I’ve decided to start a series of articles all about Fibromyalgia. I will be talking about Fibromyalgia in general and my struggle with it. I hope to bring some awareness to this “invisible” disease and help people gain a better understanding of what I am going through. This first article will be all about how I got diagnosed; because trust me, it wasn’t easy.
When I was in 10th grade I started having symptoms. I was in a high intensity gym class when I started to feel pain in my left leg. I thought perhaps I was just over working my body or I pulled a muscle. The pain didn’t seem to go away so I went to go see my general doctor. Of course there didn’t seem to be any physical issue but they still wanted to send me to physical therapy to try and work on it. The physical therapists called it “phantom pain”. How reassuring to have a doctor basically say you aren’t really in pain.
The physical therapy really just made things worse. After all, I didn’t have a sports injury or surgery so how were they supposed to help me? After this failed, I went a few months without any treatment. My pain slowly started to spread to my other leg and my lower back. I was at a loss because I didn’t know where to seek help. I ended up at the ER a few times because my pain started to get so bad. At this point, I had pain almost all throughout my body. I was a 15-year-old girl in tons of unexplained pain.
The ER doctors suspected an autoimmune disease (such as Lupus) so they recommended I go see a Rheumatologist. There were not many pediatric Rheumatologists in the state of Michigan, so I had to wait a while to get in to see one. After finally getting in to see one, I was told that nothing was wrong with me. My mother and I had done some research and thought Fibromyalgia could be a possible diagnosis. We brought it up to this doctor but he basically said Fibromyalgia wasn’t a thing.
I left there in despair and lots of tears. I was missing lots of school and becoming depressed because of all this pain and discomfort I was experiencing. Doctors were supposed to heal me and have all the answers, but no one had an answer. They knew I was experiencing widespread pain, fatigue, headaches/migraines, weakness, sleep issues, nausea, depression, memory issues and numbness among other things, but they didn’t know what was causing it.
I had seen multiple specialists including a neurologist, orthopedist, rheumatologist, psychiatrist, a few ER doctors, and my general doctor within a year or two. I had gotten multiple blood tests, an MRI, X-Rays and many different types of examinations. There seemed to be nothing physically wrong with me. So why was I feeling all this pain?
A family friend who had worked in different ERs/Urgent Cares heard about my story and knew a doctor who she thought could help. I was willing to try anything at that point. My mom and I drove out to go see this doctor at an Urgent Care he was currently working at. I didn’t expect much from the appointment since I had been disappointed so many times before. Within the first 5 minutes he knew exactly what I had. I was officially diagnosed with Fibromyalgia. It was a bittersweet moment for me. I had done the research on it and knew there was no cure for this chronic disease. But, at least I wasn’t going to die like I could have with something like Lupus. I knew this was manageable now, but I also knew it wouldn’t be easy. My whole life changed at this moment.
Finally having a diagnoses, it was easier to find help. The doctor who diagnosed me wasn’t a doctor I could see on the regular though. I needed to find someone new yet again. My family asked around to see if anyone had dealt with something similar to this and had a good doctor in the area. We finally found a pain specialist nearby that seemed like she could help treat me. When meeting with her right before I turned 16, she kind of ambushed me with treatments.
I was expected to change the entire way I lived my life. I was told to take many new vitamins, cut down on gluten, dairy and meat, take pain killers, take muscle relaxants to sleep, take antidepressants for my mood, take a thyroid medication, do physical therapy with a special therapist, exercise moderately, stop waitressing and see a therapist. That was a lot to do as a teenager! At this point I was used to many medications, so I was okay with that part. It was just everything else that seemed to be too much. So, I didn’t do any of it. I was just so overwhelmed.
Many people diagnosed with Fibromyalgia are in their 60’s or older! I felt alone and like no one else knew what I was going through. I finally started to try a few things at a time and figured out what worked and what didn’t. This doctor became too much and I started to get anxiety to see her because I wasn’t doing everything she expected. I don’t know how she expected me to change everything so quickly.
I eventually started seeing a Rheumatologist at U of M who was a lot more realistic. My Fibromyalgia is considered under control right now but I definitely still have my flare ups. I am not always perfect with following my regimen, but I have realized it is in my best interest to follow it. The more work I do to get better, the better I will feel. I will never be cured, and I have learned to accept that. With the love and support from my friends and family, I have been able to battle this disease with a positive attitude.
I hope this backstory helps you understand the troubles I had to go through to find some relief. Many other people with Fibro go undiagnosed for years and struggle to find the right treatment. Stay tuned for my next article which will explain what Fibromyalgia feels like.
