Surgery with ME/CFS

A

Angel Bryan

Messages
38
Location
México
Hello everyone.

I’ll need to undergo major surgery in a few years, and I’m concerned because I know that surgery can be a potential trigger or aggravator of ME/CFS. I’m afraid that it could worsen my current symptoms or even push me into a severe state.

My ME/CFS symptoms were triggered by a vaccine early last year. Since then, I’ve been gradually improving, but I still experience some lingering symptoms that flare up occasionally.

The upcoming surgery will place a significant strain on my body, as it involves cutting bone and will cause substantial stress and inflammation.

Has anyone here gone through major surgery while dealing with ME/CFS? I would really appreciate hearing about your experiences.

I’ve been questioning whether the potential benefits of the surgery outweigh the risks. Any insight would be helpful.
 
W

Wishful

Senior Member
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6,371
Location
Alberta
Anything can be a potential aggravator of ME, and anything can provide a reduction in ME symptoms. No one knows in advance which way a person will respond. If you did a poll, I expect you'd get a few more "increased my ME severity temporarily" than "reduced it", but even if the results were 17% worse and 8% better, there's no way to know in advance which group you'd be in.

Major surgery implies a major problem that needs to be fixed, so you should have some idea what the benefits are worth. The potential risks ME-wise are much harder to judge.

I have two upcoming surgeries: cataracts and removal of a cyst that's making my ankle hurt. I have no concerns about ME effects from those, and expect significant improvements in quality of life. However, I've never had long-term increase in ME severity from any avoidable cause. Those who crash frequently and for long periods might judge risks much higher.
 
Mary

Mary

Moderator Resource
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18,184
Location
Texas Hill Country
@Angel Bryan - I had abdominal surgery two years ago to remove a large cyst (benign) on my liver. I had no choice, had to get it done and I had a very good surgeon. It was almost a surreal experience to be treated with respect and concern by a doctor - it had been awhile! It took me several weeks to recover, probably partly due to being without my supplements for 2 weeks while I was in the hospital. I hate that one has very little control over drugs etc. given while hospitalized.

However, I did get back to baseline within several weeks and my ME/CFS was not worsened. I do crash frequently, though I recover rather quickly also due to branched chain amino acids. I'm considered to have mild or moderate ME/CFS, not sure which - able to do 4 hours of light activity on a good day. I've had ME/CFS for almost 27 years now.

I wouldn't waste energy right now worrying about a surgery that won't happen for a few years. Who knows? Maybe there will be major developments in ME treatments by then. Maybe not of course, but you never know. And you're steadily improving, which is a very good sign. So instead I would concentrate on doing what you can to improve your health, which I'm guessing you're already doing because you are already improving.
 
K

kushami

Senior Member
Messages
686
Occasionally people with ME/CFS (and also dysautonomia) report that something they received while in hospital for surgery improved their symptoms, so you never know which way it is going to go.
 
A

Angel Bryan

Messages
38
Location
México
ilivewithcfs said:
I had a knee surgery and it didn't affect my ME at all. I also had 20 rounds of ect, each of them required general anastesia, and it also didn't affect my ME in any way.
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My surgery will be rougher as it involves cutting a big chunk of bone.
Mary said:
Maybe there will be major developments in ME treatments by then.
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I only hope that AI find a cure and get all of us out from this, but is still not fast enough and research is still underfunded. I have a lot of respect to you and anyone else who have been waiting decades.
Mary said:
you are already improving.
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I was until I had stress some days ago and now symptoms are back. How I am supposed to live like this if I can't tolerate any stress? I now can imagine how it will be with surgery.
 
Mary

Mary

Moderator Resource
Messages
18,184
Location
Texas Hill Country
Angel Bryan said:
I was until I had stress some days ago and now symptoms are back. How I am supposed to live like this if I can't tolerate any stress? I now can imagine how it will be with surgery.
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I learned not to worry about things. Worry doesn't solve anything and actually only makes things worse. so if you spend your time worrying about what will happen a few years from now, or even tomorrow, it's causing stress and doesn't help solve the problem.

I've learned to take one thing at a time, do what I can, and let go. Relaxation tapes can be helpful. Also, I recently came across a very simple technique which helps stimulate the parasympathetic nervous system (rest and relax): https://forums.phoenixrising.me/thr...m-it-put-me-back-to-sleep.93294/#post-2475409

Also meditation can be helpful.

Just about everyone here has trouble dealing with stress, it's part of ME/CFS - and you're right, stress does make things worse. This morning I'm dealing with a horrific pet emergency, and I think all my practice of not worrying is keeping me together. I'm doing one thing at a time, and then waiting to see what I need to do next. And that's all I can do.
 
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