Fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) both can be exacerbated by physical trauma. It’s common for people with these conditions to be especially concerned when facing surgery. They’re generally worried that their condition(s) are likely to flare afterward, which may complicate recovery.
So far, we have very little research-based knowledge of the impact of surgery on FMS or ME/CFS or how our symptoms impact the recovery process. However, a couple of researchers have put together recommendations for us based on their knowledge of the conditions and what they’ve observed in their patients.
These experts are The Fibromyalgia Information Foundation, which was founded by researchers at Oregon Health & Science University, and Charles W. Lapp, MD, who founded the Hunter-Hopkins Center in Charlotte, NC, which specializes in FMS and ME/CFS.
The specific issues we could face after surgery are numerous. Here are those that are pointed out by the experts mentioned above as well as a couple of other considerations, as well as what you can do about each one.
Both FMS and ME/CFS involve hyperalgesia, which is the amplification of pain. That means we’re likely to suffer more post-surgical pain than most people, and therefore greater debilitation.
Especially in FMS, the mere presence of surgical pain could trigger a symptom flare. This is due to central sensitization—hypersensitivity in the central nervous system—which is theorized to be a major feature of these conditions.
Even though you’ll be asleep and won’t be aware of the pain of surgery itself, your brain will still be bombarded with pain signals, to which it will likely over-react, which can trigger a symptom flare.
To help counter this:
- Ask to be given opiate pain medication before surgery to help alleviate the activation of symptoms.
- Ask to have a long-acting local anesthetic used on your incision.
In addition, standard prescriptions of post-op pain medications may not be strong enough or allow for enough refills to get you through recovery.
What you can do:
- See whether a PCA pump, which allows you to safely control your own pain killers, is a possibility.
- Request stronger pain medication than is typical, both for your hospital stay and for recovering at home, and request an extra refill or two.
You doctor(s) may not be willing or able to fill all of these requests, but everything they can do along these lines could help you get through recovery in better shape.
During surgery, your body could be put in positions that may hyperextend or strain certain muscles. For example, your arm may be stretched over your head or out to the side to accommodate an IV.
Suggestions for alleviating this problem include:
- Asking to have your IV arm placed close to your body if at all possible
- Asking whether you’ll have an endotracheal tube in your nose or mouth during the procedure, and if so, asking to wear a soft neck collar to lower the risk of your neck being hyperextended
Keep in mind that some accommodations may not be possible, depending on the nature of the surgery.
According to the Hunter-Hopkins Center, ME/CFS may sometimes involve low levels of magnesium and potassium in their cells, which could lead to abnormal heart rhythms when you’re under anesthesia.
Solutions to this include:
- Having levels of serum magnesium and potassium checked well before surgery so you have time to boost them if necessary
- Addressing any deficiencies through diet and supplements
- Ensuring that you get plenty of magnesium and potassium after surgery
Hunter-Hopkins says that low plasma volumes and other features of ME/CFS may point to a need to hydrate before surgery. Dehydration may lead to problems with vasovagal syncope (dizziness and fainting related to low blood pressure).
The solution to this one is clear:
- Be certain that you’re well hydrated before surgery.
- Make sure to stay hydrated after surgery.
People with these conditions are often sensitive to medications, including anesthesia and muscle relaxants that may be used during surgery.
The Fibromyalgia Information Foundation points out that the muscle relaxant succinylcholine can lead to postoperative myalgia (muscle pain). These issues could potentially complicate your recovery.
To head off this potential problem:
- Talk to your doctor about drugs that may bother you, including any known allergies, sensitivities and side effects.
- Discuss what medications may be most suitable for you in your effort to reduce post-surgical pain.
- If you have drug allergies, ask if a histamine-releasing anesthetic will be used and discuss possible alternatives.
Many of us with FMS and ME/CFS rely on prescription drugs and nutritional supplements to manage our symptoms. Depending on the nature of the surgery, you may be asked to discontinue some or all of your meds and supplements.
Discontinuing treatments can be a scary thing, because it could mean you have an upswing in symptoms prior to surgery.
There’s not much to be done about this—if you’re told to stop taking some things, it’s to protect your health.
To minimize problems with this:
- Talk to your doctor as early as possible about what medications and supplements you’re taking and whether you’ll need to discontinue them prior to surgery, and whether there’s a weaning process involved.
- Find out how soon after surgery you can start taking things again.
- If possible, try to lighten your schedule during the time you’re off the meds before surgery so there’s less stress on your body.
Neither expert group mentions this, but research shows that FMS and ME/CFS both are associated with obstructive sleep apnea, which causes you to stop breathing during sleep. Sleep apnea can be a serious problem when you’re under anesthesia.
- If you have this sleep disorder, be sure to discuss with your doctor whether you’ll need to bring your C-PAP machine or other device you use.
- Be sure to have it with you and assembled before the procedure.
Healing is often reported to be slow, so it’s wise to be prepared for a lengthy healing process. A symptom flare may lengthen the time it takes you to feel better.
What to do:
- Know before surgery who is going to be taking care of you.
- Arrange for the appropriate time off of work, including more time than the doctor thinks you’ll need, if possible.
- Stock up on any supplies you may need so you’re prepared for a flare.
- Rest and allow your body the time and energy it needs to heal.
- Once the incision is well healed, The Fibromyalgia Information Foundations suggest gently stretching and working on rehabilitating the muscles.
- Ask your doctor whether you may benefit from physical therapy to help with recovery and, if so, find the right physical therapist.
A Word From Verywell
It can be really scary to face surgery alone, and even more so when you’re worried that it’ll make your FMS or ME/CFS worse long-term.
When making the decision to have or not have an operation, it’s important to have all the facts and make an informed decision about what’s best for your health.
Talk to your doctor and surgeon and weigh the downsides of the surgery against the possible consequences of not having it. In the end, it’s you who has to live with those consequences.
If fear is making it hard for you to decide based on facts, you may want to consider talking to a mental health counselor to help sort out your feelings. You can also take at the following additional resources:
- Guidance for Fibromyalgia Patients Who are Having Elective Surgery, from the Fibromyalgia Information Foundation
- Advice for Persons with Chronic Fatigue Syndrome Anticipating Anesthesia or Surgery, from the Hunter-Hopkins Center
Via- Verywell Heatlh