12 Years of Akathisia with No End in Sight

When I was in my mid-thirties I was a single mom of a young son. I had just bought a small house after leaving my alcoholic husband when my baby was a little over one year old. I had lived with my mom for a bit while I went to school again and got a job. I worked full time and was doing really well for a single mother, but I was feeling depressed and lethargic. I told my doctor I was sure it was my thyroid. I'd had a cold nodule on my thyroid in my early twenties and had said many times that I thought my thyroid was an issue, as I had steady weight gain regardless of a healthy diet and lots of walking, almost an hour a day, and other exercise.

My doctor said my thyroid was fine, said I was depressed, and prescribed Effexor, a drug she said would not cause weight gain. It took a while before it felt like it was doing anything, and by that time I actually felt more tired.

Not too long after starting Effexor, my mom had a heart attack, triple bypass, and mini strokes caused by the arthritis drug Vioxx. This was August 2004. It was absolutely awful. Mom went into sudden onset dementia. So now I was a single mom, sandwich child, looking after a younger and older generation. I said to myself, "Thank God I was put on these meds before mom got sick." It never occurred to me that it wasn't just Vioxx that was harmful. Mom ended up moving into a home in the fall of 2011, meaning I really couldn't afford the new house I bought to look after mom in, so it was stressful.

But in 2011/2012 I discovered Reiki. Learning Reiki gave me coping skills, connection to spirituality, and connection to like-minded people. In 2013 I met the love of my life. In late 2013 I was feeling so much better, so I asked my doctor to get me off the meds that, by this time, I felt were doing more harm than good. My doctor had put my dose up and down trying to mitigate the side effects, which for me, the most concerning were dulled emotions and exhaustion. At one point I was well above the maximum recommended dose. Her solution was to bridge me from Effexor to citalopram. Once on citalopram I just stopped taking it per my doctor's instructions.

At first it all seemed fine. Then late in 2014 I started having pain. I felt bruised a lot. If my son jokingly poked me in the arm I lost it. It hurt so much. I got angry a lot. I couldn't handle my cats sitting on me. Everything started to hurt. By 2015 I was regularly late for work. I was always tired. I hurt. My neck and shoulders killed. I was miserable. Sitting at a computer all day hurt. I had multiple ergonomic assessments to the point they finally said there was nothing else they could do. I had no vacation time or sick leave left. At break times I had to scoot myself over to my cubicle wall and pull myself up to standing, then took several steps before I could walk upright. And the anxiety. I was having panic attacks, which I'd never had before. I was crying all the time from anxiety. I was anxious everywhere and becoming agoraphobic.

In May of 2015 I begged my doctor to put me off work. I was scheduled to go back to work several times. I spent up to 20 hours a day in bed that summer. In September of 2015 I tried to go back to work. I cried from waking until I got to the parking lot, where I turned my car around and went back home. My doctor wanted to put me on other drugs. I said they didn't help. She said to try Cymbalta, that it would help. I think I used it a week or maybe two, then called the doctor's office to find out if I could just stop taking it because it was awful. My doctor was on vacation for two weeks. I just stopped taking Cymbalta and suffered through a week of hell. I was literally having homicidal thoughts and was scared to death for two or three days that I was going to kill my dogs.

I ended up resigning from work so I could get access to money from my pension and because I knew I could not go back to that job. Work insurance (long term disability) ended in August 2017. I thought, okay, I'm going to get better eventually. I didn't. The chronic pain, fatigue, and anxiety caused me to self-diagnose with fibromyalgia after much research. When I realized I was not improving at all, I decided to fight to have my LTD reinstated and to try and get CPP disability. I was getting nowhere. I hired an injury lawyer. In the year and a half of representation I saw multiple pain doctors who corroborated my fibro diagnosis. I had refused the multiple supposed fibromyalgia drugs that were pretty much all psych meds of some sort being prescribed off-label. I talked to friends who tried the drugs with awful side effects and said, "No way." Both the federal government and the insurance company basically said I was not trying to get better if I wasn't taking drugs, thus not deserving of compensation.

I let my doctor put me back on Effexor. 37.5 mg, then 75 mg, then she prescribed 112.5 mg. I was having negative side effects of even worse exhaustion. I never went above 75 mg and took myself down to 37.5 mg. In the fall of 2019 I tried coming off Effexor. I thought I was going to kill someone by day three. I already knew by now that doctors had zero knowledge of anything that could help me. I started taking the 37.5 mg Effexor again on day four and luckily searched Facebook and found several Effexor withdrawal groups that night. One of them was so hugely knowledgeable and had so much research in the files that I realized I was drug-damaged. From reading posts I realized the fibro diagnosis was more than likely protracted withdrawal.

I was finally approved for CPP disability and got an insurance settlement in 2020. I followed the Effexor withdrawal groups for months while stabilizing on the 37.5 mg dose that my doctor called non-therapeutic, and she mocked me for wanting to taper, saying tapering was not at all necessary, even though by then I'd done tons of research and knew I had to taper. I started tapering in the spring of 2020.

Even tapering, there were suicidal thoughts and some very dark weeks where I did not think I would survive. It took three years to taper, and while tapering I realized that some of the Effexor groups were way too militant. I suggested that lowering the time between each taper might be better for some people because I found it much easier to only have two weeks between reducing the dose than four or six weeks. I got down to the last bead (those last ten beads were hard, I wish I could have water tapered) and stopped in February 2023.

Since then I learned that my worst and most crippling symptom, of the 40 to 50 I initially suffered from starting in 2014, was akathisia. Inner akathisia, for me. I have had it since 2014, and although I get periods of relief, any stress makes it come back.

I was unable to work from 2015 to 2023. In 2023 I got a ticket seller job at a local park. I have seven years of post-secondary education, was really rather intelligent, and had jobs working for municipal and federal employers and large national companies. But I took the ticket seller job because it had to be low stress. When I first started in 2023 I still had a fair bit of physical pain, but I'm mostly better now, except for physical issues caused by an imbalanced spine, not caused by meds but definitely made worse because of them. But the akathisia is still always there. The first two years of work I would cry most of the way to work because of the akathisia. Last summer was much better. Winters, six months of not working, are brutal because when I'm alone, akathisia makes it almost impossible to get anything done. If I'm busy I'm better, but if I'm alone it's very hard to get going and do anything because my brain won't stop panicking. Luckily I have animals that make me have to get up and walk with them and look after them. Walking is one thing that helps immensely. But because my mitochondria are damaged, my walk has to be moderate, not excessive. If I overdo walking it can make me crash again.

Twelve years of akathisia. Really not sure I'll ever be able to live a happy life again.