Finding Support & Help
A list of providers covered by your insurance company says nothing about the quality of care you will receive for treating your fibromyalgia. Even looking up a provider’s rating on various websites tells you little about how they will treat you. Yet finding healthcare providers who are willing to work with you to get your symptoms under control is key.
Fibromyalgia is not like most medical conditions. The symptoms are numerous and there are many body systems affected by this disease. It’s a complex illness and treating it may require more than one physician as well as other providers such as physical therapists and counselors. So how do you go about getting help?
Primary Care, Pain Specialist, or Rheumatologist?
There are pros and cons to seeing each one of these medical specialties for treatment of your fibromyalgia. In general, a primary care physician (or PCP) who will take on the job of treating your fibromyalgia is ideal because this person is already taking care of your other health issues. However, you may require a specialist who has more time and experience than your PCP has to offer, especially if you are newly diagnosed.
Pain Specialists
Pros:
- These physicians have experience with all of the drug and nondrug therapies that may be used to treat pain.
- They likely have a working relationship with other important healthcare resources, such as physical therapists and counselors.
- If you are currently taking an opioid, this specialist might be more willing to work with you. Also, they may have a few creative approaches that may help wean you off opioids in a safe, controlled manner. However, don’t be surprised if they have a rule of no opioids on the first date, i.e., first visit.
Cons:
- The weight time to get in to see them can be lengthy.
- Your insurance company may require a referral (probably from your PCP).
- The number of pain specialists is extremely small and some communities may not have any.
- Due to the limited number of pain doctors, they may employ a team of nurse practitioners and physician assistants. As a result, you may not see the same provider each visit.
- A pain specialist will not take care of your other health needs, nor will they do general check-ups.You still need your PCP for this.
- They may want to perform invasive and expensive procedures, especially if they are in a pain clinic setting.
Primary Care Physicians (PCPs)
Pros:
- Chances are, you already have a working relationship with this doctor, and it may be easier to work with them rather than starting over with someone new.
- PCPs are covered by insurance, even if you have a co-pay. Overall, they are the least costly option.
- If you give your PCP a chance, they may be willing to work with you on getting your fibromyalgia symptoms under control. If after a few visits you don’t get better (or you get worse), your PCP will be the one who writes the referral to a specialist. Also, if your insurance requires an explanation for the referral, they will be able to document that they tried.
- Most specialists will want to refer you back to your PCP for ongoing care. So, if your fibromyalgia gets worse, your PCP will have experience working with your specialist.
- You need to see this doctor for all of your other medical needs and they usually can offer good referrals to other providers, such as pain specialists, physical therapists, counselors, and rheumatologists … depending upon your needs.
Cons:
- PCPs must know about so many aspects of medicine, they cannot be expected to be an expert on fibromyalgia, especially given its complexity.
- They tend to be swamped, with the typical visit being 10 minutes. Unless they have a specific interest in fibromyalgia, they may not have the time to fully treat this disease.
- Even if you provide your PCP with an article about a new treatment you want to try, they may not have the time to read it.
Rheumatologists
Pros:
- If you have arthritis or any other rheumatic disease, a rheumatologist may be a good option for you because these other diseases tend to make the fibromyalgia worse.
- The rheumatology journals have featured research articles on fibromyalgia since the late 1980s. A rheumatologist should recognize all your symptoms and know how to treat them.
- Rheumatologists often work with physical therapists because all the diseases that they treat are musculoskeletal in nature. In addition, most of their patients are in pain and often require counseling to help cope with the discomfort.
Cons:
- The type of pain caused by fibromyalgia, along with the various medications used to treat it, differs substantially from arthritis and related diseases.
- Just because a rheumatologist sees a lot of patients in pain, it doesn’t mean that they want to treat the pain of fibromyalgia. In fact, a large percentage would prefer to not see fibromyalgia patients.
- Most rheumatologists went into this field because they were fascinated by the science surrounding autoimmune diseases, such as rheumatoid arthritis. Fibromyalgia is not an auto-immune disease, and chances are, it doesn’t pique a rheumatologist’s interest
Choosing a Physician
Regardless of what type of physician you chose to see (PCP, pain specialist, rheumatologist, or another specialty), you still have to find one. Several fibromyalgia experts offer their suggestions on making the best of your first few visits with a new doctor, all compiled into an article: Finding a Quality Physician.
Selecting a Physical Therapist
A physical therapist can reduce your pain and improve your function if they are skilled at treating myofascial trigger points or MTPs. Remember, these are the rock-hard knotted areas in your muscles that radiate pain and restrict your movement. Studies show that fibromyalgia patients can identify most of their MTPs, but the real trick is finding a physical therapist who is good at releasing these tight knots.
Ideally, your primary care or fibromyalgia doctor will refer you to a good physical therapist who knows how to treat MTPs. Once you get a name, call your insurance company to find out if this therapist will be covered and for how many visits. If the therapist is not covered, get a list of those who are and find out what your co-pay will be for physical therapy.
Whether you use a physical therapist referred by your doctor or another one from a list provided by your insurance company, call to ask the following questions:
- How long have you been in practice? If they say 30 years, they may or may not be up to date on the newer techniques for treating MTPs.
- What is your treatment approach to fibromyalgia? You don’t want someone who solely promotes a fitness program.
- What techniques do you use to release MTPs?
- After the initial visit for assessment, will you be able to give me an estimate of the number of visits I might need? This is important to ask because insurance companies will limit the number of visits
- If I go to you for treatment of my MTPs, will you also teach me a home program? You may have to ask this question during the first visit.
Once you have identified a physical therapist that you feel can help you, ask your doctor to send over the referral. Chances are, you will not be able to book any appointments with a physical therapist until they receive the referral, and there is a good reason for this. A physical therapist may have an appointment opening within a week, but your doctor may take longer to write up the referral. Until the therapist has the referral, they can’t treat you (unless you want to bypass your insurance).
Connecting with Others
Talking to fibromyalgia patients is often helpful, especially for those newly diagnosed. It’s reassuring to converse with other patients to validate that you are not going crazy and that your symptoms are real.
Support groups may be in person or via Zoom. You can usually find out if there is a group in your town by a quick Internet search. One website to check is www.meetup.com.
For online communities, please check the privacy policies because some will share your information with other “partners” such as pharmaceutical companies, insurers, and other third parties. While some of these “sharing” platforms seem great, the third-party companies are just viewing you as a potential marketing commodity. In fact, this is true for any online support or website community who collaborates with so-called partners.
Rest assured that if you join AFSA (membership is free), we do not partner with anyone. We solely use your name and email to send you updates on projects funded, as well as new research and treatment news posted to our website.
Another way to connect with others is through our Facebook page. We post daily on common issues that fibromyalgia patients face, and sometimes, with a touch of humor to lighten your day. We welcome you to become a member of AFSA and like us on Facebook.