Hi
I've been under many times in my journey with this illness. I think that so far, for me anyway, propofol hasn't been a problem. I've had more trouble getting past it, perhaps most folks take 2 days and I take 4 or 5. The actual procedures are what seem to get me. Healing is a bit harder with this illness, so for example I had gallbladder surgery and while a "normal" person might take 3 weeks to be all set and back to normal I took 2 months. I think the most important thing is to get your home all set with the liquid meals you will need afterward and then dedicate yourself to just healing. btw, not sure if they are suggesting any particular kind of protein for your drinks but after bariatric surgery I found syntrax nectar medical unflavored, I still use it now, 3 1/2 yrs later. No flavor at all, you just mix it in and get good quality whey protein. Also, we are in such need of B vitamins with this illness, please think of perhaps getting some sublingual b complex you can take while you can't eat meat and such.... Wishing you well

There are special considerations for ME/CFS patients undergoing anaesthesia. When I got my cataract surgery, I asked the anaesthesia nurse to search Google for ME/CFS+anaesthesia.

She did, and she told me she found a surprising amount of pertinent info, which she was glad to have. This was just between me and her, she said. She gave me a lower dose of a tranquilizer and nothing else.

I got through the surgeries just fine, and there were no problems with the surgeon. He never noticed any difference, apparently. I just acted dazed throughout, and he seemed content with that...LOL.

I've had other minor surgeries and the main thing I noticed is that recovery takes much longer in general for me than it does for other patients. But you know, that's the kind of thing we're used to by now. I take a long time to recover from exercise...but the main thing is that I DO recover.

Thank you for your quick response. I will look into the recommendations and pass them on to my doctor. I have been very concerned, but he said I reallly need to do it now while I am healthy. I told him I wasn't healthy! I was sensitive that day :) He said I was healthier at 52 than I will be at 72. It would be nice to be free of the machine and I know it would help. I am reactive hypoglycemic so it worries me about the blood sugar issue. the protein tip and preparing meals will help me overcome any potential problems.

Unfortunately I've had many surgeries since getting CFS, I've had both hips resurfaced (the new replacement) and both knees replaced. Each time I was completely under and for my hips I was in the hospital about 2 days.

I was fine with anesthesia, no problems at all.

I also recovered faster than any of the other people who had surgery with me. I felt good, I guess because of the bedrest that comes with surgeries like this.

I would echo the other comments. I have had many surgeries since getting CFS. I think that the anesthesia may bother me some, in that I feel foggier for several months after a surgery. But, it could just be the recovery from the surgery that is causing me to crash. Recovering from surgery does take much longer with CFS, but I wouldn't avoid a surgery that might help you. Just do the research Richie suggested and you might find some good information. Best of luck to you.

When I've had to be "put under", 3 times, I did fine, but it took me longer to regain strength that the average person, but nothing unusual for those of us w ME/CFS. If I need to do it again, I will be sure to talk with my Naturopath about starting and continuing a good detox program for after the surgery in order to unload the medications from my liver and lymph system.
Good luck. I hope it goes well for you and helps with your apnea. And your MD is right, that healing will be a lot faster at your age than 20 years from now... As the others say, do your research to make sure you can put in smoothie form the right nutrients for meals and recovery. Hugs!

I did what Richie said! I Googled CFS/anesthesia! There is a plethora of do's and do nots as far as what we can tolerate when we PWC's are "under".

Propofol is a really good drug for us. It is short acting is seems to work extremely well for me! I have had three procedures or two (brain fog) where Propofol was used and I did well coming out. I did have some brain fog for an extended period of time, but no inability to function. I recovered well with no lasting side effects.

I would tell you doctor/surgeon to do his research. Seriously, Google CFS and anesthesia, print out a copy of things that don't work with our bodies and hand it to the doctor.

If this is jaw surgery, then yes, you will need proper nutrition supplementation for sure. I'm sure they will address that for you.

Give them the info.!! They WILL read it if you insist. Doctors DO want to be informed. I do believe that there are several types of anesthesia that do NOT go well with us, and they are all addressed on line.

I wish you the best! Let us know if you can't find any information! xo

Ask to speak with your anesthesiologist before the day of surgery. If you feel he/she is not listening to your concerns, ask for a different anesthesiologist. I have had surgeries for breast cancer, lung cancer, hip replacement, and a hysterectomy since I became ill with CFS or is it SEID now. I always ask the anesthesiologist to start with the lowest dose possible.

I would second what 2DanceAgain said. Don't trust your doctor to "pass along" your concerns, you risk that he'll just trivialize our illness and dismiss your concerns after he gives you all kinds of reassurances.

Insist on speaking directly to the anaesthesiologist. Give him or her specific links to guidelines, don't just be vague about your concerns. It's way too easy for a healthcare professional to dismiss our concerns as preoperative anxiety. At the very least ask that the anaesthesiologist Google "ME/CFS+anaesthesia". Don't be vague and say "look up CFS"....they'll run into a ton of irrelevant links if you do that...and they'll give up.

It's really important that you come off any supplements, herbs, etc that you are on a few weeks before the op as these can interact and interfere with anaesthesia. Your doc should explain that to you and obviously you need to discuss it with your doctor properly. I recently looked it up, and a lot of herbs interact badly with meds they give you during surgery. Just in case you are taking anything.

This is some really good advice. Thank you soooo much. I will research the anesthesia and CFS and will talk with the anesthesiologist before my surgery. Thanks again - you guys have really helped with my fears. Now I just have to get past the anxiety of my jaws being wired shut for 6 weeks - : ( I will probably need drugs!

TammyDiane - I too have reactive hypoglycemia - I developed it about 10 months after having bariatric surgery. Mine is the postprandial type. I'd be happy to bounce things off each other about this most difficult illness....
Wishing you well with your surgery - peace -

Last thing I expected last week was to end up in the ER with pains on right side. Then found our gallbladder inflamed and calling for surgery. I am tapering off of klonopin, trying to remember what medicines not to take or what not to do under anesthesia. But with so much morphine in me... can't think but can pray.

Gallbladder removed on 2-17-15 and stayed at my son's house recovering and now back home (still recovering). Live alone so eating soft foods. My tongue looked like it had oral thrush, hard to swallow and now a cough day /night not helping stitches. No, we don't heal like normal people. I was suppose to go home on the 16th. They told me I shouldn't be taking anymore pain meds, (but that is for normal people) Since ME/CFS, had harder time when put under as in more pain than most and recovery is longer.

I wish you well on your surgery and recovery {hugs}

so sorry you are struggling tiredbunni. It took me a longer time than normal on my hysterectomy too. I hope to heal and feel better soon.

Hi Nina1959, I am not sure what postprandial type is. I have noticed my hypoglycemia is so much better now that I am eating glutin free and white carb free.

Wanted to bump this up -
Had a quick procedure about 2 wks ago, propofol and all.
I think this time I had more of an issue than usual.
I'm having a lot of trouble thinking clearly and I feel like I am in a supercrash of sorts. I can't get out of my own way and I just showered and it's 11:30. That's not me. I'm very weak, walking is an issue and lifting my arms to cook, etc. I've had migraines, some silent, since the procedure as well. I feel like I want to just bang my head against a wall and shake the lead out of it. I called the hospital and they said it couldn't be the propofol but I am reading where it can be in some cases a problem if people have chronic illness.
So, see my pcp? Wait it out? call the actual anesthesiologist? can't think here. thanks.