In Fibromyalgia, one size does not fit all – I would know
Congressional District: TX33
Chronic Pain, Gastrointestinal Disease, Mental Health, Migraine, Neurological Disease
Issues and Challenges
Christine has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Mental Health Access, Surprise Billing, Abuse (Mental, Physical, Elder), Addiction / Substance Abuse, Disability, Gaslighting, Invisible Illness, Prior Authorization, Step-Therapy / Fail First, Suicide / Self-harm, Transparency in Health Care
When I wake up in the morning, I never know what kind of day I will have, all I can do is hope for the best. Depending on how I slept the night before dedicates how long I will be able to follow my morning routine of breath work and meditation.
I’ve dealt with mental health issues since I was around 12 due to childhood trauma. The formal diagnosis didn’t come until I was in my 20’s and realized I needed help before I hurt myself.
I battle with anxiety, depression, suicidal thoughts, and ptsd.
Around 2011 is when I started to have health issues. It started out with some mild stomach pains and then continued to get worse. After seeing many specialists and running test after test, they couldn’t pinpoint anything other than Irritable Bowel Syndrome. I kept hearing your tests are normal over and over again, but the pain I felt was real. After a lot of trial and error with medication we settled on two, one for the pain and one for the nausea. I focused on figuring out what I could and couldn’t eat. Fast food is strictly off limits, so is alcohol and my diet is more plant based now. Exercise was already a normal part of my routine, so I didn’t make any changes there. I would run for miles multiple times a week. It helped me with my anxiety and depression.
Late 2015, early 2016 was when I got thrown back into the world of doctors and tests. It started with minor aches and pains here and there. I knew something was wrong when I couldn’t run anymore. I would get shooting pains throughout my knees with every step I took when I ran. At first, I thought maybe I just hurt myself and took it easy with slow jogging and walking but as time passed it just got worse and the pain began to spread. It was hard at first because no one seemed to believe me when I would describe how bad the pain was. Most people look at me and would never guess I have any health issues.
It really affected my mental health since I was struggling to ease the pains and get the doctors to take me seriously. My primary doctor has always been understanding and caring when it came to my health and mental health. She helped ensure I got testing done and sent to the right specialists. Again, I went through test after test and was told your results are normal. On a few occasions that was followed by “we can’t help you anymore.” I can’t tell you how devasting it is to be turned away by the very people who are supposed to help you.
It wasn’t just one thing that was bothering me it was multiple. I would get horrible migraines out of nowhere (something I hadn’t experienced before) to the point I would have to stay in a dark quiet room. Any noise or light would send shockwaves of pain throughout my head. My IBS started to flare up again from the stress on my body. If I try to push myself to exercise more it would often end up causing me a flare u, so I had to change my routine. I spent so much time researching and looking up symptoms trying to piece everything together to figure out what was wrong. Fibromyalgia is something that kept popping up during my research. I went to the first Rheumatologist to see if that could be the case. Once the tests came back negative for lupus and RA, she immediately dismissed me and told me she couldn’t help even if it was fibromyalgia. So, I kept searching for someone who would help.
I finally found a pain management doctor that would see me. He took the time to go over everything I had been experiencing and after a few visits he gave me the fibromyalgia diagnosis. I thought yay I finally have an answer until I heard, “there is no cure, we can only manage the symptoms and try to improve your quality of life up to 75%.” The doctor told me, there were several medications I could try to help with the various symptoms. So began my journey of trial and error with medications as my pain management, neurologist, and psychiatrist worked to make sure I was on the right medications. What we didn’t anticipate was me being sensitive to a lot of medications, making things more difficult as I had various side effects from most medications we tried ranging from mild to severe. A bad reaction to one of the medications landed me in the ER.
This prompted me to do more research into what else I could take to help manage the symptoms. I left the first pain management doctor after about three years when they ran of options for me to try. I did my best to manage the symptoms, adding herbal supplements and adjusting my diet without help for about a year. In 2019 I started going back to therapy again and I got really sick towards the end of the year. They couldn’t pinpoint the virus at time, and eventually I got better but whatever I had triggered arrhythmia, so I saw a cardiologist and was prescribed a beta blocker to help control my heart rate.
In 2020 I had to go through Intensive Outpatient Program for about two months due to my declining mental health. It was hard, it sucked, but it helped a lot.
However the fibromyalgia pain started getting worse again, so my psychiatrist found another pain management for me to see. This one didn’t last long either as there were still no new treatment options and they wanted me to try a medication I had tried before. It had made my mental health worse and didn’t do much for the pain to begin with, so I stopped going. I decided to try and take a holistic approach, since I didn’t have any other options. In the meantime, I kept an eye on the Cannabis laws and once it expanded and added other conditions to the list, I made an appointment. Being diagnosed with PTSD is what allowed me to have access to Cannabis oil since Fibromyalgia is not on the list for approved conditions. I explained to my doctor why I wanted to try the oil and we went over my medical history, and he suggested some herbal supplements that I could add to my daily regime to help with all my conditions, including helping with my mental health. I knew I would like to wean off the rest of my prescriptions since we always had to change my dosages every few months and around a year’s mark it would no longer be effective. Plus, the cost of seeing multiple specialists was not cheap. I racked up a lot of medical debt over the years.
Throughout the years I went through various forms of therapy to help work through my past traumas and help me better manage my anxiety, depression, ptsd, and suicidal thoughts. Mental health is just as important as your physical health. Mindfulness, meditation, and yoga were many of the things I kept hearing about, but we never went too far into it during therapy. It was getting closer to the years mark where I knew I would have to change my antidepressant, so I decided to look for a teacher to help me learn more about those techniques. It hasn’t been easy, and I still have my bad health and mental health days but it’s not as often as it used to be and for that I am grateful. It took years of research and making lifestyle changes but I’m finally at a point in my life where I have more good days than bad days.
I am proof that one size does not fit all, especially when it comes to fibromyalgia. Each of our body’s responds differently to medications and treatments. If you are struggling in any way, please do not give up. There are options out there to try and please remember to be kind to yourself and have patience. It takes time for your mind and body to heal. This isn’t something that will get better overnight, and that’s something I remind myself of on my worst days.
My Motivation and Inspiration
I am sharing my story, so others know they are not alone. Having any sort of illness whether it be mental, physical or a combination of both, can be very lonely at times. It’s not easy for someone who hasn’t dealt with the issues to understand the complexity of the struggles that those with chronic health issues face on a daily basis.