7 Atypical Rheumatoid Arthritis Effects Are Actually Typical
What can we say about atypical Rheumatoid Arthritis? (UPDATED)
Our similarities & differences with Rheumatoid Arthritis are fascinating! I sure wished I had a dollar for every time a patient told me his / her doctor said he / she has atypical Rheumatoid Arthritis! And some actually have quite common symptoms!
Here are 7 things that are often said to be unusual that are actually pretty common. If I missed one that surprised you, you can add it below as a comment. And I know it’s a commercial, but the Cigna ad made me smile. Would you be the astronaut or the royal princess, the knight or the matador?
People say, “My doctor says I have atypical Rheumatoid Arthritis because…”
1) My hands weren’t affected (at least for awhile).
2) I don’t often have obvious swelling.
3) I also have osteoarthritis, osteoporosis, fibromyalgia syndrome, Sjogren’s syndrome, Hashimoto’s disease or another diagnosis.
4) I didn’t know anyone else with Rheumatoid Arthritis when I was diagnosed. I felt alone.
5) Rheumatoid Arthritis medicine doesn’t agree with me. I still have symptoms and I get side effects.
6) The RA has caused non-articular health problems (outside of the joints).
7) My lab tests are normal even though I have symptoms.
Is there an atypical rheumatoid arthritis?
There seem to be 2 issues here. One is easy to solve. There are different experiences with rheumatoid disease, enough that make it hard to nail down exactly what’s typical.
Second, many people, even doctors, seem to have inaccurate ideas about what is typical. Maybe what’s in textbooks is not what’s typical.
Recommended reading on this topic
- Our 1st ever “typical” discussion: Is There a Typical Rheumatoid Arthritis?
- Discussion of “classic RA” What about Classic Rheumatoid Arthritis?
- 805 comments defy typical: What Is the First Symptom of Rheumatoid Arthritis?
- Practical ideas: 20 Tips for Managing Your Rheumatoid Arthritis Treatment
I was diagnosed 2 years ago with Stage 1 Seronegative RA. It’s been a difficult diagnosis to accept given that my symptoms have been atypical. I had one initial flare that lasted a few days with swelling persisting for about 5 weeks. I have not had a similar experience since that time. I don’t think I’ve had morning stiffness…but….I’m not really sure what it should feel like. I have a tightness in my fingers as if I’ve retained water in them over night…but it quickly disappears when I start moving them. Does that consistute morning stiffness? My pain is typically now asymetrical and has always been infrequent. Pain ususally doesn’t last long is is tolerable. I’ve gone for second opinions and been told that given that they were only looking at my reports, they couldn’t confirm the diagnosis, but that they agree that I have a form of inflammatory arthritis. I’ve had a tough time accepting the diagnosis given that I seem to be so atypical, but my Rheumy insists that all of these factors doesn’t deny that on the x-ray, synovitis and periarticular osetopenia was showing in my foot (Stage 1). About 1 year into the diagnosis, I was also told that I have Fibromyalgia after what I consider a ridiculously quick and superficial exam…but what else could case the fatigue and soft tissue pain that I was experiencing. I started out on Lefluenomide and was on that for 1.5 years. Did fairly well on that….no real side effects. They added in Plaquenil as I was still have some pain and swelling….I didn’t react well to that…so they pulled me off of it. Got switched to Methotrexate just this spring as inflammation was still showing in my right hand. I’ve generally been tolerating it well…but apparently, I’ve got tenderness and swelling in my wrists and my feet. So…will be curious to see what happens. During the past 2 years, I have repeatedly asked my Rheumy…could this be something other than RA….only to be told…no. Logically…I hear his explanations and it all seems to make sense….but…I can’t help but doubt the diagnosis…when the symptoms are so atypical and I don’t seem to have the pain and suffering that others have. I don’t wish for it….but…I want to know what I’m dealing with. It’s so hard to accept that there is no definitive way to diagnose this disease. It doesn’t provide the patient with the closure that they need. The ability to accept and deal with it. I’m doing my best…but I can’t shake this nagging feeling that I’m treating the wrong thing. It also doesn’t help that I have a Rheumy that can’t handle second opinions or doubt on my part.
I’m not symmetrical. I have constant pain and have had 8 joint surgeries, two of them being replacements, and two of them being fusions. My spine, hips, wrist, knees, and feet are all swollen and painful. My fatigue is constant. My blood work is always negative. I remain undiagnosed after seeing two Rhumatolagists, but convinced I have RA.
2 & 7 for me, plus I have almost constant costochondritis now. I’m 23 into this RA lark and the costo started about 3 years ago.
I was diagnosed over a year ago, lost my Health Care coverage (Part of the Health Market fiasco) and will not have coverage until I find a job. Managing symptoms and am glad to see this site because now I have somewhere to come and ask questions. My RA doc thinks my Hep C contributed to this issue (oh that Blood Transfusion, I should have checked it myself..) so I am trying to deal with the side effects from both. Good days and tired, foggy days.
But thanks for being here and yes the first PCP that saw me said you just have a swollen thumb, I said it is a swollen node you dummy! and then the test confirmed my self-DX.
Yep! These are true for me too: I also have osteoarthritis, and Sjogren’s syndrome.
Rheumatoid Arthritis medicine doesn’t agree with me. I still have symptoms and I get side effects.
My lab tests are normal even though I have symptoms. I didn’t know anyone with it when I was diagnosed, but now my husband and one of my adult children have been diagnosed with it too.
I have to share what a primary care doctor told a friend who was diagnosed with RA. He told her that RA was no big deal and he knew all there was to know about it. Said all she needed was more exercise and she’d be fine…and she could hardly walk! I encouraged her to go to a rheumatologist but her doctor refused to refer her since he knew all about it. I told my rheumatologist and he agreed to see her without a referral. But he asked to have her records faxed and again her doctor refused! We couldn’t believe it! She saw my doctor eventually anyway, without her records at first. My rheumatologist diagnosed her with severe RA and Sjogrens. Amazing that a primary care doctor could be so ignorant and jeopardize his patients health like that… not to mention so egotistical. I wish my doc had time to do seminars on RA for all the general practice docs in my area. I asked him but he’s overwhelmed as it is.
I have had Ra ot was finally diagnosed in 1996. Unfortunately I’ve been on every bed nothing works my Ra has never been in remission. All my blood markers for inflammation are always normal. But my Ra factor and anti-ccp are very high. Seems odd I miss my exercising days.
I also have osteo arthritis Hashimoto interstital cystitis and psoractic cross over in arthritis.
Frustrating
I have had RA for 15 years (76years old) with 3 major flare ups. First one damaged my left wrist, the second one destroyed my right elbow which lead to surgery ( lost the radial head) . The last attack affected my left eye. My question is this really normal. I am currently prescribed 400 mg hydroxychoroquine daily which seems to effective. I did go on methotrexate for a year for my eye. I would appreciate any feedback you can offer.
Sincerely,
Gina
This disease doesn’t really have a “normal” pattern, but I have heard stories like yours before. I hope your medicine can keep it from flaring like that again when it seems to cause you the most damage.