Lyrica is not the drug for me. I gave it a few months, and after some ups and downs, the bad outweighed the good. I only got to 150 milligrams per day, partly because my rheumatologist is conservative, and partly because I was reticent to take Lyrica in the first place.
Titrating down wasn’t fun, but it wasn’t the worst thing ever. I went through a week where I alternately felt like Lyrica made me wide awake and obsessive or knocked me out. The last two weeks, I’ve been down to one 50mg Lyrica per night, and every time I took it, I started feeling increasingly more like I was losing my mind. And it was that scary kind of mind loss—like the stories you read about where people are going crazy, but they’re still sane enough to know it.
Two nights ago was my last time taking Lyrica because of the unbearable psychological distress combined with a complete lack of effectiveness at relieving my fibromyalgia symptoms. I felt like I’d need a massive dose of Lyrica for it to be effective, but I also felt like I’d lose my mind entirely if I took the necessary dose. My memory had gone to hell, I’m certain my IQ had dropped significantly, and I felt like an addict. But the going crazy thing is what tipped me over.
Insomnia has plagued me for years. Sometimes my body (in whole or part) hurts too much for me to get comfortable in bed. Other times, my mind races and I can’t stop thinking about the herniated discs in my neck. Then I get so mad about not sleeping that the frustration keeps me awake. I was very worried about returning to completely sleepless nights post-Lyrica.
I bought sublingual melatonin at the health food store in hopes of sleeping somewhat normally. It tastes like orange-flavored cough syrup, but it helps some. I’m only trying 1.5 mg per night for now, but they had 10 mg pills. The first night off Lyrica and on melatonin, I didn’t feel crazy at all, and I even slept for 6 hours. The next night, I got less sleep, but I still didn’t feel crazy. And I’m gradually losing the tough case of the stupids that I’d gotten while on Lyrica.
Exercise-wise, my first day off Lyrica started with an hour-long run. My second Lyrica-free day included a 35-minute bike ride in a thunderstorm (fun, really), 15 minutes of modified Crossfit, and 20 minutes of low-intensity weightlifting. My neck has been sore constantly for several days, and my left hip and knee are tender, but nothing’s majorly flared at the moment. The harder I exercise, the better I sleep, no matter what hurts.
I’m continuing with a vegan diet, and am soon going to add yoga to my exercise repertoire because I’m ridiculously inflexible and unable to relax. I’m weening off caffeine, and one of these days I hope to give up tortilla chips and rice crackers.
I’m so tired of being on drugs. Even when they’re legally prescribed, pills make me feel beholden unto a toxic substance, which in turn makes me feel even less in control of my life. Fibromyalgia has already stolen so many of my choices, and drug addiction—albeit legal—is something I’m trying to avoid. And at this point, I think I’ve tried almost every drug anyway, and none of them work for longer than a few weeks. I’m so, so tired of prescription drugs and their side effects. After years of trying everything else, “vegan exercise fanatic and melatonin user” doesn’t sound so bad.
Reading your blog as an un-diagnosed “fibro” sufferer…I am a 35 y/o nurse-like most nurses, I avoid doctors until I’m nearly dead, and my grandmother has been my confirmation that I have this diabolical disorder. She has been living with fibro for years, and was first diagnosed when it REALLY was considered a “fake” disorder…a diagnosis for lazy, hypochondriacs who were trying for a disability check. Working in the healthcare field, I’ve witnessed so many snide, hateful remarks from physicians, nurses, EVERYBODY, about people with a fibromyalgia diagnosis. It’s one of the reasons I have had my head in the sand over admitting I have it. I have always enjoyed being active- water sports, rock climbing, hiking, kick boxing, LOVE dancing…and being a nurse is physically challenging, whether your a nurse who works in an office, or running mad on a floor-different challenges. It seems my desire to do these things have just disappeared, along with my healthy body! (I was running on a tread mill at 7 months pregnant.)
I have more bilateral points than are on the chart, but my right shoulder blade and neck are my worst points…I feel like I have been tied up and pulled apart. I constantly try and massage it out, and to hit a pressure point just right feels like an ice pick, pain shooting out from whichever spot I’m reaching…I’ve used the rolls, back massagers, stretching..even stones. (Keep a baseball shaped stone in my car, can wedge it behind my back at whatever point is bothering me at the moment, plus gives my poor hands a break)
COMPLETE INTOLERANCE TO COLD! And I live in ‘Bama, so I almost die, even in our tropical winters! I live off SUGAR. I crave it, and caffeine. I’m barely 115lbs, always have been lanky, and skinny. Then I get called a crack head,or bulimic, because folks see how much I eat and don’t gain weight.
Now lets talk about Brain Fog-
I have had a time management issue for most of my life, and people close to me have diagnosed me with ADHD, which could be true, as well I suppose- I’m not late because I don’t care about other people, or where I am supposed to be-it causes me GREAT ANXIETY. To put this in perspective, I’ve been let go from 3 jobs, over the last 8 years, 2 of which were in the last year! In the last year, this has grown to ridiculous proportions…causing problems with every aspect of my life, as you can only imagine. I have fallen asleep, sleeping through alarms, phone ringing, you name it- and it’s usually after being up, with the insomnia monkey on my back. I have had the entire world BURNING on my shoulders, and hearing you describe your experiences….the non stop thoughts, the anger, forgetfulness, DEPRESSION…I’m not saying I can give Fibro 100% of the credit for the complete derailment of my life, but I’m starting to realize what you did as well- if I don’t somehow find a way to rein in this THING, it’s gonna put me under…and I already feel like I’m suffocating!
I, too, used to get all kinds of unwanted interest in my eating habits. Like you, I was addicted to sugar and caffeine. I was 5’6 and 112 pounds, and people tried to convince me that I must be bulimic or drug-addicted to eat so much and be so small. Getting off clonazepam fixed my extreme need for massive amounts of food. After a six months of being clonazepam-free, I gained five pounds and ate fewer calories. Over the years, I’ve found that sugar and caffeine greatly increase my anxiety and muscle spasms. Going vegan about a month ago was a great idea. I eat way less processed sugar, and since I don’t like plant-based milk in coffee, I’m almost off caffeine. FYI, I also work in healthcare, and I hate going to the doctor. Honestly, I can relate to most things you said. I can’t advise you to do anything, but I can say this worked for me– vegan, no refined sugar, no caffeine. I’m not feeling great like I used to before fibromyalgia, but I feel much, much better. Those three changes have helped me way more than any prescription, and the only side effect so far is spending a little more time in the kitchen. Good luck to you, friend, and thanks for reading my blog.
I am considering getting off the Lyrica because I too am a health professional that had to take a disability because I could no longer function in the workplace. I was on serious narcotics and after years of feeling like a crackhead must feel I took myself off cold turkey! Now I take the Lyrica which also helps with my diabetic neuropathy but I can’t take this having to take medicine or my body will go through withdrawal I want off but don’t’ know what to do after that because the Lyrica does make life bearable and I can function though I am now on disability.My memory by the way is shot! Any ideas?
Devorah, Getting off Lyrica is serious business. You should definitely talk with the doctor who prescribed it if you want to get off it. Maybe he or she can offer you some alternatives. I don’t have diabetic neuropathy, so I don’t know how that feels. But in general, have you researched acupuncture and other naturopathic treatments? As with almost every ailment in life, I find that a healthy, organic diet helps everything. Best of luck to you, and thanks for reading my site.
Hello Thanks for the insight. I’m currently on 75 mg lyrica at night. Been on it for a year now and want to get off it. I really don’t know if it’s helping me. Will know only if I stop. But I’m so damn scared to stop. Recently started melatonin for sleep issues and wondering if it’s giving me stomach issues. I’m so confused. My plan was to use melatonin to get off lyrica. My main issue is digestion.
Make sure you talk with a doctor about getting off Lyrica. He or she may have a specific plan. Good luck!
I just started Lyrica for my fibro, now after reading this I am scared to continue. I didn’t realize I would be addicted to it!
My post is only about my experience. Your experience might be totally different! Hopefully Lyrica will help you.