Fibromyalgia: the Best Doctors and Getting Better - the Poll Results

Discussion in 'General' started by Cort, Mar 13, 2017.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Two of the biggest questions facing people with fibromyalgia are will they get better and 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.)
    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.

    FM-Duration.jpg

    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 (GP's) than any other type of doctor. Most of them did not stop there though.

    #-of-Doctors-Seen.jpg

    Almost as many FM patients had seen rheumatologists as GP's 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 found 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 we’ll 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.

    Treatment Options satisfaction.JPG

    The Best Doctors to See

    Effectiveness

    Practitioners - Effectiveness.JPG (Click to bring up results) 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 MD's 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 GP's, 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

    Doctor Types - Validation.JPG 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 validated, 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 MD's, eastern medicine practitioners and bodyworkers also scored very high at validating their patients symptoms.

    Takeaway - 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 MD's, eastern medicine practitioners and bodyworkers scored high on validating their patients’ health problems.

    Knowledge

    Practitioners - Knowledge.JPG 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.)

    Takeaway - 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.

    Treating Pain

    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 opioid pain-killer list, according to Wikipedia, WebMD and other sites Tramadol is a synthetic opioid drug will is milder and poses less risks than other opioid painkillers but is structurally similar to them.)

    FM-treatments.jpg 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 one percent 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. 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.

    Progress

    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.

    Pain-over-Time.jpg
    Functioning-FM.jpg
    Sleep-FM.jpg

    Conclusions

    The survey suggests although no magic bullets exist some doctors (FM specialists, functional medicine/alternative health MD's) may provide a better experience for FM patients than others (neurologists, rheumatologists, psychologists, pain clinic doctors (???), GP's).

    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.

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    Last edited: Mar 13, 2017
  2. Vicki

    Vicki Member

    Great report of the surveys, Cort, especially pointing out that those who have recovered probably didn't do the survey(s).

    Personally, I find the best path is to find an understanding, supportive Primary Care Physician (or GP in Australia) AND ensure you're educated, proactive and in tune with your own body. Be willing to experiment with drugs, doctors or alternative therapists, but don't make yourself bankrupt in the process. Also ensure you do plenty of trial and error with diet, activity/movement and sleep habits. (e.g. now I'm not working I sleep better from 1.00am to 9.00am with the occasional catnap in the afternoon).

    If I'm tired (aka exhausted) I stop immediately and rest. I take life one day at a time and try to live each day Mindfully. I never ever attempt to multitask (like I did when working full-time).

    I keep my life very simple - mentally, physically and spiritually.

    Sometimes, by sheer luck, you strike upon a way of living, or treatment/diet, that makes a positive difference (with no guidance from a qualified practitioner).

    Getting deep restful restorative sleep has a profound effect on many people - FM, CFS sufferers AND normal healthy people.

    Eating the right food for you, (which may not work for someone else), and drinking plenty of fresh, pure water to keep the tissues well hydrated (especially for back pain) makes a difference.

    There comes a time (chronic pain since 1980 for me), when enough is enough. I'm not interested in seeing any more new specialists. They cost too much. Medicare doesn't cover the full cost of a consultation and to be honest, most of the time I know more about my various health problems than they do.
     
    Last edited by a moderator: Mar 14, 2017
    Cort and Lynn-Z like this.
  3. Lynn-Z

    Lynn-Z New Member

    Vicki, (I hope this is the right place to 'reply'--not familiar with this format)

    I am right there with you on all accounts. Evidently Medicare was written to finish us off. Virtually everything I need, whether CFS/ME/?? related or the general 'stuff' everyone needs--and more often as a senior--is either not allowed or barely covered. I'm alone now and cannot rest or care for my body as needed for all these conditions so going down the tube is putting it mildly.

    It's frustrating to be this age in the new medical world of today in which the local clinics are being manned by new graduates that don't seem to know common sense good medicine let alone how to deal with complex chronic illnesses.

    I can no longer tolerate "explaining my multiple conditions" only to become labeled a hypochondriac because 'they cannot deal'. There is not one good doctor in this area that will accept a new medicare patient--so rather than beg for what I know will work, with inadequate doctors--I've given up.

    Neither Medicare or insurance companies are willing to allocate appropriate doctor-patient time to properly diagnosis and/or treat complex chronic illness. Fighting the good fight requires too much $$ and energy for me.
     
    Last edited by a moderator: Mar 14, 2017
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks for your affirming post Vickie....You've done a great job at adapting to FM/ME/CFS in such a way as to have a quality life...

    I particularly like the idea of keeping life simple - one thing at a time - and really agree not to bankrupt yourself looking for a cure.

    Instead get very simple and pace, pace, pace.
     
    Last edited: Mar 14, 2017
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    If we can get more studies and clinical trials Medicare should pay for more but they will probably never pay for the more alternative treatments that this survey at least suggests might be helpful.

    The problem with the functional medicine doctors are that their testing is often very expensive and so are their treatment regimens...
     
  6. Not dead yet!

    Not dead yet! Active Member

    I noticed the alternative bent also. One of the criticisms of such systems is that the expense changes the perception of usefulness. A well designed study allowing FM patients to try various types of health practitioners at no cost might remove some of the psychological blinders we wear. As in, "I have to love the Ferrari, it was so expensive, even if I can't sit in it and stretch out."

    Personally I think insurance should help pay for all bodywork, physical therapy, or any other kind. There is a simple principle here... blood circulation alone should justify it. You take a person who's tired and in pain and without exercise (which makes them worse sometimes and therefore it is a risk for them), you improve their circulation. That should be a total duh to basic health principles.

    Similarly it blows my mind that acupuncturists in the USA can use needles, but in most states, they can't prescribe the special tea that is meant to "balance" your particular energy state. While that sounds hoidy-toidy, let me explain it like this: You make a tea from a variety of plant and mineral materials (and even some bugs, yum). It provides things that you don't get in your diet (haven't eaten any bugs lately, personally, or rocks). Possibly your body uses these "variety" of materials to make up some dietary (or disease, or soil depletion) deficiency.

    We tell people to "eat a variety" of things to keep their diet "balanced" but when the Chinese do it, we scoff and tell them they can't do it and get reimbursed. I'm not sure I trust some Public Health Policy suit more than I trust an old man in Chinatown who has been healing people all his life. But I might be superstitious and irrational. The skeptics tell me I am. :rolleyes:

    The reason I don't think these things happen is that - when it became enforced for pharmaco's to pay or gift doctors in return for prescribing their drugs - they took a look at who was listed in "accounts receivable" and noticed... hey it's mostly the insurers... so now there's a system of discounts (and occasionally they get caught giving kickbacks) which is pretty much the same thing and has given us the modern "formulary." The pharmacies get in on the action by seeking discounts too. So one month you get generic X from pharmaco 1, and next month it's pharmaco 2. Depends who your buddy is this month.

    You also can't ever do a double blind placebo controlled study on a massage or chiropractic care. How will you give a placebo massage? Without the masseuse knowing it? :confused:

    Needless to say, a system that obviates pharmaceuticals is not often paid for, even when the benefits are amazingly obvious. I really would like to see a study that pays for a cohort of new FM patients care for two years and the only catch is that you have to see all these practitioners on their schedule so you can compare them. Would be fascinating to see the results.
     
  7. Vicki

    Vicki Member

    I have top private health insurance in Australia (which increases each year way beyond the annual increase in my Government Disability Pension to cover it... far into the future) and it only pays for in-hospital procedures & stays. I also have what is called 'Extras' in that private health insurance, but have had to reduce the Extras cover from 'comprehensive' to 'basic' since I'm no longer working.

    My point here is that I pay for the best private health insurance, and between it and the Government Medicare rebates, I'm still out of pocket.
    From my old bills and receipts, I calculate it has cost $175,000 in the last 20+ years for health consultations, tests, X-rays, u/sounds, MRIs and 11 surgeries. Despite having top private health insurance and Medicare, I am still out of pocket approx. $59,000 (of that total). I'm at a stage in life when I can't afford any more.

    I've recently started with a highly respected and innovative physiotherapist for a few sessions this year to update my old exercise regime for my spine (2 spinal surgeries) and shoulder strength. My private health pays for physio up to 70% of the consult fee (to a total of $600 per annum), so I figure I can find the 30% gap payment for about 6-7 visits this year. But last month was an expensive month bill-wise and I haven't got the $25.50 spare, so it'll have to wait until next month so visit him. This is a prime example of where the Government Medicare system should step in and cover my $25.50 gap so I could attend an essential physio session this month. If my Private Health Insurance can pay 70%, why can't the Government Medicare pay the other 30%?

    As a chronic illness sufferer with multiple health conditions, my doctor has to fill out a Health Care Plan each year specifying what therapists (podiatry, physio, dietitian and so on) I should attend (for the Government), but Medicare only pays for 50% of any visit specified on this Health Care Plan. I can't afford the 50% gap, so I (literally) can't afford to follow the prescribed annual 'Health Care Plan' by the Government.

    This is a perfect example of how poor the Australian Government Medicare system works.

    They recommend 'xyz' for me (as a chronic illness sufferer & with multiple surgeries in the past), but can't understand/accept that I can't afford the 50% gap. I say, don't tell me what I should or shouldn't do, unless you (Government OR Private Health Insurance Company) are willing to pay for it.

    I'm often tired after waking and am always stiff and with a painful back & hips in the mornings and I spend time stretching and a few exercises to help me able to bend and move easily. It takes me 2-3 hours of sitting, standing and moving around to reach a point of 'ready for the day'.

    I live my life in the afternoons.

    I need practitioners who understand my activity and routine to reach my energy envelope (which is usually after midday). I only want friends who fit in with my routine and energy envelope. Am I selfish and self-centred? Sure am. I've got to be to survive after all these years of pain, fatigue and other symptoms. I need others to be understanding of the waxing and waning of symptoms and not accuse me of exaggerating just because I went for a long walk a week ago and can't go out today.

    I need to get public transport outside of peak hour wherever possible, so I'm guaranteed a seat and minimal contact with other highly perfumed bodies as I have MCS (which is worse when I'm really symptomatic with pain I might add).

    I fully understand your position, Lynn. I haven't got the energy or money any more either (especially if that money spent does me no good, or at worst, makes my symptoms worse and my credit card reaches a point I can't pay off).

    Young(ish) doctors don't even seem to understand the basics of healing. They seem to know little about the Mind/Body connection. They're not taught to have Compassion (although some Health practitioners are naturally Compassionate). They assume that as they're highly qualified they know more than you. I feel like telling some young Doctors to 'get off their high horse' and listen to what I'm saying. Are some doctors deaf? Some doctors don't even have the manners to look you in the eye and admit "they don't know".

    Dietary restrictions applying to your personal situation are incomprehensible to most health care professionals. They have no concept of how, what you breathe and what goes in your mouth, can have such a detrimental effect on your health and energy.

    Unless you're screaming in agony, they don't comprehend how much pain you're in. After 36 years I can be in excruciating pain (and even pass out), but sit quietly in an E.R. of the local hospital waiting to be attended. I can withstand very painful procedures because I'm used to severe pain, doesn't mean I like it, or don't feel every second of that pain. I'm used to keeping my mouth shut as it takes too much energy to talk, yell or scream. I do scream inside my body though. Even bone, joint or soft tissue 'screams' in every bad episode I go through. I 'scream' in silence nowadays though.

    I'm done with 'dying' every time I have a severe episode. I want to 'live' the best I can with what I've got.....under my terms and rules (born out of 36 years of experience, study & research).

    And to everyone else reading this post.......

    I now have a typed 3-4 page summary I carry everywhere. It lists everything a doctor, specialist, ambulance driver, E.R room physician needs to know about me, my health history (in order of importance) and allergies. The latest heart echo result and spinal MRI are attached. I was in the local E.R. room at a Hospital I'd never been to before in January (due to severe gastro & probably, food poisoning) and the attending doctor was both amazed and highly impressed with my 'summary' and asked who has prepared it. I said I had (as I was fed up trying to explain all my health history to every new doctor I saw). Saves time. After skimming through it, the Doctor can then ask me very pertinent questions, instead of broad classic questions he would ask any new patient.

    As to diet, I now refuse to eat what I know will react badly with me. I don't care what anyone.... friend, family or medical practitioner thinks. I don't care if I offend anyone by not eating the food they've cooked for their 'guest' or served as a hospital patient. I don't care if my family are offended when I say "no, I'm sorry, I can't do that or eat that". Actually I don't have a social life any more. I can't be bothered (and would prefer to spend my limited energy on my Photography hobby which I love and am really passionate about).

    Even though I've moved to a different suburb on the other side of the city 6 months ago, I still go back to the same Medical Clinic on the south-eastern side of town for the simple reason that they are excellent and behave in a professional manner. My Doctor believes me. He is compassionate. He genuinely listens when I say or ask 'xyz' He concedes I might know more about some of my medical conditions than him. He appreciates that I don't particularly like synthetic drugs (being trained in Herbal Medicine, Aromatherapy & Soft Tissue Massage as I am). He's willing to give me extra time to talk and suggests I make most of my appointments for the last time slot in the day (in case we run over time). He is willing to refer me for any blood tests I want (or he wants, if I have a severe or unusual symptom).

    I'm very lucky in many ways. I'm single, no children and can live my restricted life whatever way I like (within my energy envelope & pain levels on any given day). If I'm tired I lay down and rest, no matter what the time of day. If my wrists, shoulders & neck hurt I get off the computer. If I'm tense from ongoing pain, I meditate or do some walking meditation. If I really really really can't stand the pain I take prescription analgesia. I chose what I eat and when.

    The important thing is to concentrate on acceptance, adaptation and focus on what you CAN do (not on what you CAN'T). If you're young and have the money, sure, go to specialists & try different treatments, but if unsuccessful, adapt, change, work out a new way of living and accept it.

    It's all in the Mind.

    You may get better. You may not. If you do get better, then it may be to return to a different way of living. You may return to good health and a successful career, family & children, but it's highly probable that your experience with chronic ill health has changed your outlook on life. Maybe you concentrate on the small dreams, not the big ones. Maybe you've learned to be more Compassionate. Maybe you've learned to be more Loving and Caring as an individual. You probably don't apply for high-powered stressful careers because you understand the negative impact they will ultimately have on your health.

    I rarely post on forums or websites any more because I've become a Photographer, which takes precedence over being a Chronic Illness Sufferer with both acquired and inherited conditions (from both sides of my family).
     
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