Spinning my wheels with new medication

Following a difficult summer for me, I talked to my doctor about possible medication changes. She agreed and prescribed a slightly higher dosage of one I am already taking. I have written about how difficult the switch to this particular medication was for me, but once the switch was complete I definitely felt improvement. It is this medication that I will be increasing.

Except, of course, that nothing is that easy. My doctor, who sees me monthly, has decided to prescribe this to me. But my insurance, which is a big entity that doesn’t know me beyond the data points they have collected, is refusing to cover the increase in dosage. Without insurance this medication would be $521 for a month’s supply, so there is no way I can swing it. Fibromyalgia is not life-threatening, and there is no increase in my health that would make it worth it to sacrifice almost an entire paycheck to medication.

So now I wait. It has been over a week at this point. My wonderful doctor is advocating for me and trying to get the insurance to cover it. I don’t know what I would do if I didn’t have a robust care team. At the same time, my existing prescription runs out next week, and if this isn’t sorted out by then I’ll go through some unpleasant side effects due to withdrawals, making re-starting the medication harder on my body as well.

But such is the US medical system. Somehow a private company has a say in whether I get the care my doctor prescribed. The rationale they give is that this medication is not usually given at this frequency/dosage, but that just assumes all human bodies react the same way to illness and drugs. And while that may be true in certain circumstances, fibromyalgia definitely affects people in different ways. My body reacts to these drugs in different ways.

As an anthropologist, this also highlights to me the dangers of relying on just data points to make decisions about people. On paper, my doctor prescribing this dosage for me is outside the parameters of what “should” be done, and so it makes sense to decline the request. You plug in my diagnosis and you plug in the guidelines for the medication, and you arrive at a neat conclusion based on nothing more than that. But that does not take my individual experience into account, my year of trying another drug that did nothing to help my symptoms, my body’s strange and unexpected reactions to new drugs, the knowledge I have painfully gained that any change in dosage needs to be done gradually. This prescription is of an unusual dosage because my body behaves unusually. If I could exist as anything more than depersonalized data points to some distant corporation, maybe I wouldn’t be spinning my wheels, wondering when I will be able to try something to help my new symptoms.

I’ve had some advice on ways to speed up the process or get around the hefty price. That’s not the point though. I am already exhausted living my life, I don’t have the energy to call around asking for someone to please take pity on me so I can get the care my doctor says I need.

Learning about withdrawal

Long-suffering people with fibromyalgia probably know that there are only three FDA-approved drugs to treat it, and the cheapest one is Cymbalta/duloxetine.

They may also know that Cymbalta is really terrible to come off of, and its parent company has actually been sued by patients for not properly disclosing the risks and difficulties of Cymbalta withdrawal.

The symptoms match some of what I went through when I reduced my dosage in half a month ago, and are matching what I’m going through today on Day 1 of no Cymbalta for a year.

We’ll see how this goes!

Catching up by making the most of insomnia

My desk. I may be slightly unicorn obsessed.

This was my desk at 5:45 a.m. I’ve been up since 3 a.m. You can add “insomnia” to the list of side effects I started yesterday.

However, I only feel regular-sleep-deprived tired instead of fibro-fog tired, so I am using the opportunity to catch up on work I did not do this weekend with the help of my Chibi Star Trek cup filled with delicious Mauritian tea.

It’s not an ideal state of mind to delve into citizenship theory, but it’s better than nothing. I’ve learned to take the moments of clarity where I can find them.

The frustrations and hopes of new medication

First off, I am annoyed. I am unable to function well enough today to focus on anything, and so the pile of books I need to for my pre-dissertation work remains untouched. I also have many articles logged away in my citation manager, and it feels awful to KNOW I need to work but my mind just feels frayed, like there is a lack of connection between my two brain hemisphere. The most I could do today was finish up and submit an assignment for an online class.

What today looks like for me: my outstanding reading pile, trying to understand fibromyalgia, and keeping track of my medications and all their interactions.

It’s been almost a year since my diagnosis, and while medication and my own supplementing coupled with lifestyle changes have helped some, my doctor thinks I should be able to make better progress (and I agree! Being debilitatingly tired most of the time is not fun, especially when going through a rigorous academic program).

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