In the time since my last update in the beginning of November, I continue to have chronic pain since the 2.5 weeks after my 8th surgery to remove my gall bladder and adhesions for the third time. A lot and yet not enough has occurred during this span.
Carafate didn't affect my symptoms. My liver and pancreas enzymes were elevated. My GI started me on Lyrica in December and within a week, I started to notice an improvement to my pain. While I continue to have pain, it is far more tolerable now with the Lyrica. Afterwards, my liver enzymes decreased to the normal range however my pancreas enzyme continued to increase. This triggered a MRCP to be completed which didn't reveal any new findings or issues. With the GI system being cleared, it was recommended to see a neurologist.
This month I saw rheumatology and neurology for consults. Rheumatology completed labs and started me on a trial of Hydrocortisone. While he didn't believe I had any autoimmune diseases, he wanted to try these two things in order to help rule them out as a possibility. He reasoned that while lab work for autoimmune diseases is not as accurate at identifying an autoimmune issue, trying a steroid would further help identify if an issue existed. I agreed to try the Hydrocortisone as I am allergic to Prednisone - experiencing a combination of acidic stool and painful, fragile, rash like skin that creates an awful combination for using the restroom. The Hydrocortisone is more in line with the body's natural cortisol and typically doesn't have side effects. My labs were all normal. I tolerated a low dose of Hydrocortisone without issue although I also didn't notice an improvement to my pain either. Therefore, I was instructed to double my dose. Within a few hours of my first doubled dose, I experienced the same reaction I have to Prednisone and this side effect lasted for over 24 hours before finally resolving for my body to return to its status quo. I didn't try a second dose - doubled or not - after this. With these results, rheumatology released me advising he believes my pain is a nerve and muscle system issue.
Two days later, I was able to have my consult with neurology. He had me complete different physical tests in the office and poked my pain areas with a safety pin to evaluate how pain feels to me in these areas. I'm uncertain what my reactions and performances meant, although he said there were a lot of inconsistencies in my reaction to the safety pin test as the majority of my pain areas felt dull to the pricks.
While Fibromyalgia was mentioned, it doesn't fit my pain symptoms. Fibromyalgia is explained as having wide spread dull pain. My pain is sharp, stabbing, crushing, and squeezing with very little dull pain. This is even with the Lyrica helping to reduce the severity and duration of pain episodes. My pain migrates around my torso - from my front, sides, and back and typically is not located within the mid range of my abdomen. At times I do have pain in my hips and sometimes even my knees, particularly if my hips are hurting. Fortunately, the mid range abdominal sensations that my insides were hanging outside of my body have ceased and my incisions are no longer feeling strained. I'm uncertain if these changes are due to the Lyrica or simply time. I have also noticed significant improvement to the balance issues I was experiencing following surgery until the end of December. I was randomly nearly falling over when simply standing or sitting still at least once a week, if not more frequently.
The neurologist explained that my pain may be caused by Multiple Sclerosis (MS) and ordered MRIs with and without contrast of my brain and spine to check for plaque on my brain and/or spinal cord caused by MS as well as tumors or other growths that may be caused by Central Nervous System Cancers (CNS) due to my higher risk for CNS cancers from the FAP. He explained, if my pain isn't caused by either of these two conditions, he doesn't know why I'm having nerve pain. I wasn't surprised by the mention of MS as my pain perfectly describes MS Hugs.
I also had a follow up with my nephrologist this month who maintains that my pain is caused by severe dehydration and I that I simply need to increase my fluid and potassium intake. While these are not bad changes for me to make, I don't believe these steps will resolve my pain.
I'm continuing to await my MRIs and will have my neurology follow up in mid-February.
I am mentally prepared for the possibility of cancer as I have long anticipated a cancer diagnosis at some point in my life due to the FAP. I am not, however, prepared for a MS diagnosis although I truly anticipate this will be the finding.
I am also resuming counseling as the last year has taken a toll on my mental health.
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