General Anesthetic and Severe M.E

I have severe M.E, I am bedbound.
I have to go to hospital for a procedure which is going to require a general anaesthetic. The procedure should only take 5 / 10 minutes.
My question is, has anyone who is severe had a G . Anesthetic?
How has is affected your M.E ?
What should I tell the Anesthesiologist about my illness?
I have mild Pots.
No horror stories please.

 

This isn't a horror story unless you don't know about it, and the problem it describes can be easily avoided if you prepare in advance. If it does affect you after the event, take vitamin B12 to refill your coffers and replace any damaged B12 :

Severe Neurologic Deficit after Nitrous Oxide Anesthesia | Anesthesiology | American Society of Anesthesiologists

Vitamin B12 Deficiency and Anesthesia

 

I had to have a general anaesthetic in my 30s. At that point, I too was bedbound, and, looking back, had POTS. I looked to the MEA literature for advice and passed it on to the anaesthetist (and I was fine!).

I would expect the advice to have been updated by now. I'd get in touch with the MEA.

Good luck!

 

Leaflet available online, cost £1 - https://meassociation.org.uk/product/anaesthetics-your-questions-answered/

Not personal experience but you might want to focus on Pre Anaesthesia drugs where there may be more latitude in choice/avoidance/inclusion than on the actual GA being used https://bnf.nice.org.uk/treatment-summaries/pre-medication-and-peri-operative-drugs/

 

there is some info here https://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/
some info here
https://www.thegracecharityforme.org/wp-content/uploads/2016/10/HospitalBooklet2012.pdf

 

Last week I had midazolam and fentanyl for a procedure. It was not a general anaesthetic but conscious sedation and local anaesthetic. I had no problems with at all. I was weak and tired the next couple of days, but that would have been expected even without the drugs and I was completely back to normal by the third day. I am very sensitive to most drugs, even at low doses, so was surprised not to have any adverse effects.

 

I had two anaesthetics last year, and I don't think that they caused any side effects. The problems in hospital are noise ,bright lights and excess activity so you need to plan for those. I wore my eye mask and earplugs while being anaesthetised and the eye mask had been replaced when I got back to recovery.

If you suffer from migraine and have to fast, the anaesthetist would consider putting up an IV line if fasting triggers a migraine.

 

I don't have severe ME (I'm not always bedridden), but I have had many surgeries over the years, and I do feel that with each successive surgery, my overall fatigue gets worse and/or the surgery takes longer to recover from, especially if I have general. My last surgery (shoulder replacement in March 2022) required general, and it's hard to say whether the anesthesia alone is why my overall health is worse now, as I also took an exhausting trip in June that may have contributed more to my worsened ME. I always ask before a surgery if non-general is an option (nerve blocks, while harder for recovery pain, are easier on my fatigue; spinal blocks; etc. with mild sedation are my preference), and if general is required, I talk to the anesthesiologist before the surgery and ask for the lowest possible amount of anesthetizing medication.

Not sure if this is helpful.