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Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Anticipating Surgery

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[This information was developed to reduce the risk of surgical procedures for ME/CFS/FM patients. It is evidence-based (see bibliography) and meant to be shared with the patient’s professional healthcare team. Dr. Charles Lapp, MD, directs the Hunter Hopkins Center for ME/CFS/FM in Charlotte, NC. For more basics, see also “Guidance for FM Patients Who are Having Elective Surgery” by the Oregon Fibromyalgia Research & Treatment Team.]

CFS is a disorder characterized by severe debilitating fatigue, recurrent flu-like symptoms, muscle pain, and neurocognitive dysfunction such as difficulties with memory, concentration, comprehension, recall, calculation and expression. A sleep disorder is not uncommon.

• All of these symptoms are aggravated by even minimal physical exertion or emotional stress, and relapses may occur spontaneously.

• Although mild immunological abnormalities (T-cell activation, low natural killer cell function, dysglobulinemias, and autoantibodies) are common in CFS, subjects are not immunocompromised and are no more susceptible to opportunistic infections than the general population.

• The disorder is not thought to be infectious, but it is not recommended that the blood or harvested tissues of patients be used in others.

• Intracellular magnesium and potassium depletion has been reported in CFS. For this reason, serum magnesium and potassium levels should be checked pre-operatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia.

• Up to 97% of persons with CFS demonstrate vasovagal syncope (neurally mediated hypotension) on tilt table testing, and a majority of these can be shown to have low plasma volumes, low RBC mass, and venous pooling. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents). Care should be taken to hydrate patients prior to surgery and to avoid drugs that stimulate neurogenic syncope or lower blood pressure.

• Allergic reactions are seen more commonly in persons with CFS than the general population. For this reason, histamine-releasing anesthetic agents (such as pentothal) and muscle relaxants (curare, Tracrium, and Mevacurium) are best avoided if possible. Propofol, midazolam, and fentanyl are generally well-tolerated.

• Most CFS patients are also extremely sensitive to sedative medications – including benzodiazepines, antihistamines, and psychotropics – which should be used sparingly and in small doses until the patient’s response can be assessed.

• Herbs and complementary and alternative therapies are frequently used by persons with CFS and FM. Patients should inform the anesthesiologist of any and all such therapies, and they are advised to withhold such treatments for at least a week prior to surgery, if possible. Of most concern are:

Garlic, ginkgo, and ginseng (which increase bleeding by inhibiting platelet aggregation);

Ephedra or ma huang (may cause hemodynamic instability, hypertension, tachycardia, or arrhythmia),

Kava and valerian (increase sedation),

St. John’s Wort (multiple pharmacological interactions due to induction of Cytochrome P450 enzymes),

Echinacea (allergic reactions and possible immunosuppression with long term use).

• The American Society of Anesthesiologists recommends that all herbal medications be discontinued 2 to 3 weeks before an elective procedure. Stopping kava may trigger withdrawal, so this herbal (also known as awa, kawa, and intoxicating pepper) should be tapered over 2 to 3 days.

• Finally, HPGA Axis Suppression is almost universally present in persons with CFS, but rarely suppresses cortisol production enough to be problematic. Seriously ill patients might be screened, however, with a 24-hour urine free cortisol level (spot or random specimens are usually normal) or Cortrosyn stimulation test, and provided cortisol supplementation if warranted. Those patients who are being supplemented with cortisol should have their doses doubled or tripled before and after surgery.

Summary Recommendations

1. Ensure that serum magnesium and potassium levels are adequate.

2. Hydrate the patient prior to surgery.

3. Use catecholamines, sympathomimetics, vasodilators, and hypotensive agents with caution.

4. Avoid histamine-releasing anesthetic and muscle-relaxing agents if possible.

5. Use sedating drugs sparingly.

6. Ask about herbs and supplements, and advise patients to taper off such therapies at least one week before surgery.

7. Consider cortisol supplementation in patients who are chronically on steroid medications or who are seriously ill.

8. Relapses are not uncommon following major operative procedures, and healing is said to be slow but there are no data to support this contention.

* * * *

I hope that you have found these comments useful, and that they will serve to reduce the risk of surgical procedures.

Yours truly,
Charles W. Lapp, MD:

Director, Hunter-Hopkins Center, P.A.
10344 Park Road, Suite 300,
Charlotte, NC 28210
Telephone (704) 543 9692; Fax (704) 543-8547
Website: http://www.drlapp.net

Assistant Consulting Professor at Duke University Medical Center

Diplomate, American Board of Internal Medicine

Fellow, American Board of Pediatrics

American Board of Independent Medical Examiners

(Rev 1/2005)

Bates DW, Buchwald D, et al., “Clinical laboratory findings in patients with CFS,” 1995 Jan 9, Arch Int Med 155:97-103

Klimas NG, Salvato FR, et al., “Immunologic abnormalities in CFS,” 1990 Jun, J Clin Microbiol 28(6): 1403-1410

Caligiuri M, Murray C, Buchwald D, et al., “Phenotypic and functional deficiency of natural killer cells in patients with CFS,” 1987 Nov 15, J Immunol.;139(10):3306-13

Cox IM, Campbell MJ, Dowson D, “Red blood cell magnesium and CFS,” 1991 Mar 30, Lancet 337: 757-760.

Burnet RB, Yeap BB, Chatterton BE, Gaffney RD, “Chronic fatigue syndrome: is total body potassium important?” Med J Aust. 1996 Mar 18;164(6):384.

Bou-Houlaigah I et alia, “The relationship between neurally mediated hypotension and the chronic fatigue syndrome,” JAMA 1995; 274:961-967

Streeten D & Bell DS, “Circulating blood volume in CFS,” J of CFS 1998; 4(1):3-11

Kowal K, Schacterele RS, Schur PH, Komaroff AL, DuBuske LM, “Prevalence of allergen-specific IgE among patients with chronic fatigue syndrome,” Allergy Asthma Proc. 2002 Jan-Feb;23(1):35-39

Ang-Lee MK, Moss J, Yuan CS, “Herbal medications and perioperative care,” 2001 Jul 11, JAMA 286(2):208-216

Demitrack MA, Dale JK, Straus SE et alia,”Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome,” J Clin Endocrinol Metab. 1991 Dec;73(6):1224-34

Reproduced with permission from the Vermont CFIDS Association website http://monkeyswithwings.com/vtcfids.html

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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9 thoughts on “Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Anticipating Surgery”

  1. Kulla says:

    Thank you doctor Lapp! These recommendations just confirm some of what I myself has found out but have had problems getting treating doctors to believe. Maybe they will be listening a little bit closer w/out argument if I ever have to have surgery again given the chance to read this article written by another M.D. Thank you!
    Liss Englund, Sweden

  2. munch1958 says:

    Thank you! Wish I’d had this info for any of my 13 surgeries. Great suggestions which I’m printing for the unlikely event that I had to have #14.

    I am wondering if these same suggestions apply to so called “minor” proceedures like EGDs, colonoscopies, Bone marrow biopsies, spinal taps, etc.

    1. dem2008 says:

      Thank you, as always, Dr. Lapp- I was so potassium depleted following surgery that I had to have mega doses of potassium supplements which I still have to take(my spinal fusion surgery was June, 06). One thing for me is that I took 7-10 days to “come out” from the anesthesia and I was in the hospital 27 days to be recovered enough to come home. The surgery took 14 hours and I had continuing problems with an abdominal hematoma, as I had kyphosis, and three surgeons did the surgery, one doing the abdomen, and two doing my back. The abdominal wound kept getting infected and I had to have one or two further surgeries just to deal with that. It took me way over a year to get what I would consider “healed” from the surgery and I ended up being in the hospital the better part of the whole summer. When I was at home, I had to have home health nurses and physical therapists, as well as continuing major IV treatment for the horrible infection that my abdomen suffered. Most painkillers did not help me in the least. I needed nightly sedation, as I also suffer from major insomnia. It was a huge undertaking and my own opinion is that, unless there is a huge risk to my life, I wouldn’t opt to undergo any other surgery. If I hadn’t had the spinal fusion, it was so severe that in a few years, I wouldn’t have been able to walk, so I felt that I had to choose to undergo that surgery before I got any older.

    2. JustAsk says:

      Too bad I didn’t have this article before Thanksgiving because I had a 6-hr. breast reduction surgery on 11/20/07. The longest I’d ever been under Gen. Anesthesia before was less than 3-hr. In the past couple years, I’ve learned a self-hypnotic pain management process that uses breathing that often reduces my pulse-ox level to the low 80% and occassionally 78-79%. I explained this to both my surgeon and the anesthesiologist before and post-operatively.

      This had never been an issue before and was extremely effective in a VERY fast and successful total knee replacement in June 2006. My FM/CFS has worsened since then, and so instead of going to a luxurious plastic surgery suite for post-op observation, I ended up in the Intermediate Care Unit after this breast surgery, with concerns over keeping my saturation level above 80% (even on oxygen). It was a very bad experience, because I was delirious and got beligerant, and of all things, ended up in 4-point restraints. This was totally out of character for me.

      I am planning to have my other knee replaced before summer, because my FM has gotten so bad that Calcium crystals have eaten away nearly all cartilege and soft tissue in the knee, and the fluid in my muscles are pinching my main nerves running down the back of that leg. Heaven knows what will happen to my spinal stenosis that has worsened with the Calcium crystals that are riddled throughout my body.

      I,too have had problems with lowered potassium, sleep and dehydration, post-operatively.

      Michele; Denver, CO

    3. turtles752 says:

      thank you, Dr. Lapp. As a nurse, I know it takes longer to heal if you smoke. I smoked, but I quit 8 weeks prior to surgery, and my doctor kept saying as a reformed smoker, that’s what took so long to heal from my hernia surgery. It took 7 1/2 months for the surgical site to to close. At least, now, I know there was another reason for my slow healing. I’m printing this article, in case I ever have to have surgery, again. Again, thank you. Nancy Hinton

    4. comluc says:

      Most Doctors don’t believe in CFS/FM anyway. I doubt they would even take the time to listen or read anything. Hope I am wrong but I doubt it. Look at how many doctors a person has to go to just to get someone to listen to them let alone get a diagnosis of these problems.

    5. gkb440 says:

      hi when i asked my doctor what should i do when having operations 42 under anathetic about my me cfs fms mcs
      he said just dont tell them you have it its not important

    6. kel68 says:

      I see a pain dr that is awesome. Before being referred to a pain dr a chiroprator told me I had Fibro and sent me to a pain managment dr that believes in Fibro,CFS, etc. Ironically he is also an anethisa guy,sorry spelling. My mother is an RN and use to work with him and knows her and myself. So when I first started going in 2000 he never doubted me, told me it’s not in my head and i wasn’t crazy. Back then so many dr’s just so people were drug seeking. So far from the truth, just didn’t know what was wrong. Now that I do I’m being treated well, bad thing is I am getting worse. I have bulging disks on each side of my neck. Being sent to a neurosurgeon and big possibilty that I will need surgery, this has effected my use of my left arm. Anyway, what worries me is this, I had gastric bypass back in 2002, all went well except one thing. I never told the dr in advance about the pain from the fibro, so when it came to treating the pain it wasn’t enough but I was afraid to say anything. Also Anesthia does a number on me. I know it messes with you for awhile, for some reason I think due to also being bipolar it always causes me to act, feel so bad for so long. I was working back then and ended up using all 6 months of my short term disability due to having to go to a mental health facility to adjust meds. So now I am wondering if I do have neck surgery, aside from the danger and being scared, how do i tell the dr about what i am being treated with for fibro, degentive disk disease. basically I not saying i want heavy meds, just want them to know what my body had been on for 11yrs and tolerance. Morphine pumps don’t work, gives me nightmares. It’s hard enough coming out of surgery being in pain but i feel the dr needs to know my tolerance level so I am able to get through the healing and not be in extra pain. Either way I am scared to death about the surgery, the thought of it scares me. The neck area is scary to even think about. I guess I will just have to talk to the dr about it. Anyway, sorry for venting. Healing process is hard enough, but if your not getting the pain meds your use to having it will put you in withdrawals like it did with my other surgery and made it harder to sleep at all in hospital and even want to get out of bed which i needed to do to keep my legs moving, I got through it though, thankfully. Thanks for reading, sorry for this being long.

  3. Criket says:

    Thank you. I have had CFS for several years. In May, 2001 I had neck surgery. When they were prepping me for surgery, one nurse commented to me that I should be ashamed of myself for coming for major surgery with such a low potassium level. They were replenishing my potassium before they took me to surgery. I have had to take potassium since then. I never related it to the CFS.

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