Hi all, I am still in limbo as the rheumatologist (the one I went to for a 2nd opinion) is saying that my diagnosis will likely stay at UCTD for the time being until they catch other things going on in bloods / tests.
Firstly, they definitely want to do a lip biopsy (should have been ordered 6 months ago but got lost in the system). My original rheumy says that this is a lot of pain for little gain as they are often negative but this does not rule out sjogren's completely.
Secondly, I have had for 4 years now a painful (often swollen) inguinal lymph gland up and down in my right groin. Sometimes the pain is so bad that I struggle to weight bear. They suggest a scan and possibly a biopsy of this too if necessary.
Thirdly, because of all the problems in my neck and shoulder they suggest I go on Pregabalin (a sister of Gabapentin) - a CT scan shows I have degeneration of C4-C7 with nerve root involvement at C5 - and they believe this will help. I was offered a nerve block which was then refused me last month as I turned down the Gabapentin earlier this year due to the acid reflux I was experiencing and the research I have done.
I am terrified of this drug. All my research into this says DO NOT touch this or Gabapentin as the side effects are horrendous and coming off them is harrowing for many. My sibling is on Gabapetin and cannot function easily and is often forgetful and slow. However, I have to work and need to drive to school and teach all day so need to be firing on all four cylinders. I know everyone is different and my need for a pain free life is immense, yet I cannot emphasise how distressing this decision is for me.
Does anyone have any experience of this drug?
Thanks in advance