Anesthesia Recommendations for Chronic Fatigue Syndrome Patients Who Need It
Having CFS or ME does not make you exempt from developing other health problems from time to time. Someday you might need an operation. “Normal” people can easily take two months to fully get over the lingering aftereffects of general anesthesia. Indeed, for many operations, statistics indicate the anesthesia has a higher risk of causing serious trouble than the surgery itself!
CFS/ME starts you off at a disadvantage. Can anything be done to make the operation less hard on you? Yes! That is what this lens is about.
From Doctors, To Doctors and Anesthesiologists
Original Source: CFS Support Group Newsletter
The Mass CFIDS Update
Copyright Restriction: Copyable with attribution
ANESTHESIA RECOMMENDATIONS FOR CFS
CFIDS group, Reno, NV, reports the following from anesthesiologist Patrick L. Class, MD of Reno:
I have used the following anesthesia protocol with success during surgery on CFIDS patients. First, I perform skin tests for all the agents I am considering using with the patient. With CFIDS patients, I recommend Diprivan (propofol) as the induction agent, Versed (midazolam), fentanyl (a short-acting narcotic) and droperidol (an anti-nausea agent) during the anesthetic; and a combination of nitrous oxide, oxygen and isoflurane (commonly called Forane) as the maintenance agent.
In contrast to the above group of agents, there is a commonly-used group of anesthetic agents which are known as histamine-releasers and are probably best avoided by CFIDS patients. This group includes the thiobarbituates such as sodium pentothal, which is probably the most common induction agent, but is a known as a histamine-releaser. In addition, there is a broad group of muscle relaxants in the Curare family, namely Curare, Tracrium, and Mevacurium, which are also potent histamine-releasers and should be avoided by CFIDS patients.
Since so many of the histamine-releasing agents are commonly used during emergency surgery, it would be advisable for you to wear a medical alert bracelet in the event you are unconscious and would have to have an anesthetic. I would mention on the bracelet that you cannot receive any histamine-releasing drugs.
From a letter dated February 11, 1992, from Paul R. Cheney, M.D., Ph.D
ATTENTION Anesthesiologists and Physicians
I would recommend that potentially hepatoxic anesthetic gases not be used including Halothane. Patients with CFS are known to have reactivated herpes group viruses which can produce mild and usually subclinical hepatitis. Hepatotoxic anesthetic gases may then provoke fulminate hepatitis. Finally, patients with this syndrome are known to have intracellular magnesium and potassium depletion by electron beam x-ray specrosopy techniques. For this reason, I would recommend the patient be given Micro-K using 10 mEq tablets, 1 tablet, BID and magnesium sulphate 50% solution, 2cc. IM 24 hours prior to surgery. The intracelluar magnesium and potassium depletion can result in untoward cardiac arrhythmias during anesthesia. For local anesthesia, I would recommend using Lidocaine sparingly and without epinephrine.
I hope you will find these comments useful and that they may serve to reduce the risk of the surgical procedure.
Reprinted for The CFS Dyspatch, Vol.,11. #3, Charleston, S.C. and printed in THE MASS. CFIDS UPDATE, Vol.5, #2
What Does That Mean?
In case you wonder what CFIDS means, it stands for Chronic Fatigue and Immune Dysfunction Syndrome. Many patients and some physicians feel that is a more accurate term than Chronic Fatigue Syndrome, which emphasizes the least unusual symptom in the syndrome.
Although the advice quoted above is from many years ago, it is still valid.
Studies have found elevated histamine levels in the blood of CFS patients. Histamines are part of the immune response to infection. Histamines are part of what makes people feel bad and exhausted when they have a cold, flu or allergies. Increasing the histamine levels in a CFS patient will make that person feel worse.
Unfortunately, some of the most commonly used anesthesia agents cause the body to produce more histamines. Part of the advice says to use anesthesia that does not cause the body to release more histamines.
Many CFS patients feel nauseated much of the time. Typical anesthesia makes even otherwise-healthy people feel so nauseated, they may vomit in the few hours after surgery. If someone is starting out nauseated, minimizing the nausea caused by anesthesia makes the whole experience less difficult for them.
Doctors use the term antiemetic for any substance that help to fight the nauseating effect of anesthesia. If your anesthesiologist plans to use antiemetics, that will fight the nausea.
The advice to avoid hepatoxic anesthesia is intended to protect the liver. In many CFS patients, the liver is already more stressed than normal. Hepatoxic drugs would add to the burden. That could be enough to cause harm.
Epstein-Barr virus (EBV) is endemic in many populations. About 90% of Americans carry it by the time they reach their thirties. Many people do not get any symptoms when they catch the virus, but some people get mononucleosis when they are first infected. Either way, the virus is “persistent”–it stays in the body forever after. Normally, even if it makes a person very sick with mononucleosis at first, it never causes symptoms again. However, in many CFS patients, EBV reactivates. As a result, a CFS patient can live with symptoms much like mononucleosis for prolonged periods of time, even for years. When EBV is active like that, it is hard on the liver.
There is another reason to be gentle to the liver. Although this is not mentioned in the advice quoted above, it is common for CFS patients to be more sensitive to medications than healthy people. Such sensitivity can easily happen when a person’s liver does not remove drugs from the bloodstream as efficiently as it does in most people. That means if a drug especially toxic to the liver is used (such as a hepatoxic anesthesia agent), a liver that is already not working as well as it should will essentially get an extra hard dose of it–it will not be able to clear the drug from the body quickly enough to protect itself.
Magnesium and Potassium
As the advice mentions, studies have found abnormally low levels of magnesium and potassium in CFS patients. These minerals are important for the nerve signals that make your heart beat.
If you have ever taken a diuretic (a “water pill”) without doing anything such as eating a banana or drinking orange juice to replenish your potassium, you probably felt bad a little while later–perhaps fatigued, perhaps lightheaded. That is a mild example of what can happen when you do not have a high enough concentration of these minerals in your body. It is not unusual for a patient’s blood concentrations of such substances to get off track during surgery and post-surgical care. Since many CFS patients start out lower than normal for these two critical minerals, the advice boosts them a little to provide a safety margin.
Local Anesthetic Without Epinephrine
Stress hammers CFS patients. Epinephrine (adrenaline) is a fight-or-flight hormone. It amounts to a chemical dose of stress. Doctors and dentists prefer to use local anesthetic with epinephrine in it for some types of procedures. For example, it helps to reduce the bleeding from tooth extraction or oral surgery. But for a CFS patient, the amount of extra blood loss is generally nowhere near as difficult as the CFS flare-up that epinephrine can trigger. That is why the advice recommends local anesthetic without epinephrine.
Wearable Medical Alerts and These Anesthesia Recommendations
Some people coming to this page appear to be searching for recommendations about whether to wear a medical alert bracelet. That is a personal decision, but I can tell you that for my own health I do–and it is from Medic Alert Foundation, not just an engraved bracelet from a mail order catalog or pharmacy. In some places, including some of the USA, medical emergency crews are trained not to look for a card in your wallet so they cannot be accused of theft later. If you rely on carrying a wallet card, it may not be seen until long after you have been treated.
Medic Alert is a non-profit organization that started in 1956. Getting a bracelet or necklace from them involves joining the organization. The first year can be a little costly because that’s when you buy your bracelet or necklace. I wanted a higher-priced model that I could easily remove before walking down factory aisles where wristwatches and bracelets are forbidden. But if you stick with the basic model, it isn’t too expensive. Renewal is reasonable.
Medical professionals worldwide know to look for the distinctive Medic Alert emblem. If you arrive at a hospital unconscious on the other side of the world from where you live, the hospital can call the phone number on your Medic Alert emblem at no cost–Medic Alert absorbs the cost of the phone call. In addition to the terse engraving on your emblem, Medic Alert will tell the hospital who your doctor is and how to reach them, plus everything critical in your medical history and how to reach your emergency contacts. Only highlights can fit in an engraving, so this service can save your life.
A Medic Alert membership costs more than just getting a bracelet from a pharmacy, but for people with complex or baffling health problems (of which CFS / CFIDS / M.E. is only one example), nothing else can compare.
I am not a medical professional and am not trying to give you medical advice. I am passing along advice that has been made public by medical professionals, and attempting to explain it in case some people find it hard to understand. Years ago, I did a lot of this as a volunteer in a forum for people with chronic illnesses.
There is no substitute for the help of a doctor you trust. Please feel free to take the recommendations I quoted to your doctor if you are facing surgery. If this helps you get your doctor to do some extra thinking about the special difficulties of your situation and make adjustments in the surgery plan to make it easier on you, then this article will have done what I wanted.
Other Sites with More Information
Some Are Very Technical
These links can take you to contributions from a few of the most highly regarded physicians in the field. However, you will also find lots of medical details and jargon. If you don’t have medical training, you may find these hard to understand.
CFIDS Association of America Recommendations from Dr. Charles Lapp for CFS or FM patients facing surgery. Dr. Lapp was the medical advisor for the CompuServe Chronic Illness forum. He is no-nonsense and reliable.
Patient and Physician Information page of the National CFIDS Foundation website contains information on anesthesia, education, employment, prescriptions, tissue donation, a symptom checklist and information for young patients.
CFSupport: Questions & Answers about and living with Chronic Fatigue Syndrome, Fibromyalgia, CFS/FM, and orthostatic intolerance (OI).
CND: Surgery, Anesthesia and CFS/FM/MCS, Melissa Kaplan’s site about Chronic Neuroimmune Diseases. Pulls together short recommendations from several sources.
Books and a DVD for CFS/ME/CFIDS Patients
|DVD – I met Kim Snyder at the Rocky Mountain Women’s Film Festival when this movie was newly released. She has to budget her energy carefully, but with a lot of determination and patience, she made a powerful movie that gets the subject across better than any other film I have seen.|
|This is as close as CFS has come to having a book that could do for it what And The Band Played On (Randy Shilts) did for AIDS. The book could have been even more acidic if published later–the diversion of funds earmarked by Congress for CFS to work on measles instead had not yet been brought to light. CFS is where multiple sclerosis once was, back when MS was called female hysteria. To get an idea what is happening in the medical community about CFS, read this book.|
|Dr. David Bell is one of the best known and most highly regarded clinical physicians in the USA when it comes to diagnosing and treating CFS. Although I have not personally heard him speak, I know people who have and they say he is an excellent speaker too. The book may be a bit old, but his trustworthiness is always in style.|
|It is rare to find a book about such a tough subject with such consistent five-star reviews. Try to get a used copy. The price of a new one has become rather high.|
I include one book about adrenal exhaustion because of personal experience. Chiropractors are more likely than doctors to mention this to CFS / M.E. / CFIDS patients.
If you have this dratted disease (or multiple sclerosis, or systemic lupus, or anything else that produces such varying and highly individual symptoms), you have probably learned to tackle your symptoms like peeling an onion down to its center. You look for a way to make one symptom ease up, then start looking for a way to make another symptom ease up. Regardless of whether you have a diagnosis that fits, when you find a strategy that works to make you feel better, you use it.
Relieving the load on the adrenal system, helping it calm down, seems to be helpful for a fair number of CFS / M.E. / CFIDS patients. Never mind whether you are officially diagnosed with adrenal fatigue–if proceeding as though you do is helpful, that’s what counts.
This article was originally a Squidoo lens. Squidoo believed the content and/or the links I provide here were poor. CFS / CFIDS / M.E. patients have indicated otherwise to me–in particular, this article provides some explanations of the medical recommendations that are easier to understand than what is on many other sites. It also explains exactly why a Medic Alert emblem can be helpful.
I removed commercial links and a section that specifically focused on Hillenbrand’s work. (Although she is a hero to many patients, healthy people don’t understand why.) The only commercial links I kept pointed to specific educational materials for patients. That still did not satisfy Squidoo.
It’s possible that Squidoo had the same misconceptions about this illness as much of the general population. I asked readers to post specific comments about what is good or bad about this article. If it really wasn’t doing any good, I would have destroyed it. Comments indicated I should continue to fight to keep the material accessible, so here it is, no longer subject to censorship by a commercial entity.
Some Verbatim Comments from Previous Publication
Stress-Coach 2012-06-21: this is a fantastic resource..ive had m.e. for over 20 years and had several relapses due to anaesthetics to the extent ive had some small minor procedures without an anesthetic. I have had to put off an operation recently because i simply wasnt well enough…so grateful for this
dream1983 2012-06-13: Thankyou for your comprehensive article of CFS.
Hanzijane 2012-05-28: Thankyou for your comprehensive article of CFS.
Jan M. 2012-01-31: Dear Bonnie,
I’m going to give Squidoo the benefit of the doubt here. I’m going to assume that they must stringently adhere to policies that disallow commercial endorsements (of unpaid advertisements) for products or services. I truly can see where this would be a real source of disagreement among authors and consistency would be paramount from their viewpoint.
With that said, the thought of THIS LENSE having “poor content” or not being worthy of inclusion in the Squidoo community simply boggles the mind.
I cannot speak to the links you had posted as I did not see them. However, you are indeed correct when you say Hillenbrand is considered a hero.. a source of uplifting encouragement to the very ill with myalgic encephalomelitis aka chronic fatigue syndrome. The fact that such an ill woman with ME/CFS could create a successful motion picture worthy novel is certainly worth celebrating. Hillenbrand hardly needs the acknowledgement or representation from Squidoo for her works’ continued success — but they are a positive and well known feature of the ME/CFS patient community. I appreciate your desire and good intentions to incorporate her book/s in your lense and also appreciate the fact that outsiders to this illness, (with, sadly, questionable insight into the horridness of the world in which this patient community finds itself in), could not be expected to fathom why such a ‘link’ would matter.
I only really discovered the facts surrounding the condition a couple of years ago to be honest. I’ve devoted the time since to trying to get my head around the ugly politics, pathetic policies and unbelievable misunderstandings that are presently adversely affecting roughly 17 million people around the world. LOL,”adversely affecting”.. could there even be a more pitiful understatement POSSIBLE?? This is worldwide. Virologists are speaking up about just ‘who’ may have “dropped the ball” … but that’s a whole different chapter from your lense here.
We won’t even touch on a certain profession in the UK…. an infamous, self serving profession. (You can’t make this stuff up).
In case you were unaware, Dr. Jamie Deckoff-Jones is starting a website for worldwide participation on the subject of recent advances in the science/research of M.E.(C.F.S.) Her own health is greatly improving on retroviral medications as is her daughter’s. She actually is back to seeing patients part time!! She has a following on her present blog [X-Rx or something similar] of many scientists and physicians from the NIH, CDC, large universities and cancer centers. She promises anonymity to anyone who needs it in order to establish a kick-@&$ scientific dialogue on this new website. Fingers crossed for success!!
Hopefully, considering the recent incredible clinical trials [think Rituximab] and research breakthroughs, Squidoo will find it in its heart to allow this lense to continue. Do let us know if this is not the case.
my reply: To “get your head around the politics” I suggest reading “And the Band Played On” about the early years of the AIDS epidemic. Many of the same people turn up later doing the same roles (good or bad) in relation to CFS. You can see that unfold in the scientific papers about CFS in the late 1980s to early 1990s.
CFS/M.E. patients tend to have seriously impaired quality of life throughout, lower scores on tests of ability to carry out activities of daily living than AIDS patients until about the last two months of an AIDS patient’s life. AIDS patients were more able make a fuss and demand changes in research and treatment.
I wasn’t aware of Dr. Deckoff-Jones efforts. I’ll take a look.
Sorry about the typos in this lens. I haven’t been able to republish it to correct those. It’s stuck as it is.
skiesgreen 2011-12-22: Great lens. I have a reaction to some dental anesthesia that make me shake violently. This is an important topic for many reason, hugs
my reply: Thanks. I’m sorry you had trouble with anesthesia at the dentist. I have too, although it wasn’t dramatic. But if you must ever have a major operation, maybe telling the anesthesiologist about it will prevent a reaction that’s even worse.
aquarian_insight 2011-10-24: An excellent lens. I have ME and had to have general anaesthesia for a dental procedure – it left me extremely ill. It’s good to have the information you have provided here – thank you.
my reply: Thank you for the comment–I hope this helps you if you ever have to go under general anaesthesia again.
JoanneThomp 2011-04-20: What are examples of hepatoxic drugs? Sorry I’m a bit confused about it. Or I may have misunderstood it.
my reply: I’m glad you asked. Hepatoxic is not a term patients run across in everyday life–doctors do, so a doctor used that term in his advice. “Hepa” has to do with the liver. “Toxic” has to do with being poisonous. Hepatoxic drugs are medications that are poisonous to the liver.
An example from everyday life is acetaminophen (Tylenol) in the USA or paracetemol in the UK. If you take too much of that, it poisons your liver so badly that it can cause liver failure. If your liver is not as strong as most people’s, your doctor might advise you to avoid taking this drug–maybe you should take aspirin or ibuprofen instead.
Some of the anesthesia drugs are similarly hard on the liver. A normal person can tolerate the amount of those drugs that would be used for surgery anesthesia. A person with a weakened liver can have extra trouble recovering from surgery because the anesthesia could damage the liver too much.
If I still have not explained well enough, please say so. I only know I have left something unclear when someone asks!