All In MY Head?

[vida_llevares]

Hi.

Have you ever been told by a doctor that the pain is all in your head?

 

[Megara]

Not exactly but I've definitely had them tell me things that totally inferred they did not believe me. It's so frustrating because these are the people we are supposed to go to for help and so many times I've left a doctors office in tears or just furious from their ignorance/arrogance. I've had a doctor say to me flat out that fibromyalgia is not real...needless to say, I did not see her again. Basically there are two options: ignore them, find out what works for you and do what you need to do to get it or keep searching for a doctor that fits your needs, I believe this page is starting a list of doctors specializing in this type of illness.

 

[1sweed]

Gosh vida,
Yes, many many times. I had doctors tell me it was because I must have had a fight with my husband. It was all in my head and I made it up to get pity and attention. I had a nurse once tell me to stop coming to the office and wasting the doctors time. I have been told that I had mental problems and needed to see a therapist. I went to one and was told there was nothing wrong with me, had to see a doctor. Round and around for quite a few years till I got good doctors and a diagnosis.

It puzzles me why you have these questions when you work for a organization that helps people with fibro? Are you searching for answers for someone else or for yourself? If it is for others tell us how we can help you? If it is for you, does your organization need more information on fibro?
We can help if you tell us what your in need of or looking for. Okay.

 

[GlumshanksGirl]

It was all in my head and I made it up to get pity and attention. I had a nurse once tell me to stop coming to the office and wasting the doctors time. I have been told that I had mental problems and needed to see a therapist. I went to one and was told there was nothing wrong with me, had to see a doctor. Round and around for quite a few years till I got good doctors and a diagnosis.

ALL of this is true for me as well.

I was also told that I was anxious and because I wasn't showing it emotionally my body decided to display it as physical symptoms. A bunch of hogwash. When doctors don't know the answer or are wrong, they will NOT fess up to it. They want to blame everything else, including the patient.

I was even told that I was faking my heart racing. How can someone possibly fake that? I had a heart specialist tell me "Whatever. Sometimes the heart just goes fast. Normal." No, not normal. I was FAINTING because of the severity of my symptoms and I have never known any of my "normal" friends who had this problem. Doctors are just too afraid to admit they know absolutely nothing about it if they don't. It's really a shame because it leaves us who are truly ill out in the loop with no help whatsoever.

Finally I found a doctor that cared more about me than the money. He had me on the correct medicine within ONE visit. ONE. I suffered the ridicule with my sickness for nearly 5 years, when all it took was one doctor to listen to me without interrupting me or rolling their eyes, for me to get back on track. I lost almost 5 years of my life to the ignorance of doctors. I know this is a rant, but it's really touchy for me, because I was such an active young woman before it really hit. (I even had a few doctors tell me I was just lazy).

Ludicrous, really. Something should be done about the way doctors handle patients.

And don't get me started on just normal people who so happen to see me have a bad day. I can't count the insults there.

 

[twiztc]

Glumshanksgirl that is similar to my story.

I was married to a disabled man and was his caregiver when I started having my own troubles. I had no clue what was wrong with me.
We both saw the same doctor and for some reason could not separate us in his mind. All my problems we're somehow my husband fault and I was just depressed.

I was on all kinds of meds for depression and panic attacks for years. Then hubby had a heart attack and in our minds due to some negligence of our doctor so we found a new one.
At last I was being seen as my own independent entity and listened to. That when he found I had a defective thyroid and was finaly sent to see some specialists who diadnosed Fibro.
I have been unlucky that the usual bank of meds don't work for me but at least now I know I'm not completely bonkers.

 

[Janet L]

A bad doctor can be like a bad headache, they never go away and they cloud your judgement. It's good you found a new doctor; it's impossible to make a clear decision when your doctor, the person trying to help your (or support to help you), is actually causing problems on top of problems. Talk about a mess, and something that happens to too many of us.

 

[lklemmer]

I have found a very good rheumatologist after a referral from a primary care physician. It is NOT all in your head and I am sorry you had to endure all the pain and rejection. Because it can't be seen and is subjective, many times- some practioners feel it doesn't exist. It has the same aspects as mental disease, just because you can't see it, it doesn't mean it does not exist! Many people don't have the same painful "points", as others. Mine are not "classic" but he has listened to me after all these years and together formed a plan which helps me. Try a new doctor, especially the Rheumatologists, seem to be the specialist. You are not crazy and it is not all in your head - you need to be anactive participant in your health care- keep going back. Many times it mimics many other diseases, so it is a matter of ruling out- RA, Lupus, Lymes disease ect.
somes one med works for someone, when it didn't work for me. I am on Cymbalta, it helps the "down in the dumps feeling" and I take it at night, so I sleep better.

 

[Yatte]

I get so mad at lazy doctors, who blames everything on some imagined emotional state. I wish they would consider their patients as a whole, not just a body, or just an emotional being. They get so focused on making money that ethics, morality, good bedside manners and the need to really help your patients and spend some time on them just flies out of door. It is so sad that some doctors believe fibro is a myth, even though the research are there to state otherwise. Teaching facilities should really spend more time on learning doctors to be humane, and focus on the problems, not just look for a quick fix or a way out it.

My poor sister had the same problem with an Orthopod saying she is lazy and the pain is all in her, only for her to be later diagnosed with fibro and RSD Reflex Sympathetic Distrophy. This started after she injured her knee in a tennis match and just would not heal properly. Her leg has atrophied a bit and she has no more hair left on it. It is also colder than the other leg. The psychological effects of doctors that kept telling her it is mental thing, caused her a great loss in her self image and she later started believing them. Just to be diagnosed as normal. The Psychiatrist referred her to a rheumatologist who diagnosed fibro and RSD.

Here is a link for RSD: RSDSA :: Reflex Sympathetic Dystrophy Syndrome Association

 

[Ruby]

My primary care physician took me seriously when I kept repeating I was in pain, but she was definitely out of her element. It wasn't until I saw a rheumatologist that I felt I was seeing someone who finally understood. It is most definitely NOT in your head and do not let anyone...physician or otherwise tell you so.

 

[Moxie]

I once "cheated" on my rheumatologist with a pain specialist who was recommended to me by a friend who suffers from a degenerative muscular condition. I brought my list of things to discuss and mention, she asked me to describe in detail each thing, and over time became increasingly more patronizing. My list is very basic. It reads like "Pain" "Fibro-Fog" "Lethargy" etc. After I got to the end, she said, I kid you not, "I see you've done your internet research. I'm sorry, I can't work with a fairytale diagnosis."

I was completely shocked because I'd filled out a questionnaire before I could even get an appointment that included my diagnosis and symptoms. When I got the bill in the mail, I called the office to tell them they would not be receiving payment, and why. I don't recommend doing that, unless you have it in you to fight something based on principal, but in the end they dropped it based on the fact that I HAD filled out the survey, and she shouldn't have accepted an appointment for something she doesn't treat.

 

[Libragirl67]

Fibromyalgia is is still a mystery disease. there are so many aspects of it that are misunderstood. And there definetly is not enough information out there. I think there alot of doctors out there who would rather dismiss a patient then to admit they just don't know. Doctors deal in science and fact. They do not operate under conjecture or hypothosis. So unfortunetly, until fibromyalgia becomes better understood. There will be doctors out there who just don't want to believe or understand what we are going through. But take heart, because there are alot of people out there who do understand you, and what you are going through.

 

[cnfisher1]

I have not personally been told this, but in my opinion do not listen to your doctor. If you think that you are going through pain then you probably are. This doctor is only making you second guess yourself and this is not good for you.

 

[CavaloBranco]

In many cases it is the nervous system that creates a lot problems where there is nothing, people just keep thinking they are sick and they are ok, the nervous system commands the body.

 

[dduhon]

Before I was hit by a drunk driver in 2000 and my injuries led to Fibro/CFS/PAIN I was a massage therapist in a Physical Therapy clinic. I saw patients with the same diagnosis that I suffer from now. Back then there was even less information about Fibromyalgia then there is now. I never doubted that my patients were in pain, but it was hard to chart for the insurance companies because you have to write "objective findings". Meaning what you can see or feel. With Fibro there's not usually anything that fits in this category. I think that's why the doctors find it so hard to understand. If it doesn't show up on an x-ray or blood work they seem to think its not real. It gets aggravating when no one wants to listen, but trust me it's not in your head.

 

[PegGinger]

TOO many times to count! thank God that I finally found doctors who don't! IT took me 4 doctors to diagnose me with Endometriosis,(female illness) they kept telling me it was all in my head.......thyroid(6 doctors)---all in my head--------chronic fatigue syndrome (its psychological--all in your head---you need psychiatrist etc)..........frustrating....don't give up---find a doctor who listens to you, and actually believes that you know your body---they may have the medical knowledge and experience, but it is YOUR BODY, and you know it better than a doctor.....the first doctor who told me that was Dr Matthew Manzo, now practicing in Pinehurst,NC. He said " it is an unusual symptom, and I don't think it is anything, but for the most part patients, especially women, Know their bodies better than me so if you think something is off or wrong, I am not going to ignore you.

I have been saying for years that something else is wrong with my body, why I hurt myself so easily......and finally have the answer, beside the Fibro and chronic fatigue, etc, I have hyper-mobility, which explains a lot.....so MOST LIKELY it is NOT in your head......find a good doctore who actually listens!and is good!

Peggy