Note: Ash’s Advice is written by, me, Ash, a long-time patient with ME/CFS, FMS, Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings; a series of letters to my younger self, and to anyone suffering through the “living death” that is Neuro-Immune Disease: ME/CFS, FMS, Chronic Lyme, etc.
Part 3: On Doctors
One of the most frustrating, exasperating, and occasionally, yank-your-hair-out-and-scream, aspects of having ME/CFS, FMS, and other similar neuro-immune illnesses, is finding really good doctors or medical clinics.
Ideally, you’re going to have a Primary Care Physician (PCP) who knows enough about your condition, whichever it might be, to be there for you when you have the flu or other unrelated issues, but who also understands your symptoms, your meds, and what’s going on in your body.
Most importantly, you’re also going to need a specialist in your condition, which may be a Rheumatologist, Neurologist, etc. Rarely, the specialist can also act as the PCP, but most are far too busy.
You may “acquire” other doctors along the way – unfortunately.
You will inevitably run into Type A:
They are Arrogant. And, callous, and actually fairly ignorant of your condition (although they don’t think so), and not interested in expanding their understanding.
They spend precious few minutes with you, don’t have time for your questions, and they sure don’t want your suggestions. They could care less about your feelings, and allow you very little say in your own treatment.
Like a dictator, they expect you to follow their every order to the T. They throw the standard prescriptions at you, and tell you to come back in six months.
What you’re looking for is type C:
They are Caring and Compassionate. Knowledgeable, and constantly striving to understand more about these complicated illnesses. They offer you all the various treatment options, both the standard prescriptions, “off-label” prescriptions, as well as complementary treatments such as nutritional supplements and herbs.
They look at their work with you as a true Collaboration between the two of you and other members of your healthcare team (specialists, PCP, and family members). They value your opinion, always seeking the highest quality of life for you, and are respectful of your wishes and decisions.
Or, of course, anywhere in between these two spectrums.
Even an inexperienced PCP can be okay to work with if they truly want to learn more, and are willing to learn from you & your specialist.
So, how do you find the good kind?
That’s the tough part.
It’s made even tougher because many specialists in ME/CFS & FMS don’t accept insurance at all, because they spend such long periods of time with their patients, rather than the standard 10 minutes insurance will reimburse them for.
So not only do you have to find someone near you, but they also have to accept your insurance, assuming you have any.
To start with, you can check with the doctor finder over at my friend, and fellow blogger, Patrick’s blog, Quixotic: My M.E. Blog. It’s on the right hand side.
I can’t vouch for that list, or any of the lists out there. But the second place to look is to Google the words:
CFS/FMS good doctor list
ME/CFS good doctor list
Or if Fibromyalgia is your only issue,
Fibromyalgia good doctor list
This should return a number of lists from different organizations.
If you still haven’t found anyone near you, the next place to look is on the forums. If you’ve found my blog, odds are good you’ve found forums, so ask around.
Still nothing? Then to Google you go.
I found my PCP by putting in Fibromyalgia and Virginia (my state), and sifting through the results until I found a practice that both accepted my insurance as well as said it had a special interest in FMS.
ME/CFS is my biggest problem, but there are a lot more people being diagnosed with Fibromyalgia than ME/CFS, and therefor a lot more doctors with experience with Fibromyalgia, and you are far more likely to find one.
And yes, as you might suspect, it took a very long time, cross-checking doctors with my insurance company to be sure they matched up.
Interviewing Your Doctor
When you go to your potential new doctor, keep in mind that you are hiring this person for the most important job there is: keeping you as healthy and active as possible!
There are 2 kinds of first visits: you’ve been diagnosed & are being treated but want/need a new doctor, or, you think you have ME/CFS or FMS, and want to be evaluated.
Unless the doctor you are seeing is one of the really big names in the ME/CFS or FMS world, and you are desperate to be seen by them, then keep in mind that you are interviewing them for a job, not just a patient seeing them for an evaluation.
If your personalities clash, or you don’t like their style, and there are other doctor-candidates in your area, then go ahead and schedule the follow-up (unless they’re truly awful) but before then, try to get in to your next option.
Do not be afraid to be bold and speak your mind, even at the first visit, especially if you’ve been sick a while and so have a “history.” How they respond will tell you how involved in treatment decisions you will be allowed to be as a patient.
When I interviewed my PCP, I took her a printed overview of my illness – what I was diagnosed with and when – as well as a list of my meds, and some of my records. I explained the severity of my symptoms, and that I am a “very, very complicated patient.”
As we talked through it, I really liked her style, how closely she listened, and she clearly understood that I was auditioning her for a job. She was young, but very interested in FMS, and very interested in expanding her knowledge of ME/CFS.
Then I dropped the bombshell: my health insurance was changing, so I no longer had coverage for my Rheumatologist or Pain Management Specialist. I needed someone to prescribe all my meds, including my pain meds (many doctors simply won’t write those at all). I would continue to see my LLMD, but not nearly as often.
I looked her in the eye and just asked her flat out, requesting she please be truthful with me, “Do you have the time and interest in taking on such a complicated patient?”
She looked straight back at me and responded, “Absolutely!”
I got very, very, lucky – she is definitely Type C. I see her monthly, and things have gotten even more complicated, but she has continued to do a fantastic job with a very “high maintenance” patient. She only has one other patient with ME/CFS, but is one of her practice’s specialists in Fibromyalgia.
The First Visit – the Evaluation
Your first visit to a new ME/CFS, or FMS, specialist for an evaluation should be long – a half hour at a bare minimum.
Many of the best spend an hour or even two or three on the first visit, and at least 20 minutes on follow-ups, with 30 minutes to an hour being common. There are often reams of paperwork to fill out in the beginning about the onset of your illness, and usually, at least a checklist before each follow-up.
Many specialists will order lots of lab tests, and sometimes x-rays, MRI’s, CT’s, etc, so don’t be surprised. The labs can be extensive. You don’t want to know what my record is for the number of tubes of blood drawn at one time. Just relax and think of something else.
I know a number of patients who drive (or have someone drive them) hours to appointments with the best ME/CFS doctors out there, and they are often offered treatments that other patients aren’t.
On the other hand, I know patients who got diagnosed by a Type A doctor, and who are still seeing them, still taking pretty much the same meds, years later, when there are new meds out. Sometimes they don’t have other options, but sometimes they don’t realize how different doctors can be, having never experienced a doctor anywhere approaching Type C.
It’s my suggestion that unless you have a very good partnership with your doctor, and you feel you are receiving truly excellent care and being treated with respect, that you do the work of looking for someone else, and just get a second opinion on your case.
It couldn’t hurt at all, and there might be things a different doctor would notice that the first one missed – and different treatment options.
And that might make all the difference in the world.
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