Fibromyalgia: My Journey to Diagnosis

I don’t know if I have ever written about my journey to diagnosis with Fibromyalgia. If I take a look back at my childhood I can easily recognize some early signs and symptoms of Fibromyalgia. I was in my early 20’s the first time that I had ever heard of Fibromyalgia. That was the day that I was first diagnosed. Since then it has become a part of my everyday life and I have learned a lot about the disorder and ways to cope with it.

Featured Image by Jared Erondu on Unsplash

Early Years: Birth – 5 Years

I am not going to write much about birth to 5 years old because obviously I don’t really remember much and talking to my parents and other family members they don’t really remember me being anything but healthy during those first 5 years. Nothing major stands out.

My Childhood: Ages 5 – 11 Years

When I was a child between the ages of 5 and 11, I was active. I played soccer, rode horses, went to summer camps on the Canadian Military base I lived on in Germany that had arts & crafts, sports, outdoor activities such as swimming and other things. I was in swimming lessons, figure skating, gymnastics, and bowling. I loved gym class. I loved being outdoors. We went volksmarching in clubs and hiking, biking, and walking on our own. I even skateboarded. I spent a lot of time outdoors and loved being outside.

Even then though there were some signs. My mom and dad both remember me crying my eyes out every night from about age 5 or 6 because I would have terrible growing pains that would keep me up at night, all night sometimes. I would get headaches a lot as well. I was tired often, however as an active kid with an active family we were always on the go. My parents chalked it up to horseback riding or swimming when I complained about pains in my legs or hips at first and then a little later when they took me to a doctor the doctor agreed.

Swimming, horseback riding, skating, and gymnastics were among my favorite activities. I was fairly flexible and would get some minor injuries such as sprains and strains. Maybe a bit more than most other kids my age, but everyone just put it off to me being clumsy, which I was, and just pushing too far. I fell a lot, I would lose balance easily and topple over. I remember being dizzy and off-balance a lot but I don’t really remember complaining about it. Maybe I thought it was normal. I am not sure.

In those years between 5 and 11 years of age, I had the typical childhood illnesses and some not so typical ones. I had chickenpox, tonsilitis infections, and ear infections. I had so many of them in fact that the doctors had wanted to put tubes in my ears and take out my tonsils. At the time where we were on a base in Germany and my parents did not really have faith in the doctors there and did not want me ending up in a German hospital off base. Considering the language barrier, unless it was an emergency.  They elected to wait until we came back to Canada when I was 11.

Pre-teen: Ages 12-14 Years

I continued riding horses when we moved back from Germany when I was just about 12. I mostly did trail rides with my brother’s birth mother, more so than lessons. However, initially, I did do some lessons near the base in Calgary Alberta where we moved. During this time, I continued to have “growing pains” and constantly sore lower back, legs, and hips. I chalked it up myself to being small in size and riding horses and didn’t say much to my parents.

In school, I was active in gym class and after school activities.  I enjoyed gym class and was interested in track and field. I suffered a lot of sprains and pain. Injuries were something that was still quite common and I would take some time, recover, and then go back at it again. I do remember some pain. Nothing that was overly concerning at the time.

Typical Teenager: Ages 15-19

My teenage years began in Calgary. I was still riding horses occasionally. I had a friend who’s family had a few horses and we would go on trial rides together or ride them around the facility. I started high school at an alternative high school that had some fairly interesting classes. We had normal everyday classes such as math, chemistry, biology, social studies, physical education, and so on. The school was known for it’s “alternative” classes that took you beyond the boring day to day of high school and out into the real world.

I enrolled in Cosmetology as my “minor” and I also enrolled in a non-typical phys-ed class (I don’t remember the exact name of it) where we went horseback riding, curling, skiing, cross-country skiing, bowling, rock climbing, squash, sailing, and other similar activities.  I really enjoyed it. During this time, I do remember suffering a lot from fatigue, headaches, dizziness, and with issues concentrating and understanding things. This is pretty much when my journey to diagnosis began.

My parents took me to our family doctor and he thought maybe it was migraines and referred me to a specialist. I believe it was likely a neurologist, I can’t really remember. I don’t even remember if the doctor was male or female. honestly, I don’t even remember the appointments. That’s when my memory issues began as well. My mom said I was told it was not migraines and that I was just overdoing it and to do fewer activities.

When I was 16, we moved from Calgary to Digby, Nova Scotia when my father retired from the military. I enrolled in school here. There was not much for after-school activities or things I was interested in and I drifted completely away from horseback riding and horses in general. I was never against the move. In fact, I was excited to see my grandparents and family out east and meet new friends. I was sad about leaving my old friends, however, it was not my first move and didn’t really bother me too much.

After I started high school in Grade 11 here in Digby, things changed, I felt out of place. I started getting anxious about going to school and depression set in. I started fighting with my parents. I was never a bad kid or teenager and even then I didn’t act out and do much other than screaming fights with my mom. Then I would go for a walk, we would make up when I came back and that was the end of it, till next time.

Those few years I remember depression really setting in and anxiety turning to full-on panic attacks but I don’t remember much as far as pain or headaches. I am not sure if it was just the changes in my life. I had a few rough years but overall I was okay. I just skated by at that point and my goal was just to graduate high school. Didn’t even care about grades as long as I passed with a diploma and get the hell out of Digby. I really hated it at the time. Now being back I have fallen in love with the town and people and realize it was not Digby I hated. It was just a bad time in my life.

Young Adult: My 20’s

My 20’s were pretty much a train wreck. I started out by moving to Fredericton, New Brunswick with my high school boyfriend, sinking deeper and deeper into depression and anxiety and having the pain seem to come back full-force when I got to Fredericton. The pain, fatigue, headaches, depression, and anxiety took over my body. I started to feel useless, hopeless, and just in over my head. I ended up hospitalized because of the pain and headaches for a week. They found nothing wrong, all tests came back normal. I don’t really remember now what tests they did. They kept me pretty drugged up for some reason I can’t even remember and I don’t remember much of the time in hospital. I was diagnosed with depression and IBS apparently. I don’t even remember having IBS symptoms at the time, though I had them just a year or so later.

I asked my ex once if I was on the mental health ward and he said no, I was in a general ward. He also said that I tried to commit suicide once while there but that it was after I was in the hospital not before. I remember that to a point. I remember taking pills. I was taken to the ER and then released on the same day. They did not keep me for that. I remember him also taking pills away from me more than once and then hiding them and only giving them to me when I was supposed to have them. I remember him calling my parents as well and asking them to come to get me. He said he was done. Didn’t want me there and I remember his mom coming to get me because my parents’ vehicle was not working well enough.

After that, I lived with my parents for a few years around my mid-20’s after they had moved to Halifax. I got a job, got into counseling, and got on medication for depression and anxiety and started getting better. I was moving on. Through all this, I was experiencing constant fatigue, pain all over, headaches, cognitive issues (brain fog), and started having stomach issues about this time. Constant upset stomach, cramping, gas, nausea, and constipation followed by diarrhea. My family doctor started at about this time questioning whether it was fibromyalgia combined with IBS and sent me to an internal medicine specialist at the hospital who said he did not believe I had IBS (though my family doctor disagreed) and diagnosed me with Fibromyalgia.

Adult: 30’s – Today

In my 30’s I have been diagnosed with additional chronic illnesses including Type 2 Diabetes and Chronic Idiopathic Urticaria and Dermographism. Fibromyalgia is still very much a part of my life, however, I don’t let it define me and I do everything I can to live my life to it’s fullest and deal with things as they come. Some days are great, others are not so good, but then they are followed by great days again. I take medication for anxiety and depression, which is also approved by Health Canada as a treatment for Fibromyalgia. It works well for my anxiety and depression but it does next to nothing for me for my Fibromyalgia. Instead, I am working on getting and staying active as much as possible.

I am awaiting an appointment with the Chronic Pain Clinic in Yarmouth but COVID-19 has put a wrench in that for the time being as they are closed. So, I am continuing to find ways to cope with the chronic pain, fatigue, and other symptoms and I am actually doing good. Swimming over the last month or so in my parents’ pool they put up seems to help a lot, so does walking and getting moderate exercise, and sometimes just using a heat pack, cold pack, warm showers, and my neck and back massager do wonders when I am in pain.

Sometimes I just tough it out as well, it depends, one or two of swimming, walking, or hiking ia often followed by a day where I can barely get out of bed. Sometimes even just a long day at work or doing school work. I am okay with that for now, I will gladly lay in bed or on the couch and rest for a day if it means two days decent days. I do what I can and honestly, I can do just about anything. I just need to realize when I have hit a limit and take the time for recovery.