I may not talk about it often but I am one of almost 10 million people in the United States with an illness many people can’t even define; Fibromyalgia. In fact wordpress doesn’t even recognize it as a word so it’s underlined in red as I write this. It wasn’t until I became pregnant that I realized how important it was to start taking really good care of my body.
Somehow having someone else depending on my body’s well being made it incredibly obvious how essential taking care of my body would be.
For the 14 years leading up to my pregnancy I had been on prescription medications. Starting when I was diagnosed with Lymes Disease when I was 16 years old. Suddenly I had become extremely tired, weak and straight up sick. I was dizzy all the time, I had random fevers, my joints were swelling up for no reason, it felt like the flu but it wasn’t the flu. At first they thought meningitis or maybe mono (more typical illnesses for teenagers but no less serious). But after some testing I came back positive for Lymes.
I was given antibiotic pills that were so big they looked like they were for horses and told everything would be well soon. Except it wasn’t. I got rid of the fevers and weird nightmares and some of the swelling but not all my symptoms faded. A year later they diagnosed me with Fibromyalgia. Then a few years after that my mom was diagnosed too. They say 75-90% of people with Fibro are women.
They say 75-90% of people with Fibromyalgia are women.
I was angry that I had an illness that kept me from doing everything I wanted to do. It felt like I was being robbed of my childhood/teenage years. I struggled with depression related to it. I still do. I rebelled by smoking cigarettes, drinking with my friends and trying my hardest to keep up well into my twenties. Somewhere around 26 I slowed down and didn’t party as much. Started to try to listen to my body and recognize my limitations as a person with a chronic illness/invisible disability like fibromyalgia.
Part of it was my struggle to keep a job. 40 hour work weeks weren’t consistently something I could do (still aren’t actually). I would push myself to the limit trying to be indispensable and then end up sick and then I’d be fired for being unreliable. I tried to listen to my doctors. I assumed they knew best. My doctors prescribed me pain medication to deal with the chronic wide spread joint and muscle pain that is typical of fibromyalgia. Some times they made me sleepy or dizzy but I figured that was my fibromyalgia. I mean it couldn’t be the meds that the doctors swore would help with my fibromyalgia could it?
For 14 years I was on different cocktails of medications. Tramadol was the main one I was always on, but they would give me others if it wasn’t cutting it. Percocet, Flexaril, different opiod based meds plus ibuprofen, Tylenol, and Aleve. The pain meds in my cabinet stayed put until I started wanting to have a baby. I was 29, owned my own business and was married. I had found my way through school (it took me 10 years but I still made it finally)! I had the worst baby fever. You know the kind that makes you resent anyone else with a baby as if babies were only available in limited quantities and they probably got the last one?
So I talked to my doctor about what my steps would be towards pregnancy. They said wean off your meds to a low dosage that way you won’t be in withdrawal while pregnant but that I was in for a rough pregnancy due to my fibromyalgia. He seemed to side eye me even wanting to be pregnant. I took the advice and started a prenatal vitamin too and ignored the side eye. I thought I was all set.
I took the advice and started a prenatal vitamin too. I thought I was all set.
Then I got pregnant. Much faster than expected. In fact it was within the first month trying. We were shocked. I was excited and my husband was straight up shook. We both thought it would be a few months of knocking boots all the time before it happened, but we were really lucky. So I dropped my last pill. A 50 mg tramadol extended release for fibromyalgia pain. I was told there was no risk of withdrawal symptoms. Boy were they wrong.
My First Trimester
I had the shakes, cold sweats. felt so sick I couldn’t eat (okay that last one was possibly just a first trimester issue). But it was fucking hell to go through while trying to keep my pregnancy to myself as most women do their first tri out of fear of a loss. I had already had a miscarriage when I was younger and felt anxious. The first person I confessed to was my coworker/employee Niki since we shared an office and she would catch me laying down on the couch covered in sweat and shaking. She saw me try to cover exactly how ill I felt. My fibromyalgia pain levels were extreme, higher than they had ever been in my entire life. I WANTED MY MEDS BACK.
I decided to go see a pain specialist on my family doctors advice. As I sat there for 60 minutes in the lobby, I was shaking from pain. I got into the office and they could see I was pregnant. I had just popped, it was a bit early but he could tell. He said they literally couldn’t do anything for me while I was pregnant. There were no safe treatments for fibromyalgia during pregnancy. He suggested a prenatal chiropractor and massages. He could see me crumble in front of him. It was a five minute appointment. I got to the front desk and was in tears. They waved my copay and handed me a tissue, even asked if I needed them to call someone for me. I said no and then got in my car and called my mom. I sobbed and told her I was scared.
My pain levels were extreme, higher than they had ever been before in my entire life.
It was then that I started looking at alternative therapies for fibromyalgia. I had looked into them a few times over the years but honestly I’m a skeptic and thought anything not covered by my insurance wouldn’t be worthwhile and probably wasn’t reliable science. However I had read about what would happen if I went back on the medications. I went onto forums and searched and found mothers who found the withdrawal too hard and had chosen instead to let their babies bear the brunt of their medical issues by having to be born addicted to the meds and be in withdrawal instead of them. It seemed to cruel to consider. So monthly massages, and daily walks became part of my routine as I tried to adjust to life med free.
I told myself that taking care of my body, and getting through the withdrawal so my baby wouldn’t have to go through it after she was born would be the best possible gift I could give her.
Around my second trimester I started to feel better. My withdrawal had faded, and I had a little lift in energy. I was feeling excited about my pregnancy and found out that it gave me an added benefit. Often people with chronic illnesses see an increase in their overall health when pregnant because the hormones that protect our babies also protect us. I felt better in terms of overall fibromyalgia pain than I had… possibly ever since I was diagnosed as my pain levels evened out. At around 28 weeks I had a fall and I could barely move from the pain in my hip and back. My fibromyalgia flared badly. I decided to find a prenatal chiropractor. She was was amazing and suddenly I could walk again. Previously if something like this had happened I would have had physical therapy and cortisone injections along with a new prescription medication. I knew I wasn’t going back to the meds.
I had learned that part of what I thought was my Fibromyalgia pain was actually pain from withdrawals. I would increase my meds when my fibro flared and then when it felt better I’d stop taking the stronger dose, but by that point my body would have become used to it. So then I’d be in withdrawal and need the stronger dose period. The doctors said the levels I was on weren’t addictive. They were wrong.
Pregnancy was like seeing a neon flashing light that said “SLOW DOWN YOU IDIOT” on the freeway of my life..
What I really needed was SELF CARE. Something that I had been ignoring for far too many years. I had been pretending I was fine with just the meds, that I should be able to live how everyone else does even if I pay for it later, out of spite. I was spiteful towards my own damn self. Mad at my body for not being like everyone else my ages. I didn’t know ANYONE with this illness. It’s usually not diagnosed until later in life. I had to take a hard look at myself and how I was numbing the edges of my illness and my pain with drinking, smoking and pain medication now that all of that was off the table.
Pregnancy was like seeing a neon flashing light that said “SLOW DOWN YOU IDIOT” on the freeway of my life. The magic of motherhood was somehow in order to put my child first it meant putting MYSELF first. It’s a lesson I learn over and over again now that I am a parent. For me this was only step one on my journey to being a healthier version of myself. My life with fibromyalgia had led me to using pain medication and other substances (it has been a common thing in my family and friend group that didn’t seem like a problem). Motherhood led me to learn about self care and how to break out of that pattern.
I’ll write again soon with my part two of how I’ve handled it since the end of my pregnancy. Since having Juniper I’ve learned some tricks to staying off of prescription medication for my fibromyalgia. But it’s a part of my life that I have fully accepted and I don’t expect it to be an easy road.
If you have fibromyalgia or another chronic illness that has taken you a different path in life or you’ve found alternative ways to deal with pain comment below! I’d love to hear about it.