Hello everyone, I really hope that you are all as well as you can be. Autumn has arrived wet and windy here in Wales.
Some of you know that for the past five years I have suffered with an intense burning pain internally, spreading through my pelvis that has strange effects on my body. I feel an internal agitation, am unable to sleep, my heart rate increases, I sweat and shiver , twitch and jerk for days until it eases. None of my Doctors took me seriously and it has become more frequent, now every week so I am sleep deprived.
My new GP referred me to Gynaecology but due to a two year waiting list I had a private appointment with a Gynaecologist who told me I had an entrapped pudendal nerve and referred me to a Consultant Anaesthetist specialising in nerve blockers. I cried when she described my pain and acknowledged how bad I felt. The relief was huge. She told me she could not do the nerve blockers yet as I was in an Autonomic Crisis and sghe prescribed two drugs to help soothe my system. One was Duloxitine used for diabetic neuropathy, the other a trial drug Tarpentadol, an opioid. I had to reduce and then stop my morphine sulphate which I have been on for ten years which was not pleasant. I was advised I would feel rough for four days but then be fine.
Well far from being fine my body was wracked with pain, agitated, bile, diarrheoa , jerking, skin crawling. My resting heart rate was 146 bpm, my BP could not be measured on our home cuff. My head was thumping, I dry retched, I could not stand up straight with gut pain, sweat poured off me yet I shivered until my teeth chattered. Last Sunday I thought I was dying. I had had no sleep for six days. I emailed my Consultant. She told me it was strange that I had “ text book reactions” to Duloxitine and told me to stop it. I did but when I took the Tarpentadine I started to feel really ill within forty minutes. I messaged her again and her response, far from being helpful was to suggest I was a hypochondriac?? I sat up all night ( most of it on the loo) I felt so so ill. I rang the GP first thing on Monday. After two and a half hours seeing the GP, being monitored by the nurse then seeing the Pharmacist the consensus was that I had Seratonin Syndrome. I was told I shoukd have phoned 999 as it can be fatal. I was taken off Tarpentadol and put back on the morphine. If my tummy issues do not resolve I need to see the GP again as my gallbladder could have been affected.
Thankfully a week on I am sleeping, eating, resting without agitation. I continue to have brain spasms where my sight is momentarily kinked but it is less frequent thank God. I just wanted you all to be aware of something I had never heard of and get help sooner than I did.
My pelvic pain remains so at some point next month I am seeing the Consultant again hopefully to have the nerve blockers. Wish me luck 🤞🏻
Hospital Treatment 
Go home and have a baby !
