I’m cutting my nsaid dose in half as a trial so I can see.
Yes, Nanc, I’ve been told that. People have no idea how hard it is.
Did I tell you I also had some grief counseling with my diagnosis? It is certainly healthy and normal to do so especially with your other loss. Better than “getting stuck.” :heart:
This is such a confusing disease. Heck I’ve had it for 20 some years and still can’t figure it out so it is not surprising that someone who doesn’t have it doesn’t understand it. I often have people tell me “Oh, you do well with your RA.” One time I had someone say “How can you have it? You’re not all torn up like you would be if you had it?” The first comment hurts because they don’t understand what it takes to try and “do ok” with it. The amount of medication, therapy and life changes that come with this diagnosis have been life changing. Frankly, many days I don’t do ok but they don’t see that. The second comment ……,well that was just very hurtful and obviously bothered me because it has stayed with me for a long time.
Mild, moderate or severe it is a terrible life changing disease that can change from one course to the next on a dime. My Ra has was severe when diagnoised, mild when in a drug induced remisssion and back to moderate to severe when I lost that remission. All in all it just sucks.
I think that “on a dime” thing may be part of what makes them doubt us. Still hurtful & weird though – is there another disease where you have to prove your limitations by how you look?
Great blog always great articles and topics. Keep up the good work.
Great blog Kelly and one that got me thinking about something I read a while back and here’s a quote from the book:
“People with life threatening illnesses like cancer are particularly likely to compare themselves with those who are in worse shape, which explains that 96 percent of the cancer patients in one study claimed to be in better health than the average cancer patient.” Daniel Gilbert, “Stumbling on Happiness”
I was amazed at that quote and have often thought about how it might compare to people with RA. Do 96% of us think we’re doing better than the average person with RA? I think it might be the other way around for us: the people with RA I meet don’t look sick so I think I’m doing worse but they’re looking at me and saying the same thing. I’d be fascinated to see a survey to test that.
Thanks Jay. That is fascinating. What does that say about us that we are fascinated by that? 😀
Actually, I’ve seen both. When I meet others in person, we compare hands etc and look around for signs which may or may not be apparent. Yet, I often hear patients say things like “I know I don’t have it as bad as some…”
Good post Kelly, really got me thinking. I had a whole paragraph written about my personal experience with RA…but chickened out in posting it because putting myself out there too much. Sometimes I just can’t go there.
Anyway I agree with you Kelly, if you are mild, moderate or severe, we all have our limitations, some more so than others, but you are right it doesn’t make the person who is mild feel less better at times, nor should someone who has severe and not able to walk the steps be expected to because someone who is mild can. It’s all relevant. We need for people to understand this and accept this illness for what it is. Debilitating on so many levels.
Amen, Taffy.
I dont’t ever pretend to pass for ‘normal’ 😛
For me having RA is like being on a roller coaster ride. I have been on the adult ride where the peaks and valleys are very drastic and close together – “OUCH” – just let me be on the couch days!!! At that point I never knew what my day was going to be like until I tried to get out of bed.
Luckily I am now on the gentler, kiddie ride – pain is still there but there is little swelling and less stiffness later in the day. I will take all the good days I can get 😀
Unfortunately, that does not mean that the fatigue goes away! I think that is one thing that people who do not have RA understand – how could they?
I’m thankful that I can still work but it really drains me and it means most Saturday’s become recupe days.
Your blog is great.I’ going through all parts!!!Meth helped then stopped to work, so I was 10 month with Enbrel and it was great, nice remission than it stopped working. They tried Remicade and this made me so bad!!!Could’nt do anything .It was so hard to climd a few stairs, to get dressed to cut meat or to wash a plate. After they understood the medicine made it worst I got Rituximab and it really put me in mild Ra. Hope it will help when I’ll get my next course!!!
Than You for trying to make people understand they are a lot of satges and everyone is different. But we are the first people who need to get it !!!
Thank you Annick. It is great to hear from you. Good luck with the Rituxan.
My biggest fear is that my mild inflammatory arthritis will become severe. I wish there were some ways to predict its course. 🙁 I have a good prognosis due to bloods/xrays/clinical symptoms but I also have another 60 years in this body to wait and see haha.
How are they treating you for that, Jenny? I hope it does not progress either. Good luck.
I am just starting sulfasalazine, I don’t have erosions yet so we’re hoping that the med settles the symptoms. If not then I guess it’ll be methotrexate next. Thanks for writing back 🙂
Wow – I am nearly speechless. I can’t imagine making such suppositions. I consider myself to have mild RA (because I can now do my own buttons in the morning and walk without a limp), but I well know that RA runs the gamut from being able to do most things to being in a wheelchair and finding many tasks difficult. I just cannot imagine anyone *with* RA make wild assumptions about others abilities. Now, non-RA’ers, I get it a bit. But RA’ers? Wow. I hope more of them read your blog and realize how insensitive and inaccurate their assumptions may be!!
Kelly, I hope that you are able to continue here for a long time because you have given a great gift to people who might not otherwise find companions in this journey we have all begun. I know for me, finding people like me doesn’t happen very often, even with the volunteer work I do with the Arthritis Foundation. I also really like your pic for this chapter. I was driving home from Davenport IA yesterday and I stopped at a rest stop on Spoon River. There was a short path you could walk down that took you thru a couple of wooden bridges over the river and then to some stairs going up. I went up those steps to see what was there at the end. Low & behold, there was a tower like the one in your pic. I couldn’t get the nerve to climb it as I was by myself but maybe next time. I was very pleased with myself that I made it as far as I did, considering my “moderate to severe” RA was being difficult. Thank you for helping me remember I AM still alive & can experience new things. 🙂
Labels are not helpful, an somewhat irrelevant. Everyone experiences this disease in a unique way. Even severe disease that is well controlled may look pretty minor on a good day. What we have in common is this battle with our own bodies.
Becky, Thanks for commenting on the picture. I felt like death that day and looked horrible. I still wanted the photos because I wanted to remember that I really did those things even though I was so bad off. All of the images on the blog have a story – I love that you noticed. :heart:
A wise co-worker and friend once told me, “Everyone has their own reality.” I use that phrase often in response to people who don’t seem to understand what another (or I) might be going through. It’s a pretty good, standard response to have at the ready and works for a variety of situations.
I’ve been known to say something similar. When someone acts as if RA is not a real problem & expects me to do more than is possible, I might think (or say?) “I am sorry that I am not able to live in that reality. I’d like to be able to get in there.” Haha. :-))
My trouble is with my SO. He doesn’t get it at ALL. I just was diagnosed in December and let me tell you, not only a physical roller coaster ride but a emotional. He doesn’t see it at all. And I just can’t explain it, he shuts down to listen to me. For heavens sake! I just keep telling myself, that I am better off than previous generations, because at least I have more Rx choices. Dear god, the whole, “invisible disease” does tick me off at times, the whole feeling of having to explain myself and why or why not i am doing something. Sigh…
I wish there were an easy answer, Beth. I hear this all the time – even from guys with RA. Sometimes people email out a post for them to read – there is a category here called for non-RA’ers with a lot of appropriate messages to help others understand. Do you think your doc could help explain things – if he went to an appointment sometime?
I have been dealing with RA for almost a year now. Even though I think I have had it for alot longer. The pain is so bad, I can barely move my hands and feet are swollen almost all the time the pain in my joint hurt so bad and my family doesn’t seem to understand. I don’t want to be a bother to them. I am seeing a doctor for it but I have been on a few differnt drugs and they ease some of the pain. But the pain is always there. I do not have anyone to talk to about it. I am frustrated and depressed, I want my life back, the way I was 8 nto 10 years ago. I hate the way I feel.
Hi Christine. I wish I could help. Those experiences are very familiar. It’s good to have someone you can tell – I tell my daughter most things – but many things only others w/ RA can understand. Recently, I’ve met a couple people w/ RA & found it met a need I didn’t realize before… Have you ever thought about finding another person w/ RA & having coffee someday?
I need to find a support group or another person with it. Besides my mom who is my best friend but lives so far away. She has had RA since she was in her late 30’s. I now have a complete understanding of the pain she has been going thru fo so long. I don’t know where to look for a support group.
I know might sound overwhelming to do it, but you might be able to start something yourself. All it takes is one or 2 people and then it’s a group. Then if you want to find others, you do it together. Maybe you could meet someone thru your doctor’s office or through our Local Support Groups page. It’s under re-construction, but folks are leaving their names in the comments there so that others can find them. Also, a lot of people have found each other through my Facebook page.
I have started talking with people on Facebook. I go to the Doctors middle of July I will ask them if they know of a support group. Thanks for your suggestions I appreciate the help. I have always been able to do alot I have worked 2 jobs most of my life and for the last couple of years I haven’t been able to do much of anything. The pain is getting alot worse and the fatigue is cmpletely out of control. I am so tired all of the time.
I was diagnosed a year ago, even though I think I have had it for a lot longer. The pain and emotional roller coaster I’m on is crazy. I hate the way my body feels, I feel that my body has turned on me. I used to be able to do a lot. Now I can barely get out of bed, some days are better that others. But the pain is always there.I have to get up an go to work every day. But getting through my day is hard and when I get home all I do is sleep and rest just to get through another day.My family keeps telling me I’m not the same, I don’t laugh or play anymore. They just don’t get it, I do all i can just to get through the pain. I have no one I can talk to, I try to talk to my family but they just don’t understand. I totally understand what my mother has gone thru all her life. I just wish there was more support for people who have RA. I am beginning to hate life I just wish I felt like I did 10 years ago. I don’t even have the energy play with my Granddaughter.
I was diagnosed about a year ago and couldn’t agree more with this article. I have encountered so many people (family included) who just don’t understand how different this disease can be from not only person to person but from day to day. I can be “normal” for a while and then out of nowhere can hardly get out of bed. I am currently still working (letter carrier) and some days it takes everything I can just to make it thru the day and end up going to bed as soon as I get home. I’ve even had doctors say the swelling isn’t that bad so I don’t know why you’re complaining about pain! what?!? I do agree we as patients need to especially be more sympathetic to each other-we all have good days and bad and we need to be there for each other since noone else really understands what we are going thru.
True Briana. We do.
Swelling and pain often do not correlate. I’m sorry your doc said those things to you. Have you already read the swelling post w/ over 130 comments to that effect? I’m just saying you’re definitely not alone.
Soy paciente con Artritis r. diagnosticada desde hace mas de 8 años, en ellos he tenido de todo periodos buenos y brotes duros, ahora tengo uno desde hace 3 meses, pero hacia 4 años que no los tenia, intentar cada día tener una vida lo mas normal posible me ha funcionado muy bien y a pesar de este brote pienso seguir haciéndolo. Pienso que hay que hacer frente a la enfermedad, aprender a vivir con ella y sobre todo aceptar nuestras limitaciones, podemos adaptarnos.
Es muy importante no dejarse vencer, intentar cada día hacer todo lo que podamos por nosotros mismos y sobre todo no quedarnos parados o nuestras articulaciones se deterioraran mas cada día, se quedaran bloqueadas.
Suerte y mucha fuerza a todos los afectados por esta enfermedad, no dejéis que ella pueda con vosotros, luchar por vuestro bienestar.
Besos
Welcome J.A.S. – do you read English? I will try to reply in Spanish but I am not too good at it!
J.A.S. – Hablar Espanol – Poquito??? (speak and read a little more than write) will try to write and translate and then I will post – if you read English – Welcome to Warrior – it is a wonderful community of caring loving people who give warmth and support and love.
There is also a Facebook Page if you would like to join us there please do!
You sound like you have a great, positive attitude. Please join our community!
Español(Spanish)
→ También hay una página de Facebook si quieres unirte a nosotros no por favor!
Hablas como si tuvieras una gran actitud, positiva. Por favor, únase a nuestra comunidad!(Hablar y leer un poco más que escribir) a tratar de escribir y traducir y después voy a publicar – si usted lee Inglés – Bienvenido a Guerrero – es una maravillosa comunidad de gente amante de cuidar que dan calidez y el apoyo y el amor.
I hope this translation is correct!
Wow, Pamela, that’s great. Thanks for replying to JAS.
🙂 Welcome JAS. Thank you for commenting.
Hi Kelly
This might sound strange but I don’t know whether my RA is severe, mild, moderate, less or more. I don’t have children – so I can’t compare it with childbirth. But ………… I have concluded – it is what it is to me today, this hour, this minute depending on how bad it is at the time. :teeth:
I suspect that RA has been an issue for me a lot longer than I realised. My physical abilities have been gradually decreasing since I had lumbar spine problems in 1999, followed by the rupture of my L4/5 disc in 2002 and more recently L3/4 (April). Reading my 2004 orthopaedic specialists report again, I note he said then that I was in the almost severely disabled category. But I was determined to continue working for as long as possible. By my RA diagnosis in April 09 – I had to surrender and stop. I am 44 and I suspect this to be permanent, but maybe not – we’ll see.
My pain has worsened recently – the mornings and evenings being the worst. My pharmacist said the other day (which I may have mentioned on another post before) ‘You’re lucky because your hands aren’t ‘all gnarled’. That day – it didn’t bother me much – but that too depends on the day, the hour, the minute even. :-/
A number of years ago a very wise friend (a therapist) said that some people experience horrendous situations by anyone’s understanding, and some that may not appear so bad. However, she said that – it’s not necessarily WHAT experiences we have, but – ‘how that experience affects us’. I’d forgotten that ‘piece of wisdom’ until now. :doh:
I have not seen on this site implying that their RA, pain or anything else is worse than someone else – in fact quite the contrary. I know that this is nothing new – but my friend’s wisdom is really applicable for me and I hope others may find some benefit if they are struggling with their own RA severity or anything else for that matter.
I’m aware that this is nothing new, but I know that I can forget things that I once knew. I apologise for my long posts – I’m talkative too.
Thank you again Kelly for your hard work, compassion, passion and dedication in shining the light on RA, fighting this ‘silent’ disease and providing a safe place where we can be ourselves.
Gentle hugs Kathryn 🙂
Kathryn, It seems different docs are thinking about different things w/regard to severity. Sometimes how fast it progresses or its aggressiveness with regard to damage or how severely it impairs a person. Many of us are realizing the same thing: that we had symptoms long before we had a diagnosis unfortunately. I’m sorry your pain is worsening. Hopefully there won’t come a day when your hands are badly gnarled visibly to match how they feel. :heart:
hi my name is jamie I was diagnosed with severe rheumatoid atrthritus at age 16 living with out a diagnoses for 1 yr. I couldn’t be labeled with juvinial RA because my RA was too severe is there n e other cases like mine out there?
Kelly …I don’t know why I had not noticed this blog post before. It was just what I needed to hear today. I have been struggling as many know to get appropriate care. I feel as though my RA due to it’s Double Sero Negative status and mild swelling has not been taken seriously by the medical professionals I have come across…Having what most consider Mild RA is a big problem. I have had 3 distinct flares since the age of 42. I am now 57. My third has been the worst…I have been in a flare since June of this year (2010). I am only on Plaquenil. I cannot walk for long, I hobble around in the morning, I am in chronic pain, I can only wear crocs never shoes, I have swelling but not much to make a Rheumy treat me more aggressively. Sometimes being a patient like that, one feels like a second class RA patient. I have the fear that one day they will find joint damage that is permanent and finally say, when it is too late, I need more aggressive treatment. My labs are not impressive and my swelling is fickle and does not perform on demand. I take pictures, but Rheumy’s in my area want to see it and feel the swelling before they will believe you. You are so right, RA is not a contest, RA is not who has it worse, I might be Double Sero Negative but I am not one of those dancing happy people you see on RA Medication Ads…I am a shadow of my former self. I had to be put on steroids to be able to walk and am now coming off the steroids in order for them to deem me swollen enough. When is swollen enough….enough? My diagnosis was in 1998, documented, but new physicians want new evidence of active disease. I am angry at my own body for not producing enough evidence for someone to treat me. You are so RIGHT…”having a milder form of the disease does NOT trivialize the fact you’ve got RA” I just wish the Rheumy’s I have had knew that. RA is a sneaky beast I have heard time and time again from Warriors who had their symptoms trivialized and blamed on other conditions for years before they finally realized it was RA all along, only to suffer permanent damage to their joints. So I will fight on….Whatever anyone calls my disease….I have RA and RA is a dangerous and unpredictable disease. Mild, Moderate or Severe, RA is truly a Beast of a Disease we are Equal Warriors…and we must keep up the fight against this horrible disease…Thanks for all you do <3
This blog brings up a great point. I don’t want to isolate anyone with RA, because their disease is “better” or “worse” than mine. Like most people with RA I have seen days I can’t brush my hair. I am lucky to have had many days in my 17 years of having RA where I can ski and hike, because Enbrel worked very well for me for a about 9 years. Right now, I am really struggling though. Thanks for you blog. It helps me feel like I am not the only one with RA!
Thanks Megan. Yes, we are not alone. And many stages of RA make it hard for people to understand – even other people with RA.
I’ll bet you can sympathize with many people since you have seen different stages.
It’s hard when some don’t respond to treatments and people doubt that because they personally do. I hope we can show the many faces of RA here & accept the reality of it.
Its good to find a forum where we can talk about severe RA. I am 38 years old, a mum of 3 kids age 8,6 and 3years old. Being struggling the last two years. Lately, got pleurisy, seems RA is attacking now conective tissue as well as cartilage. My lungs had been affected too. With an apparent asthma every time I have a flare…leaving me breathless, tight throat and chest pain. I am taking 50mg enternecept (enebrel) every week, plus methrotrexate 30mgs, two tablets of plaquenil plus antidepressants. Every day I have pain in my hands, feet stiff every time I stop activity, pain is at all times. Happy that I can walk, couldnt a year ago. Now I can care after my kids, but still need to sleep most of the day…now a days not every day, maybe 3 to 4 times a week, for 3 to4 hours straight. Also I am RA sero negative… Anyone like this? thanks for listening
Martha, yes, I think a lot of things you say are common to those of us living with RA – both with negative tests and the way you push hard to take strong meds to try to be able to walk & take care of your family! And the pleurisy too…
You aren’t alone. We do have several regular readers from your country too! Thanks for speaking up!
I am enjoying reading your blog, it helps me so much to explain RA to friends and family, who still seem to think it is like OA an ache here and there!!! good job, l still smile!!
I wish that they had never added the word arthritis to the diagnosis. It just makes it more difficult to explain. I prefer rheumatoid hell! Once you add the arthritis to it, everyone has it…so after I say I have RA I always add, “You know, the autoimmune disease where in my body attacks its own cells”. I have been diagnosed with moderate to severe RA. I think it got to this point because they couldn’t find a diagnosis and by the time they figured it out, it had progressed too far. For years, the Dr. kept running blood tests only to come up with it being negative for RA before sending me to a rheumatologist. I had gotten to the point I could barely walk. I kept pressuring her to find out what was wrong with me! She was fine with telling me that I didn’t have RA, but didn’t want to spend the time to find out ‘what’ was wrong. To appease me she also sent me to an orthopedic surgeon and a podiatrist. I had a meniscus tear in my knee, plantar fasciatis, a lis franc fracture, bone erosion in my foot and seronegative RA. Hmm, interesting because I was told that I didn’t have RA, then I was also told that seronegative RA is LESS severe…but seven screws in your foot to stabilize it I don’t consider LESS severe. I have had at least six surgeries in the last two years.
From talking with others who have RA, I have found that most are not complainers. We just ‘grin and bear the pain’ because we are in so much pain most of the time. We are not good at slowing things down, we go at it with our full force and suffer the consequences of our bodies acting like spoiled brats. Most have an excellent sense of humor, you have to or you would cry all the time. It took a long time to get a diagnosis, I’m not happy about it, but I know that I that there was a reason for my misery.
Kelly: I’m newly diagnosed, so my RA is not that bad, YET> I read your things and i cringe thinking that this is perhaps where i will be heading in years to come. I have trouble understanding really what to expect and this article really helps put it in perspective. God bless all you do for us! dana sebek
Dear Dana, please don’t be afraid because no one can tell you just what to expect. Reading comments and posts here can give you a picture of the range of possible ways RA can affect a person. But, RA can progress over time and sometimes also REMIT, so there is ALWAYS hope and of course more reason to hope now than ever as science starts to really take apart this disease.
I hope your treatments work and the years to come turn out evenbetter than you had hoped!!
I was officially diagnosed just six months ago and consider my case “mild” as I am responding to treatment. I always have some pain but only sometimes severe pain. I consider myself lucky and appreciate where I am since I know how quickly things can change. I am totally perplexed that someone with RA would play the comparison game. We all know how different this disease can be – person to person and day to day with the same person. As for people who don’t have it – I will never understand why people feel the need to judge, label and quantify someone else’s experience.
Kelly, this is the first time that I’ve read this and certainly you’ve made some good points such as never compare your level of RA with another. I have severe RA with a great deal of disability. I cannot walk but a few steps on my own and even then, I’m very unsteady on my feet.
It’s frustrating to me that there is nothing on the web that I’ve been able to find that will explain what it means to live with treatment resistant severe RA. Why do you think that is and would you step out there for us and write an article that would best explain what it means for those of us who live each day with extensive disabilities and limitations due to severe RA, plus the complications, etc., etc.
I’m very frustrated and since there doesn’t appear to be any research on this topic, we need you to speak out with more detail than this particular article does. I’m an avid supporter of RA Warrior and have been for about as long as you’ve had your blog. There isn’t any better.
I thank you in advance. God Bless!
Anthony, I’ll certainly heed your request and do my best to portray the severe disability that RA can bring. Often, I’ve been criticized for the opposite reason – people say that RA is not that bad and shame on me for writing that it is a real & serious disease when it’s really just a type of arthritis. I know I cannot please everyone, but I do my best to truthfully portray the voices that I hear, giving their words as great a megaphone as possible.
I love knowing that I do have Ra friends that I can share, listen and learn from, whether they have mild, severe, or in between RA. I hope to be there for my friends with RA, during hard times and special times. Whether to share or just be a listening friend… It is so important that we are in this together and not by ourselves. If there are lucky RA people, I think I must consider myself one. I do have high pain tolerance, lucky! Not all my joints hurt at once, lucky! I found Kelly’s blog, lucky! Do I push myself until I can’t go anymore, yes I do! Because I have friends that hurt worse than me, and I am so afraid it is right around the corner for me. I am scared silly. When I do have a flare they are whoppers. Usually just in one area. Lucky!
I think I just want everyone to know that we all hurt somewhere,some not as bad today, but around the corner, who knows.. God Bless RA friends.
Steph
Hi Steph! What I suspect after hearing from so many with RA is that most of us do push ourselves as hard as we can – maybe one reason that others do not understand how hard it is.
Steph, I think you are completely correct. Comparisons come from people wanting others to recognize that pain we all now have to live with. Pain is not equal for all, some feel it worse than others. Comparisons can also be detrimental. Those are the things we get so angry with those who don’t understand RA and what we deal with. How many times do we say “Don’t compare me to ……” or “Don’t compare your pinky pain or osteoarthritis to what I deal with on a daily basis!” because we just want those people to simply acknowledge that we hurt or are exhausted or fed up. One persons “moderate” RA is anothers “severe” or “mild”. I really wish that we could do away with categories and just treat the disease individually. I really believe that is the only way to present a unified front in getting this horrible disease the recognition it warrents. Peace all!!
Kelly, I was just re-reading these wonderful, honest comments, and one of them reminded me of 57 years ago in my first pregnancy, when I first started with morning sickness. My husband put garlic toast in the toaster, I started to gag, and my stupid brother-in-law said, “Lyn you aren’t THAT pregnant!”
My RA goes back and forth between these two. Rheumy says that my labs show a very aggressive pattern. I am blessed though,, with long periods of little or no disease activity then WHAM, unrelated to stress, maybe something to do with weather(??) I could have a month or two with horrible unrelenting symptoms, and multiple joint involvement, and then all of the “invisible” symptoms like fatigue, shortness of breath, flu like symptoms, seem to get so much worse. All of the invisible symptoms are usually always present. After I relocated, and luckily experienced a one year period of remission, I was hit with the longest and most severe flare. I was surrounded by people who did not know me before I had any symptoms. I think many of them thought that I was making a big deal out of nothing. I was concerned they thought I was in a bad relationship with my limping one day and favoring an affecting arm the next. This increases the stress level exponentially. It was not until the end of the summer when I was feeling pretty well, that someone that I saw quite regularly commented “Wow! You look great!” All I could think of is “this is how I normally look. My natural skin color really is NOT gray”. It was the first time that I realized this too. I think I have seen the full spectrum of RA and dealt with the disbelief of others, some minimizing physicians, and one good physician. I can see how others may not “see” and appreciate the symptoms, because it was not until the “looking good ” comment was made, that I realized that I was close to where I was before I started having symptoms. It starts slow and I think I was getting accustomed to my gray skin, my hunched, guarding, splinting and stressed appearance. I was so glad to see the old me re-emerge, even if it’s for brief periods. I know that it sounds like I am complaining/whining when I mention the RA to others, and it’s because I DO have periods when I look and almost feel like my “old self” I want those days all of the time, and desperately try to cling to those days because it is terrifying to watch this happen to ourselves. Having been a nurse for 20 years, and with a great majority of my experience being in emergency medicine, I KNOW the reactions of staff when a patient with chronic illness shows up in the ER or even at the doctor’s office. With a roll of the eyes, the explanation that it’s a chronic problem and is to be expected. They think it’s just joint pain, but sometimes, I feel near death. I hope I never rolled my eyes at a patient. I hope I conveyed to them that their symptoms still mattered, whether it was part of their disease pattern and to be expected, or not. I hope I always conveyed “if it’s an emergency to you then it’s an emergency to me”. When I go to my rheumy and he asks “how are you doing?” I know he doesn’t really want to know, he wants to hear “…doing great”. Sometimes, I tell him “doing great” just because I can’t handle the reaction to any other reply I may have to offer. I also do the same with family and friends, because I can’t bear the judgment. I’m sure this skews the research and I know that I am not the only one.
You said: “I also do the same with family and friends, because I can’t bear the judgment. I’m sure this skews the research and I know that I am not the only one.” I don’t think you are either. I think it’s more common than not. That together with our actual individual differences account for a good portion of the confusion.
Invisible symptoms are not fair mostly because of the help that’s denied. And I think I’ve decided it’s the true example of “adding insult to injury” to have unrelenting RA for years at a time in every joint and then be disbelieved and therefore denied help.
Kelly, thank you again and again for your website. It has really helped me to understand that, like your other article “the mouse in my pocket” we’re not alone. I try to pass your articles on, and unfortunately, that too, is considered “complaining”. I tried to explain my symptoms of limited mobility to avoid assumptions that I was being abused or something, but that is considered complaining as well. Not only will I be affected by this secret society but so will everyone associated with someone with RA. Perhaps if family members and friends understood that it’s not just me being judged but them too, they would become more proactive to try to educate others. Some people can’t just be supportive for the right reasons.
Once, my ex-boyfriend (who always shamed me into silence) asked if anyone inquired about why I could not lift my arm and why I was limping. I told him “sure they did” He asked “what did you say?” I told him “I shrugged my shoulders and walked away” He replied “I hope they don’t think I beat the crap out of you” I replied “without explanation, I guess they are free to make their own assumptions”. He became more verbal about my RA than I was. It’s funny isn’t it? What I suffer through daily is not a problem until it affects another’s image.
I am a 57 year old male,a machinist for 39 years I would have minor athritis pain and swelling off and on for periods of weeks to months.I noticed my fingers were becoming crooked,drifting toward the little finger and bunions on both feet were becoming bigger.I had to cut open my work shoes along the sole to relive the pain of the bunions.I thought it was wear and tear arthritis.Four years ago I had a disc replaced in my neck with a ball joint style.Since that time one knee,both ankles,both wrist,elbow,and spine have been severly compromised.I can walk slow and still do things,with difficulty.Make a long story short,I had pain moderate,I took Mobic,It was finially confirmed I had RA and now I take Metho,which has slowed some symtoms down.But in essence the damage has been done and continues,DO NOT PUT OFF GETTING TREATMENT FOR RA.I was ignorant of the disease and due to the mild to moderate severity of the pain I waited too long.
Thanks for posting that, Steve. I’m glad your pain wasn’t severe – we all present differently – but awareness of the disease is obviously a great need! Both patients and doctors need to be able to recognize RA better so that treatment can begin that hopefully slows the progression for many patients.
Thank-you for your blog, Kelly.
When I first came down with RA I felt like my wrists were broken. I had NO idea what was happening to me. It went very fast through-out my ol’ bod! There was a time when I had to crawl because I couldn’t walk. I am lucky that I do respond to the meds, but it has been one right after another as the “cure” wears off or I get severe infections. I look fairly normal now. Most people couldn’t tell there is anything wrong with me , no twisted hands etc. just that typical extreme tired look we all get. I too, opt to use my wrist braces and a wheel chair when I travel because, in all honesty, flying hurts! But to see the look on people faces, I must admit, bugs me. Maybe I’m being hypersensitive about it, I don’t know. Then, at times, people say to me ” sure looks like you’re doing ok to me…brother! If they only knew! But it sounds to me that people with RA are over achievers when it comes to trying to live a normal life. Good for us!
Even though I have severe RA, I have responded well to meds. I still have flairs and bad days. I know what it feels like not being able to walk. If I were not on meds I am sure I would be in a wheel chair. Most days I look like a normal person doing normal things. I am one of the lucky ones so far! Sometimes I feel a little guilty that I am one of the lucky ones. Reading about how bad most people are makes me sad. But I know how quickly drugs stop working, become immune to them, side effects, etc… I will enjoy my good days while I have them!
Thank you Kelly for this website. It has more information than I could glean from my doctors — No one understands the pain and I can’t explain it, but your post are informative and well done. Thanks for speaking plainly. I hope you have relief from the pain.
Thank you Allison! Information & encouragement is what it’s all about! 🙂 https://www.rawarrior.com/video-blog-two-essentials-with-a-rheumatoid-arthritis-diagnosis/
I’ve had RA about 25 years. I guess I would consider it se- vere-I’ve had 5 arthoscopies on my right knee, an ACL recon-
struct & finally a total knee replacement (bicompartmental) 3 years ago, both shoulders repaired for several problems including a full thickness tear of the rotator cuff, bilate-ral cataract removals due to steroids & left hip surgery. I work full time as a nurse case manager & there are just times when I cannot move, it’s just not gonna happen. Some- times it hurts to move anything. I used to get worried what people would say (read employer here), then I realized, I’m usually able to walk & take care of myself, as well as working to help sick patients. I don’t drive much anymore because my wonderful husband takes exquisite care of me & knows that because of my eyes, my vision isn’t as good at night as it should be to drive safely. I take a lot of meds, but I’m alive & I get to see my kids & grandkids. I also have pretty good health insurance thru my current employer, so yes, I do have severe RA, but I try to just take everything in stride. When I feel like maybe there is more going on than I can handle, I just remember what my dad used to say: Jan, how do you eat an elephant? One bite at a time. And you know what? He was right. Stay strong & good luck!
I know this is an old post, but it is worth commenting on. First of all – thanks to you Kelly for all you do for the RA community. Yours was the first blog I found after being diagnosed.
I personally hate the comparisons between cases of RA and other conditions. Every person is different, and no two people have the same disease pattern. And, as we all know, the pattern can change from one day to the next. I have days when I feel like I could climb mountains, and some when getting out of bed is a pain in my rear.
I feel blessed that RA has not taken everything from me, and that I have found ways to participate in activities I love. However there has been lots of accommodation and adjustment in my life, and to compare my disease process with anyone else’s would do both of us a disservice.
OK – rant over. Thanks again for the RA Warrior site. It continues to be a source of information and inspiration.
MIke
It’s so interesting that you’re thinking about these things today, Mike. I’ve been buried the past week in a paper I’m writing to which this issue is important. When we survey patients about disease activity levels, we see the same distribution we see in our community – there are many like you, probably a majority who have ups & downs – days when you are more able, but you still “know” you have RA – it’s never really “gone.” And there is also a large portion – maybe a third of us, who have constant disease or who have not responded to treatments so that all of our days are like your “bad” days – filled with RA restrictions and pain. I agree that comparing can do a disservice in most cases, unless it is in an academic sense in order to learn or in a personal sense with the goal of understanding each other better (empathy).
The medical profession and the public do not understand RA sufficiently, so our blogging is an important contribution. Occasionally, I’ve heard an assertion from someone in the medical community that only the most severe patients participate in social media or activism or even write blogs. That is not what we observe in actuality and I’m grateful for all reasonable voices who reflect various aspects or levels of the disease and its progression.
Another very important thing you mention is the accommodation issue. I’m advocating that this would be incorporated into measures of function since our ability to adapt is not accounted for when disease progression is measured. It could cause a misinterpretation of dz progression that should be addressed w/ adjustments in therapy.
Thanks for the discussion. We have no “old” posts – we get comments across the blog every day.
I’m 48 yrs old and was diagnosed with RA just a few years ago. I don’t take any medication, I have a pretty active life. I feel stiff in the mornings and sometime it takes a while for me to move after sitting for a long while ( I have an office job). I feel I’m very blessed that I don’t suffer like some with RA.
However My Auntie has Severe RA, she’s had it from her late 20’s. So she has suffere. But then I know there are people out there that is much more worse.
So yes there appears to many levels of RA, and people who don’t have really don’t understand it.
But I found myself researching this condition more because I’ve had to take out an additional Health Insurance to cover my Mortgage.
I live in the UK and yes we get Free health Care, but I pay extra to make sure if anything happens to me my family are covered.
The insurers have tripled my cover because they say I’m a risk and therefore even though my doctor does say I have it ‘Mild’ (very mild) they stated and I quote “We appreciate this is mild and requires no medication currently but due to the unknown progression of this and possible treatment regimes in the future the premium has been applied”.
So straight away I’ve been penalised for having a condition that no-one seems to know about.
I have nothing to complain about, but not enough is known about it.
i have been diagnoaed with ra and its so difficult because the doctor says they have to treat me aggressively and its scarring me
Oh Kelly, thank you.
The tears just keep coming as I read.
x
So much for me is down to state-dependent memory. On good days I get stuff done and feel like my old self, wonder why I let the bad days get me down, as surely they can’t be that bad, right? Why on earth am I considering immune-suppressant meds for life, I can’t need that? Other days when my hands are burning and banging, the lethargy and stiffness make me want to scream and I can’t describe or imagine ever again feeling well…
With so little consistency in my own experience and memory comparing to others seems meaningless, pain is so subjective anyway. Some people always seem to want to measure and compare and present themselves in relation to others, but for me this condition has made me focus more internally on my own experience and I wish I didn’t have to bother explaining to people who hve absolutely no idea!
I was recently diagnosed with RA. I lead a very active lifestyle, and my RA is said to be on the mild side, although I am young and only just started symptoms about a half a year ago. I am worried that it will progress to be more severe, although I can say things are more or less under control right now. I have given up martial arts and taken to yoga instead, changed from running to biking, but I am still active.
A agree with you. Some people have it worse at times than others, but we all have been diagnosed with RA and must find our own ways of coping without belittling others.