Old 10-23-2015, 09:06 PM #1 (permalink)
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Default Did my doctor really just say that?

So I just moved to a new location which meant that I had to find a whole new set of doctors and it has been painful, a different kind of pain from the flu-like achy all over electric nerves on fire whole body pain. This is more the - want to pull my hair out, scream, be belligerent but biting my tongue for the love of gawd kind of pain. I think many of us come across these situations with doctors and I thought maybe we could share them here to vent the nonesense, insensitivity, incompetence we deal with.

A few days ago I went to see my PCP for the third time after we've done a lot of blood work to find..nothing substantial. I addressed my concerns about having severe chronic fatigue for the past few months and asked her if I might have CFS. Her response, "I don't believe in labels. I don't believe in labeling things like CFS and Fibromyalgia. I think there is a reason for all your symptoms, have you considered seeing a behavioral therapist here?"

OK, wtf are you suggesting? Just because you can't figure out why I'm having all these symptoms doesn't mean that the root cause of all these symptoms are psychological. If you don't know, you simply don't know, just own it, don't blame the condition on your patient! Ugh. Sorry, just gets me so mad when doctors lack integrity.
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Old 10-23-2015, 11:31 PM #2 (permalink)
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Default Re: Did my doctor really just say that?

So tell me dancingwithfibro,
Where did your doctor get her degree? I mean really? "I don't believe in labeling things like CFS and Fibromyalgia." ? First of all, you have to label diseases so you can recognize them by what you've learned about them. what their symptoms are, how they work, and how to cure and/or treat them. Its basic science!

Now, saying that, please don't hate me for what I am about to say. It is merely another theory, yes? I have spoken to a psychiatrist during a 1st-time-to-meetya meeting. He said, "... back before anybody really knew much about fibromyalgia, before it was a thing, he wrote his thesis about how fibro and traumatic or emotional events are connected. So blame him! lol

But really, it intrigued me, bc I lost my dad at 8 mos old (mom now unemotionally available), was molested by grandfather at 13 (and told by my mother that we can't say anything bc it would crush my grandma's heart - only 4 decades later could I ask myself, "What about my heart?"), bullied by 2, then later 3 people that I worked with, or rather tried to work with. We all have our bag of shtuff we have to carry. So why do some people develop fibro but not others. Are all people with fibro, highly sensitive people? Does our gift of sensitivity come with the heavy hand of fibro? or only to those of us who did not learn to deal with our sensitivity as another kind of normal?

I haven't been to see him yet. Its been about a year since I first met him. I don't know why. Sounds like hooey maybe. We just cough up the stories to make it fit? So what then?
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Old 10-24-2015, 12:36 PM #3 (permalink)
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Default Re: Did my doctor really just say that?

Does she believe in labeling migraines, or would she also refuse to diagnose the patient? Because no one really understand the biological mechanism for a headache. There is no blood test to objectively diagnose headache.

Some doctors are just bad problem solvers. Instead of looking at what's in front of them, they follow a script. And if the script is biased against the patient or the patient has a condition that is not covered by the script, woe to the patient!

Back when I first had sinus infections recurring every 6 weeks, my PCP kept telling me it was because of allergies. Every time I got an infection he would change his instructions slightly and say, there that should take care of it. I finally asked him, shouldn't we find out what I'm allergic to? He shrugged his shoulders and said it wouldn't matter because it would just be something that's everywhere anyway. I told him I had pets at home and I needed to know whether I was allergic to them. Very reluctantly, he authorized the referral. Turns out I was allergic to grass pollen, which is only around in June and July. So then when I met with my PCP again he said "See? It's allergies." I asked him how I could be getting sick from allergies all year long if I'm only experiencing allergies in the summer. He couldn't answer but he just stuck to the script - it's allergies.

Luckily I have not run into the same kinds of issues with fibromyalgia - so far...
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Old 10-24-2015, 01:53 PM #4 (permalink)
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Default Re: Did my doctor really just say that?

Cheryl, you are speaking to my heart! I want to give you a warm hug. My father died of suicide when I was 2 - it's extremely difficult sharing this online as it's been the family secret that noone speaks of, and I just don't want it to be a shameful secret anymore. It's not my shame to carry. My mother was unable to cope most of her life and was in and out of mental hospitals. I was adopted by my aunt and uncle at 8, and 2 decades later I'm finally able to own my feelings without guilt that they resented this obligation and I felt it everyday in their home. I guess this is why I get so upset when doctors assume that my fibro is due to my emotional trauma and that if I just see a therapist, it'll get better. Because I've been working very hard on it in therapy, I've had a therapist most of my adult life. So it guts me when they try to blame this on me not working on my emotional health, because that's one area that I've worked very hard on consistently.

What's interesting is that fibro didn't hit until the physical traumas of chronic back pain and eventually 2 back surgeries. Fibro came right after the 2nd back surgery. So if I didn't have the emotional traumas, would I not have fibro? I don't know. Noone does.

I too wondered the same thing.. are all people with fibro highly sensitive people with traumatic emotional past? You have gone through so much and although everybody has their bag of shtuff, not everybody has traumatic events. But then people who do had traumatic events don't all have fibro. Or is it a combination of emotional and physical traumas that triggers fibro?

I understand your reluctance to see him, it would just make me feel like a subject to support his case. So what then? That's exactly how I feel, I can't change my past, I've been in therapy, so what then?

I'm changing my PCP.
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Old 10-24-2015, 03:31 PM #5 (permalink)
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Default Re: Did my doctor really just say that?

Dancing with fibro,
I have been in therapy for most of my adult life too. It helps but even with insurance there is a co-pay and that would be twice each month. I have invested a lot of $ in my health. I passed a milestone yesterday at the oral surgeons office. I had to fill out a form. They always ask you to rate your health. I always put fair. Yesterday I had to write POOR. It was a sad moment that surely put me in my place. I want to go back to a psychologist but it's extra $ we don't really have. It's always our mental health that we deal with last bc of the silly stigma attached.
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Old 10-24-2015, 03:40 PM #6 (permalink)
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Default Re: Did my doctor really just say that?

I know. When all else fails, blame the patient. I just kept firing doctors until I got one who believes as I have come to believe, that the answer really does lie in my own ability to heal myself.
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Old 10-25-2015, 01:53 PM #7 (permalink)
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Default Re: Did my doctor really just say that?

Hi fullerh,
Welcome to the conversation. So you believe in "physcian heal thy self". Our attitude definitely makes a difference. My sister in-law had a benign brain tumor. It took the Dr 9 hours to remove 90% of it. The other 10% was unreachable. It very slow growing and it's in the skull rather than on the brain so they're leaving it. All thru this ordeal, she was cheerful. But she didn't have any pain. I think it's difficult to show a bright and cheery attitude when the pain levels you experience are at 6 out of 10 or higher every day.
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Old 10-25-2015, 06:34 PM #8 (permalink)
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Default Re: Did my doctor really just say that?

lol DK, my point exactly! What kind of doctor doesn't believe in diagnosing their patients? It's absurd.

Your PCP doesn't seem to know what he's talking about either. haha That's very interesting that you mention allergies tho. I went to a naturopath recently that told me a little more about those allergy tests. So apparently there are different levels of allergy tests (ie. IgG, IgA, IgE, etc) From what I understand, the allergy tests that are approved by the insurance companies are very immediate level, meaning we're exposed to the agent, and we see a reaction within minutes in hives, itching, etc. The IgG and IgA tests find allergies that take a little longer to surface, weeks to months, and they build in our system over time. It can manifest itself to itching, upset stomach, inflammation, pain, etc. These tests are about $300 out of pocket and often not covered by insurance companies. When you mentioned the allergy tests, I wanted to share with you what my naturopath tried diligently to explain, but I think I only got a fraction of it. It could possibly help you find the triggers for your mirgraines?
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Old 10-26-2015, 12:04 AM #9 (permalink)
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Default Re: Did my doctor really just say that?

You are right, the allergy test they used is basically a scratch test on the skin. They look for immediate swelling, which is caused by IgE. This is the test that showed I am quite allergic to grass pollen.

After my dr showed such terrible critical thinking skills, I switched PCPs. My new doctor referred me to allergy/immunology again, this time for a more detailed consultation. After I explained my history to them, they tested my immune system and found out that I don't make any IgA at all. It is a genetic defect that affects about 1 in 500 among people of northern European descent and about 1 in 20,000 of people from any other ethnicity. I've been retested many times over the years, and my IgA level is always undetectable. My other immunoglobulins (IgG, IgE, IgD, etc) are all just fine, though.

Knowing about my immune deficiency has made a huge difference. A big reason the sinus infections kept recurring was that treatment with antibiotics has to continue longer than normal or the infection will come right back because my immune system is less effective than normal. Now I only get infections a few times a year, usually as a secondary infection after a cold. If I can't wash the infection away with nasal rinse I get treatment right away. Once treated, the infection stays gone. And then I eat a lot of yogurt

When I was being diagnosed with fibromyalgia, one of the things my rheumatologist tested me for was celiac disease. This test is usually done on IgA because it is so plentiful in the digestive tract. In my case she had to run the test on IgG instead.

I've heard of the tests you're talking about - I know people who have been helped by them. In fact Ginevra Liptan (a doctor who has fibromyalgia, treats fibromyalgia and wrote Figuring out Fibromyalgia) says this test helped her manage her fibromyalgia. I'm not sure that I would have valid results, though, because of my abnormal immunoglobulins.
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Old 10-28-2015, 09:18 PM #10 (permalink)
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Default Re: Did my doctor really just say that?

Unbelievable! Last I heard there were 14 million people with fibromyalgia in the world. What the heck is up with that doctor?! I personally don't have the time or desire to teach my physicians about fibro. If they can't hit the ground running I keep looking. Interestingly enough my mother also has fibro....even though we still face ridiculousness on a daily basis listen to this.....20 years ago she actually had a doctor tell her there's no way there could be that many things wrong with her. She left feeling demoralized. Let's face it...we stump the medical community. May new breakthroughs be on the horizon!
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Old 10-31-2015, 03:04 AM #11 (permalink)
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Default Re: Did my doctor really just say that?

Good grief! There are some doctors out there who continually prove that it is only a MEDICAL PRACTICE.

How about the retired neurologist running for the US presidency? He openly, without prompting or questioning, admitted on national television that he tried to kill another kid when he was the age of 14. WTF? Do we want this guy for president of the United States? Doesn't sound like he makes good decisions and I'm not talking about his admission. I'm thinking, "Was that a good decision to just tell everyone voluntarily?"

Didn't mean to get political... just saying.
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