Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of myRAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Just wondering how many of you have more going on than just RA?

A myRAteam Member asked a question đź’­
Detroit, MI

I have a trifecta of health issues: EDS - genetic connective tissue disorder, Seronegative RA - autoimmune disorder, and recently diagnosed with CRPS - neurological disorder. I've been thinking about how rare these disorders are (Seronegative RA is more rare than RA), and I just can't wrap my head around the fact that I have all three. Maybe it's not that unusual? I'd love to hear your thoughts and input.🥰

May 15
 · 
Reactions

Answer Summary

Members responded warmly to the question about having multiple rare conditions alongside RA, with an overwhelming consensus that living with... Read more

Members responded warmly to the question about having multiple rare conditions alongside RA, with an overwhelming consensus that living with several overlapping diagnoses is far more common than many realize. Several members shared their own long lists of conditions, including Sjogren's, POTS, MCAS, EDS, fibromyalgia, neuropathy, COPD, and more, noting how difficult it can be to even identify which condition is causing which symptom. A recurring theme was the emotional relief of finding community, with many expressing that hearing others' stories made them feel less alone and less like, as one member put it, 'a crazy woman.'

A myRAteam Member

You’re definitely not alone in this. A lot of people with autoimmune conditions end up having multiple overlapping disorders, even though it feels unbelievably unfair when you’re living it. The body’s immune, connective tissue, and nervous systems are all connected in complicated ways. Managing one condition is hard enough, so handling all three shows how strong and resilient you really are.

May 16
A myRAteam Member

Hi! I actually think there is a link to it! I have POTS/MCAS/hypermobility (suspected EDS, I’m working on getting diagnosed) In one of my groups for my area, we talked about how there are a lot of different puzzle pieces for all of us, and sometimes it’s more common to have both an autoimmune and EDS (a perfect fit to add to your “puzzle.”) I don’t know if it’s necessarily considered a comorbidity but it is definitely becoming more likely to have both. I can’t speak to your other disorders, but I’m wondering if there’s a similar way of thinking for those as well. I’m interested in genetics so I’m wondering what part that plays in everything too. Sending all the good vibes your way! That’s a lot to manage and deal with.

May 16
myRAteam

What a journey you've been on — and that "trifecta" is genuinely a lot to process, both physically and emotionally. You're not alone in wondering how so much can land on one person.

When it comes to seronegative RA specifically, it's worth knowing that it accounts for only about 20% of RA cases, making it less common than Show Full Answer

What a journey you've been on — and that "trifecta" is genuinely a lot to process, both physically and emotionally. You're not alone in wondering how so much can land on one person.

When it comes to seronegative RA specifically, it's worth knowing that it accounts for only about 20% of RA cases, making it less common than seropositive RA. So yes, you're right that it's the rarer form! Many myRAteam members do find themselves managing more than just RA. It's actually quite common for people with RA to have additional conditions alongside it. Living with multiple complex conditions at once can feel isolating, but many others truly understand that experience.

A few things worth keeping in mind with seronegative RA specifically:

- It can be harder to diagnose since there's no clear biomarker
- Some people initially diagnosed with seronegative RA may receive additional or revised diagnoses over time
- Symptoms and disease activity can shift, so staying closely connected with your rheumatologist is really important

Managing multiple conditions means your care team really needs the full picture. Making sure all your specialists communicate with each other can make a big difference in getting the most coordinated care possible. đź’›

May 15
A myRAteam Member

I have RA, Fibromyalgia, Spinal Stenosis, Osteoarthritis, Barretts Esophagus and neuropathy. I rarely know what issue is causing which discomfort. Its all very frustrating, but I wish you the best in managing your issues and know that you are NOT alone.

4 days ago
A myRAteam Member

Zero-negative RA, Osteoarthritis, Osteopenia and IBS.

My family starts conversations by asking me “What now?”. 🙄

May 27

Related Questions

View All

How many if you with RA have IBS?

A myRAteam Member asked a question đź’­
Utah
June 8

Has anyone experience gynae issues ?

A myRAteam Member asked a question đź’­
Liverpool, UK
July 27

How many of you are diagnosed with Sero Negative RA?

A myRAteam Member asked a question đź’­
Omaha, NE
March 8, 2015

Can You Get Disability Benefits With RA?
When Should You Stop Working if You Have RA?
Are you living with more than rheumatoid arthritis?