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Why won't the doctors believe us?

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Fibromyalgia
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Posted 10/19/2009 12:17 PM (GMT 0)
Took my daugther back to the doctor on Friday to let him know that she is feeling much worse. He has her om Cymbalta and B12 supplement. It is not helping. The only thing he said was he thinks it is all in her head.  I thought she would cry right then and there. I was so angry. He feels the only thing wrong is she is stressed. I know she has alot on her plate right know however she has not for 4 years. These pains have been getting worse for the past 4 years. The sensitive is now all over her body. After I ask the doctor what do you do when she is in so much pain, just sit there and watch..... He did give me a referral to a Neurologist. That a start....
Posted 10/19/2009 1:12 PM (GMT 0)
Put yourself in their position. Examinations and tests show no results and no source of pain. Also remember that many patients will fake an illness to obtain narcotics, and fibromyalgia is commonly chosen for that due to the fact it's almost impossible to disprove some one has it. Due to liability concerns, many doctors don't feel comfortable prescribing more powerful drugs to fibro patients where there is often no way to prove whether they do or do not have pain. It's very frustrating, but hopefully you can appreciate their point of view.
Posted 10/19/2009 1:31 PM (GMT 0)
I do appreciate our doctors point of view. I am happy that he did at least run some test and the results were normal. I know it takes alot for the doctor to say he does not know what the cause of her pain is. I was very thankful for the referral. He did say if this doesn't work he will referral a different doctor.
Posted 10/19/2009 1:36 PM (GMT 0)
As a mother I can feel your frustration. It is good that he is referring you to a different doctor. I hope this next doc will have the answers for you.

 

luv and hugs

Marlee

Posted 10/19/2009 2:16 PM (GMT 0)
I am so sorry, It is more than frustrating when you have to watch your child suffer, and you
are doing everything in your power to help, without positive results.

Was your daughter just recently put on Cymbalta? I know I could not tolerate that med, it
made me dizzy and nauseous. I was later put on Savella with no bad side effects.

I am glad she will be seeing a neurologist. Did she have ANA testing to rule out any of
the autoimmune diseases. I have several of the connective tissue diseases and there are
some simular symptoms. Hoping the doctors can find a cause for your daughter's pain.

Hugs
Robin
Posted 10/19/2009 2:26 PM (GMT 0)
She has been on Cymbalta for about three months. She does have some side effectives. Mostly fatigue. I do not think the have done an ANA test yet. I will check with the doctor.
Posted 10/19/2009 5:47 PM (GMT 0)
I'm sorry your daughter is in so much pain. If you don't get answers from the Neurologist, you may want to try a Rheumatologist (many people see a Rheumatologist for the diagnosis of fibro). There are specific criteria for a fibro diagnosis and a doctor who is familiar with these might be helpful for you.

Please don't let the "It's all in her head" quote get to you. I think most of us with fibro have been told that in one form or another. Even if she does suffer from anxiety or depression along with her pain, they are treatable too, and quotes like that are never helpful.

My heart goes out to you. It's bad enough dealing with pain yourself, but as a mom, I know how hard it is to watch your child suffer. I applaud you for trying to get a diagnosis and treatment. Please don't give up. It often takes several doctors to get a proper diagnosis for chronic pain.

Hugs - Austen
Posted 10/19/2009 5:55 PM (GMT 0)

Melsmom, I'm not going to be as kind about your doctor as others have been.  We pay a lot of money for their services.  We hire them to help us.  They should be able to run nearly all the test necessary to rule out other illnesses.  They also should have some knowledge of fibromyalgia.  It's been around for years.  If they really don't know what is wrong, they need to voluntarily send you to a specialist.  If they can't do that, you need to find a doctor that will. 

This "all in your head" must be a phrase some doctors learn in med school.  What it really means is, "I don't have a clue what is wrong but don't want to admit it."  I had a similar problem with my daughter.  She is a thin woman.  She started vomiting a lot and losing weight.  She got down to 97 pounds and she is 5'7"!  She went to her doctor who didn't help her.  Then I suggested a gastroenterologist.  She did that and he ran tests.  His diagnosis?  "It's all in your head."  She came home sobbing.  She said she really was sick and no one would help her.  I personally think that because she was naturally thin to begin with, they thought she was bulemic.  She wasn't.  I did watch for that.  Anyway, I told her we had tried all doctors but the gynocologist so she made an appointment with my gyno who is great.  It turns out she had endometriosis!  She had outpatient surgery and put on meds and she has put on 25 pounds since she finally got the help.  

Don't ever give up.  You will get your answers if you are persistant.  Be sure your doctor is board certified.  I use an Internist that is board certified and also is a diplomate.  They have to take tests on all the new things in medicine every year in order to keep the diplomate status, I believe.  Internists have more education than general practioners. 

I'd find a doctor, also, that will work with you and your daughter.  If the medication isn't working, why is your doctor keeping her on it?  That makes no sense at all...especially for a young person.  The only reason we take medication is to help us.  It's not something we want running through our liver just for the fun of it.  Sorry.  I'm in one of my moods today.  I'm sitting here shaking my head.  

I'll put you and your daughter on my prayer list and I hope you find a doctor that will work with you and help you find your answers.   When they do, she will get the help she needs.  Let us know what is happening.  We really do care.

Sherrine    

Posted 10/19/2009 6:11 PM (GMT 0)
While the majority of docs are caring and committed to helping people, as in all professions there are those who are less dedicated than others. It's also the unfortunate case that conditions which are found predominantly in women are much more likely to get that verbal pat on the head and no treatment. I'm old enough to remember when a lot of things were thought to be "hysterical" because, after all, women were slaves to their hormones and lacked the inner strength to control their emotions.

That was also when virtually all doctors were men. How much easier to dismiss something then to study it if you know your chances of getting it are low to none?

I've gotten to the point where I tell the doctor what's wrong with me more often than he tells me. I've learned to do this by summarizing my symptoms, then saying "I'm thinking it might be ______ or maybe _______. What are your ideas? Most recently I went to the ophthalmologist and told him that I believed I had a blocked tear duct, which had been unsuccessfully treated as sinusitis three times in the previous year. After hearing the symptoms, he confirmed it was a blocked duct.

Remember, the doctor sees you at one point in time. You live in your body every day. It's really important to give a complete history and symptoms and work with your doctor for a diagnosis. Then it's up to the doc to let you work with him or her instead of trying to be God.
Posted 10/19/2009 6:27 PM (GMT 0)
I really do believe the doctor just did not know what else to do. He is just our family MD. He is a really good doctor I have seen him for years. He was just a stepping stone to get the referral. You know how insurance agencies are. No referral No pay.
Posted 10/19/2009 6:32 PM (GMT 0)
One of the worst things about fibromyalgia is the fact that it's used to explain so many ailments and issues. It seems that when a doctor has reached the end of their rope, one of three things happen. They'll either refer to some one else, tell you that you have fibromyalgia, or tell you it's all in your head. I mean, if you look at the symptoms of fibromyalgia, it's basically all symptoms of all diseases known to man, so if you have atleast one (pretty much impossible not to), guess what, you have fibro! I suppose it's a bit of a sore subject because I had an aunt who was complaining about lower back and abdomen pain as well as general fatigue. The doctor told her every time that it was a bad case of fibro. By the next year, her "fibro" was actually bladder cancer that had spread and become terminal before this idiot realized it. Anyways, it can never hurt to get a second opinion. I'd seen neurologists for years who eventually told me that my problem was psychological. Fed up with them, I went to see an anesthesiologist/pain specialist in my area who recognized the nerve compression, did one procedure, and I haven't had a fully-fledged migraine since.
Posted 10/19/2009 7:18 PM (GMT 0)
For diagnostic purposes, I am a big believer in extensive bloodwork, complete blood

counts, comprehensive metabolic panels, sed rates, thyroid and antibody testing.

Unfortunately there isn't a blood test to confirm Fibromyalgia, that is why it is so

important to rule out other conditions by doing bloodwork. Doctors should not presume

anything until all other possibilities are ruled out. It is challenging because bloodwork

changes. I know that is why it took forever to get my diagnosis. Not everyone with fibro

presents with the same exact symptoms. I had all the tender points, allover pain and

fatigue,migraines, muscle twitching and insomnia.

Having both fibro and MCTD, I saw many specialists to get a diagnosis. I do believe

that not all doctors are qualified to make a fibro dx and should refer their patient to a

specialist ASAP.

I will also pray for your daughter

Robin

 

Posted 10/19/2009 10:21 PM (GMT 0)
agree kitty.thanks for putting that out there i have an xcellent report with my doc i was so blinded by the fibro with everything else till he told me to list sx of all other things r what all was going on...he brought the fibro TO my attention...........BE WELL ......LYN
Posted 10/19/2009 10:41 PM (GMT 0)
I often wonder if some of the doctors don't want to deal with fibro so they make it look like it is all in our heads. Though my doctor has been really good about it. He really seems to understand. I feel very fortunate.

Hugs, Karen
Posted 10/20/2009 1:55 AM (GMT 0)
I am not so kind about doctors not believing their patients either. I understand there are patients who narco-shop, but they are much easier to spot than patients who are suffering for unknown reasons. My opinion is that, however well-meaning, when a doctor 'gives up' trying to fiind out what's wrong, it's time to find a new doctor. I am glad he referred you to at least the neurologist. Don't give up if that solution doesn't work.

I second trying to find a rheumatologist who can track blood test results over time, who can test your daughter's pain response over time, and track symptoms. Though fibro doesn't have its own blood test, it's a diagnosis after ruling out everything else; blood work will help rule out other illnesses. Good luck. I know how hard it is to watch your loved one suffer.
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