New Perspective on Doctors' Attitudes Toward Fibromyalgia & Chronic Fatigue Syndrome

This kind of stuff makes me want to become a patient advocate, having to fight for myself for years (still do). I recently had a bout with a group of doctors over why my lungs were hurting. It really hurt to breathe and nothing I did seem to make it feel better, no meds. One doctor finally said that what impressed him was that I didn’t ask for any meds, I said that’s because I don’t want any medication, I just want this to go away or at least figure out what it is.
Well, it turns out the answer was in this blog. I was reading about harsh chemicals and smells and since then when I clean, I use a face mask and it’s improved so much.

I do remember a lady I met while doing physical therapy a few months ago. She had an accident at work of some kind and I think she ended up with a herniated disc. She eventually had surgery and was there for her post-op rehab, however when she complained to her surgeon that she had remaining pain that shot down her legs, kept her awake, and made her so fatigued she couldn’t take care of her kids, he basically said she had to deal with it. It seemed to me that had she not been on worker’s compensation, she probably could have argued more or just switched to a different doctor. I suggested she see a pain doctor or just a different doctor, but apparently that just isn’t how her worker’s compensation works. It really made me upset, seeing her go through so much pain and hearing about this guy who refused to admit that his surgery wasn’t a complete success. Had I actually known this lady, I would have went with her to her appointment and given this guy the business.

I’m an RN and know full well the extent of manipulative behaviors from patients. Many are drug seeking, have psych problems they refuse to look at, or just in need of attention. But even those people need something for which I am responsible to address without allowing my own feelings to interfere. Even though these patients are the minority, many health care providers end up treating all patients with suspicion, and disdain….and that’s unethical, not to mention dangerous. Health care workers who behave in this way are either burned out, or in the wrong profession to begin with.

Maybe I went to an exceptional Nursing school, but it was a significant part of our training to remain objective and listen to the patient and make unbiased assessments, regardless of how they present. But I am stunned at the lazy and unethical treatment coming from a vast majority of the health care system. Patients with complaints not fitting easily into their diagnostic pocket handbook, are not only sent away with inadequate care, but many times insulted and abused as well.

Having ME/CFS for many years now, I’ve got a good look at the inside of this broken health care machine. From the top down it is dysfunctional to say the least, and corrupt at most. I even attempted to get the ANA (American Nurses Association) to investigate why Nursing is far and away the # 1 profession with ME/CFS. It didn’t take long to see they are just another dysfunctional bureaucracy that cares only about it’s own survival. You would think with such a huge Nursing shortage, they would care to investigate why so many of us have become ill with this disease….but no, they do not care. Even if I do recover to the level of being able to return to work, it will not be health care…..I’ve seen the inside, and I’m disgusted, ashamed, and mad.

I know so many people without CFS who have had doctors brush them off when they had serious medical problems, that it’s clear to me it’s more common than not in all medicine. I have a friend who went to the ER with crushing chest pain and was put off as having an anxiety attack, but she demanded tests. They did them, and she smiled when the dismissive doctor came running towards her with a panicked look on his face when the test results got to him — she had a pulmonary embolism. Another friend went to her family doc with what she was sure was pneumonia. He told her it was a cold and to just go home and rest. She was so sure it was pneumonia that she went directly to the ER from the doctor’s office, and was diagnosed with double pneumonia and was out for two weeks. A cousin went to her family doc with severe upper abdominal pain. Her doctor told her it was just indigestion and gave her Zantac. She came to our family reunion that weekend and we encouraged her to see another doc. She did that the day she got home, and his evaluation was, “So, do you want to have your gall bladder taken out Wednesday or Thursday?” I am constantly amazed at the basic things that doctors miss, and should not miss, things that are obvious even to me. How do you miss gall bladder as your first consideration with upper right side abdominal pain in an otherwise healthy 50 year old woman? Kind of an obvious thing to consider. Note that all in these examples are women. Though I think that men get brushed off, too (I diagnosed a guy with malaria in 30 seconds after he had been shuttled around for three weeks at a university medical center — he finally was diagnosed properly the day after I told him he probably had malaria). But I don’t think men are brushed off as often as women.

As a result of all the condescension and disbelief I’ve received from doctors, I now take my husband with me to most medical appointments, especially whenever I see a new doctor. It is amazing how differently doctors treat me when there is a man in the room. When my husband is there, doctors are always polite, deferential, and respectful to me (but even more so to him), and they really listen. It’s actually pretty horrifying. So, for those of you without a husband, I suggest you take a brother, father, or male neighbor along, or just hire some random man to go with you, and get the treatment you deserve!

Thanks Carly for telling it like it is from both sides!

I work in the healthcare sector as well, and have witnessed health professionals covering each other’s butts, even when they well know that diagnostic mistakes happen all the time due to bias and dismissiveness toward certain ‘types’ of patients (which as someone mentioned is frequently women, but not always – race, socioeconomic status, age all affect how you’re treated).

The other issues is a lack of a thorough knowledge base. Women are often misdiagnosed for heart attacks (especially young women) because they present differently than men’s. Most medical knowledge is based on tests and procedures that were created when the only test subjects were men – they mistreat because medical education teaches them to.

But what bothers me most about how ME/fibro patients have been mistreated has been the inappropriate usage of psychiatric labelling. Doctors know that they can get away with abusing an individual if he or she has been given a DSM label. It is immediately derogatory, dismissive, and used to disempower ppl who have legitimate claims for unethical practice. No evidence (meaning diagnostic test) is necessary to make these labels stick, and they can mean shoddy medical care and ruined lives for those who have been wrongly slapped with them.

From Your Guide: Excellent point about psychiatric labeling! And isn’t it interesting that they can affix that label to you with no diagnostic test, and yet they won’t believe we’re sick because there’s no diagnostic test. What a sad irony. ~Adrienne

I’ve seen the mistreatment & pushing aside by doctors for most of my life….first with my mom and now with myself….my mom suffered a severe back injury over 30 years ago that still affects her to this day….she has had 5 major surgeries and is on disability because of the injury….because it was a work related injury, she is limited to what doctors she can see & what therapies she can attempt because of worker’s comp….I have been to appointments with her and been at the hospital for every one of her surgies – starting when i was 7 years old and the attitudes of doctors has progressively gotten worse as time has gone on.
At the beginning of this year, she was put on a muscle relaxer that she had a near fatal allergic reaction to, but it took 2 trips to the emergency room and 2 hospitalizations for pancreatitis and her blood pressure bottoming out before the doctors realized it was a reaction to medication. As a result of that mishap, she can never enjoy a simple glass of wine again and has to be extremely careful with what foods she eats for the remainder of her life because of the pancreatitis the medication reaction caused….
The pain management doctor also decided to use her as a guineau pig this past year and try to implant a nerve stimulator in her back, but failed to account for scar tissue from 5 previous back surgeries….when she called his office in excurciating pain a few hours after she was sent home after the out patient procedure, she was told she shouldn’t be in pain and they would see her the following week. This same pain management office “forgets” to call in refills for her pain medication, doesn’t return phone calls for several days, and in general ignores the fact that she is in severe pain and has no other options for a pain management doctor who accepts workers compensation in her area.

My son recently had a hole in his lung which partially collapsed and he has had this before and told to call an ambulance, but this time the doc who saw him told him that he did not need an ambulance if he was walking so how dare he. To which my son replied but I have a hole in my lung. The doc said, we shall see about that!!! They then tried to send him home because nothing showed on the ultrasound. My son insisted “no”.

4 hours later (which is ridiculous for such an emergency), an xray confirmed a small hole in his lung and the partial collapse and they had to eat their words.

I just wish I could be as sure of myself as he was when it comes to CFS because without that self-assurance, we are doomed to their mercy. But it is so hard when a number of different things could explain the way you are feeling today – when is it a virus and when is it the same old, same old fluey aches for instance? It is easy to be fobbed off when there is an alternative to consider.

Carly, I totally understand what you’re saying. Having been a hospital nurse myself, disabled by ME/FMS, I want to know why so many nurses become ill with these diseases. I suspect the Hep B vaccines that we were forced to submit to contributed to ruining our immune systems. Of course, the state nursing boards aren’t going to admit to this, since it would make them at least partly responsible. My son recently started the Hep B series, as part of his First Responder certification at work. I badly wanted to tell him to refuse it, but told him how I felt about the risk, and let him make the decision. How sad that Terry might have little choice but to decide to give up on the opportunity to help others, for fear of becoming ill. We need answers, we need transparancy in these matters, and most of all, we need the truth!

Cheryl,

The Hep B vaccine was the trigger for onset of my ME/CFS. Vaccine onset ME/CFS is not uncommon and the one named most often is the Hep B. There have been a few studies on this but as usual shot down by the political machine.

Yep, we need transparency and truth that will allow people to make a real informed consent before vaccinating. We also need the technology to screen those at risk for developing a vaccine related neuro-immune disease.

For years my mom suffered until she almost dies from a rotten kidney due to stones. THEY, the medical world, repeatedly told her it was nothing. In her thirties, with 6 children and an alcoholic piece of junk for a husband, she finally ended up at the hospital on her death bed. They took out the kidney and she spent months in the hospital but survived. Ten year later, she was diagnosed with rheumatoid arthritis and told she would be in a wheelchair at age 45. Time went on and she suffered and suffered and suffered. Finally, at age 65, yes 20 years later, she was diagnosed with HEP C and almost died. Her rheumatoid factor was present and she had a horriffic time with the chemo for the hep c, but she survived again. THANK GOD. MY point, she was incorrectly diagnosed for the years leading up to her rotten kidney and then 20 years wherein hep c almost took her life. I need to remember that doctors are not smart and caring just because they should be.

I have haad Fibro for almost 30 years. Luckily most of it was spent with kind, compassionate, knowledgeable doctors. But I recently suffered with a kidney infection that was put off as a kidney stone with no x-ray, no urine test. I was so sick it took MONTHS to recover! I saw a urloogist who did run some tests and they came back OK, so he tells me, “Your tests are fine, you are fine!” Totally ignoring the horrible pain I was in, I could hardly get out of bed and had lost almost 20 pounds. Then I see another doctor who diagnosis Intersitial Cytstitis. A very painful and life affecting condition.

in all the time i have been sick i have never come across a doctor yet with attitude because if that happens to me i will give that person more attitude than they could ever imagine, i am respectul to them and they better be respectful to me! the only thing i got was once i bought as a thank-you a xmas gift for a female doctor and she ended up refusing it from me, however the previous xmas she accepted a xmas gift from me and accepted this and thanked me for it. to me i found her extremely rude to return this latest gift from me and now when i think of it i am truly glad she gave it back and who knows maybe she thought i was trying to go to bed with her and i was not because she is definitely not my cup of tea! i guess now that will be the last time ever i offer a doctor a simple gift as my appreciation. also she is no longer my doctor and the truth is she does not know much about cfs and she tends to be to british belief trained. a very nice lady but i think also if she keeps rolling her eyes they may get stuck in her head. last i wanted to say to all of you is happy new year and i wish all a complete recovery. p.s. if your doctor gives you attitude ask them then and there to give you 6 months repeats on all your meds and when you are leaving their office ’smile’ and say ’see you in 6 months’… don’t take their b.s., they work on your behalf and that is all part of what they are paid for and north american doctors are 20 years ahead of british doctors… god bless all of you who are ill with this nightmare…. sincerely, aidan walsh southampton, u.k.

My teen aged son suffered from seizures, ADD, and most importantly, major depression. His psychiatrist only addressed his ADD even though test showed his other more dangerous mental conditions. My son never made it to his third visit. He committed suicide a week before his next appt.

Lloyd I was told years ago by a doctor of my mom’s. That we dont work for them they work for us. So if you need anything or find anything then let him know. Since that time I have never offered a doctor a gift. As I think it is a gift to them that I see them and have myself and insurance to pay them for our visit.

Now as far as doctors go. I had a doctor a few years ago said that he wished all his patients listened to their body like I did. But what he didnt tell me at all that I was a diabetic. Once my insurance changed and I had to go to another doctor and was told I was a diabetic you could have knocked me over with a feather. So while you might trust your doctor and he is really good to you. Its always good to check out other things ourselves.

My doctor now is wonderful. He is the one that found the FMS/CFS on me. I had been his patient for several years before and when I started complaining about my back he took xrays and also MRI’s. Nothing showed up. Then he sent me to a pain doctor for caudle blocks in my back. But by then I was having lots of pain in my legs, arms and just all over. He then said he thought that I had FMS. But he wanted to be sure. So he sent me to a rhemy. Who confirmed my doctors findings. He sends me to specialist when he thinks that I need one. But mainly I just see him. One complaint about something and I have a specialist to see before I leave his office. I have to say he’s wonderful and listens very carefully at all times.

I Have Fibro and CFS 8 yrs now dealing with VA, on SSDI .They must give me the worst DRs. on their list. I have A history of alcohol and drug use.Now with 8 yrs Sobriety known by name too 100s of peaple In AA ,In the Willmar MN. area..The Va still thinks Im a drug seeker,and I wash Down my pain medication with whiskey..When I find out I am Dying there are certain peaple their..that are going to be confronted,and then some Thank You For your Time

One pain doc didn’t believe me when i said i had a sensitive stomach and to medicines. i told her nucynta was reaking havoc, what does she do, increases the dose. I ended up with a flared up IBS situation. she tried accupuncture for some of my pain and made my ear bleed as she stabbed me with needles, now each time I chew, I get an excrutiating pain in my ear, she gave me an emg and assured me it wouldn’t hurt. I almost hurt her when I flew off the table, she took me off of percoset and tried the nucynta then the fetonal patch which gave me rashes, which she ignored. I hate this doctor, she made my life miserable for the few months I saw her, the only good thing is she sent me for a tmj test and sure enough, bone on bone on the left side of my jaw which caused many of my headaches and I now wear a night guard that helps a lot with those.

White Flower Oil (embrocation.50webs.com) was introduced to me by my mother. During one of my headaches, she gave me this tiny bottle of oil and told me to massage it on my temples and forehead. Amazingly, it worked! Somehow the oil penetrates into the affected area and relieves the pain.

I guess malpractice suits don’t scare them any more…or maybe who has the money and cojones to put them in their place…everything I’ve just read makes me so sad…

why do you have to go thru so much stuff, why can’t a doc just listen to you as you listen to your body. I didn”t want to believe i had fibro. i was in the casino biz for many years and had to quit, it hurt too much. in fact I think that fibro could be caused by electronic magnetic fields, like slot machines and such, just like nurses in the hospital, they are near xrays and many tools they use to treat patients. I believe this has a lot to do with fibro. i was in the casino biz off and on for 14 years??? anyway i need a doctor to understand me, and then that doc to tell my husband that I am not a hypochondriac, its so depressing. I do not drink hard alcohol or wine, but i do drink beer. Is that bad for fibro. it helps me feel better/relax? well, i guess i vented so thanks for listening, let us all have ahappy healthier new year! bocou

As I sit here tonight; New Year’s Eve, reading all comments, and weep. I weep for us all! Seriously, I having been sitting here for hours, with pain conditions, diagnosis, which all need care, attention, and proper treatment. Yet, what does this really mean in the daunting hell that is our healthcare system of now? I, too, worked in, married into, and lived amongst medical providers. I, have been privvy to patients who are manipulative, etc. etc. However, I have been up against far more souls who needed and continue to need sometimes just basic care, and it is lacking. Come along to some of the largest institutions we have in this country, like I have, see first hand the realities; daunting at best. Why is a primary doctor now called a ‘gatekeeper?’ And, why is everyone being led immediately to a specialist w/out basic ‘touching’ and assessment of the patient’s needs? And, why is someone a specialist in a field of study, you fit in that criteria, yet they don’t have enough research read, and applicated to treat you? Why are doctors without training or so little, dispensing psychotropic medications, and others, to patients when they are not looking at the totality of the conditions, and/or consulting with other medical professionals treating patients? I do know, I am far more disabled than I needed to be, by the ill treatment, lack of treatment, thwarted non-efforts of those treating me. I didn’t doctor shop to get a drug fix folks. I was sent from a work injury, and sought out tx’s from what was told to me as the ‘best.’ I lost it all. Once a patient decompensates, other ailments follow, and the whole mind/body/spirit fails to thrive. Advocate, Never walk away without your voice being heard, and never discount someone elses realities just because you yourself do not feel it, see it or understand it.

2 of us in medical records got fibromyalgia several years apart, she had TMJ as well. I carried xrays when we worked at the clinic as well as charts and after 5 years I worked at the hospital but only dealt with charts. I was told by one co-worker
That all the germs passed back and forth on the charts made her go home and alcohol her hands every night. I never knew anyone else that had fibro or TMJ and it wasn’t until the c-section of my 2nd and last child that I got fm.I had a 2 year old, a 3 month old baby and my father died of cancer with in 5 months. I have been in pain scince 1995. So I was not able
To grieve cause I was changing diapers ect…. So I had a breakdown and from then on thedocters couldn’t get me to a mental ward fast enough like. They got a bonus or something.

When my daughter became sick with cfs, waaay back when we did not even know what that was, a doctor told me “If she was my daughter, I would get her to go to school”, insulting both my daughter’s integrity and my mothering skills all in one breath. Well ten years later she is still disabled, and I still want to slap that bitch. Oh and she is XMRV positive, so it was a RETROVIRUS and not a lack of character, not a desire to stay home from school. Did I mention I still want to slap that bitch?

Cheryl and Carly, It is very enlightening that you mention the Hep. B shots. I was a public school teacher (had to retire early due to this freakin’ fibro), and in the 90’s they made us get these shots. I got sick about a year after the last shot in the series. Is there any research on the connection? After a while the school district no longer made an issue about the shots–they never followed through making sure everyone got them. I kind of thought I came down with this as a result of an auto accident I was in (’89) because I have heard of this…
Re: Doctors, I just started to read a memoir by Mark Vonnegut. “Just Like Someone with Mental Illness Only More So.” In the introduction he speaks very candidly about the health care system and what a mess it is. He’s a pediatrician. My own crappy insurance premiums just increased $140 a month. More $ for less.

I am very interested about the connection of fibero and the hepitis B shot. I had one in about ‘92 before I visited Morrocco. then in ‘99 I was in an automobile accident. shortly after that I started with the FM symptons. Went from dr to dr. with the pain and all the same “It’s all in your head” one even told me to walk for 10 min. a day and it would clear up. HA. Finally my family Dr. decided I must have Fibro. and has been very cooperative all along. Now I have another problem – I used to be on DARVECOT n-100 and of course the FDA has puled it from the market place.
So now comes the problem of what to take I’m on percocet now = have to take 2 every 5 or 6 hours . but I don’t really like that – I tend to get a little drowsey. DARVOCET WORKED PRETTY WELL.. WHY DIDN’T THEY LEAVE SOME OF US ON IT? with the winter season here it is harder to get around. summertime I love my garden and no matter what I work there – my therapy. Thanks for hearing me vent – any ideas for pain medication?

My husband had three holes open up along his heart surgery scar for three yrs. They were bleeding and oozing, at least three of his doctors knew abt this but never even swabbed it to ck for infection. I knew it was infected! He was hospitalized in Oct for other reasons and only then did they take a swab to discover MRSA infection!!
He has been going 7 days a wk for IV antibiotic infusion before they would operate to clean out his chest and close it up. A three hr surgery!

It is unfortunate that there is good and bad Dr’s out there and Nurses as well.I have worked in a Nursing home and have seen an incident I had to report..The Nurse never should have gone into this field much less a Nursing Home.She no longer works there Thank God!!!
I also have had a DR that was a Joke.My Husband went to him and he smelled something on his breath and asked him if he smoked Pot???My husband replied I Just ate a breath mint!!!I went to him for the 1st time he accused me of all sorts of things.He quit and now works in a prison DR good place for him!!!!
Now we have a cocky Dr right out of Med school ,he’s not great but he’ll work.

Was dxed with fibro in 92 but wasn’t until a year and a half ago when I was too sick to work that I finally had a doc who would test me for Lyme, which is what I had all along, so it is late stage. He thinks the Lyme triggered the FMS. All the other doctors treated me like a psycho. One hand doctor (when my joints were going from the Lyme) told me to my face he thought I was making it up. By then I was getting tired of leaving doctor’s offices in tears. My last doc before the real one told me, when I asked to be tested again and the insurance denied it, why can’t you just realize you just have a very bad case of fibro and stop all this wanting to test for other things. Because I didn’t. Well, I did, but I had other things too. Now so much damage has been done to my organs that I have liver issues giving me porphyria and pyroluria, adrenal and thyroid, massive digestive issues since my liver will no longer produce the necessary enzymes, and much more. Don’t let a fibro dx mask other things and don’t let the docs intimidate you. If I had not kept fighting, I’d probably be dead right now.

It’s a shame there are too many doctors that continue to blow off pt’s with Fibromyalgia and CFS, grouping any other problems that come along as just a symptom that you are over acting to. I’ve been dealing with Fibro for 12 yrs now. Unfortunately, I’ve also been having problems with my cervical spine causing unrelenting nerve pain, numbness and tingling and loss of strength. That was first diagnosed 7 yrs ago with the herniated cervical discs C5-6 and C6-7 and central spinal stenosis and foraminal stenosis in all levels from C2-3 thru C6-7 pinching off the nerves running down both arms. Been blown off by 4 NS blaming the pain as something I’ll just have to “deal with” and the problems in the cervical spine do not cause these problems. Last appt the jerk rushed me out the office so quickly he failed to realize he was looking at the wrong MRI from 2 years prior instead of the most recent one. My Pain Mngmnt doc who has done 3 rounds of facet joint inj. told me he doesn’t want to do anymore injections after my last MRI revealed worsening damage to my spine. He said it needs to be corrected. 2 NS and 1 1/2 years later I am no further along in getting any relief than I was before. My Fibro doc is fighting to get auth for me to see a NS who has reviewed my MRI films and has said he wants to see me. After years of doing what was recommended and still getting no where, I finally have a chance to get some help, only to have my ins co stand in my way. People with Fibro not only have to fight the daily pain and problems of Fibro, but also the ignorance of doctors who don’t take the time to look further into a pt’s problem and brush them off as a crazy drug seeking cry baby with a condition that does not exist so they are told to just learn to deal with the pain. If anyone is having trouble getting someone to listen to them, keep trying. You may have to kiss a lot of frogs before you find a prince. Good Luck!

My rhematologist told me my fm would go away in 5 years, it
Has been 16 years now and I’m still in pain. And yet, he acts like I,m such an imposition to see me for 3 minutes. He told my husband not to have me go to any support meetings cause
Some fm people r on the crazy side, so I have gone thru this
Alone for 16 years even my own family didn’t believe me. I was so mad I didn’t talk to my brother for 4 years or see him except at christmas to be civil for my mom. I think they have finally
Begun to believe me as the last 2 years my new dr. Has helped me get thru thanksgiving and christmas with pain patches on my back, the med alone never killed enough pain to sit for long
Periods of time. My mother-in law was the hardest part. She invites herself every year and makes me a basket case nerve wise, hense the nervous breakdowns. I told her of my pain in the begining and she said so what, millions of people r in pain.
So I get the constant ” what do u do all day?” and my sister in law wonders what I could possibly be depressed about. I do not have a job and have felt guilty about that for yea

Dear Sylvia, Have you ever been able to see a doctor who specializes in Physical Medicine and Rehabilitation? Most specialize in Fibromyalgia and other pain conditions. My Rheumatologist sent me to my PM doctor when I was first dx, and I am so grateful to have her on my side. She totally understands what we go thru and does not dismiss her pt’s as crazy whiners who must be faking it or overreacting to a condition that does not exist. I see her monthly for injections to help manage the muscle spasms and pain. She has been the only one to look further into my problems with my neck and just not dismiss it as related to the Fibro. I completely understand your comments about family holidays. I still dread going to any function that requires sitting in any type of a regular folding or dining table chair or standing around for a long period of time. When I do attend any function like this, I come home with every muscle in complete spasm and in such pain it takes days, and trips to my LMT and or Chiropractor to recover from. I’ve missed so many events or left early because of the pain. Every day has to be planned out in order to rest up for a function, or pre-plan your activities to get things done before, because you know you will be unable to do things afterwards because of the pain and muscle spasms. Unfortunately, family and co-workers often do not understand what is really going on and think we can’t possibly be having such problems because we don’t have a problem that is visible like a leg in a cast or something they feel would be causing pain. Only you know what is happening, and you have to look out for yourself no matter what anyone says. Best of luck getting the care and understanding every patient deserves.

Sylvia, It really ticks me off when I get that, “What do you do all day?” crap. I had to retire due to this fibro and it’s a struggle to get stuff done around my home. My own mother makes these snide comments from time to time…like my younger brother is planning to retire this year, “but he’s not going to lay around all day…” aarrggghhh!!! I know I shouldn’t let it get to me, but sometimes it does.

I’m reading a book called “How to Be Sick”. It doesn’t tell you how to deal with doctors; the writer has some very useful tools she shares that help me not to let my frustrations with this illness and those special people in the medical field not mess with my mind. I’m finding it very helpful in managing my emotions about the way doctor’s treat me. Doesn’t cure the problem, but it definitely helps me to cope.

I read most of these comments and it is so sad..I have had fibro for over 20 years. I am now 62. For ten years I was flagged as a drug seeker. I also had the pharmacists at Walgreens tag me and made my life hell. My story is long but it contains just about every complaint that you guys have commented on. I have just been diagnosed last year with two brain tumors. I am 7 days short of 28 radiation treatments. I have no idea what the future holds. But I know this that you or anyone else are having problems with Drs., Pharmacists etc. keep a record. Call your insurance company. Get a complaint form from the internet on Drs. and Pharmacists. You have a right to let your story be told. The saddest thing now in my life is that I put up with all of that awful treatment for so long without saying anything. So much time wasted. And so much upset when you are at your worst. Yeah the whole “do no harm” is a joke. Drs. today are spoiled kids who think that the world should bow down to them and treat them like demi gods. I have given this whole mess to the Lord and let him call them into judgement one day. I have times of anger still but I stop and say just enjoy this time right her right now and make the most of it. In the long run what else can you do. Judy

I wish that we could all wake up and say, wow, I feel good today. it has been a long time since I have been able to say that. I cleaned out my closet and did too much laundry yesterday so I hurt today, I wish the docs could be in our shoes for one day. how do you tell someone that your entire body feels like a bruise or plain ol’ broken? My wish is for all of you to feel better, find a good doc, and as much as exercise hurts its good for us, slow, baby steps, but on a continual basis. know your limits but get out if you can just to smell the roses and get some sun on your face for a little vitamin D. the heat from the sun feels good on the old bones!

I have ME/CFS, not FM and have therefore done very little research on the latter. But the 2 diseases overlap, so researching ME/CFS will likely pull up info on FM as well.

If you search any combination of “vaccine onset ME/CFS”, or Hep B vaccine onset ME/CFS, you will pull up enough to keep you busy for a while. Also, Dr Byron Hyde in Canada did some studies on Hep B vaccine and ME/CFS.

The Whittemore Peterson Institute in Reno Nv are the ones who have discovered the new human retro-virus (XMRV) to be in very high association with ME/CFS. They are also studying the XMRV link to FM, Autism, MS, GWS, Chronic Lyme and Cancer. They believe many of these neuroimmune diseases have a common etiology, at least in part. http://www.wpinstitute.org/ They also realize there is a vaccine connection in many of these diseases.

I am long time sufferer of thyroid disease along with fibro. From the thyroid boards I belong to, I can say those of us with thyroid disease have a had a lot of trouble, especially with endos. And it’s not endos.

I am currently avoiding my doctor who is very compassionate and a good listener because of his office manager/wife. Last year when I first started BHRT I called her to tell her for my record that I was stopping all hormones because they were making me feel worse. I hadn’t ever had hot flashes at night like I had once I started on E1 and E2.
She proceeded to tell me I was wrong (crazy?) “they will only make you feel better.” Lucky for me my Uzzi Reiss book arrived that very day and I went right to the estrogen section for “too little estrogen” side effects. Sure enough there it was in black and white, too little will make you feel worse. I increased the dose and immediately felt better. She told me the same thing with testosterone gel. I called and told her it was making me feel aggressive and again I was told I was wrong. Well I just got my testosterone results back and they were out of normal limits while everything else is still very low.
Getting rid of uncaring doctors might be easier than getting rid of rude office managers who are the doctors wife but it all seems unethical to me and I don’t know what to do about it besides change doctors.

I have so many stories on this topic, personally and professionally, I could be writing for 3 hours. As someone whose job it is to scour medical charts, I have seen mistakes that would make your head turn. I have seen patients that died due to errors that no one caught, and that the patients’ families knew nothing about. But personally, I myself have had doctors pooh-pooh my self-diagnoses (and I never go to the doctor without self-diagnosing first, as I am a medical professional), and my self-diagnosis has never proven wrong yet. Most doctors do not want to acknowledge any illness that they can’t recall from their medical training, nor would they ever research it. If it’s listed as “rare”, then they assume they will never see it in one of their patients. Everyone I know who has had a serious illness was misdiagnosed and had to see scores of doctors until one “good” doctor would actually listen to them and could correctly diagnose them. My husband was offered anti-depressants by several doctors when it turned out he actually had small intestine bacterial overgrowth, which required several courses of antibiotics to cure. My own gyn told me I had a huge fibroid and was the size of a 16-week pregnancy; therefore, my hysterectomy had to be done the conventional way with vertical and horizontal incisions. After a second opinion, I got a hysterectomy with no external incisions whatsoever! And I had no fibroid, and my uterus was only mildly enlarged. Patients have to be their own advocates is the bottom line…

Can anyone with a history of fibro, give me a pain management plan that might work for me, any holistic ideas? thank you

bocou, Have you ever tried Traumeel or Heel? It comes in an ointment which I love and pills and drops that dissolve under the tongue. It’s a homeopathic medicine. You should be able to find Traumeel in health food stores. A Vitamin Shoppe store carries it. I also use D-Ribose powder I put in milk and Magnesium caplets to help with the muscle issues. I have a lot of problems with my cervical spine which causes a lot of nerve pain in my neck and both arms. Neuragen is a homeopathic medicine that is made of essential oils. It is all natural. It is made specifically for nerve pain. It is amazing. Health food stores, Walgreens carry it. It is also available online.

i am too sick to write much.
25 yrs+, of cfs/me.(also + xmrv virus too)
for “us” patients,it is the MOST degrading thing we experience, when we go ‘a doctor’ (new or old one)
and be treated the way we do.!!
i, like almost most of “us” used to…be professionals
in our fields, very respected etc.
BUT…reg our ‘cfs/me/fbs/gws/lyme’ docs….it is “pure hell”
just last week i went to a ‘new dr’,even a women(been to over a hundred drs) and again…this one looked me in the eyes, like i was a ‘homeless scum…drug addict’ and said ” well, if you think i am going to be writing u any narcodic drugs, you come to the wrong place” !!!!!!
that dr was the ‘new dr in town’ who even my ‘palliative nurse’ had called before hand, to make sure she had “experience” in treating this illness !
last dr,my 1st visit,i brought in 3 yrs of pharmacy list………..GOD, I HATE THIS PART !! PLEASE KEEP WRITING, I AM GOING TO SEND A FEW DRS Y’R ARTICLES !
A HUGE….THANK YOU !!!! & BLESSING’S

here is a typical situation. I have been complaining of pain in my foot, limping etc for about 3 weeks. I finally went to the doc and I have 3 stress fractures and am now in a cast up to my knee. Now, and only now, did my spouse believe me. it took a cast. he said I always cry wolf, I told him I never cry wolf, I cry because I am in real live pain. thanks for the holistic info.

You raise a wider issue is is good for us to understand. After reading your article I stumbled on this one for doctors. It sounds very promising that the education is beginning at least in Australia!!! Check out at this link.

http://www.mja.com.au/public/guides/cfs/cfs2.html

Maybe creating a good/bad doctor list website would deter some of this abuse by doctors. The site could be widely circulated and advertised for effectiveness.

Also, on the pain issue. Since pain is a subjective complaint, a doctor cannot ethically deny pain meds to a person based only on his/her suspicion of abuse. Doctors and hospitals have been sued for this.

The posters should go back and read the responses as a group. It is a wonder that anybody ever wants to deal with them -in or outside of the medical profession. I can’t remember when I’ve seen such a bunch of angry complainers. Doctors get paid far too little and are under huge pressure to limit services by both the insurance companies and the federal government. If you don’t believe that, go read the contents of the obamacare bill to see just how draconian the penalties are if the doctor falls out of line. Now imagine what you would do if you had to sit in an office and listen to each and every person who posted a reply spout this stuff day after day after day. You’d lose compassion too. It would be better for everyone involved to stop treating the relationship between the sufferer and the world like some sort of battle. You catch more flies with honey than vinegar. Ask yourselves what has happened to your relationships in general since you developed fibro. I will bet that most soured. Nobody can be around people who wallow in suffering and self pity for very long. Not even spouses, children or parents. Also, it is scientifically established that if you choose to feel lousy and show the world how lousy you feel, you will actually feel more lousy and make others feel lousy with you. There is truth to the old adage-smile and the world smiles with you, frown and you frown alone.

Brett Carter, you have lost your damn mind!!! What kind of a sicko are you? Our pain is REAL and we generally keep it to ourselves because other people just don’t get it. Walk a mile (or even a block) in our shoes.

As a fibromyalgia,PCOS and diabetic patient I have come across far more good physicians than bad. However, the bad Dr’s and other medical professionals cause a ripple effect throughout the medical community. They effect not only patients but those they work with.

When I was searching for a fibro diagnosis. I was told that I needed to seek mental health treatment, that it was all stress induced, I was given looks that said I was just seeking pain medications, I was told just to live with it. I was told that my weight caused my condition even though I knew that the condition caused my weight gain. I was over medicated,under medicated or given the wrong medication altogether. I was misdiagnosed & mistreated. I became distrustful, disappointed and isolated as a result. It took me three years to get a diagnosis.

It wasn’t until I located my current primary care physician that I found a medical professional who understood my condition, believed in it, listened to me and acted appropriately. He also maintains dialog with me that includes me in my healthcare decisions. He is fantastic! I had seen all kinds of specialists and in my opinion the more specialized they were…the more arrogant!

Do not tolerate mistreatment! Fill out those surveys (you can remain anonymous) report mistreatment! Fire those Dr’s who are mistreating you! Expect respect! Be informed about your illness, your treatments & medications. Be your own best medical advocate. Find someone you trust to be your sounding board. Follow your trusted Dr’s treatment plans. Listen to your intuition!!! It is often correct.

If everyone was an informed medical consumer, it will force the bad apples to the surface where they can’t ruin the whole barrel !

BRETT CARTER: If you only had half a clue, you wouldn’t have left your post. What were you even doing on this site??? The people that post these comments do so here because it is generally the only place where we find other people who understand what we go thru and don’t JUDGE US. Like most people with Fibro, I have very few friends, relatives and co-workers who even know I have Fibro, CDD and never ending nerve pain. We suffer in silence every day. If you don’t want to see what someone with this awful condition goes thru and has to say, STAY OFF HERE. Maybe you can find a site for people to spout about stuff they know nothing about. We are not asking Drs to hold our hands, cry with us or give us pitty parties, just believe us when we say we have a medical problem and not dismiss us. This is not something like a broken leg where you stay off it for 6-8 weeks and you’re fine. It is a never ending life altering condition that pretty much controls what you get to do, when you can do it and how long you can do something and there is always a price to pay, that is PAIN. Try walking around with the worse sunburn you ever had, then let someone scrub you down with sandpaper. Make it through a week of our lives feeling like this without a single cry of ouch. I bet you CAN’T.

Dear Bret,
I think that you must be a doctor or frustrated medical professional. I am sure 100% of us that use the blog are using it because they can feel safe and understood. We don’t need someone else to tell us we are sour and complainers. We already know that we complain, why because we have actual reason to do so. we hurt and unfortunately there are several different reasons for hurting therefore looking like a hypochondriac, One day it could be my hands shooting pains or it hurts to take a shower as the water hits my skin, or I simply can’t fathom taking the first few steps out of bed because I know how much pain it will cause. whatever you know about fibro, you don’t know enough to post the post you did. I believe that most docs are probably underpaid and under appreciated, but there are a large portion of them that don’t have a clue. And it is just sad for us, and frustrating as well. we do not like to be the “debbie downers” believe me. I use to skyidive, play 16″ softball, play intertube waterpolo, raquetball, tennis, golf, etc and I was good at all of it, but now, I am happy if I can climb up and or down the 15 stairs I have in my house. Do you know how depressing that could be? On this website, its just nice to know that I am not alone. You do not belong here, please don’t come back!

Brett carter is from the CDC

Bret,
where have you come from? What if THIS is the only place we complain because it is safe. What if we are SURVIVORS and WARRIORS with misunderstood chronic illnesses.
Please think about being a little more sensitive and keeping your mouth shut when you cannot be. Sounds like you are young, have good health and LOTS of choices in your life. How dare you comment about someone else’s without more knowledge.
Please read more about these topics so you can learn, provided you really want to. My own family believes I am malingering – none of us needs to hear it from you. If YOU can’t say anything nice, don’t say anything at all, especially concerning topics you obviously know NOTHING about.
Happy New Year. Don’t comment again on this site until you know what it feels like to have the flu for a few years.
And, now APOLOGIZE then go away.

Brett’s is an excellent illustration of the kind of hostile attitude most people with ‘invisible’ diseases have to deal with, whether it be from our healthcare professionals, friends, relatives or the kind of peculiar personalities that feel the need to post poisonous comments.

I think most of us with these invisible conditions cope extraordinarily well given the lousy hand we’ve been dealt.

can you believe that brett carter. he would be complaining if he walked in our shoes. he has no idea. my positive attitude has got me through 20 years of suffering. the man is a lunatic. i worked in emergency room for 3 years and you know something they become immuned to caring for patients and they are so cold hearted s.o.b.’s, that is the main reason i quit there. they used to joke when someone died in a car accident. the medical profession is full of sick ones and trust me it is not the patients. most of them do not know what a day’s work is. the man needs some phyciatric help….sincerely, aidan walsh southampton, u.k. p.s. maybe he should spend his days in the hallways of the c.d.c. posting comical cartoons about the sufferings of cfids patients which is what they have done. i am really sorry brett but i guess my mistake was not having anal sex with men. i guess i picked the wrong disease that does not get a $billion in funding. why do you not go back into your lab and create some more disease you useless idiot. we are not whiners, we are dieing and we do not have problems in our personal lives. it is this disease that is robbing our lives. now get off your high horse and do something before you and your loved ones get it….

Hi Bocou,

Here are some pain management ideas that have helped me:

- far infrared sauna (wonderful dry heat for pain, and a good sweat for general detox)
- osteopathic manipulation
- nutritional supplements such as magnesium and fish oil
- figure out food allergies and intolerances
- natural mentholated pain rubs
- move as much as you can tolerate without crashing (this looks different for everyone)
- massage therapy
- any sort of pharmaceuticals for pain/sleep/neuro that I’ve tried over the years have either been awful, or completely back-fired (dependence, difficulty getting off). I will no longer be that sort of guinea pig!
- the biggest help for me for most of my CFS/FM symptoms was low frequency pulsed electromagnetic fields. Lots of info on that to Google.

I’ve been dealing with this illness for 18 years, and finally am starting to feel well!

I hope I’ve given you some ideas to check out. Good luck and hang in there – you’re not alone!

you can now see how all of this is getting to people like ‘brat’, the fact now the world is watching everything about the ‘xmrv’ news and all sides of the medical profession can finally see the filth that comes out of the nih and the cdc and the truth will be told about their deceit and complete neglect. even the media is starting to have a field day with all of them. not to worry everyone because the full truth will be forthcoming. if we also look back when the fda/nih paper came out it was the useless cdc that said the opposite and these are the same ones who ruined elaine defreitas’s work. the bottom line is they trashed it because they want a cover-up. do not think for a minute that the cdc does not work on bio-warfare because they do, it is a fact. it is also fact that this is ilegal and prosecutable and to think that there are some very high ranking officials in the united states of america and including the ‘almighty’ justice department who know exactly what has not been going on with regards to this disease with regards to funding proper research and these same people who are watching these institutions act have themselves family members sick and dieing and it is not going to be pushed under the carpet. the hammer of justice will prevail. do not trust these instititions when serious epidemics are not given any proper funding.

Oh! How you have hit the nail on the head! I suffer from CFIDS and I am disabled and Medicare WILL NOT COVER THE COST OF MY TREATMENT!! because the only 2 places that treat this disease do not take insurance, (I wonder why!) BUT! Medicare paid for a $7,000 electric wheelchair for me, for indoor use only, (I have not left my house in 3 years now except when the hubby takes me to my doctors office). But she knows nothing about CFIDS and tells me to go to the CFIDS clinic, but we cannot afford the $2,000 to $6,000 for the treatment!! I cannot sell the wheelchair to pay for treatment, its not mine to sell as Medicare paid for it, but they will not pay for my treatment then they can have the chair back!! I don’t even have ramps or any disability equipment to help with getting into the bath tub, or rails!! we can’t afford this! So 2 doctors told us 14 months ago I would die without treatment before I turn 50!! that is in 3 weeks!! What am I to do??

thanks heather! I will try anything! I am more of a steambath person vs sauna, do you think it matters?
Also, I was wondering if anyone was taking cymbalta and if it is hard to come off of? I only take 3omg 1x a day but its $125 a month and I can’t afford it anymore. Does anyone have anything to share or advise me to stop taking it. I don’t think it does much for me anyway. I just don’t want to go through withdrawls of any kind. Thank you.
Bocou

cfs mom, i read your comment and i am so sorry your daughter has not been well, yes we heard your comments on a slap to the doctors face but i would not suggest that at all. i think you should close your fist real tight and let her have it good. happy new years and i will say a prayer for your daughters complete full recovery. god bless the both of you and your loved ones and all cfids patients across the globe. sincerely aidan walsh southampton, u.k. p.s. and they think when we are well we will forget….’WE WILL NEVER FORGET’

No prob, Bocou…….

Steam heat vs dry heat…. For pain relief, I think the main thing is what feels the best for you. My body hates humidity/wet heat (hot tubs feel good to me initially, but I have to get out after 10 minutes, and I feel worse after), but loooooooves dry heat.

If sweating/detox is the main goal, then dry/infra-red sauna is probably better than steam sauna.

Take care

I developed ulcerative colitis at 10. At 30 my colon was removed to save my life, then went thru early (guinea pig) stage of ileoanal proc. Had chronic pouchitis for 24 yrs. Taken antibiotics for years, & they’ve taken a toll on me. Years ago I started having anxiety, my throat would close. Stressed to max, & started losing energy. went to docs who said it was all in my head. Endocrinologist told me I had a low natural killer cell count, & UC was from immune deficiency I was born with, but wouldn’t do anything. 4 yrs ago I had bad bout of pouchitis & ended up on SDI. I found stuff on the internet about CFS & flabbergasted I had about 95% of symptoms. Told doc who said he would’nt diagnose me with CFS because there had to be some underlying cause for it. I found new doc & also found a fibro clinic. Nothing has helped me. Was able to get on LT disability, but I feel lost in the system. No doc will treat me as a whole. My PCP tells me he believes I have chronic fatigue, but doesn’t want to deal with it, so to keep going to the clinic. He also tells me that I need to keep seeing a gastroenterologist in San Francisco because he doesn’t want to deal with that either. The fibro clinic tries to treat me, but I am the only patient they have who has had an ileoanal procedure done, so they don’t know what to do with me because I can’t take a lot of the medications that their other patients take due to not having a colon. And, of course, the gastroenterologist only deals with gastroenterology. They don’t even want to hear about me having chronic fatigue, etc., etc. I never get better, only worse and worse. My PCP finally gave me Doxepin and my anxiety has gotten much better, but he doesn’t want me to take Ambien so still have lots of insomnia. The clinic wants to give me pain meds, but I tell them I don’t want them . . . I can deal with the pain . . . it is the no energy that is making my life unbearable. I am just very discouraged.

Comment Regarding Brett’s Comment:

When you take the stance that Fibro patients are whiners you show your ignorance about the syndrome. You are also giving in to stereotypes and displaying an amazing lack of compassion.

I know that healthcare providers are under enormous stress and strain. I know that our current system isn’t working. However, this situation is no excuse for poor patient care. It is also NOT the patients problem! Just as an understaffed/overworked customer service department does not justify mistreatment of a customer..only there is more at stake here!

As a patient and a person, I do not whine about my issues. As a matter of fact, I do my best to conceal any issues I have because I don’t want to burden others. I confide in my husband of ten years, my mother or my best friend when needed. All my relationships are in tact and very happy thank you very much! I pride myself in doing as much as I can everyday and living my life to the fullest despite my health issues.

Having an illness that the cause is unknown, that there is no cure and treatments are iffy is not something you would want for yourself or anyone you love. Trust me, I know. However, if it was you or someone you love..wouldn’t you expect quality care?

You certainly have a right to your opinion. I think that medical professionals who whine about the healthcare system and use it as an excuse for poor care need to explore other career options. That is my opinion. I have a right to it.

etta jane…. i do not know your complete history but in the situation you are in must be difficult. i have posted numerous times online about the importance of daily water intake. i do not know if you can consume water or able to take celtic sea salt. this you can buy online and look for the real one with 90+ monerals/vitamins. i want you to go to these sites and you will get numerous info there and if you think you could be helped this way i suggest later try and get one book from there, it is called ‘your bodies many cries for water. also if you are taking any ‘hystamine’ type meds this will show you how to chuck them in the bin. remember also ‘labels’ are what doctors love to call diseases that do not exist. symptoms can be from dehydration. also coffee,tea,juices,soft drinks and alcohol are dehydrants and believe it or not so is chocolate. i hope these sites help you and you can forget completely about useless doctors. be well princess…. http://www.watercure.com http://www.watercure2.org and throw that useless table salt in the bin

Dear Dear Etta,
I am sorry for your pain and suffering. In my opinion, if you have not tried pain medicine, maybe you should. It is the only thing that allows me to function and it gives me energy. it does not get me high. It takes care of some of my regular pain, not the nerve type pain, but it gives me energy to get through the day. perhaps you can find somewhat of a “happy” pill in it. You have endured a lot it seems. I say what ever works, then so be it. I can not tolerate the anti inflamatories or the Lyrica’s the Nuerontins, the nucyntas, the savellas, I have been guinne pig to all, but I do tolerate percocet. this is what works for me, not completely by any means, but this, and magnesium and B12. I am not sure what your tummy would tolerate, I have IBS and Acid reflux and Esophogitis. I would give something like a hydrocodone or oxycodone a try if you have not before. I function the best I can. I hope the best for you.

I can only think of someone I knew years ago who got the run around from doctors when they couldn’t pinpoint the cause of her back pain.

But I’d like to offer a different slant on this: family members.

Not only are doctors part of the problem, but my family is generally of the persuasion that doctors are some sort of god and to be listened to unquestioningly. Hence, if they can’t find a cause for something and therefore they think it’s all in my head, they must be right because they’re doctors, right?

Thankfully, I don’t listen unquestioningly either to my doctors or my family. With friends (family, doctors) like that, who needs enemies?

yes, family, well at least my sister understands, she has fibro too. i walked around with foot pain, and it took a cast to prove i hurt (ended up with stress fractures and not sure how i did it?) it wasn’t until i got the cast on that my husband gave me a little sympathy or showed concern?
he loves me to death I am sure, but why he won’t believe me when I say I hurt all over, I don’t know. I am going to try and get him to a support group meeting?

Its not just me, my husband has been having severe chest pains for over 10 years now, and nobody can figure out what s wrong with him – chest xrays, EKG, ECG, gerd medications, etc etc etc……I think I know what it is, but god forbid a wife tell a doctor what she thinks..(costochondritis)

I’m looking for doctor number….um, well, we lost count.

i am sick of all these dr’s that think all chronic pain patients aredrug addidicts. when your pain is OUT of CONTROL your dr. say go to the e.r. ( ya right). all they do is give you a shot in the butt and say have a good life and send you home.I have never been sooooo rudly treated in the e.r. by ALL the staff people there in the e.r.
they don’t let horses live in misery BUT they people live in misery. to the point of sucide or to truly make you a drug addidict. i do not go to the e.r. when i am feeling suicidal. they just lock you up in some crazy place and load you up with anti-depessants and NOT deal with what got yo the depression and to the end of you rope. i KNOW this will happen to me.
the (or ALL the dr.s) have to get there CRAP together to the right thing for all of us. you dr. says to go to the e.r. and the e.r. says they can’t treat you there and send you back to you back to yout dr.(whats up with this situation?) I NEED a quality of life NOT just to live to JUST to breath.THIS is NOT a life and NOT worth living.what does it take to shake up ALL health care community!!!!!!!!!!!

This is Tammy who posted on December 29, not the tammy who posted just above this post. Just checked in on the discussion since I first posted. On Brett’s comment, this comment train started with a discussion about how people who DON’T have CFS and FMS are still often treated poorly and dismissively, sometimes with life-threatening results, by medical professionals, so it is not just people with CFS being “complainers” that we’re discussing here. I’ve come to realize, with my illnes but also with the illnesses of others close to me, that there is the same spectrum of people in medicine that there are in any other profession. As in every other field, some medical professionals are excellent at their jobs and some are not so good, and a lot in between are fine (don’t you think those two surgeons at UMC in Tucson would be docs you’d want to work with?). Some are thoughtful, compassionate, and want to do the best they can, and others just don’t care and even get off on the power trip. And then, within that, they all have different ways of approaching medicine and patients, which may be fine for one patient, but off-putting for others (I know I have gone to famed specialists who have helped many but blew off my case from the getgo, and my other doctors have told me it is because those specialists have a narrow way of seeing things, and they are magicians if you fit that narrow way, but have no patience for you if you don’t, and I don’t.) Of the maybe 30 docs I have dealt with, long-term or just one time, in my 40 years of CFS, there was only one that I just really infuriated me.

(Finishing that thought in my previous email, since the post was too long.)
Not that I haven’t had plenty of frustrating, sad and sometimes humiliating experiences with docs. But the way I deal with going to a new doc is to expect nothing, go in very nonchalant and in a joking manner, and if they start to go down a path of being unkind or implying a psychological illness, I become even nicer, even more nonchalant. I find that if I respond that way, rather than in anger or by getting defensive or feeling hurt, they drop their impression that I am a complainer or have a psychosocial illness. If they’re still acting like a jerk, I say, kindly, “Rough day, huh?” Sometimes that shakes them out of their roughness, and they drop the doctor thing and then we are working as equals. Sometimes they bite back, and I know that I’ve just wasted that trip to the doctor. In any case, I know that I’m being myself, that I have my self intact, and their actions and words don’t shake me. All that really hurts is that they, once again, can’t help me. Really, it’s amazing what a little kindness and sugar can do, even when people come at you with such horrible stuff. I know it’s hard when you feel so horrible and can’t think and are so desparate. Believe me, I’ve been there (again, 40 years of CFS, about a decade of which was, according to my good docs, the worst they’ve ever seen, and three docs say that they were not sure I was going to live I was so weak). Our anger only affirms what the worst docs feel is true, and only serves to hurt us and cause us pain.

Wow!
and I thought it was just me x

I can’t believe my experience today with Dr. Carlos Torres in Rockledge Florida who is a pediatrician. The lady who I was hoping would schedule an apt for my 4 yr gave me a run around of how it’s her first visit and since I didn’t make my last month apt. I was not able to see the doctor. I had explained, it was because Dr. Torres was not listed in my ins yet so I had to wait a month. She ended up saying ‘I take your word for it. You can bring her in the afternoon.’ As if I was lying. She proceeded to ramble about what the policy was and all this stuff when I was calling her at work, trying to make an apt for my 4 yr old daughter who was crying of an ear-ache…after waiting for about 1 hr since she said she would call me back and NEVER returned my call, I had to call her back. Like I really wanted to hear about her fake policy…which I guess was a policy to give patients a hard time? Not sure! Regardless, I cut her off and said what time this afternoon. She ended up saying ‘I don’t like your attitude. Take her to urgent care.’ And hung up the phone on me.

That’s unacceptable and I hope you bring it to the Doctor’s attention!

I just wanted to let you know that I experienced a new treatment for Fibro. It has to do with emotional blockages, whether it be self esteem, fear, depression, anxiety,guilt, etc. The treatment includes magnets that release these blockages and these blockages can be in your liver, in your heart, in your gallbladder etc. All I know is that after wards, I felt happier and the next day (I had slept rather well too) I felt less pain when I woke up. I had so many blockages that we had to stop, it was like overload. it was pretty cool. My sister is a natropath, a healing quantem energy healer and she tried it on me. Unfortunately she lives in NM becasue I would like to try it again and again.
Has anyone else tried something like this before?? thanks

what a sad world we live in?????????and why??it is all about the money.

IT IS REALLY SAD THAT WE EVEN HAVE TO HAVE THESE DISCUSSIONS.AS FAR AS IM CONCERNED IT IS UNACCEPTABLE.I HAVE BEEN DEALING WITH FIBRO FOR YEARS NOW.ILL START WITH MY MOM WHO HAS BEEN SICK FOR A LONG TIME.WE WERE FORCED TO PUT HER IN A NURSING HOME AT THE AGE OF 58 YRS OLD.SHE IS A DIABETIC,HAD THRYROID CANCER,CUSHIONS DISEASE.I WATCHED MY MOM SUFFER FOR A LONG TIME WITH PAIN,SHE ENDED UP IN A WHEEL CHAIR.MY MOM STARTED TO FORGET THINGS,LIKE TAKING HER INSULIN.AND WHEN I WOULD ASK HER WHAT HER DOCTORS SAID,AND SHE SAID THAT THERE IS NOTHING THEY CAN DO AND TO LIVE WITH IT.BY THE TIME I STEPPED IN TO TAKE CARE OF HER IT WAS TO LATE.I COULD NOT BELIEVE HOW MANY PILLS SHE TOOK,AND SHE SAID THEY DID NOT HELP HER.WELL I TOOK HER TO HER DOCTOR,AND WHEN I STARTED TO QUESTION HIM ON THE MEDS SHE WAS ON HE WAS NOT HAPPY WITH ME,I TOLD HIM HE NEEDS TO GET HER OFF THESE MEDS AS YOU CAN SEE THEY ARE DOING HER MORE HARM THAN GOOD.HE SAID THE STERIODS SHE COULD NEVER GO OFF THEM OR HER BODY WILL SHUT DOWN,I DID NOT REALIZE SHE WAS ON THEM AT ALL.SHE KEPT TO HER SELF,AND DID NOT WANT TO BECOME A BURDEN ON US.SHE SUFFERED ALL ALONE.BUT NOW I GET IT,I HAVE HERINATED DISC AND SPINAL STENOSIS IN MY LUMBAR AND CERVICAL.AND FIBRO.MY POINT IS NO BODY UNDERSTANDS UNTILL IT HAPPENS TO YOU.AND I FEEL SO GUILTY ABOUT MY MOM.I ALWAYS SAY THE BEST MEDICINE YOU COULD GIVE ANYONE WHO SUFFERS IS UNDERSTANDING AND COMPASSION IN WHICH THIS COLD WORLD WE LIVE IN LACKS IT.HERE IS ONE FOR YOU,HER DOCTOR CALLED ME LAST WEEK AND SAID LETS STOP WASTING THE MONEY IT IS TIME TO GIVE HER COMFORT CARE.I WAS OUTRAGED,LETS STOP WASTING THE MONEYYYYY.HOW DARE YOU.I DID NOT REALIZE YOU WERE GOD,AND WHO ARE YOU TO MAKE THAT CALL.I AM NOT INTO MERCY KILLING.SHE IS NOT IN PAIN.SHE HAS NO QUALITY OF LIFE,BUT SHE SMILES AND STILL KNOWS WHO WE ARE.SHE WATCHES HER TV,I TAKE HER FOR WALKS WHEN IT IS NICE OUT.THIS DOCTOR IS OUT TO KILL HER.AND SO IS THE STAFF,AND DO YOU WANT TO KNOW WHY,

BECAUSE THEY DONT WANT TO DEAL WITH ME ANYMORE.I FEEL LIKE I AM HER DOCTOR,I GO UP 4 TIMES A WEEK TO MAKE SURE SHE GETS A BATH AND THEY GET HERE OUT OF BED.I DO NOT TRUST DOCTORS ANYMORE.I HAVE LOST FAITH IN OUR BROKEN HEALTH CARE SYSTEM.THE ONLY THING THAT KEEPS ME SANE,IS ONE DAY WE WILL HAVE TO ANSWER TO GOD,JUDGEMENT DAY WILL COME.AND SHAME ON ALL OF YOU WHO TOOK A OATH TO DO NOT HARM.I WILL NOT GO DOWN LIKE MY MOM DID,NOT WITH OUT A FIGHT,I WOULD RATHER DIE WITH MY SOUL AND DIGNITY.GODBLESS.

A few months ago my daughter (31 y.o) saw a rheumatologist due to symptoms and Lupus markers that were elevated. This physician told her he didn’t think she had Lupus, he felt she had Fibromyalgia. When she asked what it was, he wrote the word on a post- it and told her to “google it”. Needless to say that was the last time she saw that physician. She is now seeing another rheumatologist and is being appropriately treated for her Lupus. Google it, seriously!

I have Parkinson’s Disease (diagnosed 2007), seizure disorder (2008), and TIA’s (2011)….all of this is ongoing. I’ve been thrown out of more doctors offices than I care to mention. I got thrown out for asking a doctor to sign a disability document for school. I’ve been screamed at point blank range by a psychologist who kicked me out of his office after he told me he couldn’t help me anymore, faxed all my paperwork to another doctor, without my permission. Then when I was in total shock, I went to the bathroom by myself, in my wheelchair of course, I had an attendant, who didn’t help me. I seizured in the bathroom, and they pulled me out of the bathroom and called 911 (this was not my first seizure!) and that’s when I heard “hey, everybody come look at this”. I awoke from a tonic clonic to see this big ole doc screaming at me, leaning over me and yelling at me that I need to see a Psychiatrist. I was ready to leave TX until I met my wonderful Parkinson’s RN practitioner and a decent neuro, who graduated from Tulane University, LA. I’m a Christian, so I do pray every day, even for the ones who abused me. Because God don’t punish with a stick!
Sandy