Jon Miles, UK - firstname.lastname@example.org
Note - I run the coccyx.org website. See my previous history here.
In 2015, 16 years after my coccygectomy, I was 90% better than before the operation, but still had some neuropathic pain which limited me in some ways. Prolonged pressure on my lower back (top of the pelvis) caused a strange tingling pain in that area. I wanted to try to reduce that problem, so I went to a pain clinic in London, and they suggested pregabalin (Lyrica). I tried that for a couple of months, and found no improvement, but I had very unpleasant side-effects. Maybe, with hindsight, I should have tried longer.
I weaned myself off the drug over a couple of weeks, and found to my distress that I had much more pain than before, set off by sitting, or even by lying on my side. This continued for months without improving. The pain clinic told me they had never seen this happen before. But now I really needed treatment.
A friend who is a physiotherapist recommended a pain specialist who sees patients at Southampton and Oxford, UK. I saw him privately at Oxford. He put me on Duloxetine (Cymbalta). He told me to start with 30 mg/day, then move up to 60 mg. I found the 30 mg made me so exhausted that I could not possibly increase to 60. I stuck at 30, and over 6 months the pain reduced about 30%. I saw the specialist again, and he said that taking low doses of two different types of drugs for neuropathic pain was often more effective, and suggested staying on the duloxetine and adding a low dose of a tri-cyclic anti-depressive, lofepramine or dosulepin.
I tried the lofepramine, but it made peeing painful and difficult, a known possible side-effect. So I changed to dosulepin, which I had had before, around the time of my operation. This gradually reduced my pain over about 6 months, and I was able to reduce the duloxetine to zero, as it was still making me very lethargic. For the past eight months I have been taking 50 mg/day of dosulepin, and I am happy to say that I am back to the position I was in before trying pregabalin. Not perfect, but again 90% better than before my operation.
A particularly interesting point that the specialist made to me was: you need to be on this type of drug for two years; the first year to fully establish the pain relief, and the second to make it permanent. I will certainly follow that advice, and when I get to the point of coming off the drug, I will do so in small steps over 6 months, stopping the reduction if the pain starts to come back. I would be content to continue taking dosulepin for the rest of my life if necessary. For me, the side-effects were small - sleepiness in the first few months, and a continuing slight dulling of my connection with the world.
Another thing that I found helped me a lot with the neuropathic pain was a TENS machine. I put one pad on each buttock, just below where the coccyx was, and I kept it switched on all the time that I was sitting. This greatly reduced the after-effects of sitting. I also used it at other times if I had some pain. I no longer need it now, except maybe if I am driving on a long journey.