I’m sure by now at least a few of you have read my About Me, which gets the point across but isn’t really the whole story. I recently took the time and energy to write it all down: my adventures with past injuries, diagnosing fibromyalgia, how I got to where I am now, etc. I’ve finally decided to share this ordeal with you, because if sharing everything I’ve been through, if sharing my struggle and progress can help even one person, then it was absolutely worth taking the time to get all the information out there. I originally posted this in a forum for chronic pain, so some of the information will probably be familiar to you, but it took a lot for me to get it all out there and I think it’s important to share here too.
Please be considerate, this is a really personal story for me (obviously), so in this one instance: if you don’t have anything nice to say please keep your mouth shut.
I have made a lot of changes in my life over the last 1-2 years and I feel my quality of life has improved significantly. I thought maybe if I shared my story, if I could help just one person, it would be worth revisiting the bad memories and the amount of time it will take to get this all written down. I’m sorry if I sound conceited, it’s not at all my intent, but I spent years hating life and suffering every day and I don’t think anyone deserves to go through that.
For starters, I’m a 25 year old female. I’m 5’4″ (5’5″ on a good day), 180lbs, and approximately 30% body fat. These numbers will be important later.
My apologies in advance, this is going to be super long. If you don’t care about the back story, I’ll make sure to put a line when I get to the “good stuff” so you can skip ahead.
I have always been pretty clumsy. As a kid, I sucked at sports, I hurt myself all the time, and even in 2nd grade, “pulling a muscle” would leave me limping for days. This was all explained away by saying I am simply not athletic, or worse – lazy. Ooh how that word infuriates me to this day.
Anyway, like I said, pretty clumsy. I didn’t have any major incidents until I was about 14, but in the course of just a few years, the injuries I sustained were staggering. I slipped on ice and split my chin open, eight stitches – that was the first incident. After that, I sprained both ankles multiple times, eventually resulting in a hairline fracture and a big blue cast just in time for the big school dance. I earned broken ribs, cracked cartilage that connects my sternum to my ribcage, and a torn ligament in my wrist all from snowboarding (clearly I wasn’t very good, but I loved it). The torn ligament was ignored as a sprain for over a year, eventually my mom demanded an MRI and the truth was revealed – I had two surgeries (one to repair and insert pins, the other to remove said pins) and eight stitches – two each in four different places, I call them my shark bites.
My health problems just piled on after this. Stomach ulcers, the propensity for my large intestine to occasionally shut down simultaneously causing diarrhea and constipation, more ankle sprains, and the tendency to throw up if my heart rate was too elevated (basically every time I had to walk across the street and up to the third floor for French class in 11th and 12th grade). I did go to the school gym after classes a few times a week, but it was more of a social thing and I didn’t really do any serious strength training or cardio for fear of injury/vomiting. Oh, and I have asthma too. And anxiety. And ADHD.
This crap continued, but without major incident until 2010. Shortly after turning 22, I was in physical therapy yet again. This time it was just as a general precaution, to strengthen my feet and ankles once and for all so I would stop injuring myself. This was the most physically challenging experience of my life to this point, but the progress I made was rewarding. One particular day in November, I was doing one of my scheduled exercises – a modified plank – and something just felt all wrong. I hurt my back. I hurt my back to the extent that my usual 11-minute walk home took me about 45 minutes, most of which involved snotty gross crying (you know the kind I mean). By the time I got home I was practically screaming. Ibuprofen did nothing, Aleve did nothing, after several hours I could barely move. My aunt is a dentist and called in an emergency Vicodin prescription for me. It was enough to knock me out, but did nothing for the pain.
After this incident, I was in pain constantly and everywhere. Everything hurt. If I bumped in to something it hurt for minutes, not seconds. Any minor discomfort became a huge ordeal. A half hour of beginner’s yoga left me bedridden for days – this was the final straw for my mom and for me, and so began the doctor’s appointments. My back injury was diagnosed as a lower lumbar sprain, but it didn’t explain away everything or anything else I was going through.
In the course of six months, I was seen by 3 primary care physicians, 2 rheumatologists, and a neuromuscular specialist at Jefferson (if you’re near Philadelphia, shoot me an e-mail if you’d like his info). This guy knew what was up. Despite the 2+ hours I spent in the waiting room for every appointment, he took care of business. Hour long interviews with my mom and me, family histories, endless blood work and tests, genetic testing, and that godforsaken fucking EMG. Sorry for the language, but if you’ve never had one, that electromyogram is still one of the most painful things I’ve ever experienced. He ruled out everything possible. The only weird stuff in my blood were my CK levels – creatine kinase, more than triple the normal range. The neuromuscular doctor concluded that my back injury set off my syndrome once and for all. At this point, early-mid 2011, he diagnosed me with fibromyalgia and prescribed medication #1: Lyrica. Now that I know I have fibromyalgia, looking back on my childhood is confusing. It sucks because maybe I could have lived a more normal life if I’d somehow figured it out sooner. On the other hand, I got the validation I’d needed. I wasn’t “just not athletic,” and I definitely wasn’t lazy, there was something seriously wrong and it wasn’t my fault.
Eventually I found an absolutely wonderful primary care doctor who I still miss dearly (she left the practice and then I moved across the country). She called me out on my shit (smoking, drinking, generally being an asshole like the college kid I was), but took my symptoms seriously. She even correctly diagnosed a gallstone after I described back pain in a particular location so severe that it made me throw up. She checked my CK’s often, though never figured out the correlation to my pain, just that they were insanely elevated.
When I went to the hospital for a routine ultrasound to check out the gallstone, January 2012, I was hospitalized almost immediately for a pericardial effusion (fluid around the heart). After further investigation, there was no fluid around my heart, but they discovered that (a) I had pneumonia, and (b) my CK levels were nearly 14,000 (note that the normal range is between 36-234). I was kept overnight for IV antibiotics and that was pretty much it for the pneumonia, but at this point we had a new issue: Lyrica was making me fucking insane. I was depressed, suicidal, moody, manic, just all sorts of crazy. It wasn’t helping with the pain either. My blood pressure was high, I had headaches for days, and I was a miserable dickhead.
Okay, this is getting seriously out of control long and I apologize. I’m going to skip around a little bit now because I’m actually running out of space. The point is, for the first time in my adult life (21+), I am not in pain. Okay, well I am in pain, but I’m not in the kind of pain that interferes with my life every second of every day anymore. So how did I get there/here? Let’s walk through it.
Shortly after calling it quits with Lyrica, I was prescribed a new meds routine that I pretty much still follow now.
- Baseline, daily: Tramadol 50mg, 1-3x daily (as of late 2012, I only take it once/day unless more is actually needed)
- “Level 2,” when Tramadol just isn’t cutting it: Diclofenac Potassium 50mg
- “Level 3,” when shit just got serious: Flexeril (Cyclobenzaprine) 10mg, before bed
If none of the above provide relief, it’s time for a trip to the emergency room for a Toradol injection. My last ER visit was on 06 June 2012.
A little later that summer (2012), I started seeing a guy – we are still together, and about six months ago moved from Philly to Portland, OR together. If all goes well, we’ll be buying a house this summer. (Readers, I am of course referring to The Boyfriend).
When I started dating my now-boyfriend, he was very into crossfit after struggling with his weight most of his life and was not taking any nonsense from me with my smoking, drinking, eating habits, and complete lack of exercise. I mean, why the hell would I make myself exercise when I knew that I’d likely be unable to even dress myself without excruciating pain for days afterwards? Who in their right mind would force physical activity on themselves under those conditions? This was deemed an acceptable answer for the time being, but my diet was not.
Throughout the course of my teenage and adult life, I’ve tried damn near every diet under the sun, most recently Weight Watchers. Nothing worked and I was miserable. (I didn’t really stuggle with my weight until I hit about 20yo, there is more info about that part of my life on the About Me section of my blog.
Even after my neuromuscular doc told me changing my diet was imperative to my well-being, it was just too hard and I had no willpower. When he told me the previous year that I should cut gluten out of my diet, I straight up laughed in his face.
My boyfriend introduced me to the slow carb diet, his lifestyle of choice, as described in the book The 4-Hour Body by Tim Ferriss. It’s a pretty wonderful book, I definitely drank the kool-aid, and it’s absolutely worth reading, I learned so many things about my health and my body from that book. So here is a basic rundown of the food aspect of my new lifestyle. Holy hell it sounded so scary and hard, and it really was at first. Sugar is truly a drug and the more you eat it, the more you crave it. I literally felt like I was going through narcotic withdrawal for the first few weeks. I was exhausted and cranky and had no energy, I’m sure I was a real pleasure to be around, but my boyfriend pushed me through it.
I remember the first day I woke up without back pain. Not that it was completely gone, but every single morning since that little oopsises in 2010, I have woken up with back pain that took me 7-10 minutes to process before I could even open my eyes. One day, about six weeks after I started eating according to the slow carb diet, I woke up and I actually felt GOOD. I had energy, I had a smile on my face, and I could fucking MOVE. Many studies have shown that gluten can cause and even exacerbate muscle inflammation and lethargy, two things people with chronic pain and fatigue know very well. For all my fighting, for all my resistance to doctor’s orders, it absolutely worked. Cutting sugar and gluten out of my diet was about 75% of the answer I was looking for.
On 01 December 2012, with the help of The Boyfriend (and Tim Ferriss), I quit smoking. If you or someone you know is trying to quit smoking, you can read about my adventures with quitting here. (I wrote that post as a celebration of reaching 500 days nicotine-free, as of today, I have reached 550 days!)
So that March (2013) I started a new job – I had just graduated from college in February. My new job was about eight blocks from my apartment, just under a mile. I took the bus there and back every single day for weeks. On the first truly warm day of 2013, I popped a Tramadol and I walked the eight blocks home. It took me nearly 35 minutes. It’d been over two years since I had put any real thought into physical activity and oh goodness I was fat and out of shape. I almost cried on that walk, but I made it home. I made it home and then I did it again the next day. By the time I lost my job in July (it’s okay, I was going to quit anyway), I was walking home in 17 minutes. I HALVED my time in three months. I know for most of the world that really isn’t very impressive, but guys, I know you get it. I was over the moon the first time I walked home in less than 20 minutes and I decided I really needed to get a grip on my health. I’d been following the slow carb diet for almost six months at this point, my baseline level of pain was at the lowest it had been ever and it wasn’t going to keep getting better without my effort.
I started really slow, like really really slow. There is an exercise called “high knees” where you essentially run in place, lifting your leg up high so your knee comes to about chest level. This was the first exercise I did at home. I did them slowly, one at a time, for a total of 20 (10 on each side). It was AWFUL. Within the hour, it hurt to move my legs. I sat on the floor and cried. I took my Flexeril and I went to bed. I was in pain for two full days, and finally regained full mobility (or at least my understanding of full mobility) on the third day. When I got home from work, I did high knees again. This time I did 11 on each side, and it sucked, but it didn’t knock me on my ass like it did the first time. I very slowly started adding in more exercises, focusing exclusively on bodyweight movements. Bodyweight movements are really great because you can do them practically anywhere, with no equipment, and in very little time. When I was at work, I would do wall sits in the bathroom. I did leg lifts at my desk, or little games: my favorite was lowering my chair as much as I could without interrupting my work, and trying to see how long I could keep my feet off the floor. It was really hard! But I was getting stronger and it felt AMAZING.
I started building up my confidence, about as slow as I was building muscle, but it was working. I started doing wall push-ups (standing up against a wall), and jumping jacks, even the occasional plank. The first time I did bodyweight squats, I think I did 3 before I practically fell over and I know my form was terrible, but I kept doing it. I didn’t push myself crazy hard, I tried to do as much as I could without causing myself extreme pain – not always successful, but I tried. Less than 10 minutes/day, maybe three days/week. I actually wrote up a little thing about bodyweight movements in r/loseit a few months ago, you can check it out here:http://www.reddit.com/r/loseit/comments/1y1u8i/here_is_my_relatively_friendly_guide_for_those/
I kept working on my bodyweight movements and slowly getting stronger, but it’s not enough to just do that forever. This year, this year I got brave. When the boyfriend and I moved to Oregon, we finally had a garage. For a couple of reasons, he left the crossfit world, but was still a big fan of weightlifting and built us an 8’x8′ weightlifting platform in the garage. This is not a typo, so prepare for this news: I started WEIGHTLIFTING. Me, the chubby sick girl with the invisible illness. I started in mid January. Weightlifting barbells come in two sizes – 7′ long and 45 pounds, or 6′ long and 30-35 lbs. My boyfriend has the bigger barbell, the standard for Olympic lifts and powerlifting. It felt SO heavy, just standing with it on my shoulders was hard. To teach me how to move with the barbell, my boyfriend bought an empty PVC pipe, 7′ long. It probably weighed like 3lbs, but that’s what I started with. He showed me how to do back squats and front squats with the barbell, and a few other lifts. After a few weeks, he filled up the PVC pipe with sand and sealed the ends bringing the weight up to about 10 lbs. For Valentine’s Day, the boyfriend surprised me with my own barbell – a women’s barbell, 6′ long and 30 lbs. It was perfect. The weight no longer felt terrifyingly heavy either. Following Jim Wendler’s 5/3/1, a very slow progression program that focuses on proper form and slow gains, I began to make progress. Before you can lift 40 pounds, you have to lift 20 pounds, and the biggest problem with weightlifting is when people get their egos involved. Fortunately I know my limits, and am still kind of a wuss about things because of my history, so keeping ego out of the situation isn’t too difficult. On 23 May 2014, I did squats with 34kg – that’s just about 75 lbs. SEVENTY FIVE POUNDS. And the best part? I didn’t want to die afterwards.
When I started weightlifting in January, I weighed 190 lbs and was 36% body fat. That’s 75 pounds of fat. This week I weighed in at 179 lbs, my first time under 180 lbs in at least three years, and I am now down to 30% body fat. That means that while I “only lost” 11 pounds, I have lost over 15 pounds of body fat. I GAINED 5_ pounds of MUSCLE. I HAVE MUSCLE! You can too.
It was insanely hard to get to this point, and it’s going to take a lot of energy to keep it going, but I am so much happier and healthier. I am the healthiest and happiest that I have ever been in my life. I live a relatively normal life. Do I still have pain? Absolutely. But my quality of life isn’t even comparable to the hell I lived every day for years. Whatever doesn’t kill you makes you stronger, and I’d rather be in pain because I’m working on improving my life than because I’m scared of temporarily feeling more pain. I hope some of this information was helpful or useful to at least one of you, I hope this can inspire at least one person to make a change in their life. Please comment or shoot me an e-mail (firstname.lastname@example.org), I will answer any and all questions I can or whatever else you want to talk about.
Fibromyalgia and chronic pain used to be part of who I was. It was my whole identity. Now… chronic pain is just a thing that I have. Fibromyalgia is just a thing that I have. IT IS NOT WHO I AM.
There is no short cut for getting healthy.
Note: I failed to mention, I also take a Vitamin D supplement. This started after our move to the Pacific NW as a response to all the winter rain, but I started feeling even better. A study was recently published that showed those with fibromyalgia pain often have lower vitamin D levels as well and that a supplement can help combat some of the pain.