As I was sitting here, after coming home from work, I read an email a friend had sent me. I was appalled at the way people talk to one another! I simply couldn't believe that the person writing was a health care professional. I could be wrong, but I think that is what was said. (Monkey Girl I am talking about you.)
I have been diagnosed..(professionally, by a real MD no less..) of having Fibromyalgia, as well as mixed connective tissue disease. I have had all the tests, I take pain meds every morning and every night along with muscle relaxants. I pay my way, have health insurance, and a rheumatologist to back up my DX's.
I am so pissed off right now. How dare you sit in judgement on me? You don't know me. You don't know how sometimes I have to crawl to get to the bathroom in time to throw up. I don't smoke, I don't drink. I take only the meds prescribed and nothing else. I can't sleep for more than 3 hours at a time because it hurts so damn much I have to get up and move. I can't stop working. If I do, I am afraid I will simply shut down. I make myself get up and get out of the house. I am not on disability, I have no desire to be on disability. I want to be able to climb my stairs without hurting so badly that tears run down my face.
I want you to understand. But you have totally ignored what your job is. You should not be working in the health field. Your job is to help people and not to judge them. You don't have that right. EVER. I have never gone to the ER for fibro pain. HOWEVER, I did go to the ER for pain in my gall bladder, was given med and sent home. I then actually had to have my gall bladder out. Wow, how odd. The ER sent me home because they saw on my chart I have fibro. They didn't even run tests.
If this is you, and you treat your patients this way guess what. I am a business person. Medicine is a business and you are not a good business risk.
25 comments:
Hell, no doubt you've seen my comment about Fibro. I do believe it exsists, BUT I believe they drop that dx everytime they can't find a reason for the patients pain. My kid was told she had that, she doesn't she has EDS. Now you stated you have a conective tissue disorder, I would guess that's where your pain comes from or maybe both. My daughter takes "Elavil" spelling? It took most of her "nerve" pain away. Oncologists use it on their cancer patients also. I truely feel for all the true fibro patients, but I am leary of believing most since they always seem to have 12 other things also. Also keep looking, your doctor could be wrong, 4 of my daughters where.
Take care,
Becky
Hmmm if the doctor gives that diagnosis is that the fault of the patient?
Either way, you treat people like crap. That is an unacceptable way of dealing with anyone. It doesn't matter if they are wrong or right. Even if the patient coming to the ER is a drug seeker, they need help. Direct them to where they can get help.
As far as having 12 things wrong, you should do more research as fibro never presents alone. It always has sister illnesses such as Reynouds. Take your pseudo-appologetic attitude and give it to your daughter, have you ever considered she could ALSO have fibro?
I'm sorry that you are in pain, but what difference does it make if I believe that your fake disease exists?
I don't treat any of my patients badly, even the ones that I know are lying drug-seekers. That's why I have a blog. To vent. Deal with it.
Just like I have to accept that there are fake diseases out there for people to use as an excuse to do drugs, you have to accept that there are people that don't believe in your disease.
You're not going to change my mind any more than I'm going to change yours. The difference is, I don't go to fibromyalgia sites and pick fights with people.
My opinion doesn't hurt you in any way. Don't try to make it more than it is.
12 things = Mercury poisoning etc. THAT's what I was refering to. I've been to Fibro sites and forums. SOME believe their sniffles are fibro for shits sake.
I wasn't being nasty, take it anyway you want. I just know people who suffered for YEARS with a Fibro DX that wasn't true. They had other treatable problems. They lost valuble time.
Just sayin'.
The reason your opinion matters is that you work in healthcare. You should know better. You really have no clue as to what you are talking about. If you really feel the need to complain about something, at least pick something you know about. Perhaps the light up shoes from Walmart?
Fibro is the lazy mans way of saying that "I hurt". Most people have some pain everyday. Whether from being overweight, under-rested, overworked..whatever. I experience little bouts of pain myself, but dealing with the crap from all you chronic pain patients makes me sick.
Grow up, get a job, get a life, stay out of the ER. There are truly sick people, and you are wasting our time.
Your job is to help people and not to judge them.
Gee, looks like I won't need to work in triage any longer and my job will be much easier now that I don't have to render any sort of "judgment" on any subject related to patient-care. Takes a lot of stress out of my job. I feel like my IBS has been cured.
Guess you haven't heard that the doctor who identified the disease no longer believes in its validity as a legitimate diagnosis.
And all those tests consist of "We've done all this stuff and still can't find anything tangible wrong with you. Must be fibromyalgia, then."
I work in emergency care also. And I don't judge people.
Just because I don't triage the chronic fibromyalgeur as a higher priority than the woman with severe abdominal pain dosn't mean I'm judging their condition as less worthy of care.
Just because the doctors don't take a claim of fibromyalgia at face value and hand out narcotics willy nilly to everyone who wants them doesn't mean the doctors are judging them either.
It simply means that a medical professional with more knowledge than your limited focus on your own pain has deemed someone else's condition to be more of a priority than yours.
But you wouldn't know it from all the indignant screeching I hear from fibromyalgeurs who demand their narcotics now, even if I have to interrupt the care of the MI patient in the next room to do it.
And that is what most of us, including Monkey Girl, dislike about the people we encounter who claim to have fibromyalgia.
There's a reason that so many people in the medical field don't believe fibro is a real disease. You know what the most effective class of drugs we have to treat fibromyalgia? You guessed it, anti-depressants/anti-anxiety. That doesn't encourage us to consider it a real somatic disease. There has also been great success in using anti-seizure drugs (Lyrica anyone?). Have you tried any of these alternatives to pain meds or muscle relaxants? I don't mean that part as condescending, I'm honestly curious.
You also have to understand that no research has found anything significantly different between a fibro patient and your average Joe off the street. Medicine doesn't like stuff that a) can't be explained and b) lots of people use it to get narcotics. Its unfortunate that for every 50 seekers a person in real pain (whatever the cause) gets overlooked.
I am still seeing the consistant, "Fibro in the ER patient." I have never ever been to the ER for fibro pain. NEVER. I totally agree Fibro is not a life threatening emergency. I have been to the ER when my pain level exceeded or was different. I had an infection in my gallbladder but was dismissed due to the fibro in my chart. That isn't fair. What I am saying is this...
I do know people who take MANY medications for thier pain. I agree some of those people may have something other than or with fibro. I have a few ailments with my fibro as well. However, I hurt. Yes many of you hurt as well. Do you have to budget your energy and pain so that you can get through the day? I have to decide whether to take a shower or fold clothes. I can't take a shower and wash my hair and fold clothes. I cannot hold my arms up that long. They begin shaking and are weak. I become exhausted from four hours of work and I KNOW I am not working as physically hard as any other woman my age. (almost 40) Am I fit? No. I have never been fit. Am I morbidly obese? No. I have always, my entire life had this pain. I have always felt this lack of energy. It became much worse after childbirth.
It is really frustrating when you assume that all fibro patients are looking for a drug. I am looking for answers. I know that there are some doctors looking for answers, but most are, like you, simply treating the pain. Dammit. WHY am I in pain. Don't just treat the flippin' symptom.
I know that there is an imbalance in the system somewhere. Either in neurotransmitters or hormonal. It will take more research. How are we supposed to get doctors to do research if you all think we just want drugs??
I am doing research on Sensory integration disorder and the possible connection to fibro. My son was diagnosed with this and has some real physical issues to deal with because of it. How much of this is allergies? How much is a nervous disorder?
I simply ask that you all take me seriously as a patient. IF I come into the ER it is because I consider it an emergency. I am willing to wait if there is a more emergant case. I don't want drugs. If you find nothing wrong then tell me you find nothing wrong. Plain as that. But take the time to check if you can, because just as you don't know a panic attack from a heart attack without checking, you don't know if what we have going on is something different.
I don't want to medicate my pain, I want to solve the problem. Perhaps that makes me different from the "fibro" patients you deal with, but I suspect you don't really deal with fibro patients. Could working in the ER have jaded you to the point that only people with ABC problems matter? I agree they take priorty. But there are other issues in this world as well.
"I have never ever been to the ER for fibro pain. NEVER. I totally agree Fibro is not a life threatening emergency."
Then why have you started a blog solely to castigate on ER blogger? Can't you grasp that people like *you* aren't the ones we're bitching about?
Or does the mantle of fibromyalgia automatically require solidarity with chronic drug seekers simply because they claim to have your disease?
How do you know if they do or don't have fibromyalgia, or what is wrong with them if you judge based on seeing fibromyalgia on thier chart? That is the point I am trying to make.
I could not care less which blogger made the comments, simply that there are such people in the medical field is so overwhelmingly dissappointing. As far as "creating a blog" I chose to write what I felt as well. I don't intend to use that spot solely for the purpose of discussing her post. I would like it to be more than that. It just happened to be the post that came first.
As far as me not being the one you are bitching about. Are you sure? What if I have to come to the ER? Would I get the same treatment you would give anyone else? I doubt it. I have already experienced the discrepancy in treatment.
"Then why have you started a blog solely to castigate on ER blogger? Can't you grasp that people like *you* aren't the ones we're bitching about?"
I totally agree with AD. It's as if someone read a rant about abusive parents in the ED and then started a blog to deny that every child brought into the ED did not suffer abuse and MG was prejudiced against parents.
Get some perspective. Everything is NOT about you. Just saying.
I'm not in healthcare. You'd know that if you read my blog.
I am in healthcare. I can differentiate between a drug seeker and someone who is truly in pain. Most of us can. How do we do that? Well we can start with your list of allergies. If you are allergic to every non-narcotic made and most other narcotics and the only thing you are NOT allergic too is your fix of choice. Er I mean Diluadid. "It's the only thing that makes me feel beter". That would be clue #1 in the clue file. Then there is the "I'm going out to smoke,eat, have a soda, talk on the phone ect" But the pain is 10. Clue #2. There are so many others. Vitals don't change but pain is supposedly the worst they have ever felt. They sign out AMA after receiving said fix. I could go on and on. They are not talking about YOU. They are talking about the ones that come in EVERYDAY or a few times a week and we all know them and their conditions by name. We are human and we get beat down all the time. A person can only take so much. She has every right to vent just as you do. Don't judge her or us by the fact that we need to let it out.
None of this would be a problem if drugs were deregulated & decriminalized, like most other (unfree) countries. You wouldn't have to go to the doctor and make up a bunch of crap about how much it hurts. You could walk into a pharmacy, like a free person should be able to do, and buy whatever you feel like buying for whatever condition you think you might have.
The problem here is not fibromyalgia and whether or not it's fake, nor is the problem Monkey Girl or Ambulance Driver saying that fibromyalgia is BS. The problem is government regulation which, by depriving people of their freedoms (the very thing our benevolent government was NEVER supposed to do), causes "free" people to start sneaking around the government (acting unfree). It also causes nurses and doctors to start acting like the Gestapo, trying to detect whether or not someone is lying about their condition and deciding whether or not that patient can have their precious drugs. Why would "free" patients lie about their condition, and why would "free" nurses feel like they had to police them? We ain't free.
Decriminalized & deregulate drugs, and let Natural Selection sort people out.
Fibromyalgia. Bored, undersexed white woman's disease. Boo-hoo-hoo.
I'm not a medical person, I've already said that. I wonder has your Rhuemie order set (spelling?) rates etc. on you? The weakness you are feeling could be from many drugs prescribed for blood pressure etc. Have you seen a Nuero? I'd start there.....keep looking.
Evil Lunch Lady,
I have had so many sed rate tests it isn't funny. I had a doctor prescribe Metformin, Crestor, Levothyroxine, Tramadol, Flexeril.
I took the Metformin but it didn't help my blood sugars. (I don't eat sugar much at all.) My sugars seem to always stay at around 110 until I eat then they go to 160 and back down. I know I am at risk for diabetes and have approached my diet differently this last year. Nothing seems to change the b/s readings.
Crestor made me really really sick. I did end up going to urgent care from this. My liver was damaged and now is showing signs of repair. My liver enzyme tests are almost back to normal.
Levothyroxine I have been on for years. It helps.
Tramadol, I take one in the morning and one at night. Flexeril I take one at night. Those help tremendously.
I exersize by walking. I can't lift weights at all per doctors orders. He doesn't feel I am well enough. He said something about muscle memory and fibro patients. I need to ask him to explain that.
My doctor won't refer me to a neurologist.
That is where I am sitting right now.
I'm going to go out on a limb here, but people are judgmental, no doubt about and life isn't fair. You have this condition and you know biases exist. If you chose to use this blog to educate people about your particular disease then fine. However, complaining that people aren't treating you fairly isn't very useful or good reading.
I read monkey girl and AD's blogs because they educate me, a soon to be nurse. They whine as well but they are usually interesting/funny whines.
I did find this last comment about which drugs you have tried interesting and I would like to learn more about the original doctor who first dx fibro changing his mind about it.
This blog causes me pain, doesn't it make you worse Busymom?
Maybe focusing on positive things or a hobby would help. I bet this sucks a lot of your time an energy, which you say you don't have very much of in the first place.
You opened a Pandora's box with the health care blogging community. Now we get to tell a fibromyalgia patient what we REALLY think. And no narcotics are needed.
Stop identifying your existence with a "diagnosis."
If it makes you feel better, go ahead and tell me what you really think. I am really busy right now and I may not get back to you right away. I had to laugh at the way you put me identifying my existence with a disease. The only time I talk about fibro is on here. I am a homeschooling mom. That is how I really identify myself. I love it and my kids. You can try to put whatever tags on it you want, but I happy in my life except for my nagging pain. Oh well.
offer buprenorphine .... you in health care will know what that means to addicts! mommylady, get on with life
worsenurse
Busymom,
I have a blog dedicated solely to my Fibromyalgia. My very real Fibromyalgia! I found a link to your blog while on Wellspring. I am appalled by some of the things I saw written on that sight claiming that Fibro is not real! People like this are what sets Fibro back so much.
Several conditions overlap & have the same symptoms as Fibro. It can be hard to diagnose & there are so many people who are misdiagnosed. Believe me, I have been through so many invasive tests to rule out so many things.
Check out my blog. Don't listen to the idiots. They will believe that pain is real when they end up with it one day.
I do have to say though...the meds that you described in your comments near the bottom do not make sense to me at all! None of those drugs would help the Fibro at all.
Oh....and testing your SED rate would not show anything for Fibromyalgia. Fibro is not a disease with inflammation. Lupus & RA would show up in a SED test, but not Fibro.
I'm researching the fibromyalgia debate for a paper and I've read a lot about both sides. I don't yet have an opinion either way.
But I have a question.
The fibromyalgia community seems very firm in demanding that it be labeled a 'disease' and not a 'syndrome'. As far as I can tell, there is no difference in care arising from this distinction. Why is it so important that it be called a disease?
thank for for your insight-
seras
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