Do you tell a doctor the truth about your medical history? For most people the answer is a no-brainer: of course you tell them everything about your past. An ME/CFS diagnosis, in particular, though, can come with some baggage – baggage that suggests to some doctors that your problems aren’t real (or are exaggerated), baggage that could leave you with a less than comprehensive examination.
Can they handle the truth?
You want to tell the truth. You want to be able to trust your doctor. You definitely want the best medical care available – but it’s not always clear how to go about it. It’s a tough situation.
We’re not talking about your regular doctor – the one that probably knows you have chronic fatigue syndrome or fibromyalgia – but somebody new to the scene.
Here’s the scenario. Something goes wrong. You have new gut problems, a pain somewhere you’ve never had, maybe a lump you’re worried about – something new that you feel is not just another weird flare – and you feel you must see a doctor either immediately (emergency room) or later.
When they ask if you have any other conditions, do you lie through your teeth telling them, “I’m fine!” (or mention everything but ME/CFS or FM?) knowing that by mentioning these disorders you could put yourself into a doctors “psych” category or even, if you’re really unlucky, set yourself up for a less than thorough checkup? Or do you, feeling they should have all the information possible, make a clean breast of it – and take what comes?
Let us know about that, your experiences with doctors in the past, and how that affects your decisions about when to see a doctor and more in the poll below:
I JUST WROTE A LONG COMMENT, WHICH IT SEEMS DID NOT GO THROUGH–I’M REALLY NOT UP TO DOING IT AGAIN!!!
I have just done the same!!!! Waste of ten mins there then!
me too
I’ve also experienced this frustration. It only takes one finger stumble to “blow away” a reply. The solution that works for me is to compose the reply in “Word” (or whatever word-processing program you use). Then, I just copy the text into the reply box. Of course, after a period of time I forget this strategy — that is, until the next time my carefully-worded text disappears.
y aren’t my comments showing up…. Too much to go thru again
A group of three neurologists would not see me as a fibromyalgia patient the person scheduling appointments for new patients said the doctors would just call “it” something else, they do not believe in fibromyalgia.
Yes, I also have posted and it didn’t go on ??!!? If we aren’t supposed to reply,, tell us..And I have been turned down by more docs than I care to admit. No one wants a fms/cfs patient. Solo frustrating…..rheumatologist passed me to Neuro,back to my GP. no one wants to deal with us. Say they don’t know how or have time for us…..
I told a rheumatologist I saw that I had Myalgic Encephalomylitis, and he told me he did not know what that is. I told him I had given his staff member a copy of the ICC article on ME from the Journal of Internal Medicine. He was not interested in looking at it. I finally reluctantly said that it was commonly called CFS (I live in Virginia, USA), and he scoffed and told me I’d be fine if I would just eat more fish and get more exercise.
When I left, I asked the staff if they would give the doctor the JIM article I had given them, and they told me they had already filed it and could not get to it.
About doctors who “don’t believe in” CFS or ME or fibromyalgia, etc.
I have noticed that there are many people who do not want facts, not just doctors. It is obvious they don’t want — and will not read (as mentioned above) — information, articles, abstracts, studies.
And I have wondered just how these people think? Do they perhaps believe they know everything already? Or is it just that they don’t want their comfort zone to be intruded upon by uncomfortable stuff?
My experience has been that they don’t want to take the time or trouble that a “chronic” condition requires. And their comfort zone is very important to them as well.
Many doctors only expect to spend a maximum of 15 minutes with each patient, and don’t know how to properly bill insurance companies for compensation. They also don’t generally like it if you know something that they do not know, and they don’t want to put time and energy into research. I have been fortunate to find 4 doctors who did not dismiss me because of my illness. 2 were psychiatrists! I was told by both psychiatrists that they are often sent patients that M.D.s do not want to deal with, because M.D.s prefer to classify such patient problems as “all in their heads”.
I think that folks who don’t want information about this are frightened by it. After all, if they admit it is true, that means that it’s possible for them to get this disease, which can be pretty frightening.
I have done the exact thing – telling doctors I have ME (even have to try and spell it out for them!) Hate having to say it is also called cfs – it usually gets a dismissive, “Oh.” and “that look.”
Pisses me off!
Leslie little,, I know what you mean. Not ones of that I have seenknows what Mecca is. Say they never heard of it!!!!!!
I was seen by a sleep dr. Who was one of the first in his field in the 70’s..that specializes in sleeping disorders.. he claims that my exhaustion for the last 20 years would be cured or helped by using a cpap machine…when I told him I have fm and cfs he said, you realize there is no such thing as cfs, don’t you?”…I use the cpap now for almost 2 years and it does not help with my excessive daytime exhaustion at all.,, I was given a prescription for adderal from my neurologist that helps a bit but I dont want to take to often for fear of damage to my heart. ?.
If I get overheated I have Dysautonomia, hypoglycemic reaction, GI muscle spasms empty GI track, tachycardia <BP then low has happened in 2 different doctors offices, both were frightened and sent me by ambulance to ER. One episode ended with infarction of the cerebellum. Spent 2 mo in Rehab.
I find that as I’ve gotten older, more symptoms of dysautonomia show up. I don’t have POTS, because my blood pressure is too high, but I do get many of the other symptoms – tachycardia, sick feeling, almost like dying if I eat too much at a meal. And that ‘too much’ isn’t even a normal amount that most people eat. I alternate between chills and heat waves, and I’m well past menopause, but I didn’t flunk the tilt table test. Of course, the worst is the pain and exhaustion.
Several years ago, my eye was scratched and then got very infected. The pain was excruciating and I became unable to see anything other than a blur out of that eye.
I went to an opthamologist who seemed extremely concerned that I was going to lose the eye. He gave me antibacterial eye drops and insisted that I had to see him every day until it got better.
But the eye drops just irritated my eye every time I put them in, and every day the infection kept getting worse. The doctor told me to keep using the drops and offered no other treatments.
Finally I had the inspiration that hyperbaric treatment might help and found someone to give me some sessions. The infection improved immediately after the first session and eventually resolved.
Later, I realized that this infection very likely was caused by CMV, a herpes virus for which I have sporadically tested positive (IgG). This virus frequently causes blindness in AIDS patients (who, like M.E. patients, have problems controlling herpes family viruses).
That doctor did not even question whether my eye infection could have been caused by a virus, even though I stated clearly on the form that I had Chronic Fatigue Syndrome.
Ironically, I had some Valcyte in my possession at the time but didn’t think of using it since I wasn’t focusing on the possibility that the infection might have been caused by a herpes virus. The doctor didn’t even suggest that as a possibility Though you can bet that if I had written down HIV/AIDS on the form, that would have been the first thought to spring to his mind.
I don’t know that a doctor has ever treated me worse because I stated that I had CFS. As was the case with this eye doctor though, I certainly have found that stating that I have CFS rarely gets me any better care even when the diagnosis is extremely relevant to my health issues, however.
People with this disease have been abandoned by the medical community. The idea that I should have to figure out how to fix my own problems with alternative treatments or else go blind when drugs to fix the problem are _available_ but just not considered because no one knows what “CFS” entails really is outrageous.
We must get rid of the term “CFS” and its legacy of bad definitions and start over. Because that eye infection had nothing to do with the fatigue that doctors think is my problem when I write “Chronic Fatigue Syndrome” on a form, of course they’re not going to connect the dots.
If I had written “M.E.” instead, and if M.E. had been an officially recognized disease, the doctor would have been much more likely to look into whether the diagnosis was relevant to my eye infection, I think.
Last year I went to a GI doctor for persistent nausea and acute epigastric pain. Endoscopy showed gastritis and mild gastroparesis. Upon my follow-up visit I saw the PA. I gave a history and attempted to explain how badly CFS had affected me 2 years prior. She then proceeded to advise me to “move around more, get out and do things” and recommended counseling. I have never felt more degraded, disbelieved, and put down by the medical profession than I did that day.
if i had a pound for everytime i was told to “get out and about and try and get some excercise”, i would not be on this site…i would be sunning myself in the Maldives!
I will try again to explain! last message never came up.
I have had a couple of very supportive doctors but seen a few who have dismissed me completely!
One told me it was “all in my head”…i challenged him and he refused to even have eye contact with me and sent me off to my Consultant Psychiatrist (i also have Bipolar).
My last consultant psychiatrist dismissed it outright and said it was probably my mind playing tricks on my body!!!! Hellooooo…Bipolar…lots of years….M.E…not as many!
An application to receive PIP(UK), was turned down straight a way…they did not recognise or read any of the hospital letters…tests etc in the last few months or any physical capabilities. (these have included stomach disorders and a bone density problem) I have appealed and included the details on our parlimentary website which explains Fluctuating Conditions…their reply will be interesting to say the least.
One Government Agency who have jumped up to the mark is the DVLA…they have taken my licence away…brilliant…no recommendations for applying in the future and if i want to appeal…i have to go to a Magistrates Court with all the nice criminals.
So…i now weigh up the doctor with a first sentence…if he appears to be dismissive…i dont argue…i just take my prescription and leave them in their “Judgemental, Ignorant Isolation”!
I feel your pain Sharon, I have Fibro, and anxiety along with a score of trivial health problems that add up to a fairly difficult existence. My rheumatologist also suggested I have ME as well, although that never made it to my medical files. I still think they’re either related or the same thing.
I work 3 mornings a week as a carer for a lady with brain damage, I’m very lucky that I have a job which is physically not demanding and flexible enough for me to shift my hours around when I crash. Which I do, regularly.
I have applied twice for low level disability (PIP), and twice I have been refused. Both times I provided letters from my very supportive GP ( who actually wrote on one of the letters that he’s amazed I managed to work at all) and both times the ATOS assessor disregarded them. I have tried very hard to explain to them that the fibro does not mean I can’t do things, it simply means if i choose to do things beyond my capability I suffer for days afterwards, hence why I have to space out my activities and rest a lot and double my painkillers after I have done more than usual.
On my second application I was told i had to travel 25 miles to the city to go to my assessment, and that if I didn’t go it would be 4 months minimum before a home assessment could be arranged. I was dreading it. I arranged a lift to the station, had to get a train there and walk across town to the centre. By the time I arrived I was stressed, anxious, shaking and in tears and in a lot of pain despite taking extra painkillers. The assessment was as usual full of questions which don’t take fibro into account… yes I can feed myself. Yes I can go to the toilet by myself.
When my rejection letter arrived it stated in the notes that the fact that I’d managed to get to my appointment had convinced them i didn’t need help!!!!
Somehow we have to get these conditions recognised by the government. I could not work full time if my life depended on it, (I’m very very fortunate to have the kind of job I can manage around my condition) my household income is low because of this and at this moment in time there is nothing I can do about it, yet financial help is unavailable because the system is not set up to consider these types of conditions.
How do we get them listed as real and debilitating!?!
I dont think you can get benefits if you can work? Or maybe you can get low level. When I could not cook for myself, spent most the day resting but was able to go for a 10min walk as advised, at my best time of day, but I couldnt always eat properly, I was turned down for benefits. Yet an acquaintance in the area can play football and go out every day and gets it (this person has a completely different physical condition…)
That is so wild….
I am in my seventh decade with fibromyalgia. I started early because of living in a constant state of hyper-vigilance with an alcoholic father and the stress he brought into the home. I can not believe that all of these years later, things really have not changed and may even be worse. Even the neurologist I am seeing now for small seizures blinks every time I mention FM. My new MD makes no bones about the fact that she does not believe in what I have lived with for so many years. It is a very painful thing to have to fight that battle still after doing constant battle with a myriad of things that come under the FM umbrella. What are we supposed to do? I pray that I live long enough to see a real change…and hear some apologies. I have shed many tears over this.
Judy I felt like I was reading my own story except I have been living with fibromyalgia since I was 15 saying that the trauma to my system of kidney surgery when I was 10 who knows how or why we have this disease but we do no question asked if you tell someone you have cancer they don’t doubt or dismiss you how is fibro any different how do you explain pain it’s pain it’s not always describable most of the time it just PAIN …hyperviligance great word never knew how being constantly on guard affected me and others suffered it to with an alcoholic “father” I call sperm donor and unsupportive siblings over a decade older than me not believing me or I was a hypochondriac my mother was my only salvation as she found a magazine article ” could this be you” carried around to 57 Dr.s til it nearly fell apart 25 surgeries hundreds of tests and hospitals stays I still can’t find a Dr that doesn’t give me that face …if I tell them whatvi have what meds work & the meds that don’t I’m a pill seeker…if I let them decide after eating to see him or her for hrs as get maybe 10 mins b4 they start 4 the door..it’s emotionally and physically exhausting things that ppl take for granted like taking a shower that’s a huge undertaking….what can you do to. Be taken seriously not just prescribed lyrica and dismissed ppl with Parkinson’s and diabetic neuropathy get prescribed that fibro isn’t cut and dry everyone is different different stages so frustrating this disease is real no blood tests will prove it you can see it under a microscope or x ray believe your patient who knows there body better than them….
Although, it has been almost 30 years since I first became ill with ME/CFS, I will never forget how my family doctor of fifteen years treated me. He accused me of being an attention seeker, which I found quite ironic because I had always been the type of person who avoided the spotlight. I never liked going to doctors or hospitals and avoided both as much as possible, that is, until I became so unbearably sick that I could no longer ignore what was happening to me.
My symptoms became so severe that my doctor finally reluctantly admitted be to the hospital for tests. The tests always came back negative, which of course only made things worse. When, my concerned family was out-of-sight he always made a point of telling me that I was taking up valuable hospital space, which could be used for someone who was “really” sick. I was so ill and so scared. I didn’t think you could feel much worse than I already did, but his dismissive attitude towards my illness caused additional stress and made my ME/CFS symptoms flare even more.
His, and the attitude of doctors that followed have left a deep and lasting impression on me. When my family doctor said to me one day, that I should get on with my life and stop wasting his time, that is exactly what I did. I started doing my own research; reading everything I could; connecting-the-dots and luckily have found things that help control my ME/CFS symptoms. I have avoided all doctors completely now for over ten years.
However as I grow older, I am very fearful of becoming ill with something, that I won’t be able to handle on my own eg heart event. The thought of dealing with a new ailment, while trying to explain ME/CFS to some doctor who knows nothing about this condition sends shivers down my spine. I don’t handle prescription drugs or surgery in the same manner as the general population. How will I make some know-it-all doctor understand that my body overreacts to just about everything it deems foreign; something I have no control over?
I, too, react in unexpected ways to medicines, medical procedures. It’s only after reading Mary McDonough (Erin from the Waltons) book on how she was poisoned by silicon implants and how the medical and pharmaceutical industry completely railroaded woman with this damage, that I began to question my situation. I started going way downhill after receiving a pacemaker 10 years ago. I wonder if my body has been in a constant state of revolt over this foreign object. Silicon is used in pacemaker leads and it and, IIRC, titanium used in the construction of the pacemaker itself. My cardiologists for the last many years kept insisting that the pacemaker was working fine and wasn’t causing any problems. I haven’t dared to suggest some sort of allergic/rejection reaction. I even considered not having it replaced when the battery ran out. But they said the best my heart would do is about 50 bpm and often fell low enough to cause fainting spells. We won’t even cover the 30 years prior to that bradycardia diagnosis, and the scorn I faced in the ER. Usually by the time I’d fainted and been seen at the ER, my heart rate was near normal and no one made the connection . The most laughable treatment I was ever given, after complaining of nausea and bowel issues that are common w/heart irregularities – a nurse handed me a dose of. Malox
It is not only doctors we have to worry about. I told my dentist that I had CFS and Fibromyalgia and that because of this I could not tolerate epinephrine. He said he had never heard of that and proceeded to inject me with epinephrine. I was in bed and in terrible condition for almost 5 weeks afterward. The next trip to the dentist I asked to see my dental records and saw that he had injected me with epinephrine immediately after I told him that I could not tolerate this drug!
Sorry to hear about the experience with epinephrine — happens to me, too — but the “don’t believe” part reminds me of an allergy doctor years ago.
I was already have CFS/ME problems, but they were coming on gradually. Didn’t know what was going on. One part was allergies.
Went to idiot doctor. After pretense of taking history, during which I told him I had SERIOUS allergy to something, he proceed to apply routine patch test. Maybe 32 patches?
He didn’t remove the “something.” Just as I was leaving their office, I had a serious attack . . . Approximately same problem as your dentist, just different arena.
Wow! That sounds like malpractice. If you tell a doc you have a bad reaction to a drug and he proceeds to give it to you? Yikes. If you have the wherewithall (and I totally get it if you don’t!), you should report him. I would say that you have an allergy to epi from now on.
I, too , had to reiterate at every dentist visit, not to use anything w/epi. One time they ignored me and were pretty shocked at my weakness and near unconsciousness. At the time, I had no idea that it was tied it to fm/cfs/pots/wtfih (whatever the f I have) . I just felt self-conscious until that moment when I was able to prove that epi affected me badly.
Doctors also didn’t believe me, when I first had a pacemaker, that I could tell when it kicked in, until they looked at the heart monitor and I spotted each time the pacer paced my atrial chamber. And I could point to the different spots on my neck/chest, where the sensation manifested, depending whether the atrial or ventricle chamber was stimulated.
I found a new family doctor when mine wouldn’t prescribe the medication that the rhumatologist who diagnosed my ME had recommended. He just did not see how I was so deeply fatigued that I had to spend 16 to 20 hours in bed daily. It was for the best, as our new family doctor is younger and overall a lot more competent to treat all members of my family.
When I was diagnosed with breast cancer in 2012, the first surgeon I saw at a major University teaching hospital could not care less about my ME. In fact, he gave the impression he did not care about me at all! I took my medical file and numeric copies of all the tests and went to another surgeon, in another major University teaching hospital. I had an appointment within a week. No time lost there.
Everyone I had to talk to understood perfectly what I had to deal with. Starting by the surgeon, the oncologist, the radio-oncologist all the way to the nurses in the chemo treatment rooms, the technicians in radiology or in any unit where I would need to go to get tests done. For two years I benefited from top notch cancer treatment. There was a note in my file to try to make my appointments as late in the day as possible to accommodate me. I new full well that in the public health system from which we are lucky enough to benefit in Quebec, it is very difficult to agree to special requests when the appointment roster is packed full. And yet, when possible, they did.
Even though I will submit myself to the follow-up visits as requested by the surgeon and the oncologist, I personally tuned the page on cancer. At my last visit, I discussed my ME with my oncologist, as amazingly, for a while after I had healed from all those treatments, my ME symptoms had disappeared by about 80 to 85%. But when it came back, I was at my worst.
My oncologist offered an explanation. For lack of space, I will not get into it here. I told him that even though I’m still at risk, cancer is not a real concern of me now. After going through months of hardship, I want to live those extra years that his team and he have offered me to the best of my capacity. I want to attack ME with more than pep pills to keep me out of bed. He offered to refer my case to their rhumatology unit, where they might find a better and more up to date treatment.
I told the same thing to my family doctor, and he agreed to work with me, trying for a gradual elimination process, and to order different blood tests over time.
So, in conclusion, in my case, it was a good thing that some doctors looked down on me and my CFS/ME, as it turned out that they just did not really care about me as a patient, and they drove me to find better care.
I hope my story may help other ME sufferers.
Genevieve
I’ve written about what can happen when we tell doctors we have CFS. It’s a short piece called “The Stigma of Chronic Fatigue Syndrome” if anyone what’s to read it. Here’s the link:
http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome
I’m started saying that I got sick with a viral infection in 2001 and never recovered. That said, I always feel like I’m setting “the cause” back to not come right out and say I have CFS.
Toni
Wow Toni I am reading your book now. How to Be Sick. I do believe I read it many years ago but brain fog, can’t remember. :0)
It is great and thank you but your last statement here says it all.
It is so very sad that WE can’t say what we have due to the name of this disease. yes we sleep our lives away but seriously until some major government personal gets this, nothing will ever be done about this epidemic. Oh and I do not wish this disease on anyone.
I got sick in 1989 and never got well and now 25 years later I am really starting to go farther down hill with RA/Lupus and heart attack. So much to deal with and try to hold on.
I guess this could go on forever but just wanted to say thank you for your love, support and suggestions.
May we all be blessed someday with a cure or better health. Also more loving people in the medical word.
Just the sleepy snail wanting to run a race again
Hmmmm my comments didn’t show up either. Basically I’ve had some remarkable doctors who listen and hear and have empathy but there have been far more who have been dismissive. I am (was) a Registered Nurse and know my body well. I am well used to my symptoms but occassionaly something new springs up and my family doctor is very pro-active in sending me to specialists; that’s where things can go wrong. I’ve had ME/FM for over twenty years probably more when I think back on how I struggled since I was a teen after having a major flu that incapacitated me for more than a month, although I was pushed back to school too soon.
A neurologist, after several of my tests came back negative, told me to go see a psychiatrist-gee thanks a lot. But the worst was a physiatrist (rehab specialist) who told me to make exercise my full-time job. What! He even knew I had been very athletic before I became ill. I loved my sports why in the world would I suddenly stop everything? I could no longer swim a length let alone 42, I couldn’t ski, skate or hike all the hobbies that made me well me at the time. I went through a depression two years after I was forced to stop my activities due to my ME/FM (ME undiagnosed for 15 years, FM for 5 yrs).
I have a great health care team now. There are good doctors out there. If you are seeing one that doesn’t fully accept you and your symptoms then seek out another, if you can. We have serious and at times life-threatening symptoms. Do not hesitate to ensure all your medical needs are met.
This is the comment that I left in the survey:
I just do not understand why with all of the overwhelming available evidence, that those of us with M.E. are being marginalized and either not taken seriously, and/or most Drs & Nurses virtually have no idea what they are attempting to treat. I am really tired of being accused of being depressed, or not sleeping enough, or being too medicated, etc. They typically seem to search for a keyword and then blame all of my health issues on those keywords. It’s just like they are programmed with a default response mechanism, based on those keywords. This is tragic to say the least!
I was recently diagnosed with cervical spondylosis and osteoarthritis. Early on I thought it was joint pain with ME, but over the years I just knew there was something else and suspected arthritis, but didn’t know which type. It was only when I was experiencing neck pain and stiffness with onset of neuro-like symptoms when moving my neck, that the GP sent me for an X-ray. I should’ve had an MRI too, but hey-ho!
This is why a good GP and referral for diagnostics is important. I was wary of reporting new symptoms because of the hypochondriac and somatic disorder label and damage done, by some of the psychiatrists on people who have ME. This is why I put it off, even though my current GP is lovely.
Don’t be put off reporting symptoms to your doctor. Go back if they get worse or don’t resolve and you don’t think it’s ME. Go to another doctor at your practice, if you are being dismissed. Do your research on sites the doctors respect NHS A-Z, Patient.co.uk, established chronic illness charities and so on, so you can check the way a condition presents, if you’re unsure, but I suggest not to tell your doctor what you think it might be.
This happens all the time, and not just with ME/CFS. Many disease states or conditions or sensitivities are psychologized.
It happens to me with MCS/TILT all the time. I’m very drug sensitive. Some doctors scoff.
You have to read the doctor well and decide if your treatment plan might change/shift if you talk about other poorly defined or controversial conditions. But there are ways to frame it for them that they can understand better. For instance, “I got a tickbite in 2000 and had a bullseye rash and even though I was treated with the appropriate antibiotics, my system has never been the same sense. I’m more reactive generally, and I fatigue easily and have more joint and muscle pain. There is some evidence that a portion of people who get Lyme then have an autoimmune condition triggered. That might be the case with me. I really don’t know, I just know I have to be careful about my lifestyle and medical interventions and err on the side of caution.”
That does not sound crazy. It could be 100% true. And usually they’re accepting of that.
I’ve gotten docs to change Rx or prescribe preservative free, and even if they are reluctant, they usually will do it. But yes there is an attitude–a skepticism, and if they are too rude, there is always somebody else you can see.
I should add, depending on the venue, I also tell doctors if their offices are very moldy, or, when they are using glade plugins, that they are toxic. I mention that I write on environmental issues, and then I make alternative suggestions, and offer to send them links (such as to essential oil diffusers and steam distilled essential oils; or even that orange peel spray that is easy to use and popular). I think generally the presentation of these issues has to be friendly and informative. I always feel I am doing a little bit of advocacy in these cases. Generally, people will agree with me. Employees will agree the glade plugins are unpleasant, and people do sense when their offices are very moldy.
Dr. Bateman shared some valuable advice with me about seeing other physicians, especially specialists or urgent care docs. I always disclose that I have ME/CFS but make sure to let them know that I’m simply there to see them for whatever symptom or concern I am having currently. That way I usually feel like I am getting at least a fair shake at their best treatment ideas. I politely endure when I am asked silly things like if I’ve ever tried anti-depressants. I usually bring small snippets of current research or findings that are of interest to me and find that occasionally a physician is interested and even grateful to learn more. I really have to work at not going in to an appointment with a chip on my shoulder because of the many poor experiences I have had in the past, but my interactions with physicians has been much more pleasant of late.
My story echoes a similar sentiment. Sixteen years of doctors visits resulted in the need for five full-time prescriptions and a handful of diagnosis codes that never seemed to address the core problem. I still continued to worsen every year with long periods of fatigue following any little illness or adventure. I only recently became aware of the ICC 2011 document through research on Dysautonomias, and now I realize that I have ME (not the aforementioned 5 syndromes).
Last I heard, my current MD primary care doc suggested I have Somatization Disorder, which upset me very much. It felt like she was telling me my dizziness, fatigue, difficulty concentrating, migraines, etc are within my control. I don’t think she gets it when I say that if I have a good day and decide to do normal activities — say three loads of laundry and cook dinner — the next day I will be in bed with brain fog, muscle weakness, dizziness, and heart palpitations, and it will probably last 2-3 days …. It is extremely frustrating. Longer if I do more like take a half-day car ride or go to the grocery store.
Since I didn’t know I had CFS/me until recently, I can’t comment on doctors response to that title. I have seen dozens over the years, and they are usually sympathetic until they get the first set of normal labs back. Then they tell me there is nothing wrong and to see a psychiatrist. Incidentally, as a result, I found an antidepressant that helped with my fatigue and brain fog for a couple years. (Until it no longer did. Now it just makes me feel like I’m taking speed.) The new research on depression being an inflammatory disease, and that many anti-depressants are anti-inflammatory, is interesting when considering CFS/me as immune system dysregulation. Anyway I am looking forward to hearing what Stanford has to say in the coming years on that …
Any referrals to primary care docs who are sympathetic to CFS/me in the Sacramento region would be greatly appreciated. I am currently starting care with a UC Davis Med Center neurologist who is extremely empathetic. First visit was last month. When I told him about my frequent referrals to “psychiatry” over the years, he laughed and said that he knows my symptoms are real, a sign of disordered autonomic nervous system dysfunction and was extremely supportive. Now let’s see if he can recommend some treatments that can get me back to work, at least part-time.
Sounds like you found a good neurologist – who knows about ANS dysfunction in ME/CFS not an easy person to find. Good luck with him.
@Shane….you are very fortunate to have found a good dr at UC davis…the immunologist I saw recently was very dismissive and I will not return. He did order tests and some are very abnormal but I will try other Drs. I have shown the abnormal tests to 2 doctors with no response recommendations nor interest. Since this is the practice for treating cfs/ fms they should offer us a Dr kevorkian protocol so they don’t ever see us again. Why are they still this ignorant after so many years and many clinical studies. They should come under a class action lawsuit at some point. Now, even my GP seems to be frustrated and uncooperative. They all need to spend one year in complete immersion into cfs and fms and receive no treatment, no compassion and complete disregard.
For educational purposes only of course. I have no respect for doctors and try to avoid them completely. The uc davis appointment was for a new problem of repeated anaphylaxis episodes….total disregard. I am thinking mast cell activation disorder . Crazy system ! Do they really believe it is enjoyable to go to a Dr visit, I prefer anything else.
Shane, the neurologist sounds good and is probably a great however see if you find the help you need. You need a good primary care practitioner who understands ME/CFS. Empathy and understanding is great but make sure the knowledge is there. Sounds like a sharp Dr. You probably will need treatment (natural, nutritional, possibly medicinal). Some of that he can provide but probably not all…ex if have gut/dysbiosis issues common in ME/CFS he probably doesn’t have access to Genova Diagnostics GI Effects testing. Or testing for common adrenal issues in ME/CFS such as the Adrenal Rhythm test like one from Pharmasan Labs/NeuroScience. Or sex hormone levels which are very frequently low in ME/CFS. Here are some ways to find recommended or qualified practitioners:
cfstreatmentguide dot com/doctors-and-clinics.html
Also Dr. Neil Nathan…look up his and great friend Dr. Jacob Teitelbaum’s books on Amazon or other. Dr. Nathan is in NorCal and not cheap but amazing. There are others however. Such as Stanford’s ME/CFS Initiative Clinic, Fatigue Consultation Clinic Dr. Bateman has in Utah, The Open Medicine Clinic/Institute/Foundation in Mountain View CA, Dr. Lapp/Hunter Hopkins Center in North or South Carolina, Dr. Peterson in Incline Village though idk if accepting new patients, OC Integrative Med in the Los Angeles area, and many others…though not enough.
These are great associations to search for a practitioner through. I’d stick w/ the MDs, DOs, NDs, and maybe PAs and NPs. There are also chiropractors and others who may be helpful. Professionals who belong to these associations have a whole body/systems (holistic, integrative, and functional medicine) approach and are really more up on ME/CFS in general than say a random clinic Dr you’d see.
Academy of Integrative Health and Medicine: aihm dot org/find-a-provider/
American Board of Integrative Holistic Medicine: abihm dot org/search-doctors
The Institute for Functional Medicine: functionalmedicine dot org/practitioner_search.aspx?id=117
Jane,
Thanks for the info. on finding a doc. I recently had a bad experience with a new primary doc. Although I had excellent documentation from Dr. Dantini of Palm Coast FL showing my diagnosis of CFS and Fibromyalgia. He said, is this doctor a infectious disease specialist. I said, no he is an E.N.T. but he himself has Fibromyalgia and has done a study for it. When I left the office I got a copy of his notes and he diagnosed me with fatigue and malaise. So, I was debating how to handle this and thanks to you I decided to once again, find a new general doctor for my local area. Dr. Dantini is too far away for me to go to him for common things. In your link from the CFS Treatment Guide I found this excellent database. Every one needs to be aware of it. It has 7,364 doctors in 80 countries. It gives info. about whether the doctor treats CFS/ME or Fibromyalgia along with the type of insurance the doctor accepts. Thanks again for all of the links and info. for doctors. Here is the one that I found most useful. http://fmcfsme.com/doctor_database.php But to answer the question as to whether we should bring up our CFS or Fibromyalgia to a doctor I say,….YES because then, we know whether or not the doc. is ignorant or possible is willing to be educated on the subject.
p.s. I was wondering if it would be o.k. to copy Jane’s info. and post it to a support group leader. If so, can I also post it to an online support group leader for CFS and Fibromyalgia? It is a closed group and for those who need to talk about their ordeal with living with CFS and Fibromyalgia I highly recommend the group on facebook called: https://www.facebook.com/groups/Fellow.Travelers/ Clarissa Shepherd is the host there. She is very compassionate and is an author too. And, would Jane want me to use her name or not?
As to whether Jane wants her name used I don’t but all comments on the posts are basically in the public domain. In my opinion it’s fine and good to share anything useful you fine.
That’s the websites really about 🙂
Thanks Cort. BTW, I often share links to your website to various facebook groups and my local support group leader. Take care, I have been following your 2 sites for many years.
Seems as soon as I tell a doctor I have it, their demeanor changes and everything is suddenly linked to fibro (ie: nothing is truly wrong with me).
My daughter has MS as well as fibro – but all they seem to see is the fibro and she gets condescension instead of understanding and real treatment. We are a family of fibro women (my mother, my sister and myself) and it’s rare to find a doc who can work with us – or at least try to. I’ve given up on myself and choose to concentrate on my daughter’s health from now on. I’m 50 and can manage … she’s 27 with 4 kids and a husband who depend on her.
I think that the onslaught of fibro diagnoses led to an onslaught of pain meds being prescribed – which led to the DEA cracking down on doctors – which has now led to doctors dismissing pain patients offhand as malingers and drug seekers. The DEA thinks that over use of prescription meds leads to use of illegal street drugs and overdoses of both. They are wrong. Under prescribing of meds is leading to the use of illegal street drugs and theft/sale of prescribed meds by people who need them but can no longer get them.
My daughter has been bounced around like a tennis ball in the last few years because no doctor wants to prescribe pain meds. She is drug tested at every single doctor visit even though she doesn’t take any pain meds (because her last pain clinic was raided and closed down). They would rather send her 50 – 100 miles away to find another pain clinic than to prescribe ANY pain meds at all.
There is something seriously wrong with this picture. There is something seriously wrong with doctors who don’t/won’t treat their patients because the govt might take away their licenses, and pharmacists who play doctor and even if you get a script – they won’t fill it and they report your doctor for writing it. What the he** is wrong with this country??
The FDA has created an environment which causes doctors to be very scared. When people in pain can’t get pain drugs they’ve clearly gone too far.
I find that telling my doctor that I have CFS is a good test of whether he or she is up to speed on things. If you get the psychological bum’s rush then find another doctor.
Lets face it , if you cannot be diagnosed with either an imaging test or a blood test, you are probably not going to be helped. I think of medicine today like going to a fast food restaurant, you can only get whats on that menu and the service is going to fast. The insurance companies dictate how long an office visit is going to be and what tests they will pay for. Medicine has become just another way for corporations to get rich. So far I’ve lived through going to a Gastro doctor when they didn’t want to hear the words Irritable Bowel Syndrome now they all have the pamphlet on their wall. The same thing with Fibromyalgia, just put advertisement in magazines and tv commercials and doctors are willing to talk about it. Once the pharmaceutical companies have a drug to market, the doctors will get onboard, until than I go to the doctor as little as possible because it is less frustrating.
I, too, have experienced doctors with dismissive attitudes toward my fm/cfs history. But if you call it ME in this part of the US, doctors won’t know what on earth you’re talking about. Not admitting to your doctor that you’ve got fm/cfs might be risky, or could lead to inappropriate medication or treatment decisions. I think getting another doctor is the best thing to do-not withhold information.
I left a comment after the survey and it didn’t show up as mentioned by others. Maybe I didn’t submit it correctly. I’ve been reading this Health Rising for only a short time and am finding it helpful. I was on Provigil and Nuvigil for my CFS. Has anyone else used them?
I will look for it – thanks Elise – I’m still learning how to use this system.