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
I just want to thank you, I love your blog and FB page, and just put in for your news letter. I do not have RA, but my mother has RA and for years I watched her struggle, and face each day with a smile and determination. It is so painful to see someone you love so much suffer. Last week my husband, my rock my marathon running super hero was just diagnosed with RA… what are the odds. How this will express itself is still unknown..I actually am a nurse at a large teaching hospital so I have the edge on advocacy, he is in his window of opportunity… I want to involve my second half of life in the awareness and fight for this chronic illness that has affected the two people I love the most…Thank you for this blog.. I think I will be checking in often, if no one objects…
You are such a wonderful daughter & wife to be reading & learning – they are lucky to have you Maryann.
Hi Kelly,
I’ve read on your Blog Web. First please forgive me on my english, I want to say thank you. I use to be confused on my life, health, pain, and what was wrong with me. You have helped me see clearly, I have to do it on my own.
For 6 months now:
I do walking, stretching, deep massages,eat good,get enough sleep. Take my time on doing my daily schedule even at work. Alway pay attention on my body. stretch my self when I feel stiff. I take vitamins and herb. I believe I’m doing the right processes. But don’t make a wrong move, the pain it just sleep in you. It can wake up any time(low,medium,high or a powerful lightening strike on you).
The only concern I have is sometime I don’t have energy even just to flip a page in a book.
Thank you,
Kea
I agree, how we individually cope is not relative. We all share in a terrible chronic disease. We are all judged by outsiders so let us have at least one forum were that is not needed. I am new to this condition and it is terrifying and a lonely place to be. I was so busy working twelve hours a day I forgot to get a life. I cannot talk to anyone in my life because it always ends up being about them!
I’ve been dealing with the symptoms for many years, with doctors, when I had the insurance, telling me it might be lupus or some doctors telling me straight up that it was in my mind so they would not refer me to a neurologist at the time. It’s bad enough when friends and family make your issues seem trivial, but when even doctors treat you this way, everything seems even more hopeless. If you don’t have insurance and you’re stuck in that limbo of “state assistance”, all you can do is smile and nod and say “I’m fine” and try to work as much as you can just to keep from becoming homeless. I have found that if you want help, you have to be homeless and jobless for nearly a year before they even consider any kind of disability. I’ve gotten to the point of not even wanting to try to seek assistance anymore. I have deformity in my feet and it’s starting in my hands and recently I found out that my heart is enlarged, as well as a few other internal issues. It’s the emotional aspect that is starting to get to me now. I’ve never ever in my life had to reach out to anyone, I was always the caregiver, so when I had to put up a GoFundMe page, for assistance so that I could survive and not be homeless while I tried to get some kind of help, it only made me more sad at how friends and family didn’t so much as share my page, much less discuss the situation. No one, to this day, has even asked what RA is like. It makes me very happy to see this blog and know that I’m not crazy or a whiner. Thank you!
Mine was severe when I first had symptoms. My wedding rings were sautered together and the swelling of my hands caused them to pop apart. After starting Prednisone (80mg daily, WOW!) Methotrexate, and Plaquenil, the swelling subsided after about 8 weeks. Still on Prednisone 4mg every other day along with Methotrexate and Plaquenil. Have never had a CCP blood test and labs have always been negative. Being followed by family MD and after 11 years, I still question her, because labs are normal. She just smiles and says look at your hands, and feet. SMH. Even with such pain in hands, ankles, knees, shoulders, etc. I’m still in denial. So I do things i’m not supposed to do and suffer for it.
I have 2 websites that are about Rhematoid and Osteo Arthritis, in these sites, you will read all about how bad arthritis can get.
I have been diagnosed as the worst case of Rhematoid and Osteo Arthritis that is recorded in the Medical World by 2 different
Rhematoid Professors at Mcmaster University. The last bone/body scan that I had the count was over 145 points.
Every joint in my body is gone and every joint in my body has or needs replacement.
I have had over 50 Surgeries because of the Arthritis, both knees, both hips, ankle, spine from C1 to T3.
I am now fighting to save my left leg and need artificial skin grafts.
Please read and post my donation site.
I have been asked to write a book about the effects and pain associated with arthritis and the 50 plus operations that I went through. I am not very good at writing as both my hands are crippled as both my elbows they need replacement. I have had my last rights given to me 4 times the last being July 2015 my kidneys shut down.
Thank you for reading this article.
John Major
I know just how you feel. I’ve been dealing with RA since 1994. Some days, weeks, months are just fine (low level pain). Then it hits: horrible pain in every joint. The only relief I get is propping my joints on pillows and sucking down Naproxen. If people can’t see “evidence”, then they have a hard time understanding what you’re going through. Take care of yourself.
I think my biggest complaint is that others think if you having a good day that your cured. RA is not a static disease! One day you on the top of the mountain, and the next you can be bed ridden!