Update: Changes In The Works
To everyone who follows me and everyone who has stopped in and read a piece or two, thank you for your interest. I will continue to post here on occasion, but as I do not get as much exposure here as I do on other sites, you will likely see pieces I’ve written for painnewsnetwork.org, The Mighty, International Pain Foundation (where I am a Delegate, now), and other pain and health sites. I also need to inform you that this is no longer a Fibromyalgia blog only. At the time I began this blog, I had been diagnosed with Endometriosis, Fibromyalgia, Interstitial Cystitis, chronic Migraines, and Uterine Fibroids.
Since then, I have spent a total of about three months (broken up into a week or two at a time) and have acquired a long list of new diagnoses. This list includes Complex Regional Pain Syndrome (CRPS), also known as RSD (Reflex Sympathetic Dystrophy), This neuro-autoimmune disease is one which effects one’s entire Central and Autonomic nervous systems, as well as many other bodily systems. It is not at all well known or well understood by doctors, and it is extremely difficult to convince doctors to educate themselves, or allow the patient to educate them.
Also, after a year of acute attacks of pain, post gallbladder removal surgery, I was convinced (by the location and specifics of my pain and symptoms) that I had Chronic Pancreatitis. However, after too many ER visits to count, where I was of course called a drug-seeker, and released, I finally developed a measurable symptom…the doctors didn’t tell me that, though. They simply said they wanted to keep me in the hospital for further observation and pain control. Just as one of the hospitalists was entering my room to tell me I would be discharged on the third day, I overheard the nurse saying that my liver enzymes where over 3000. I stopped the doctor mid “Goodbye speech,” and told him I was concerned about my elevated liver enzymes. He angrily asked me how I knew about that! Long-story short, I was kept for another week, ultimately receiving an ERCP with sphincterotomy. I was then diagnosed with Sphincter of Oddi Dysfunction.
I suffered another year, in and out of the ER and hospital, being dismissed as someone with “Chronic Abdominal Pain.” Until finally I went to a biliary specialist, who did another ERCP and placed stents in my liver and pancreas. I remained hospitalized for a week, finally getting the confirmation that I do in fact suffer from Chronic Pancreatitis. Consequently, I was hospitalized again, because the stent in my pancreas was causing a major attack (none of this EVER showed up on blood tests or imaging, by the way. So, if you think you might be suffering from any of thee conditions, PUSH until you get a diagnosis! But, be prepared to be accused of drug seeking and mental conditions, because doctors no longer use symptoms as a means if diagnosis. If it doesn’t show on a test, you don’t have it. Period. But, if you keep pushing, you’ll finally get the test that shows something. For me it was the ERCP. I’ve als developed Carpal Tunnel Syndrome and/or peripheral neuropathy–the diagnosis is still out on that one, too. I have become quite outspoken in the advocacy world, as a Delegate for the International Pain Foundation (formerly Power of Pain), as well as the Kentucky Pain Care Action Network, and as a regular columnist for painnewsnetwork.org.