Fibromyalgia is just a made up condition

Growing up I was often told that the pain I was feeling was not real and that I was a hypochondriac. Unless I was physically bleeding, there was nothing wrong. In 2006 I was seeing my neurologist for my monthly visit for my migraines when we started discussing the other issues that I had been experiencing. MRI, x-rays, and nerve studies were done to determine what was causing me so much pain. After the tests were done the doctor was able to find that I was suffering from degenerative disc disease, bone on bone in both knees, and issues with nerves in several parts of my body. Without being able to visibly see the problems the doctor diagnosed me with fibromyalgia.

After receiving my diagnosis of fibromyalgia doctors were quick to say that any issue that I was going through was my fibromyalgia. I learned that eating certain things, maintaining a constant temperature, exercising, and getting other problems taken care of would make the pain of fibromyalgia easier to live with, in the beginning. I started having more issues with my memory and would feel like I was walking around in a fog. Struggling with my physical health had a huge impact on my mental health. Doctors were gaslighting me and telling me there was nothing wrong. Struggling with mental health led to a list of other conditions that I would be diagnosed with.

In 2016 I was referred to pain management because my doctor could not figure out why I was still in so much pain and the other “treatments” that were being done did not help. My first visit I was scheduled to do all of my tests again. The tests all came back the same and the blanket diagnosis continued. They were quick to prescribe medications that made me feel worse and then, would add more medications to help with the side effects of the previous medications that had been prescribed.

During one visit in 2017 I presented with lupus symptoms, so blood tests were run, and confirmed lupus. For a year my medical team would agree with, and treat, lupus. Then I was referred to rheumatology. The doctor I saw ran my bloodwork and then told me that I did not have lupus or any other autoimmune disease. My doctors where I live would continue to treat my lupus symptoms the best they could.

In 2018 pain management started doing injections to help with the pain. I was treated with trigger point and epidural injections. In 2020 a new pain management doctor did a procedure called nerve ablation. I had the nerves on the right side of my neck burned first because, at the time, that was where the pain was the worst. My nerve ablation on my neck lasted for years. I had the procedure done on my lower back in 2023. It did not work for every side. I also had a new nerve study done on my left arm, shoulder, and neck. It showed that the nerve damage in my neck had increased. Still, no one would address the constant pain that I was in. Even seeing a spine specialist, I was told that I would have to deal with the pain. This was said because I had trigger point injections done and I could not say if they were effective or not because my foot was broken less than an hour after my injections were done.

With the specialist saying that he would not do anything I got a referral from another doctor to a neurosurgeon. This doctor looked over everything and agreed there was damage that could be fixed. So why wasn’t it? The doctor said that if he were to go in and do the procedure there was a good chance that I would not be in less pain than before. In fact, I was told that, at most, I would have a 65% success rate with the procedure. Understanding that the pain would not be corrected but still wanting to help I was referred again to rheumatology for fibromyalgia and back to pain management to have a spinal cord stimulator implanted to help with the pain. I met with the doctor my neurosurgeon recommended. I was excited because the doctor was the same one who had done my successful nerve ablation. The stipulation for that doctor to put in the stimulator was that I would have to leave my current pain management doctor and see the other doctor. I declined and took all the information back to my pain management doctor.

Once my doctor had the information I had to have a psychiatric evaluation, physical exam, and a trial stimulator to determine if the implant would reach a level of relief. In August 2024 I had my trial done. It was so successful that I did not need medication, ice, or heat. Once it was removed, all my pain came back. In October 2024, I had surgery to implant the stimulator permanently. Since implant there have been a lot of ups and downs. Some days it does help with my pain while other times it does nothing. The stimulator only helps the pain in the lower part of my body.

My fibromyalgia journey hasn’t just been muscle pain and brain fog. I have suffered with joint pain since I was a child. Some days it feels like I have broken a bone because of the pain. It has had a huge impact on my mental health. I’ve had a doctor do exploratory surgery for endometriosis to come back and say there was no endometriosis and that the pain was due to fibromyalgia. I am constantly exhausted, no matter how much I sleep. Some nights I cannot even get to sleep and if I do it is broken and not restful. There is so much more.

Living with fibromyalgia has changed my life completely. I can no longer stand, walk, or sit like I used to be able to. I do not have the energy to exercise any longer and some days cannot even get out of bed. Some days I can eat whatever I want and others I can hardly stomach water. I live in so much pain that there are days where I feel like even my hair hurts. I cannot put my hair up due to pain. I walk through life looking like I am healthy on the outside, yet my body is constantly turning on itself and living in a permanently nerve active state.

The most important thing that I can say is that you never know what someone is going through. Just because it is not visible, does not mean that it doesn’t exist.