An infinite loop can be described as a computer program which loops endlessly. Having “no terminating condition” or “one that can never be met” or “one that causes the loop to start over”. After three years, I think I have finally found the start of my infinite loop. I have long suspected, as far back as the beginning of this blog, that something wasn’t adding up. I have a good head for knowledge and research, and I know my own instincts. They have not failed me yet.
Years ago when the pain started, I thought the doctors were missing all the key signs. I just found them in this slide show about Fibromyalgia. I had my suspicions, but looking at the very first slide just now, I wanted to cry. It shows every spot that was triggered. For those of you who have been here with me for a while, you’ll remember the post about my shoulder 3 years ago, then my spine. The back of my neck was next, and this summer was my hip.
In the fall I started waking up not being able to move my fingers well in the morning, and honestly, just didn’t say anything. What was the point? Then my eyes started having some issues. The ophthalmologist said it was severe allergy eyes. Hmm. I later learned that almost all of my friends with autoimmune issues have had eye problems as well. I did not know that. I already knew I had 16 of the 18 trigger points as this was not the first time I suspected that this could be the underlying cause; however, no doctor has ever looked further into it. I realized years ago when someone touched my back to pat me and I stared daggers at them like they had just forcefully beat me on the back, that something was wrong. I just thought “they” would find it.
Slide 5 is very interesting to me as it suggests that patients with fibro “experience pain in response to stimuli that are normally not perceived as painful.” That would explain many things. Then there was this piece “Researchers have found elevated levels of a nerve chemical signal, called substance P, and nerve growth factor in the spinal fluid of fibromyalgia patients.” When all of this started, I told the doctor, a rheumatologist who was “well-known”, that I could feel every single place in my vertebral column. I got a blank look. I believe now that was the start of it.
The next slide that is of interest to me is slide 9. “Patients with fibromyalgia lack the deep, restorative level of sleep, called ‘non-rapid eye movement’ (non-REM) sleep. Consequently, patients with fibromyalgia often awaken in the morning without feeling fully rested, even though they seem to have had an adequate number of hours of sleep time.” This would explain why my hematologist looked at me like I had lost my mind when I said I am still fatigued all the time. I suppose it would be too much for any of my doctors to coordinate on a treatment plan.
So what am I going to do about it now? Well, after I see the next specialist a friend recommended as she uses this doctor for her own fibromyalgia care, I am going to move forward. I am going to do some of these exercises as well. I am going to look into Qigong exercises. I am going to live again and know that while there is no cure, I am not alone. Thank you to all who have been supportive of me during this journey.
P.S. I like to believe God is more like a father…one who leaves me notes. One who is supportive and understanding. YOU can believe whatever you want.
4 thoughts on “Infinite loop…”
Doctors, as a whole, only care about treating symptoms and whatever they happen to specialize in. None are willing to take the time it really takes to connect the dots to find the “real” problem. They will cite the number of patients and the small amount of doctors and blah, blah, blah…. It goes back to what we teach our kids (or should be teaching them, anyway): do something right the first time and you alleviate all the extra time it takes you to redo it to make it right. If docs would stop overbooking their waiting rooms, spend another ten minutes or so actually reading a patient’s history and looking for a real diagnosis, they might reduce the number of times they see the same patients. Of course, that cuts into how much they collect immediately on co-pays and then how much they collect from the insurance companies. Ultimately, why do they care if you have to come back eight times or more. Sixteen people paying $25 co-pay every month covers the cost of that Lexus, right?
I have just discovered your blog and as a person with several autoimmune diseases and a chronic pain sufferer I look forward to following your writings.
Thank you April! Did you find me from my Facebook page? I have several topics in my tag cloud you can visit:)