Why I’m Quitting Amitriptyline for Fibromyalgia
guest post by Boni Wagner-Stafford
I woke up this morning much sooner than I’d really like. Just ninety minutes after the last time I got up to pee and six hours after getting into bed. I’m best on between eight and nine hours’ sleep each night, but that’s not what I got last night, or indeed any night over the past three weeks.
I suppose this is to be expected, given I’m still in the so-called “withdrawal” phase of quitting my fibromyalgia-related sleep drugs. I’ve tried to quit before, but have never made it this long before collapsing back into the familiar, fuzzy and welcoming embrace of the meds that have been helping me sleep, really sleep.
Amitriptyline and Fibromyalgia
For fifteen years, I’ve been taking Amitriptyline at night for fibromyalgia, just 10 – 20 mg, to help me sleep. The day I was first prescribed Amitriptyline was also the day I was formally diagnosed with fibromyalgia. As I interview other “friends with Fibro” for the book I’m writing of the same name, I am seeing glimpses of how my response on diagnosis day was a bit different from others’. I’m hearing stories about profound relief, a long-awaited validation that something really was wrong, that it wasn’t all in their head.
But that’s not what happened for me. I was devastated. I think it was a little bit because I didn’t want to have an invisible disease, or syndrome, or disorder, or whatever you want to call it, for which there is no cure and therefore no relief in sight for my debilitating symptoms.
But I think I was devastated most of all by the Amitriptyline. An antidepressant! I was horribly upset that I — the optimistic, sunny, smiling, I-can-do-it-all person – needed an antidepressant. I cried.
This was not conforming with the picture of myself that I’d held for so long. Apparently I’d painted this self-portrait in blurry water-based hues of (what’s that favorite color of mine – fibro fog is keeping the name from me – oh yes) periwinkle and peach and plum. Maybe a bit of hot pink for an accent. This one flimsy refillable prescription with my name on it rinsed all of the carefully applied paint on the canvas of my life and I feared the only thing underneath was grey. Dull and grey. With smudges of deep crimson for pain.
But I digress. The point is that I’m quitting Amitriptyline.
Trying to quit. And while I still believe it really has been enhancing the quality and duration of my sleep, and personal experience has taught me the importance of good quality sleep as the foundation for healing and pain-reduction related to fibromyalgia, the truth is I’m tired of the downside.
Why I’m quitting Amitriptyline
Amitriptyline came with many side effects ….
- Like the sluggishness, in my brain and bone-marrow, that lasts the next day until noon, whether I take the tablet at seven p.m. or eleven p.m.
- The suspicious impact it has on my weight, which has been an issue and sore point for me my whole life, even those times when I achieved slim. I don’t need any help from medication in the “hanging on to weight” area.
- The cost: no, it’s not the most expensive medication in the world but it’s a regular monthly expense I don’t need right now when the focus of my life is frugality! (Frugality, and pursuit of my creative passion. Which is what I’m doing right now: writing.) Self-employment, at least my kind, doesn’t come with drug benefits.
- The unknown impact on inflammation in my body. And
- Urinary retention.
Amitriptyline and Urinary Health
Urinary retention. None of the medical professionals who examined me over the last decade looking for the cause of my recurrent urinary tract infections (UTI) ever made the connection between this fine-print side-effect of Amitriptyline.
But we’ve recently moved from Canada to Mexico, in pursuit of a lifestyle that would make it easier to manage my fibro, and it was my new favorite doctor here in Mexico that said, “You know that one cause of UTI is urinary retention and that urinary retention is a side effect of Amitriptyline?” No, I didn’t know.
I’ve suffered frequent urinary tract infections since my late twenties but they’ve been increasing in frequency over the last ten to fifteen years…do you see the connection? I thought a couple times a year was a lot, and so did my doctors, but in the last five years or so I have been getting UTIs between 6 and 8 times each year.
You read that right: six to eight times a year. Back at home in Canada, I’d had every medical expert conceivable poke, prod, X-ray, scope, scan and test all parts of me looking for the reason for this ridiculous frequency of infection.
No, I don’t lie around with a wet bathing suit on (actually a question one doctor asked me), I do get plenty of vitamin C. Yes, I shower before and after sex (yes, I’m still having sex, unless I have a UTI). Yes, I take probiotics daily. Yes, I use hormone cream. And yes, I drink plenty of water. And I’ve probably done or am doing or have tried whatever else you can think of to ask me, because believe me, I have been motivated to interrupt this disruptive cycle.
I’ve been treated so frequently for UTIs that I’ve developed allergies to two of the three existing streams of antibiotics currently available to treat UTI. I’m swiftly running out of options on that front. In a third attempt to treat one of my most recent episodes, I agreed with my doctor that it might be time to “get radical”: I undertook a ten-day course of self-injectable antibiotics.
Did it work? No, the infection returned less than three weeks later, but I do have a heightened respect for those who must daily self-inject to manage disease. It was painful. Not just during the injection. I bruise easily and I had large, colorful, baseball-sized lumps all over my lower torso for a couple of months afterward.
So these seem like pretty compelling reasons to give up those little blue pills, to ride out the sleepless nights, and to relish the return of full cognitive function in my suddenly-expanded number of pre-noon productive hours. I wrote this blog before nine a.m., for example. I’d forgotten what that feels like.
I’m embracing the fear of what might occur, of pain that might increase, and by quitting Amitriptyline I’m acknowledging that I just may be opening the door to resolution of some of my perpetually perplexing physical problems. Yawn.
Boni Wagner-Stafford was diagnosed with Fibromyalgia in 2003, following more than a decade of medical tests and examinations looking for the cause of myriad complaints. She’s author of the forthcoming book “Friends with Fibro”, a book for and about people who live with the chronic fatigue and pain of Fibromyalgia every day. Her blogs about Fibro can be found at www.bclearwriting.com/friendswithfibro. Boni is Canadian, a former award-winning journalist, now an independent writer and along with her husband John, lives and works on their 40’ sailboat Ingenium in Mexico’s Sea of Cortez.
Like you, no one ever linked my recurrent UTIs to the 10mg dose of amitriptyline I’ve taken for 25 years, for chronic fatigue syndrome and fibromyalgia. I decided to use the COVID-19 isolation time to get off the drug, as it’s now on the list of those that are affiliated with dementia. I’ve been totally off for about 2 weeks now, and there are ways I’m feeling terrific: mostly, waking up in the morning with more joy and energy. Yes, my sleep varies, but I’m older and wiser about things to do, other supplements to take. Yes, they’re more expensive than the ami, but don’t mess with my brain in the same way. I thought I was doing fine, then got a UTI, and have realized after a round of antibiotics that I’m experiencing urinary retention. It’s possible I’ve had it all along and that was what caused my UTIs, but this retention is much worse. Scary, given my UTI history. I’ve done some reading, and apparently going off antidepressants can often cause this, and it may be long-term. The shift in serotonin is believed to be responsible for this, as well as digestion changes that may or may not resolve. Right now I’m still determined to stay off it, but only time will tell if that’s possible. I can live with the idea of taking 5mg/night if I have to, but hope this will be short-term and my body and brain will heal.
I am so glad i found this post. I am on 25mg Amitriptyline for migraines. It has helped my migraines tremendously but in the 6 months I have been on the medication I have had back to back UTI’s constantly. I have tried taking D-Mannose supplements, which used to work the rare times I have had a UTI in my life. Nothing helps these UTI’s. I am throwing in the towel and coming off the Amitriptilyne. I am going to see if there is something else we can try. Thank you for making me feel like I am not crazy!
I hope it helps. Please make sure to talk to work with your doctor when coming off the med. It can be dangerous to just quit cold turkey.
I’ve quit amitriptyline because I went up 20kg. And I still was gaining weight. It was terrible but I slept as I never did in my whole life.
So the doctor and I agreed I could not handle it.
So I spent one year without amitriptyline. I began to loose weight, but I did not sleep for a whole year. I do not need to say that a person can not survive without sleeping. I slept about 15 minutes and then woke up. It was crazy.
I tried several sleeping aids and nothing worked.
So I was forced to go back to amitriptyline, but the minimal dosage. It is half of a tablet of 10 mg, so it is 5 mg per night. I can sleep for 3-4 hours with the 5 mg amitriptyline and I am not gaining weight.
It is not enough sleep, but it is a compromise.
How much were you on? The weight gain is a common side effect, especially at the higher doses. When I was first diagnosed I was already on 10mg with no issue, then as the issues started getting worse, my neuro upped the dose to try to help. I got up to about 50mg and then wanted to eat everything in the house. I gained 20lbs in 2 weeks.
Theresa Van Alstyne says
Keep in mind that not everyone’s reaction to a drug is the same. I have been on Amitriptyline for over 20 years also (since I was first diagnosed with Fibromyalgia) & I have never had a UTI in my life, nor any of the other side effects you mention. If I don’t take an Amitriptyline before I go to bed, I don’t sleep as well, but that is the only effect. I have gone periods without taking it when I was sick or had other issues going on but I never had any kind of withdrawal. So while it may have been an issue for you, I would encourage others to judge for themselves. It can be the one thing, like with me, that takes the edge off ‘just enough’.
All the research I’ve done on Fibro in women (like my Mom) is very connected with bladder and frequent UTIs. This is why Dr Armand thinks it’s a kidney dysfunction issue with the kidneys not being able to get rid of phosphates. Not sure I believe this but it is a frequent symptom of fibro and noting to do with Amytriptilline use. Just food for thought.
There are a lot of overlapping conditions with fibromyalgia. Unfortunately, none are 100%, so while there’s correlation, it’s difficult to stretch that to causation. Certainly, limiting and eliminating toxins from the body (both not taking them in and making sure that those that are taken in can be processed) helps.
Karen M. Roth says
I am only Amitriptyline at 100mg and I sleep for six hours with just the normal Fibro Fog. But I just retriggered my Closed Head Traumatic Brain Injury and now am losing my Vision and hearing. Since retriggering it I have hit my head nine more times. Just a Headache and a small puncture wound on my forehead.
Quitting the med cold turkey is not wise and can cause an adverse reaction from your body. Do stay hydrated.
Keeping you in my Prayers Hun <3