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Have you gone to a practitioner who makes you feel like you're making up your symptoms? Just went back to a rheumatologist and he said no RA

A myRAteam Member asked a question 💭
Vancouver ( Felida ), WA

I was diagnosed after many tests with RA 20 years ago. I had cortisone shots, worked half time, and radically worked on my diet and exercise, getting a personal trainer to learn how to use my muscles rather than joints (and get stronger). I've "let myself go" and have gone back to the doctor because I'm noticing many pains and fatigue that I think I've brushed under the rug for years. Good news? X-rays show little to no joint damage. So the rheumatologist says it's not RA (and bloodwork doesn't… read more

January 8
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A myRAteam Member

Your Rheumatologist is correct.

January 8
myRAteam

How do you handle feeling dismissed by a rheumatologist when your symptoms are real but tests don't show typical RA markers?

First, you're not crazy, and your symptoms are real. Many myRAteam members have experienced similar frustrations with getting their RA properly recognized.

It's worth knowing that you can have RA Show Full Answer

How do you handle feeling dismissed by a rheumatologist when your symptoms are real but tests don't show typical RA markers?

First, you're not crazy, and your symptoms are real. Many myRAteam members have experienced similar frustrations with getting their RA properly recognized.

It's worth knowing that you can have RA even when blood tests don't show typical markers. This is called seronegative RA, where rheumatoid factor and anti-CCP antibodies don't appear in blood work, but the disease is still present. Some people with RA test negative multiple times before getting a proper diagnosis based on clinical symptoms rather than just lab results.

Your lack of significant joint damage on X-rays after 20 years could actually indicate that your early treatment and lifestyle changes were effective in managing the disease. Early aggressive treatment with disease-modifying drugs can stop or reduce joint damage, and your commitment to diet, exercise, and proper body mechanics may have protected your joints. Here are some steps to consider:

Advocate for yourself:
- Keep a detailed journal of your symptoms, including when pain occurs, fatigue levels, and how symptoms affect your daily life
- Bring this documentation to appointments
- Consider seeking a second opinion from another rheumatologist who may be more familiar with seronegative RA or atypical presentations

Explore the lupus connection:
Your upcoming dermatologist appointment is important. Lupus can cause joint pain, fatigue, and other symptoms that overlap with RA. Since you have discoid lupus, it's possible your symptoms could be related to lupus activity rather than RA, or you could have both conditions.

Don't dismiss your experience:
Missing work and family events due to exhaustion is significant. These symptoms deserve proper investigation and treatment, regardless of what the diagnosis ends up being.

Many myRAteam members have found that persistence in seeking answers eventually led to proper diagnosis and treatment. Your symptoms are valid, and finding a doctor who listens and takes them seriously is crucial.

January 8
A myRAteam Member

@A myRAteam Member I am sure that is SUPER frustrating. I'm sorry!

I REALLY appreciate everyone's responses. It means so much to not feel alone in this... it's crazy how crazy we can feel.

January 9
A myRAteam Member

You should try another doctor! That's so frustrating when they do that Karen,n

January 9
A myRAteam Member

Thank you @A myRAteam Member. I'm on the look. Found my former rheumatologist who diagnosed me. Am looking for my original documents and tests.

January 8

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