Last time I posted it was immediately after the attempt at a Ketamine infusion. I did at least have lower pain for the 2 weeks following it - but not enough to drop out any medications. I saw my Pain Management specialist about 3 weeks later, and he decided to increase the Duloxetine to the normal theraputic dose of 60mg/day. He also suggested that some Lidocaine patches might be able to help, and gave me a prescription to get some to test.
Since then, pain has been mostly stable. I've been able to drive with the steering wheel merely causing discomfort - and not escalating over time as I drove. I've been able to do most normal activities without too many issues (apart from the "stand-up get-dizzies"). But I still haven't been able to use a computer mouse (I tried - it only took about 2 minutes for my palm to catch fire), and carrying things when shopping (like a couple of spools of thread!) also sets my palms burning and fingertips feeling mashed/bruised. I have to be careful holding my husband's hand when we're out - the outside of my index finger starts getting chilli-burned within a few seconds, so I've learned to pull my index finger out on top of his hand instead of clasping it around/in his hand. That finger seems to be ultra-sensitive to touch.
I did go and see a Neurologist. He was intrigued by the puzzle of what had been happening (and the huge bundle of documentation my Rheumy had sent him) and decided it was worthwhile to do a few new tests. In his opinion, the most common cause of neuropathy in women my age is due to MS, and as my cousin actually has MS he wanted to rule that out. He was also not sure that the neuropathy is being caused by Sjogren's - because (in his words) "the people with Sjogren's that I've seen previously had both large and small fibre nerve damage". Apparently there is one test available in Australia for testing for small fibre neuropathy - the Qualitative Sensory Test (QST), so he wanted me to go for that too.
When the Neurologist's test results came back, the MRIs absolutely proved that there was no demyelenation occurring - so I definitely do NOT have MS. The QST test came back with sensory anomalies - loss of temperature sense in the foot tested, and loss of vibrational sense in the hand tested. The results were consistent with a length-dependent small fibre neuropathy...and the Neurologist couldn't drop me fast enough after confirming that diagnosis, since there was absolutely nothing he could do to help me. He's passed me back to my Rheumy, with a suggestion for a few additional tests if they hadn't already been done to rule out there being some cause other than the Sjogren's for the SFN. I really do think it unlikely that they will find something else...I've tested as dead-centre of the normal range for glucose tolerance (absolutely not diabetic), I'm not coeliac (though I am severely wheat-intolerant...but rye and barley are fine), I don't drink, I don't have hepatitis, etc. That rules out most of the other potential causes...
When I saw my Pain Management Specialist at the end of Jan, he proposed trying to increase the Duloxetine to 90mg since the 60mg had stabilized things. To do that, I needed to drop my use of Tramadol - but he suspected that with the Duloxetine interfering with the Tramadol, Tramadol wouldn't be doing much anymore anyway. I initially tried to do it straight out...and 36hrs later had severe skin pain that felt like what had happened in the Ketamine infusion, just not quite as intense. I figured it was a withdrawal reaction, and went back to the previously stable doses. Then I talked with my GP about how to properly taper off the Tramadol so that I could try increasing the Duloxetine safely. As I tapered it off, I noticed a definite increase in pain, in a dose-related pattern. The final week while I stabilised on the lower dose before increasing the Duloxetine (so that I knew any bad reactions were due to Duloxetine and not to the lower doses of Tramadol), the pain was very noticeable...so I decided it was a good time to test the Lidocaine patches. They managed to make my hands feel like "normal" hands at the end of the day, so they most definitely DID help! They also cost $160 for 30 patches, and a single patch could only be used for 2-3 days. Still, it made it possible to get through the last couple of work days for that week.
Then I tried increasing the Duloxetine. With the initial increase (and much less strongly, the original dose) there was a noticeable effect within the first couple of days, and it increased in effectiveness over the first week. With the increase from 60mg to 90mg...there was no noticeable improvement, and in fact the pain in my hands deteriorated daily. When the touch-sensitivity of my hands reached the point that tying my hair back first thing in the morning caused 6/10 level pain - with mornings being normally the best time of the day for me! - I called the increase a failure and reverted back to the Tramadol + 60mg Duloxetine that had been working and holding stable (as had been discussed with my Pain Management specialist prior to making the trial).
I'm still holding relatively stable with the Lyrica + Tramadol + 60mg of Duloxetine, but there has been a minor increase in overall "reactivity" of my hands to random touch. I've had a few more days where I needed additional Tramadol to deal with break-through pain, and have used another lidocaine patch when things were getting nasty. I'm still stable...but not as good as I was prior to testing increasing the Duloxetine. My fear is that the severity is still slowly ticking up underneath the current medications, and that sometime soon they'll fail to be enough to keep it under control. I try not to dwell on that though...and focus on enjoying what I have while I still have it.