This all sounds familiar….
I have had hypersensitivity problems and chronic pain since 1995. It eventually “progressed”, and I was diagnosed with “sensory neuronopathy of the dorsal root ganglion” by Dr. Gareth Parry, who seems to be known to you guys.
In 2001 I started having real issues with the progressive nature. I have been given all the treatments, starting with just amytriptiline, neurontin, steriods and up to and includnig 3 years of IViG, which eventually lost its efficacy.
In Feb of this year, I had a huge “acute” episode where I felt like chainsaws were continually attacking my hands, feet, and back. I ended up in hospital and was diagnosed with CIDP (I think a sensory variant as my motor symptoms are mostly a slightly drop feet, reflex loss and inability to hold and cut things, and inability to orient myself in space). I did 8 weeks of plasmapheresis which helped, and now we are back to IViG as well as azathioprine. Unfortunately the chain saws are back now after only 3 weeks.
I think that anyone with this type of situation has to realise that it is a “forever” thing. It comes and goes, day by day. I managed to have a child and work full-time up until Feb, with the support of my partner. Since then, I have been looking after myself abit more. Lesson learned the hard way. Finding this forum is a way of realising you are not alone.