My pain started in 8/06, primarily in my mid-spine and right back flank by my kidney. Pain was stabbing and burning. After an extensive workup, docs decided to try removing my gallbladder to see if that might be the cause. I had that done 9/25/06. Two days later, I developed a PE (blood clot in my right lung), was admitted to the hospital and put on blood thinners. Five days later, they found I was bleeding internally from the floor of my liver bed. They spent the next 24 hours reversing the anticoaggulation, and then went in abdominally to fix the bleed.
Unfortunately, after all of this, the pain did not go away. So after 17 total days in the hospital, I was placed on oxycontin and percocet, in the hope that the pain I was feeling was residual pain from the complications I had experienced.
Eight months later, countless doctors, a trip to the Mayo Clinic, and I still did not have a diagnosis. What I did have, was spreading of this pain.
My symptoms increased over time, to include the mid-spine, right flank, right shoulder and elbow (tingling and numbness in pinky/ring finger of right hand), right chest, right breast, right abdomen, right pelvis, right hip, and lateral side of my right leg. I also have random twitches anywhere from feet, hands, abdomen, arms, etc. Most recently with the addition of right neck pain, and exclusively right-sided headaches.
Pain tends to last for extended periods of time at high levels, and then may decline for a few days before starting to increase again.
Pain is also exacerbated by eating, which noone has been able to account for.
I have had four spinal injections, with odd results. The last two, should have numbed me solidly from my chest down to my toes, but they did not even get above my hips, and the last one was very patchy, only numbing my left leg and a few toes. Again, these were verified as being correctly placed via the Mayo when I went there, so something else had to be going on.
Eight months after taking oxycontin and percocet, it was recommended I wean off of these, in case they were causing the pain to continue via gastroparisis (slowing of the gut, more or less). So, very stupidly, I weaned off in six days, which I don't recommend as it was terribly painful.
However, after a month, the pain still remained.
It was not until late August, that I was FINALLY diagnosed, via skin biopsy as having a condition known as Small Fiber Neuropathy.
During the past year, I have tried, oxycontin, percocet, cymbalta, neurontin, lyrica (neurontin/lyrica actually made the pain worse), prilosec, ultram, tramadol, lexapro, lyrica, ambien cr, effexor xr, 1000 mcg of B12, acupuncture, and a cervical spine chiropractor.
I have been told that unless a cause can be determined, treatment is symptomatic. Unfortunately, we have yet to find anything that actually treats the symptoms. In addition, my neurologist said that he ruled out more than 95% of the probable causes, including diabetes, glucose intolerance, aids, lupus, lyme, celiac, vitamin deficiency, etc. He said that basically means, that there is a very remote chance we will find out not only why I have this, but how to treat the underlying cause.
I told one of my docs, that this basically feels like a heart attack on my right side, with stabbing, burning and crushing pain. I at least know that I have this neuropathy and nerve damage, however, w/o a cause, and w/o any successful attempts at reducing the pain, I am unsure what to do next.
I have continued to push my docs to keep searching and looking to see if there is anything else that they can find to determine a cause, however, very few people know much about this condition, at least in my area.
So, that is about it. I am looking for anyone who has had similar pain or seen someone w/ similar symptoms, or has any suggestions, I am open to them. I know I have not suffered as long as some, but I am 31 and I have 3 young kids. I want to find some way to get back to a sense of normalcy at at least do a better job of being there for my boys.