Category Archives: Living with Pain - Page 4

Quack, Quack, Doc

I finally decided to go to the doctor again after I haven’t been in a while. I just get so sick of the attitudes some doctors have- and I can’t seem to find one without that attitude. But I’ve been feeling really bad so I bit the bullet.

The doctor couldn’t see me, so I was set up with his Nurse Practioner. That was ok with me because I see a NP at the Women’s clinic and that one seems like she might know more than the docs. I expected this one to be the same.

She comes in and says “You’ve been diagnosed with fibromyalgia.” No, I haven’t. The doctor said if we couldn’t find anything else out we’d test for that, but he didn’t diagnose me with it. She seemed confused. The doctor had written that diagnosis in my chart, but hadn’t told me he was diagnosing me with it. That’s what she said anyway. Ok, fine.

I asked her for some pamphlets to take home to give to my husband. He’s very skeptical, I tell her, and even accused me of faking my illness to get out of family dinners. The entire time I was talking to her she was typing away on her laptop. Was she recording my every word? I didn’t know, but it was disconcerting. I like when people look at me so that I know they hear what I’m saying. She seemed disinterested.

“We don’t have information on it. You should go home and look it up on the Internet.”

HUH? Did my healthcare provider just tell me to look up information on a diagnosis she just gave me, rather than tell me herself? Why, yes. That’s exactly what happened. Did she hear what I said about validating all this craziness to my husband? Apparently not. Did she hear when I said I’m frustrated with this crap and doctors annoy me? Nope, must’ve missed that part too. She didn’t even try to appear sympathetic. She just continued to tap, tap, tap on her keyboard.

“What are you doing?” I asked her. Maybe she was unconscious of the fact that she was giving her piece of hardware more attention than her patient. I thought maybe I’d shame her into turning away from that thing. I was wrong.

“I’m trying to figure out how to write this diagnosis. There isn’t a word for it.”

Double HUH? Really? There’s no word for it? Are you KIDDING? Unfortunately, no, she wasn’t kidding. She just told me I have fibromyalgia, but apparently she didn’t know there was a word for such a thing. Please, someone help me make sense of that. I was too tired to even make a fuss about the complete lack of sense this woman was making. I was planning my search for a new doctor as I sat there. Yup, there was no putting it off after this visit.

She tells me she’s going to put me on SSRIs. I say “No”. Then she said something about Cymbalta (I quit that, by the way), I said “Been there, done that. Can’t take it.” Then she went to consult with the doctor. When she came back she had a prescription for Vicodin. Apparently I’d been taking the Tramadol all wrong. Now I was to take the Vicodin whenever I was sick and the Tramadol when the Vicodin didn’t help. Then she told me she was going to set me up with someone who specializes in fibromyalgia. Cool. That works for me. Get me with someone who knows what the hell they’re doing.

I get called into the appointment desk (they have a relatively large staff here and one lady just for doing referrals and that sort of thing). The lady, I’ll call her Pat, is on the phone. She asks me what day I’m available. I tell her. She says “You have to see a counselor first.” A genetic counselor? “No, to get in with the psychiatrist you have to see a counselor first.”

The specialist was a psychiatrist. I was floored. I told Pat that I was only going to get treatment for fibromyalgia. Well, Pat doesn’t even bother to hide her irritation with me. She just kind of snorts and says “They don’t treat that at the mental health clinic.” Really? I would never have guessed! She goes on to tell me that my chart shows that I’m diagnosed with General Anxiety Disorder and she doesn’t know where I got fibromyalgia.

“The NP just diagnosed me five minutes ago.” I was too tired to even care. What a bunch of arrogant jerks! Here I was wasting my money to be told lies and be laughed at. I told her not to make the appointment, I’d call and do it myself. Then I left. I could have ranted and raved. But what would have been the point? They would have been validated in their dual diagnosis then and I still wouldn’t have quality care.

When I got home I called my insurance company and they gave me a number for a rheumatologist. I called the rheumatologist to make an appointment and they asked which doctor referred me. I gave them my PCPs name. They didn’t know any different. Right? So, I have an appointment on Thursday with them. They do treat fibromyalgia. And hopefully they take it more seriously.

I’ve read online that you should take materials to your doctor to help educate them. That a lot of doctor’s aren’t well read on fibromyalgia and may still think it’s a throw-away diagnosis. We as patients should inform them and teach them. I disagree completely. If my doctor tells me that I have an ailment, then my doctor should know what the hell he/she is talking about regarding that ailment. I shouldn’t have to go home and “look it up on the Internet” and then give them what I found. I pay the doctor to do this. I pay a lot of money. My insurance just jumped through the roof in June and I fully expect the doctor to be knowledgeable regarding these things. I think that if a doctor doesn’t know enough about a diagnosis to give the proper information then that doctor shouldn’t be diagnosing. He should be referring.

Today is Good

Today is one of the best days I’ve had in a long time, I think.

When I first woke up I was sore and a little woozy. I thought for sure it was going to be a bad episode day. So, I went researching to see what the hell is wrong with me. I found a lot of things that just made me want to poke my own eyes out. (Have you ever done research on your condition to the point that you just knew you were dying?) Then I made a decision that I really hope I won’t live to regret.

I broke out the Cymbalta. Back in August I wrote that my doctor wanted me to take SSRIs and I refused. He’d actually given me samples to try, because he wanted me to find a working dose for me. I didn’t like that idea because of my previous experiences with those types of drugs. He was very insistent that I take it and that’s the last time I ever went back to him. I almost threw the samples in the trash. Who knows why I didn’t. Anyway, today I took one along side my pain meds.

I feel a lot better mentally. I can still feel the nagging pain in my arms and hips and everything is still really stiff, but I’m clear headed. That’s what’s really important to me right now. I have a test tonight and Math class and I’m just so sick of these damned episodes. I’m willing, at this point, to pretty much try anything. I’m getting desperate, I guess.

If this stuff helps me focus I’ll deal with the other side effects. If it keeps that dastardly fog at bay it may just become my best friend. We’ll see how it goes. I’m still going to find a Rheumatologist because I do think my condition is autoimmune. I have symptoms of both Fibromyalgia and Lupus (and I just found out Celiac Disease… huh?). I’ve even read that it’s possible to have both conditions at the same time. Talk about a maddening combination!

At any rate, the Cymbalta seems to have helped a lot so far. I really do feel so much better today that I have in a long time. That’s something to be thankful for.

Now, if I can get through that Web Tech test tonight I’ll be good to go. Keep your fingers crossed for me.

Update:
I had to throw it away. I had vivid dreams and couldn’t sleep. Didn’t do much for my pain after all. And certainly didn’t do anything good for my level of focus. Oh well. On to something else.

Life in a Fog

BrainOne of the many symptoms of my mystery illness is the damned “brain fog”. It’s incredibly frustrating and, I think, the worse part of being sick. It’s worse than the pain, the stiffness, the damned rashes. All of it combined doesn’t hold a candle to the fog.

What is “brain fog”?

The term “brain fog” is often used by those suffering from chronic illness to define a cognitive dysfunction. Wikipedia specifically defines it:

Brain fog is a term for the “woolly” sensation of a physical obstruction to clear thinking in the brain, often extended to apply in general to neurocognitive symptoms experienced by many people who suffer from neuroimmune diseases such as ME/CFS, fibromyalgia, Lyme disease and multiple sclerosis, amongst others.

It can be symptom manifest of psychiatric disorders such as schizophrenia or bipolar disorder.

The term brain fog is also used often used to describe the relevant symptom or symptoms of inattentive ADHD or resulting from chemotherapy.[1].

Brain fog involves persistent or episodic cognitive dysfunction, and may be associated with forgetfulness, confusion, slowed thinking, distractability, depersonalization, the inability to remember the correct words when speaking or writing (dysphasia or aphasia).

Brain fog is so named because the sufferer can feel like a cloud literally surrounds him or her that reduces the speed at which things can be recognized or clearly seen. Brain may promote feelings of detachment (depersonalization), discouragement and depression.

Have you ever been so tired that you couldn’t think straight? Or had to wake up suddenly and couldn’t immediately get your bearings? That’s similar to what it’s like having a brain fog. For me there doesn’t seem to be any rhyme or reason for the occurrence. Every time it happens it’s like my left brain and right brain are refusing to communicate and I’m stuck in the middle.

Read the rest here.

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