I was diagnosed a few weeks ago with Fibromyalgia by my Rheumatologist.
I first saw the Rheumatologist last year when my chronic bladder pain started, to see if there was something autoimmune going on, such as Lupus. My mother was diagnosed with Lupus at 18, so naturally that’s where we started to investigate, so I went in to see her doctor at a Toronto Lupus Clinic. They did a Lupus Panel last year but results were negative so I didn’t go back for a follow up and just continued the wait to see the Urologist and Endometriosis specialist. But it’s been a year since that appointment and lately I’ve been beginning to feel constant pain in my joints and muscles in different areas of my body and I rarely feel rested when I wake up from a “decent” nights sleep. So I went and after some discussion about these symptoms and the doctor doing a tender point examination to determine my pain level by applying pressure to various areas on my body, he said I’m suffering from Fibromyalgia.
Sometimes, I think I shouldn’t find being sick so hard.
I tell myself, to ‘get it together. You aren’t doing this alone. You have a great supportive boyfriend, family and friends (and now all of you online warriors! 👋🏻).’ But then my thoughts begin to spiral… ‘You don’t even have the responsibility of a child to look after yet. How will you look after them when you can barely move right now? It should not be this painful to do what most people do without much thought, like taking a shower, cooking dinner, and even just walking across the room. These are some examples of thoughts running through my head. This is chronic illness. It is a total (excuse my language)…mindfuck. You’re constantly trying to talk yourself out of these negative thoughts… because they are JUST thoughts, not reality. And it is exhausting.
Endometriosis is a chronic, systemic inflammatory disease that does not have a cure. 1 in 10 women have endometriosis, yet it is one of the least researched conditions. It is not just a reproductive organ disease. It is when tissue similar (not identical) to the lining of the uterus, is found throughout the pelvic cavity and on organs. It can cause chronic symptoms throughout the entire body, including debilitating pain, immune and endocrinological dysfunction, chronic fatigue, infertility, as well as damage to organs such as uterus, bladder, bowels, diaphragm, pelvic floor, nerves, ligaments, lungs and liver.
Last week I saw my Endometriosis Specialist where we discussed the next steps to try and ease my Endo/Adeno pain. I told him about the great pelvic pain program I’m attending where they teach you the skills needed to get through the debilitating pain and to be able to lower the volume of the pain we endure daily.
He told me that he’s been hearing great things about that program and said, “Don’t be offended when I say this but, it seems like the program is a good tool to help you reduce ‘catastrophizing’ during flares”.