The Insanity of Antipsychotics for Fibromyalgia in adults

322px-Quetiapine-from-xtal-3D-ballsOK, I’m going to do one of those things I rarely ever do and take a hard stance on a recently published bit of reviewed research. If you’re a sufferer of Fibromyalgia, whatever you do, DO NOT TAKE THE ADVICE OF THE IDIOTS that wrote “Antipsychotics for Fibromyalgia in Adults.” Yeah. It’s that bad. I’ve taken to name calling. I think you’ll understand why by the end of this article if I do my job right.

“Antipsychotics for fibromyalgia in adults” actually only reviews one antipsychotic called Quetiapine (aka Seroquel) and compares it to an anti-depressant that’s been used for Fibromyalgia for years called amitriptyline. Most people with Fibromyalgia are very familiar with amitriptyline, so I won’t spend a lot of time on it.I spent a few years on it myself. More on that, later.

I’m also quite familiar with Seroquel. My husband and stepson have both taken it for their bipolar disorder. My grandmother also takes it for her schizophrenia and believe me, there are times my family has been very grateful for antipsychotics. If you truly have a mental illness with psychotic features, they can be truly life changing. They do a lot of people a lot of good, though I’d argue they get over prescribed as much as amitriptyline does to FMites. Of course if they aren’t meant for you, the dose is too high, or they simply don’t agree with you, they are some of the roughest medications you will ever take. How do I know this? I took my  husbands on accident. Twice.

The first experience was one I never intended on repeating a second time and if the little rat that lives in my head would properly keep the memory wheel moving that tells me which pill organizer is mine, I would have avoided picking up his meds that second time, too. After that, we started keeping our organizers in separate locations, because it not only took me 20+ hours of sleep to recover from his 300mg dose, it took 4 days before I could find my way out of the fog that is Quetiapine.

The reason this article infuriates me so greatly is that under no circumstances have I ever believed that my fibromyalgia or my ME/CFS was ever caused by the depression and anxiety I feel. In fact, I didn’t have anxiety or depression problems of any kind prior to getting these ailments. THE DEPRESSION AND ANXIETY CAME AFTER THE ME/CFS AND FIBROMYALGIA. Prior to falling into the moderate and then eventually severely ill category, I was a very active, upbeat kind of person, constantly on the go, highly organize, Type A personality. In fact, for the longest time I thought they were simply a consequence of my life being destroyed by these diseases until I realized they followed their own drummer regardless of what was going on. It took me a while to figure out that they were a consequence of the changes happening to my brain and the chemistry of my body BECAUSE of the ME/CFS and Fibromyalgia.

Of course it doesn’t matter how they came to be; we should get help for them, but what this review-and the studies it is critiquing-is implying, is that the depression and anxiety are the cause of our pain and fatigue-and not the effect-and that the Quetiapine would therefore fix the problem. BIG SURPRISE; IT WON’T! And yet, they insist on stating that Quetiapine

may be considered for 4 to 12 weeks to reduce pain, sleep problems, depression and anxiety in fibromyalgia patients with major depression. Potential side effects such as weight gain should be balanced against the potential benefits.

even after admitting that all four studies were of very low quality, did not include enough participants, were too exclusionary, and in comparison with the widely used amitriptyline

Both drugs did not statistically significantly differ in the reduction of average scores for pain, fatigue, sleep problems, depression, anxiety and for limitations of health-related quality of life and in the proportion of participants reporting dizziness, somnolence and weight gain as a side effect. Compared to amitriptyline, more participants left the study due to adverse events.

In other words, neither drug was anymore effective than the other, but the Quetiapine trial saw more patients withdraw due to adverse side effects, of which don’t even discuss. I myself have tried both amitriptyline and nortriptyline, neither with much in side effects, nor with any reduction to my symptoms. Frankly, they simply do not work for me.

At best, according to the review, some patients saw up to a 30% decrease in pain, though they don’t seem to be able to say this for sure since at best, there is a very  low quality of evidence.

To summarize, they are making a recommendation to use a highly problematic drug with many side effects based on very low quality results that can’t really be trusted for use over 1-4 months and this is supposed to help the fibromyalgia sufferer in the long term how exactly? Oh, they don’t say, because they fail to mention whether or not this short term therapy has any long term effects, so really we must assume it does not.

The whole thing leaves me scratching my head. Especially with my own experiences with Quetiapine. Why make the recommendation at all based on four studies which at best have VERY LOW QUALITY results? Is this really the kind of scholarship you want to rest your health upon? I certainly don’t and I definitely won’t be going to my doctor begging for Quetiapine or even another round of Amitriptyline anytime soon.

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8 thoughts on “The Insanity of Antipsychotics for Fibromyalgia in adults

  1. I don’t let people prescribe things for the CFS any more, but I hear your fury loud and clear. I have the same belief: CFS causes depression – how could it not, when it robs you not only of your body and your brain, but the attention of the medical profession as a person with an illness who should be treated with respect.

    I hobble on, doing the best I can with what I have, and using my small slice of ‘good’ time daily (good being very relative) to write. Why? Because I have things to say, and fiction is a very strong way to say them.

    But antipsychotics for people who are not psychotic is too much. These are the same people who refuse patients adequate pain relief – because non-patients abuse them for the buzz.

    I hear you. Well said. Sorry you tried these things by accident.

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  2. Hi Alicia, I really appreciate you taking the time to read and respond. I can also appreciate your stance on being treated by doctors for this condition as I have found only 1 that I can say has at least not done me more harm than good. All the rest have done me body terribly wrong with their ignorance. I’m doing better getting on by myself, though I’m determined to continue to try to find better treatments, no matter how. In the meantime, I hope we can help each other, which is one of the reasons I turned away from poetry and fiction to focus instead on this blog and my activism for the time being. Do come visit again. Maybe you will find a few ideas on how to turn your few good moments everyday into a few great hours as I recently have. I’ll be putting out a detailed post on it very soon! Gentle hugs!

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  3. Followed – I’ll see when you put out a post.

    I still think that fiction is critical for the world to realize what we live with. They won’t listen if they don’t have a character they care about, because it’s so easy to dismiss real people as somehow responsible for their own problems. You’ve run across that, I’m sure – “If you just ate healthy and exercised.”

    I’m working hard on book 2.

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  4. Absolutely, Alicia and I hope I didn’t sound like I was implying otherwise. Art of all kjnds serves a multitude of important and invaluable roles to a society that I often worry are becoming lost in our reality crazed consumerist society….. this is just the best way for me to do my part right now as the creative portions of my brain have been significantly affected by ME/CFS and I also have a terrible time managing the stress of the publication process, as I’m sure you can understand being familiar with those things and how this disease affects our grey matter and autonomic systems. I truly hope to return to it one day if such a thing is possible, but for now, it’s simply beyond me. I can’t tell you how long I had to struggle to accept that. Probably the hardest part of the disease for me, even over being bedridden for 1.5 – 2 yrs.

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  5. Those who can do one thing should do that. Those who can do another, should do the other.

    Fiction is my bag – it isn’t most people’s, so if I don’t write it, it may not get written at all.

    I was not implying that anyone else should write, but if they can read or have family/friends who can read long stories, fiction may be helpful. MAY.

    There is no ONE WAY for advocacy.

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  6. I just wish other ME/CFS people were flexible, too. I don’t disparage their valuable efforts, but getting someone interested in mine is a weird uphill battle.

    Probably because it’s such a variable illness. If I don’t match THEIR symptoms, I must not know what I’m talking about.

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  7. “THE DEPRESSION AND ANXIETY CAME AFTER THE ME/CFS AND FIBROMYALGIA.”

    A thousand times yes. I haven’t been on Seroquel, but I had a terrible experience being on Cymbalta for my fibromyalgia. It was so bad that for months after I quit taking it, I suffered without letting doctors put me on anything else. I was paranoid that everything was going to make me feel worse.

    At the time it was prescribed, the rheumatologist asked me if I was sad and cried a lot. I didn’t think saying yes was going to get me a depression diagnosis! Who wouldn’t be sad and cry when they’re facing pain daily and constantly losing mobility? Answering honestly was bad for my health in that case.

    One more lesson I learned the hard way.

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  8. Emily, I’m sorry you’ve had the same experiences, but it’s always nice to get confirmation from other patients about their experiences! I’ve continued to track my symptoms since writing this and speak with other patients. I know my depression and anxiety *are* organic as they cycle right along with the other symptoms that are part of my dysautonomia and they don’t always relate to how I’m feeling about things (or what I’m experiencing in my life), but like so many other patients I’ve spoken to, anti-depressants and these FM drugs either make them worse or do nothing at all (and not just for people with FM, ME/CFS or EDS either). I have found that as I’m healing the dysautonomia, the bouts of depression and anxiety are visiting less frequently and for shorter periods, so perhaps there is hope yet. I have also been hearing about a drug from some EDS patients called propanalol that helps them a lot with the anxiety portion. If you suffer with it, you might talk with you doctor and see if it’s right for you? I hope to be writing more on dysautonomia soon, too!

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