Questions and Answers (Q&A), Our Way
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Our member comments abour surgery, anesthesia, dental experiences
Anesthesia & Procedure Preparation Information
for people with
CFS, M.E., FMS, OI
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Q. I need to have surgery / involved dental work / a procedure that needs anesthestia and I have chronic fatigue syndrome (CFS), Fibromyalgia (FM), and/or Orthostatic Intolerance (OI). I have had some unusal experiences with anesthetics before. What are some factors to consider as I prepare and for when I go?
A. There are many articles on this important topic (see below for links). Factors to consider for anesthesia include speaking to the anesthesiologist ahead of a procedure about your blood pressure and heart rate variabities, choosing the type and dosage of anesthesia to minimize CFS, FM, and OI symptoms during and after, and even what positions your body will be in and for how long while under anesthesia and how that will affect your CFS/FM/OI. Preparations include adjusting medications and supplements to decrease bleeding time, increasing supplements that promote wound healing if you have good experience with them, and adding in guided medidation for a successful outcome.
We've gathered this information in one place for your convenience. It may be too much to take in, even in several sessions. It can overwhelming and a bit worrisome, especially if you've never had problems with anesthesia before. Some people do just fine! And if you are one of the ones that don't, here's a place to find information and experience and realize you are not alone.
Our short answer
Our one minute answer for this complex topic is: ask for non-histiming releasing anesthetics and ask for a lower than normal dose if you are drug sensitive. Give overseers permission to add more in needed, better to add more later than start too high. Ask for your blood pressure and heart rate to be monitored extra carefully since you might have a very sensitive autonomic nervous system. If you have pre-medicated with antibiotics before for procedures, check the latest guidelines. If possible and appropriate in your case, ask for the IV fluid to have potassium in it. (Ringer's Lactate solution has both calcium and potassium in it and was very good for my home IV rehydradtion approach. Plain saline was too stimulating. -Elly.) For more in depth discussion, keep reading...
You have valuable experiences to consider
Consider your past experiences with surgical anesthetics, dental anesthetics, prescription pain medications, and over the counter pain relievers. Also, think about any herbs, supplements, drugs, and foods that are known to dilate or constrict blood vessels. Anything unusal in your history could be a good clue for determining how to best proceed. Maybe you can spot a pattern about classes of drugs. Perhaps you can remember if you had something before that worked well and track down its name.
Have someone else drive
It is hard to predict how you will feel, even if you have experience with the same drug before. If possible, arrange for someone to take you to and from, even if that has to by taxi. You may not be able to assess honestly how you are doing, so driving is probably best avoided. Make up index cards with the taxi cab phone number and of the address you want to be taken to after the prodecure in case it is hard to speak clearly or remember.
IV difficulties: Spasming blood vessels, being too upright
In a great MVPS/Dysautonomia video, Al Davies, MD, of Mediscene, spoke of how many people have their blood vessels go into spasm, making it very difficult to properly insert a needle or catheter. Keeping up our treatments that help our other kinds of spasms, electrolytes (calcium, magnesium, time-release prescription potassium) and using calming techniques (guided imagery, focusing on being there for help, distracting yourself) can help. Just letting the nursing staff know you go into spasm and extra patience is required on everyone's part may help everyone relax and succeed.
Ask the staff if you can lie down when they insert the IV needle in preparation for any procedure last week. You may not have needed to in the past, but if you are doing worse, this may help you get through a long stressful procedure. You may have to ask days in advance of procedure, and then again the day before, and then the day of. You may have to ask your doctor to write a note about it with the referral for the procedure. Inform nurses about any vasovagal syncope (fainting) reactions you've had in similar situations. Report tendencies to feel faint often, especially when dehydrated or hungry/fasting.
Many procedures require fasting. Many of us don't do so well if we get too hungry. If this is true for you, insist upon or ask for your doctor's help in getting the earliest possible appointment in the day that makes sense for you. Some people get more nauseated and weak from having not eaten and they can't make it through a procedure. Ask if food really affects the results, how much, and if the choice is to relapse and not make it through the test vs eating a little because you need to complete it if they will make an exception.
Blood Volume, Hydration
Often there is giving blood for tests beforehand, taking your fluids, electrolytes, plasma and all those other goodies in blood. Just drinking water or water and electrolytes is not going to replenish you enough, and probably not fast enough. Ask if can do any of the blood work longer in advance so they can take less closer to the procedure. Tell them if you usually feel worse after giving the blood for blood tests. Sometimes they take large amounts of blood -- and don't really expect it could have an effect on someone, even if they know you suffer from dehydration. Spell it out, calmly repeat it, write it down for them, put it on a medical alert document.
Staying hydrated, keeping the water and electrolytes intake is great, but it can be overdone. That water has to go somewhere and there may be no opportunity once procedure starts to use a restroom. Always use the last chance they offer to empty your bladder. If you need a wide open IV, you may need a urinary catheter so you won't be so uncomfortable. Consider a moderate, but steady amount of oral fluids or a slow but steady IV drip instead.
Several procedures can be done with less or no anesthesia! Perhaps you don't need any or the same kind most people get. Dentists can do small to medium fillings with no anesthetic. For some surgical procedures that most people get general anesthesia, it is possible to ask for a local and stay conscious.
In 2006, an article came out in the Journal of the Ameican Dental Association called Postural orthostatic tachycardia syndrome: Dental treatment considerations. It informs dentists, "Patients frequently exhibit symptoms of lightheadedness, fatigue, palpitations and syncope. Patients with POTS may have Ehlers-Danlos syndrome, mitral valve prolapse, chronic fatigue syndrome..." Only the abstract is available online. Gently asking an ADA member dentist to make a copy for you and one to place in your chart is a nice way of saying I have this and it is important to me. It may open up a discussion.
Articles about Anesthesia, Preparing for Procedures
Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Anticipating Surgery
Dr. Charles Lapp, Prohealth.com, 2008
Guidance for Fibromyalgia Patients Who Are Having Elective Surgery – An Update
Oregon FM Research and Treatment Team, Nov 2008
Guidance for Fibromyalgia Patients Who Are having Elective Surgery
The Oregon Fibromyalgia Team at myalgia.com, Fibromyalgia Information Foundation
Fibromyalgia and Surgery and also Fibromyalgia and Surgery another site
Karen Lee Richards, ChronicPainConnection
Facing Surgery With Fibromyalgia & Chronic Fatigue Syndrome
Adrienne Dellwo, About.com, March 2009
CFIDS and anesthesia: what are the risks?
by Elisabeth A. Crean in The CFIDS Chronicle, Winter 2000. cfids.org
Surgery, Anesthesia and CFS/FM/MCS
Compilation of information and Links by Melissa Kaplan at CND.
Topics: Acupuncture , Anesthesia, Blood Draws, Drug/Herb/Supplement Interactions, IV Bags Latex and Vinyl Allergies/Sensitivities, Surgery, Topical Anesthetics, More Information for Anesthesiologists
Formatted version (PDF) at Carousel Network: CFS/FM/MCS Considerations in Surgery and Anesthesia
Preoperative considerations in a patient with orthostatic intolerance syndrome
[CASE REPORTS] Anesthesiology: Volume 93(2) August 2000 pp 571-573
Anaesthetic Managemnet of Two Patients with Myalgic Encephalomyelitis
Indian J. Anaesth. 2003; 47 (1) : 57-59
Postural orthostatic tachycardia syndrome: Dental treatment considerations
2006. Abstract. J Am Dent Assoc, Vol 137, No 4, 488-493. It informs dentists "Patients frequently exhibit symptoms of lightheadedness, fatigue, palpitations and syncope. Patients with POTS may have Ehlers-Danlos syndrome, mitral valve prolapse, chronic fatigue syndrome or, rarely, the Brugada syndrome."
Anaesthetic management of a parturient [woman about to give birth] with the postural orthostatic tachycardia syndrome [POTS]: a case report.
British J of Anaesthesia. Medical team from Duke University, NC. 2006
Abstract at Pubmed
Problems with Anaesthesia in CFS / ME: References 1979 - 2000
ME Action UK
Endocarditis Prophylaxis Information from the American Heart Association
Doctor Quotes about Anesthesia
David S. Bell, MD, FAAP, Published in Lyndonville News, September 2001
Reprinted at Q & A Forum at The Pediatric Network for CFS, FM, & OI
Patients with CFS struggle with anesthesia. If a CFS patient has surgery, there is the additional burden of recovering from the surgery on top of feeling lousy to start with. While this is an over-simplification, I think the concept works.
Years ago, I had expected CFS patients to be dropping like flies during surgery, surgeons not understanding the illness, anesthesiologists using the wrong anesthesia and an already fragile state to begin with. But it hasnšt happened. (If it had happened, doctors would have taken CFS more seriously)
So, general advice for a patient with CFS would be, Don’t have surgery if you don’t need it, but if you have to have it, have it and expect to feel even more lousy for a while afterwards. Somehow this statement does not seem very elegant.
There has been concern that the type of anesthesia is critical. My personal feeling on this is that the type is not so important, but the amount of fluid support is going to determine how lousy you feel afterward. I have heard some patients say that with an extra liter of saline they seemed to recover quite well. So I would advise the anesthesiologist not to be stingy with the saline unless there were clear indications to cut back on fluids. This area could be studied if there were interest among physicians, but so far it has not been. I imagine every CFS specialist will have his or her own opinion on this question.
Surgery section from Guidance notes for GPs - by Dr. Sarah Myhill, MBBS,
author of “Diagnosing and Treating Chronic Fatigue Syndrome”,
Reprinted by Wellington CFS/ME Support Group - NZ
Anecdotes have piled up over the years about the difficulties M.E./CFS patients have in recovering from anaesthesia. M.E./CFS can be an indication that certain organs, especially the liver, may be overtaxed and processes like cell metabolism disturbed. Any anaesthesia plan must consider this. These patients are usually hypersensitive to many medications, including anaesthetics (and vaccines). Histamine-releasing agents are probably best avoided. This group includes the thiobarbiturates such as sodium pentothal. The muscle relaxants in the Curare family are also potent histamine-releasers and should be avoided.
Any gases which are likely to be toxic to the liver are best avoided.
The magnesium and potassium depletion, which is common in M.E./CFS, can result in cardiac arrhythmias during anaesthesia. For this reason, it is recommended that 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.
Because of the prevalence of low blood volume, care should be taken to hydrate patients prior to surgery and to avoid drugs that stimulate neurogenic syncope or lower blood pressure.
Suggest that your patient prepare for both surgery and major dental work by:
Taking 500 mg Vitamin C daily, plus a good multi-vitamin/mineral supplement
Taking homoeopathic amica, 4 per day, 2 days before and continue for 2 weeks
Patrick. L. Class, MD
Ask the Doctor, Summer 1994, The CFIDS Chronicle, page 82.
Q: "I was diagnosed with CFIDS four years ago, but believe I have had it even longer. Before I knew I had CFIDS, I had four operations after which I became very ill and slept for 1-2 weeks. I am very concerned about the use of anesthesia on CFIDS patients. Are there any guidelines we can give our doctors?"
- Doris in TX
A: "I have used the following anesthesia with success during surgery on CFIDS patients. First, I perform skin tests for all the agents I am considering 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 and isoflurane (commonly called Forane) as the maintenance agent.
In contrast to the above agents, there is a group or commonly-used anesthetic agents which are known to be histimine releasers and are probably best to be avoided by CFIDS patients. This group includes the thiobarbituates such as sodium pentothol, which is probably the most common induction agent, but is a known histimine releaser. In addition, there is a broad group of muscle relaxants in the Curare family, namely Tracrium and Mevacurium, which are also potent histimine releasers and should be avoided by CFIDS patients.
Since so many of these histimine releasing agents are commonly used during emregency 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 histimine releasing drugs."
Patrick L Class, MD; Reno, NV.
Paul R. Cheney, MD, PhD, 1992
"I would recommend that potentially hepatoxic anesthetic gases not be used including Halothane. Patients with Chronic Fatigue Syndrome 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 spectroscopy techniques. For this reason I would recommend the patient be given Micro-K using 10mEq tablets, 1 table BID and magnesium sulfate 50% solution, 2cc IM 24 hours to surgery. The intracellular magnesium and potassium depletion can result in untoward cardiac arrhythmias during anesthesia. For local anesthesias, I would recommend using Lidocaine sparingly and without epinephrine."
Dr. Anne MacIntyre in her book, ME: How to Live It (Thorsons, 1989)
Tell your doctor and anesthetist that you have CFIDS before surgery. Describe problems you may have with muscle coordination and brain symptoms. This can help the doctor choose the right anesthesia and optimum dose.Karen Greene, PhD. New York, N.Y.
If you need a local anesthetic, ask for one that does not include adrenaline.
Discuss with your doctor whether it would be wise to take extra vitamin A and C, and zinc, for a few weeks after the surgery.
Postpone elective surgery if you are severely ill or having a relapse of CFIDS symptoms.
Monitor on Psychology, Volume 36, No. 8, September 2005, Letters, Print version: page 4
Regarding "When health fears hurt heath" (July/August Monitor), there is another aspect to the development of dental phobias that was not examined in the excellent article. The usual injected dental anesthetic contains both Novocaine (for numbness) and epinephrine (to constrict blood vessels to both keep the Novocaine in the immediate area and minimize bleeding). Epinephrine typically increases the heart rate and other signs of physiological arousal. When this is added to the level of arousal that the patient is already feeling, the patient can really feel panic. The next time the patient has to go to the dentist, the feeling of that arousal is anticipated and worsens the level of fear.
Novocaine is available without the epinephrine and should be requested and also documented on the patient's chart. There will be a bit more bleeding, and the pain management may need to be repeated, but the racing heart and panic will be absent or minimal. This is very important, given the amount of self-monitoring that is part of the phobic reaction. In addition, the act of taking charge of some aspect of the dental procedure lessens the anxiety. Empowerment to the people!
Al Davies, MD
Mediscene.com, Topic MVP
"Your emotional tension can lead to greater adrenaline release, and thus to more symptoms. Prepare by telling yourself that you can tolerate this, that it will be OK, that after the dentistry is done you will fell better, so the procedure will be fine. Basically instead of preparing yourself to expect panic, prepare yourself to expect relief."
Endocarditis Prophylaxis Information
People with CFS, FM, OI, or MVP Syndrome who also have moderate to severe actual heart disease, may have to consider pre-medicating for procedures with anti-biotics. An example is someone with actual MVP, mitral valve prolapse, with enough regurgitation to be called moderate to high. Note: MVP Syndrome / Dysautonomia is not the same as "mitral valve prolapse"(MVP) and it may not even be related to MVP! Its yet another condition which might benefit from of a name change.
The American Heart Association has guidelines for anti-biotic prophylaxis, updated in 1998. People with mild mitral valve regurgitation don't pre-medicate anymore, and for those that still do, the pre dose was changed and follow up dose disappeared. The details can be found at http://local.americanheart.org/presenter.jhtml?identifier=11086. This page also has a wallet card to state your need for anti-biotic prophylaxis. Please check all the exceptions and guidelines, but the most basic information is:
Prophylactic Regimens for
Dental, Oral, Respiratory Tract, or Esophageal Procedures
Standard general prophylaxis for patients at risk:
Amoxicillin: Adults, 2.0 g (children, 50 mg/kg) given orally one hour before procedure.
(Follow-up dose no longer recommended.)
See also "Anti-biotics" at the Autonomic Disorders and Mitral Valve Prolapse Center.
Even though people with mild mitral valve regurgitation are told that anti-biotics aren't necessary anymore, worrying tremendously because you don't take them could affect your outcome. You may want to ask to take them anyway if it puts your mind at ease.
Observations from our members:
In an emergency
"In an emergency appendectomy, I didn't have the literature or facts with me about CFS and orthostatic intolerance (OI). I had just enough presence of mind to ask the anesthesiologist to pay close attention, to keep a close watch on my blood pressure and she did. It worked! She said something like, 'this is the most astounding thing I've ever seen.' She took good care of me and I sailed through." - Nina
But I need the epinephrine, too
"There is so much information in your dental experiences to guide you. Did you ever have a weird reaction to carbocaine, novacaine, lidocaine? Was there epinephrine in the anesthetic given to you? Most of us don't know to think about that. It used to be much more common to get epinephrine in the past, so if you'd don't remember problems back in the 70s and 80s, and now you have them, this may be a clue.No, No, No Epi for Me!
While most of the doctors warn about getting the epinephrine, or the adrenaline like part, or anesthesia, I actually need to request it at the dentist. I need lidocaine and epinephrine! I once used topical lidocaine for something and ended up with the chest pain I now associated with my dysautonomia poor circulation.
I have had POTS and NMH and MVPS/D - my blood pressure can swing either high or low, depending on the circumstance. As lidocaine by itself enters my body and dilates my blood vessels, and I can actually feel a relaxation and slowing of circulation happen. I'm fine reclining in the chair and during the dental work. But when I get up to leave, and the blood and circulation would have to deal with gravity again, I'd become weaker, sicker, nauseated, and emotional. I couldn't even be talk. When I had someone with me to pay and drive, I just slinked off and chalked it up to the stress of the appointment. But when I was there alone and had to stand to pay, I saw how profound an OI experience I was having. I felt the CFS relapse beginning and made the association with having a lidocaine drug only. It became to me clear I would benefit from requesting vaso - constricting drug with it. We used two contricting tricks, caffeine and ice water, to get me home from the worst episode. Next time I needed dental ansesthesia, we added the epi back in. I actually felt better than before the appointment and could do errands after. For me, getting a balance of dilator and constrictor was important!" - Elly
'I am not able to tolerate the epi because of the MVP. I went to the dentist for a filling, and he gave me a few epi shots and then left me alone while I "numbed up." When they came back into the room I was shaking uncontrollably, my fingers, toes, and lips were blue, my jaw was clenched and virtually locked, and my heart was racing so fast I thought it was going to pop out of my chest. They asked if they needed to call 9-1-1, but I told them I was fine (through gritted teeth, since I couldn't open my mouth).
I made a mental note that day to never forget to have it written in huge red letters, "NO EPI" on all my dental charts. Since then dental visits have become much less anxiety-provoking.' ~Lorelei
A 2006 colonoscopy story
As part of the pre-prep, I was on a liquid only diet for 24 hrs. prior (not a good thing for CFS), plus I had to take heavy duty laxatives and drink 64 oz of nasty stuff in the late afternoon to completely "clean me out" -- which I'm sure messed my electrolytes, magnesium, etc. The docs don't adjust the meds and amounts down -- it's all "one size fits all" -- no matter if you are a 6'6", 380 lb. running back or a 5'3" 125 lb. woman. No adjustments. Everyone gets the same and you are made to feel "bad" if you don't do the regimen the way you are told to do it!
Needless to say, by the time I arrived for the procedure at 11 am (no food or drink or any kind that morning after a liquid diet and then a complete clean out) I was very de-hydrated as well as chemically imbalanced from an CFS/FMS point of view, plus I have OI and high blood pressure and other issues... Even with my BP meds that morning, I had 167/100 when they first took my BP.
So when they inserted the IV needle, my body went into a vagal shock reaction almost immediately. My ears started ringing, I became over-heated, everyone started to sound far away and distant as though my body were escaping. My breathing became rapid and shallow and I nearly passed out. The next thing I knew I had a group of people standing around me telling me to do this and that, but I was too weak to use my voice or lift a finger. In fact, I couldn't feel my fingers or my hands, because they were completely numb, which caused me more panic, and crazier more erratic breathing. I recall a nurse mentioning that this reminded her of a women who was pregnant with her numb hands, etc
I think somehow they figured out I was grossly dehydrated and started to get fluids in my IV, which helped -- over time -- but it took awhile. Not before I completely passed out unconsciously on the floor, however, on the way to the procedure room. Perhaps they thought I was finally okay, I dunno, or I couldn't quite speak up on my behalf fully at that point. They wanted me to stand with the IV's attached and walk several hundred feet and turn and walk several hundred feet again to go into the procedure room! I told them upon standing that I wasn't feeling well, but they said "Oh, it isn't very far..." and that's the last I remember...
Next thing I know, we are back at Square One, in my little preparation cube again in my portable preparation chair with even more people, including the Doctor and his assistants all staring down at and around me. I must have taken just one or two steps, and gone down. Luckily someone caught me. Then more IV liquids, etc. More checking BP, blood sugar level, review of my chart. I reminded them that I had told them about my FMS and CFS. At that point I mentioned OI.
I'm not sure all of that got in my charts and that the ambulatory surgery center even requested the records of Dr. [main CFS doctor I see] who has that stuff recorded. I probably had not done a very good job of mentioning all of these details, because I was upset in having to see this specialist to begin with (not by choice, but because of an "emergency" incidence"). Therefore, my FMS/CFS and OI were not upmost in my mind when this unpleasant procedure was ordered.
I look back at this whole incident and the several days of preparation: going off certain medications, including OTC items that cause blood thinning (Vit E and Ginkgo), the fasting, the liquid diet, and internal purging, etc. and dehydration. Then the OI and shock reaction, Perhaps I was fortuante that the OI issues surfaced up front the day of the procedure. I think my anesthesia could have been a problem if I hadn't had the OI issues, which could have been even more problemsome! But so much of these issues could have been avoided or mitigated overall, with some counseling, better doctor/nurse intervention and better communication overall. -"V"
Medical ID, Wallet CardsGo to Q&A Index
Sometimes, just having a medical ID shows you've gone to the trouble of putting this information in one place and feel it important enough to show and that can get you some respect. Until you can set one up, carry some index cards or a page of information in your wallet or purse to refer to or hand to someone if you can't talk. You may need one approach for general and one for emergencies.
Having a wallet ID card or an medical condition identifcation dog tag or such is one thing, knowing what to put on it is another! Sometimes it can be better to just say the simplest of things on the ID, and keep updating a file elsewhere. Some suggestions from our members with CFS, FM and OI have been drug sensitivites, complicated history, heat sensitivity, needs IV fluids, dehydrates easily, sensitive to anesthesia, orthostatic intorance, postural tachycardia, wheat and dairy sensitivity, administer Ringer's lactate, reclining recommended.
Great List of Medical ID Products at Children with Diabetes
MedicAlert.org (888) 633-4298
(The original digital USB device designed for emergency medic information and alert.)
American Medical ID
Keep Medical Information Online. Free Wallet Card. Bracelets and Necklaces.
Why are medical IDs critical?
Free Medical Wallet Cards
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