I thought receiving a diagnosis was an achievement in and of itself. I thought everything that came next couldn't be as bad. The logic was, "If I know what's wrong with me, I know what I can do to help fix it." I never counted on my illness begin incurable. Modern medicine is so advanced that we've made AIDS treatable to the point that it's very unlikely to die from it anymore; so in my mind there shouldn't be many incurable illnesses left. Turns out, not only was I wrong, but I was being very naive.

Fibromyalgia is what I was diagnosed with recently after decade of searching for answers. It is a chronic pain condition that causes widespread pain throughout my body as well as sleep problems, sensitivity to high/low temperatures, muscle spasms, overactive nerves, bad joints, fatigue and many other issues. Basically, I can't walk very far or stand for very long and using my joints for prolonged periods of time can cause serious problems. On my bad days, I end up confined to bed rest. Even on my good days, I can really only tackle a couple short tasks or run one errand without causing a painful flare for the rest of the week.

While knowledge is power and knowing what caused all these problems helped me, I didn't realize how limited my treatment options were. Exercise is usually the blanket, throw-away advice from doctors and rheumatologists. However, it only seems to help a small portion of fibro patients improve, for some it can make the pain much worse. I, unfortunately, ended up in the latter group. As I continued my research post-diagnosis, I found that there was very little new information on treatment. "Pain management" was a term used most often, talking about how to learn to live with the pain. It also seemed that there was very little research going on about how to cure fibromyalgia patients and most efforts seemed focused on just dealing with the pain. Learning this broke my heart. They weren't trying to make us better, they just wanted us to complain less and do more. (Shut up and be useful.) This kind of thinking is not helpful for the patients who just want to be better, who want to eventually be pain-free. For now, we accept that pain-free may not happen, but we need to hope it is a possibility. Hope is all we have.

Around this time, I heard the phrase, "Fibro won't kill you, but you'll suffer every day until you die of old age." While that isn't the greatest outlook to have, as a person with this disease I feel like it still rings true. Fibromyalgia as it stands is a life sentence of pain, insomnia, and the inability to complete basic daily tasks. Like many fibro sufferers, I can't work. Since my wrists lock up, it makes it hard to drive a car or use a computer for long periods of time. Working retail or any other minimum wage job that would have me on my feet most of the day also wouldn't work as I usually can't walk or stand for longer than five minutes at a time. The only other choice is working as a call center employee, but with the emotional toll that can take on a person's mental health, it's extra dangerous for a fibro patient to take on that kind of work. This is because fibromyalgia patients have a suicide rate 10 times higher than the general population [1][2]. The cause for the high suicide rate is split between the fact that fibromyalgia cause severe depression due to pain levels and the anti-depressants with suicidal side effects often prescribed to fibro patients to treat their pain.

Speaking of treating the pain with prescriptions, there aren't many options in that department either. Anti-depressants are usually prescribed as fibro patients often present as severely depressed and many doctor's believe the pain to be psychological. (It's all in our heads! No.) There are some pills that some patients have had limited success with such as Lyrica and Gabapentin, but, like exercise, they only seem to work for a small portion of sufferers. Many fibromyalgia patients then go on to rely on opioid prescriptions like Tramadol to make it through the day. The problem there is that with the number of overdose and addiction victims rising, doctors have been taking away valid opioid prescriptions from non-addicted chronic pain patients [3][4][5]. This leads to loss of function and increased pain flares for patients who had returned to almost full function. Unfortunately, this problem is not being addressed as the chronic pain community doesn't seem to have a voice loud enough to be heard over the shouting about overdose deaths.

Therefore, fibromyalgia patients find themselves in quite a bind. We can't work, and sometimes even taking care of ourselves is too much. Adding onto the fact that there just isn't enough research being done to cure us and chronic pain patients losing access to their prescriptions, we can easily start to feel like we've been imprisoned in our own bodies. I continue my own research and participating in fibromyalgia communities in the hope that I can find ways to ease the pain and break free of this life sentence.

Dana~


"Do you suffer with chronic pain? What's your biggest hurdle? What treatment have you found to be the most helpful? Let me know in the comments below."

Fibromyalgia. One word, five syllables. The truth I had been searching for that I knew existed all along.

A decade of doctor's appointments, specialist consults, foreign physicians, late nights reading medical journals and endless days thinking I was insane finally lead me to this. It was real, others had the same symptoms.

I first heard the word from a gynecologist in the UK. My birth control was running low while I lived in the South of England so I booked an appointment at a sexual health clinic. Since I was foreign, they wanted my full medical history before I was given a prescription. I chuckled and apologized to the nurse for the long story I was about to tell her. She sat with me for almost half-an-hour as I regaled her with all the main issues I had and what procedures I had undergone. When I was finished, she thanked me and took the report she wrote to the gynecologist. When the doctor came into the room, skimming the report as she sat down across from me, she made an off-handed comment, "Have you ever been tested for Fibromyalgia?"

The sentence would open up a whole new world of research for me, but I hadn't connected the dots yet. I responded to her inquiry in the negative and she said I should speak to my general practitioner about getting checked out. I agreed and that was the end of it for the time being. I didn't have a  family doctor in the UK and I was focused on relationship issues I was having with my partner at the time. Still, the word stuck with me. The next time I had a moment to myself I started to look up the symptoms and signs. It had no known cause, no cure and mostly effected women. This was disheartening, but all I wanted was an answer. As I continued my research, everything I read just felt like I was reading my life story. It felt like I was a typical case and I had no idea how this had been missed previously. That's when I noticed how little it was recognized back in North America. It wasn't until recently that doctors started to believe patients and consider fibromyalgia a real condition.

On my return to Canada last summer, I was determined to get my diagnosis. The only problem was I didn't have a family doctor because mine retired while I was abroad. Clinic doctors were wary of giving referrals to specialists, which I needed to confirm that it was Fibromyalgia. So I set out to organize a new family doctor for myself only to discover there was a shortage of family physicians in my province. I also had a bunch of paperwork to fill out and file after returning to the country. By the time I had managed to sort everything out and get an appointment with a doctor who was willing to take me on as a patient, it was a full year after I learned of the condition from the gynecologist. The symptoms first seriously reared their grotesque head when I was 12-years-old. After I booked the appointment, I turned 22. Ten years of seeking a diagnosis had passed and I was so broken down, I thought there was no fight left in me.

Sitting down with my new doctor, explaining everything to her and then bringing up what I knew of fibromyalgia...It was nerve-racking and it honestly took the last of my mental energy to do. I had waited so long, suffered for so many years in the dark. I wanted, no, I needed to hear an answer to my question, "What's wrong with me?"

Walking out of my new doctor's office with her agreement and her pledge to help me further investigate my issues, was so liberating. I could not have been more relieved. One journey, the search for an answer, had come to an end. The next journey, the search for a working a treatment, was just beginning. Ten years of fighting for an answer has prepared me for the next battle, and I'm ready to take on the new challenge. I welcome it.

Dana~


"Do you or a loved one have fibromyalgia or CFS? How long did it take to get the diagnosis? When did the symptoms first start? Tell me your story in the comments below."