Acute Autonomic Crisis

[CecilyParsley]

Hi everyone, I hope that you are having as pain free a day as possible. Just an update on my follow up appointment.

I had probably one of the worst weeks of my life last week. Weaning off morphine and Citalopram, side effects from the Duloxitine and then such a bad flare up of the burning pain that I did not sleep for four days and nights. I jerked and spasmed, sweated and shivered. I felt that I would lose my mind. So when I saw the Consultant on Tuesday I wanted the nerve blockers badly but she refused to do them.

I felt gutted and then she explained my resting heartbeat was 144, my BP was raised, my breathing was laboured from sheer exhaustion. Then she told me that the combined pain from the osteoarthritis, Bechets, hamstring injury and the onset of the pelvic pain had set my autonomic nervous system into crisis. I did not really understand all the medical terminology she used but she said that she now understood why I had told her the agitation was much worse than the pain. She said the autonomic system can affect heart rate, breathing, bowel and bladder function. Sweating, shivering, balance, dropping things, being clumsy, sleep all the things the medical profession have shrugged at for 15 years.

My reality she said is that whike my body is twitching, and hypersensitive it would be difficult to differentiate which nerves in my pelvis were affecting me causing the pain. She said she wants to damp down my system and control my pain first. I have to exchange my morphine for another opioid which works differently. I am unable to have it prescribed on the NHS until such time as I have completed a four week drug trial , after which time she will confirm it’s success ( or not) and then the GP can prescribe it.

I am due to have a pre op assessment for my first knee replacement next week but she has warned that should I go ahead there is a very high chance that I will die on the table. I was also warned that if the body is not “ calmed” then my heart could stop beating or I could stop breathing.

I have a mixture of emotions. Relief that someone has at last recognised the cause of my symptoms and not tried to give me Diazapam or merely shrugged. Anger that with all the Rheumatologists, Neurologists, Haematologists, Urologists, Gastroenterologists and Gp’s I have seen in the past 15 years have failed me badly. Apprehension as to where this journey will take me.

I have to see her again in October and if my body is calmer she will agree a date for the nerve blockers.

[janeneil]

dear Cecile,

I read your post with great interest. I am sorry you are suffering so much. It may sound odd but I go to Chinese acupuncture for my pain and it helps me. I believe it can also help autonomic symptoms.

Would it be possible for you to let me know the name of your specialist is, as the ones who recognise autonomic symptoms are few and far between,

[CecilyParsley in reply to janeneil]

Hi thanks for responding. My chiropractor used acupuncture on my hamstrings and dislocating joints. I was sceptical but it did actually provide relief short term for me. My Consultant is an anaesthetist by profession who specialises in pain relief, nerve blockers etc. Her name is Dr Tzvetanka Ivanova-Stoilova. I find her absolutely honest and caring and extremely thorough in a way none of my other Consultants are xx

[janeneil in reply to CecilyParsley]

thank you so much for letting me know, I have to have acupuncture weekly, as otherwise any benefits wear off.

[Pelvicblues]

Sorry to hear about your pain issues, I can understand how frustrating finding relief can be. I have a suggestion that may help with calming your nerves, breathing, heartbeat and lower blood pressure - Free meditation for pain videos on YouTube. I highly recommend giving it a try since it doesn't require money or trips to another doctor. Just open YouTube and type in "meditation for pain" or meditation for whatever issue you have (insomnia, migraine, grief, etc). I have used them for numerous issues over the past 8-10 years and they really helped me get through some difficult things. I also like the acupuncture suggestion which can be done in conjunction with the meditation videos. Praying you feel better soon!

[CecilyParsley in reply to Pelvicblues]

Thank you so much I will be honest I took a mindfullness course and hated it but I will have a look and give it a try xx

[Pelvicblues]

I've never taken an in-person meditation class but I don't think I'd want to either but I loved the YouTube videos because I could do them at my convenience and usually used at bedtime to help me sleep well - just make sure to unselect the auto play feature or you may get a loud obnoxious video next, lol. I also found them helpful because I could choose from many different durations to fit my schedule, like one for anxiety prior to dental work and such.

[CecilyParsley]

I am pleased that you have found something that helps you. The pelvic pain is dreadful. I have had a wonderful day today, a rarity for me. I got to paddle in the sea, walk around an art gallery and eat dinner overlooking the harbour. Tonight I am wracked with pain, despite the morphine, Garbapentin, Dulloxitine. I have a very hot hot water bottle on my tummy and groin which helps thank goodness. It was worth it but the price we pay is hard. I will give the U Tube sessions a go and I thank you for your info xx