Surviving Surgery with ME/CFS and FM: Pat's Story

Surviving Surgery with ME/CFS and FM: Pat's Story

Pat's Story

Luck or Due Diligence?

We all know people with ME/CFS and/or FM who have had to have various types of surgeries and have ended up bedridden for weeks or months after surgery and sometimes suffered other horrendous events such as strokes or heart problems as a result of the surgeries themselves. Some have even ended up in nursing homes to recover. Some people with chronic fatigue syndrome suffer severe relapses from surgery but Pat didn’t – not even after three of them in three months.

I have had three major surgeries in a little over three months and, while the healing has been slow because of low blood pressure and low blood flow to the incision area, I have not experienced any relapse inME/CFS or FM symptoms. It may very well be that I’m just one of the lucky ones, but I have a gut feeling that it’s the result of being extremely diligent about educating the surgical team and anesthesiologists before going into any of the surgeries. I am passing this information along in the hope that it will be of use to anyone who might be facing surgery in the future.

My Personal Survive Surgery with Chronic Fatigue Syndrome (ME/CFS) Protocol

Provide a List of all Medications and Supplements (including the dosage amount) You are Currently Taking.

You may need to stop taking many of these at least ten days prior to surgery and some you won’t be able to start taking again for a certain period of time. A pain drug and the antibiotics Pat’s surgeon was going to use were on her ‘drugs to avoid’ list.

Provide a List of any Medications That You Have Previously Taken That Have Caused Adverse Reactions.

The pain medication and antibiotic that my surgeon was originally going to prescribe for me happened to be on my list so both were switched to something I could tolerate thereby avoiding a reaction.

ME/CFS/FM Anesthesia Warning Card

Always carry the ME/CFS/FM Anesthesia Warning card with you and show it to the doctor whenever you are going to have any type of anesthesia, even local anesthesia that may be used for dental procedures. It is not only for use in emergency situations. Psychologically, there is something about having a laminated alert warning card that carries more authority than just verbally informing someone that you are sensitive to certain medications or even handing them a study you’ve printed out from the internet.

The New Jersey CFS Association offers a printable card you can carry in your wallet (at regarding precautions in case you should need anesthesia in an emergency. It is based on advice to doctors/patients who are about to be hospitalized or have surgery, developed by Dr. Charles Lapp and Dr. Paul Cheney at

Provide a letter from the doctor who treats you for ME/CFS and/or FM explaining that he/she treats you for this condition and is communicating specific concerns to your surgical team and anesthesiologists regarding your low blood volume state and the need for saline hydration.

In my particular case, the letter included the following wording:

“She has a chronic low blood volume state, the severity is well predicted by her baseline pulse. She will be more hemodynamically stable with at least one liter of normal saline on board pre-op, and the line continued for 24 hours post-op to allow additional fluids, continuing fluids at 100 to 150 cc/hour to allow an additional 2 liters post-op. She should then push po fluids with electrolytes for 3-4 days to improve her recovery rate. She has a problem with detoxification pathways, which means she may have a longer anesthesia effect, drugs detoxified by cytochrome p 450 pathways may linger.”

Provide Copies of Each of the Above Items to Your Surgeon, the Hospital During the Pre-Registration Process, Your Pre-op Nurse the Day of Surgery, and Your Anesthesiologists.

If you aren’t able to meet with your anesthesiologists before the day of surgery, make sure they read the information and ask them to sign the copies indicating that they have read it and understand the protocol. Also have your pre-op nurse read and sign it so you have ample time to receive the IV saline prior to surgery.

It is particularly important that you receive at least a liter of saline prior to surgery, perhaps more if your surgery is not scheduled until later in the afternoon, because you will be extremely dehydrated by then since you are not permitted to drink anything after midnight prior to surgery. My first surgery was scheduled very early in the morning so I had a liter of saline pre-op and received a number of liters post-op because I spent two nights in the hospital and they kept replacing the empty bag.

My second surgery got delayed until late afternoon so I received two liters pre-op and at least two more post-op because I stayed overnight in the hospital. My third surgery also got delayed a few hours so I received two liters pre-op,but only one liter after surgery because I came home the same day. I did notice the day after the third surgery that the lymph nodes in my neck were enlarged and I had some swelling in my ankle and foot. This passed after a couple of days and I’m convinced it would not have happened at all if I had received at least one additional liter before being released from the hospital.

While I’m still healing from the last surgery on Aug. 2nd, I know that I came through all three surgeries much better than many of my non-ME/CFS/FM friends have after similar surgeries and I am extremely grateful. As I said earlier, it might be that I’m just one of the lucky ones; but it could also be that due diligence in taking the extra precautions listed above made all the difference. I hope none of you ever need surgery but, if you do, I hope this information is helpful to you.

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