Building a Care Team

Being chronically ill means that doctor’s appointments are routine and frequent. It also likely means you have several different types of doctors you see. Finding and building a care team can sometimes feel like assembling the avengers.

You have to find the specialists that are in your insurance plan, have accessible offices, flexible hours, and are accepting new patients. It’s an added bonus if you like them and can work with them well. If your doctor leaves the practice or your insurance changes, the process starts over.

My doctors

I routinely see my primary care physician, a rheumatologist, gastroenterologist, orthopedic spine specialist, osteopathic orthopedic doctor, and a therapist. I include a therapist here because dealing with chronic pain and fatigue is something that can be made easier with proper mental health care.

My ophthalmologist and dentist are not listed here because I only see them as part of my annual healthcare. AxSpA can cause uveitis, so regular eye exams are important to maintain. If you develop uveitis, having an ophthalmologist you visit regularly will be crucial.

The types of doctors and the frequency in which you visit them will vary with the severity of your AxSpA. A rheumatologist is an essential piece of the puzzle because their specialty is in autoimmune conditions like AxSpA.

Primary care physicians can help manage general health concerns and treat short term illnesses. Different primary care physicians may have knowledge of AxSpA and suggestions for treatment options in addition to your rheumatologist. For example, my primary care physician suggested certain anti-inflammatory medicines to use in conjunction with biologics suggested by my rheumatologist.

Injuries, surgeries, and AxSpa

AxSpA can come with or cause spinal injuries and joint injuries. Orthopedic doctors focused on the spine and other joints can help treat these injuries and may suggest surgery if necessary. They can also provide smaller procedures that help with the pain caused by AxSpA.

Trigger point injections and steroid injections (usually epidural steroid injections) can help to relieve pain brought on by AxSpA. There are plenty of other options that orthopedic doctors have solutions and treatment options for.

If other symptoms of AxSpA, like gastrointestinal problems or psoriasis, become an issue, doctors focused on those areas specifically can be very helpful. If these symptoms are milder, the primary care physician can help out. A therapist can also be extremely helpful for managing the frustration from living with chronic pain. There are therapists who specialize in helping those with chronic pain, but just having someone to talk to makes a big difference.

Communication

Once you have a good collection of doctors, it is important to communicate each of their treatments to your other doctors. Thankfully most healthcare systems have technology that allows your medical chart to be accessed by other doctors in the system.

Otherwise, it is important to keep your medical and pharmacological records updated. Your healthcare team is there to support you and create the best treatment plan possible. Finding the right doctors may take some time, but it is important to have healthcare providers you feel comfortable with.