Reprinted with the kind permission of Cort Johnson and Health Rising.
Two of the biggest questions facing people with fibromyalgia are 1) will they get better and 2) which kinds of doctors give them the best chance of doing so.
Health Rising recently did two polls/surveys in an attempt to answer these questions. The first one – a series of questions regarding prognosis – was answered by over 900 people. The second one asked which doctor types were the most effective and was answered by about 200 people. (Both are still open; please feel free to take them if you haven't yet.)
Fibromyalgia: Does it Get Better?
The Fibromyalgia Doctor’s Poll: What Kinds of Doctors Are Best?
A couple of things to think about.
The people who got better and were able to move on with their lives probably weren't taking these polls and surveys. Those people still searching for answers probably were. The duration question indicated that most people taking the survey (65%) had had FM for 11 years or more, and thirty percent had had it for over 20 years. That suggests that we're probably looking at the worst off; i.e. your results, particularly if you haven't had FM for long, may vary.
The lack of statistical analysis makes the figures hard to interpret. Statistical analyses would be able to tell us which comparisons were statistically significant. Since we don’t have that, it's hard to say with confidence that neurologists, say, really are worse at treating FM patients than rheumatologists.
This is an online survey put together by a patient and has no pretensions to rigor. It's for general purposes only.
FM Patients Get Around
The polls indicated that FM patients are certainly trying to get better. Because family doctors are usually the first doctors seen for any kind of condition, it was no surprise that more people with fibromyalgia saw general practitioners (GPs) than any other type of doctor. Most of them did not stop there though.
Almost as many FM patients had seen rheumatologists as GPs and many (@100-135) had seen FM specialists or neurologists, physiatrists, pain clinic doctors, osteopaths, functional medicine specialists, Eastern practitioners, etc. Only 2% of the poll takers had seen just one doctor and just 11% had seen two. Over fifty percent had seen at least six doctors…They are really trying.
Most people reported they did eventually find a good doctor. Of the 241 people who filled out the second survey, about 75% (180) reported that they had found a good doctor. It wasn't easy; it took over 3 years for most of them (68%) and over 10 years for a quarter of them, but it did happen.
Unfortunately, doing so didn’t necessarily translate into health. There's clearly a difference between finding a good doctor and finding a doctor who can really help. Doctors can be knowledgeable, they can try hard, they can validate their patients’ suffering, and still be limited in their ability to help. As well, most people reported their pain, fatigue and sleep issues had gotten worse over time and few people were satisfied with the treatment options available to them. Seventy-nine percent reported only low satisfaction with treatments available to them. Only 2% reported high satisfaction.
The Best Doctors to See
The first thing any patient probably wants to know is what kind of doctor can really bring it – really improve their health. The survey poll suggested that your chances of being "really helped" are not particularly good with any type of doctor. This is not to say it didn't happen. Some FM patients were really helped by all of these doctors, but it didn’t commonly occur.
One type of doctor did stand out. The numbers for functional medicine specialists were not great but were appreciably better than any other doctor type. Almost 25% of people seeing functional medicine and/or alternative health MDs said they were "really helped."
Surprisingly, FM specialists weren't rated any more effective than general practitioners. Even more surprisingly, pain specialists – physiatrists – didn't do any better than FM specialists or general practitioners – and, in fact, may have been worse.
If this survey is accurate, the same is true for pain clinics; people going to pain clinics appeared to be helped less than people seeing GPs, FM specialists or functional medicine doctors. (This could, however, be because people seeing pain specialists or going to special pain clinics may have more severe and less easily treated pain.)
As expected, rheumatologists, the specialty most associated with fibromyalgia, did not fare well. Anecdotal reports of rheumatologists with little or no interest in FM abound. Many people had tried rheumatologists, but only 16% reported that their health had really improved. Sixty-eight percent reported that seeing a rheumatologist had no effect or made them worse.
Many doctors and researchers think FM is mostly a central nervous system disease, and few reports of dramatic improvement were seen with bodyworkers, osteopaths and physical therapists, but they were also fairly effective at providing at least modest relief (40%, 33% and 30%).
The least successful type of doctor? Neurologists. Only 28% of FM patients reported that they were really or somewhat helped by neurologists; 72% said they either weren't helped or were made worse by seeing a neurologist.
This survey suggests that you might want to try functional and alternative medicine specialists first and stay away from rheumatologists, neurologists and oddly enough, pain clinic doctors.
One good note. Negative outcomes were fairly rare; in general, less than 15% of patients reported being made worse by any doctor type. Physical therapists and body workers – who were presumably untrained in the more gentle techniques needed to be effective in FM – had the highest negative reports (26%).
Feeling Validated During Visit
There's nothing like going to a doctor for help and having your symptoms dismissed. Now that fibromyalgia has three FDA approved drugs and is a well-known disease, one might expect most doctors to take the disease seriously and indeed many do. Over fifty percent of FM patients felt validated or somewhat validated by most doctors. That is surely an improvement.
Three types of doctors scored lower marks. That only 22% of FM patients visiting rheumatologists – the medical specialty associated with FM- felt really validated and understood – was disappointing but not particularly surprising. (It wasn't that long ago that rheumatologists were still being polled at their scientific conferences as to whether FM was a real disease or not.) Remarkably, even general practitioners did better at making their FM patients feel validated than rheumatologists.
The relatively low marks given to physiatrists and pain clinic doctors were surprising. One might have thought these doctors would have been most effective at validating their patients’ complaints. It's not that these doctors were invariably bad; more patients felt validated while seeing these doctors than not, but a greater percentage of patients reported feeling invalidated by these doctors (Phys – 33%, Pain clinic – 29%). Physiatrists – doctors specifically trained to relieve pain – had the lowest rate of validating their patients’ symptoms (42%) of any doctor type – a completely unexpected finding.
That neither type of doctor did particularly well regarding treatment end results could suggest that they are just not up to date on FM – although why that would be is unclear. (With only 70 and 97 responses to the survey for these doctors, it’s possible we got a skewed result as well.)
If the first survey question didn't find FM specialists particularly effective at treating FM, at least most FM patients (76%) felt more or less understood during their visit with them, with only 10% feeling their symptoms were at least somewhat dismissed. Functional medicine or alternative health MDs, Eastern medicine practitioners and bodyworkers also scored very high at validating their patients’ symptoms.
More FM patients felt validated than not validated for every doctor type but neurologists, and rheumatologists scored the lowest on the validation index. FM specialists, functional medicine/alternative health MDs, Eastern medicine practitioners and bodyworkers scored high on validating their patients’ health problems.
FM patients didn’t have a particularly high opinion of any doctor's knowledge of their illness. In fact, only one doctor type – FM specialists – were rated as "very knowledgeable" by more than 30% of the respondents. Similarly, only three doctor types were rated to be at least "somewhat knowledgeable" by more than 50% of the respondents. FM specialists were the clear winner here with 71% of those visiting them feeling that they were at least somewhat knowledgeable.
Physiatrists, pain clinic doctors and neurologists once again lead from the bottom with only about 10% believing they were very knowledgeable about the disease. (Even psychologists were rated better – although the differences might not have been statistically different.)
FM specialists, not surprisingly, lead the pack here, but a surprising percentage of patients did not feel that they were "very knowledgeable" on the subject. Physiatrists, pain clinic doctors, neurologists, psychologists and general practitioners were deemed the least knowledgeable.
Despite all the advertising around drugs like Lyrica, opioid pain-killers are still the drug of choice for many people with FM. (Regarding questions about whether Tramadol should have been included on the opioid pain-killer list, according to Wikipedia, WebMD and other sites, Tramadol is a synthetic opioid drug that is milder and poses less risks than other opioid painkillers but is structurally similar to them.)
NSAIDS came a distant second followed by other types of antidepressants. Only after Flexeril did the FDA-approved drugs begin to pop up; fourteen percent of respondents were currently taking Lyrica, 13% Cymbalta and only 1% Savella. Compare that to the 40% taking an opioid pain-killer. Only 12 percent were not on any drugs.
Even fewer people reported taking low dose naltrexone (7%) or medical marijuana (9%) – a surprise given how much these options are talked about. Whether those treatments had been unsuccessful or had not been tried was unclear. Several online surveys that have found medical marijuana to be the most effective treatment in FM.
The news for three of the biggest problems in FM – pain, fatigue and sleep – suggested that the medical community is still a long ways from finding effective treatments for FM. Only 17% percent stated that their sleep had improved since getting FM, while two-thirds stated their sleep had gotten at least somewhat worse. Remarkably, almost 50% stated that their sleep had gotten worse over time with FM.
The news was similar regarding pain, fatigue and functioning. Only 4% said their pain had gotten much better while 60% said their pain had gotten somewhat or much worse. Seventy-one percent said their fatigue had gotten somewhat or much worse over time. Seventy-one percent stated their functioning had gotten worse over time.
The survey suggests that although no magic bullets exist, some doctors (FM specialists, functional medicine/alternative health MDs) may provide a better experience for FM patients than others (neurologists, rheumatologists, psychologists, pain clinic doctors (???), GPs).
The most glaring finding, however, was the low level of satisfaction that virtually all FM patients (@80%) have with the treatment options available to them.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.