What to Do When You Can’t Access a Rheumatologist Locally
Last week, I received two emails that got me thinking about this topic – one was looking for care for their daughter who was in need of a pediatric rheumatologist, and the other looking for advice since they couldn’t find a local rheumatologist who was willing to see them for fibromyalgia.
Not just as a rheumatologist but a parent and a patient myself, getting access to specialty care, particularly rheumatology care, can be frustrating, *especially* for certain conditions (fibromyalgia comes to mind, and anything, absolutely anything in the pediatric rheumatology world – we need more of these specialists!) and *especially* in more rural areas (we’re not immune to this in busier cities, though). It can be frustrating to deal with long waits, a long drive to the nearest specialist, or in some cases like fibromyalgia, the decision of some practices and hospital systems to outright refuse to see those diagnoses.
So, what can be done when you can’t reach a rheumatologist to get or confirm a diagnosis? What about long-term follow-up? Let’s talk through some strategies that can help bridge the gap. Keep in mind… this isn’t for everyone and every situation, but I hope some of the advice here helps some.
1. Telemedicine: Good, But Not Perfect
Telemedicine (think video visits with your doctor) has exploded in recent years, and it’s been incredibly valuable for rheumatology along with numerous other specialties (psychiatry and therapy particularly!). But here’s the catch—I strongly believe telemedicine should complement in-person care, not completely replace it. Just an example, conditions like fibromyalgia and a characteristic manifestation of psoriatic arthritis can look similar on camera, but they’ll feel very different when I’m doing a hands-on exam. Sometimes, one thorough, in-person assessment can significantly clarify the diagnosis and ensure we’re on the right treatment path. If location is your barrier, do whatever you can to get in to see someone at least one time and perhaps once a year or so thereafter, but who’s willing to follow you in the interim with telemedicine visits – this can be a gamechanger.
What I suggest: call the office and ask (people around me hear me say constantly “you don’t know until you ask”). Call a rheumatology office somewhere in travel distance, explain the situation and your location, and ask if that doctor will allow long-term follow-up with periodic in-person visits. Most private offices, I’d wager, will accommodate you (hospital systems or academic hospitals are far less likely to commit to something like this but it’ll depend office to office.)
The downside, here’s something else to consider: as of writing this in early March 2025, the future of telemedicine faces uncertainty. There’s a waiver allowing widespread telemedicine access that’s set to expire at the end of this month unless Congress acts to extend it. We strongly hope they extend it because, despite its imperfections, telemedicine is genuinely helpful and necessary.
2. Educate and Empower Yourself
What can you do on your own, with or without access to a physician to guide you? Knowledge is power, especially when navigating chronic and autoimmune illness. Focus on reliable resources – here are some of my favorites, but of course the specific that makes sense for you depends on what we’re dealing with condition-wise.
- National Fibromyalgia Association (NFA): Excellent for patient education, research updates, and community support.
- Arthritis Foundation: Great webinars and self-management resources for various arthritis conditions.
- CreakyJoints: A patient-led nonprofit organization offering articles, disease tracking tools, and a strong community forum.
- The Lupus Foundation of America: Comprehensive resources for lupus patients, including symptom tracking, treatment guidance, and advocacy efforts.
- Hop-Step (lupuspregnancy.org): **A favorite of mine and a mandatory read for any lupus patient or supporting family member when thinking about or going through pregnancy.
- American College of Rheumatology (ACR): Provides evidence-based guidelines, patient-friendly education, and updates on the latest rheumatology research.
- PatientsLikeMe: An online community for sharing experiences. However, be cautious: this was acquired by Optum a few years back, i.e. part of UnitedHealth Group (UHC). While it’s helpful, be mindful of privacy concerns.
- Blogs: Shameless plug: my blog. Physicians and other professionals often share information and conservative treatments that we can apply at home to help control symptoms and improve quality of life.
3. Connect with Support Groups and Communities
Managing a chronic illness can feel isolating. Connecting with others facing similar issues can be therapeutic and informative. Whether through online forums, local meet-ups, or virtual support groups, hearing from others who “get it” makes a big difference in emotional well-being and practical advice. My advice here is to search your local community on Facebook, Reddit, and other social media outlets to find these. Look at professional societies for guidance on where to find these.
4. Lean on Your Primary Care Doctor
When specialist access is limited, your primary care physician becomes even more vital. Regular visits can help manage initial symptoms, adjust medications promptly, and, one that might not always be obvious, they can expedite referrals to specialists by calling (this usually helps, rarely doesn’t – if I get a call from a primary care doctor saying they’re worried about their patient, I’ll do whatever I can to work them into the schedule or in my lunch hour). Developing a strong partnership with your primary care doctor ensures better continuity and quality of care, especially for new or acute rheumatologic issues that are critical to get taken care of quickly.
I’m told more than once a week that someone might not trust or can’t rely on their primary doctor, whether it be they’re too busy, they might not know how to help, or, sometimes, there’s a personality conflict that affects that trust. We don’t always have a menu of primary providers to choose from especially in the rural areas, but if you have the option to look around, consider setting an appointment up with another primary doctor if you’re not having a good relationship with your own. This is obviously harder to do with an HMO plan that requires you to “set” a provider ahead of time, but those outside of those plans, like PPOs, can request second opinions with other primary doctors easily without “leaving” your existing doctor. That said, if you like the new one, it’s best to let the old one know you’re switching practices and to only maintain care at one moving forward, not multiple providers (too many cooks in the kitchen is the expression).
Final Thoughts
While access to rheumatology specialists can feel limited sometimes, remember there’s still a lot you can do to manage your condition effectively. Combining telemedicine (hopefully ongoing!), education and awareness, and working closely with your primary care doctor can significantly improve your daily life.