- Last Updated: 20 November 2015 20 November 2015
A major problem for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or fibromyalgia (FM) patients is the loss of muscle tone due to inactivity. The body's muscles help to control the tone of the blood vessels and help regulate blood pressure. For this reason and many others, it is very important to take care of the body's muscles.
ME/CFS patients especially need to find ways to do even the most minimal exercise. Here is the approach recommended by Dr. Nancy Klimas. To start, determine how many minutes you have during a good part of your day to do minimal movement before you start to feel tired. This is the amount of time you will exercise at the beginning. There are two types of exercise: aerobic and strengthening.
Aerobic exercise consists of body movement that increases the heart rate, such as swimming, bicycling, even walking.
Dr. Klimas highly recommends swimming since the water compresses vascular space, thereby encouraging circulation throughout the body. Swimming also cools and prevents overheating.
Your goal is to prevent deconditioning. Start with your minimal, fixed amount of time and do the same exercise every day for two weeks. Don't try to advance the amount of time or push yourself for the first 2 weeks.
After two weeks, add 7 minutes of the exercise at a different time of day. After another two weeks or so, you can begin to exercise a third time a day for another 7 minutes.
When you feel absolutely ready, you can increase the number of minutes in each period, but be flexible. If you're having a relapse, don't make yourself worse by forcing yourself to stick to your schedule. But as soon as you feel better, get back to your program. By sticking with it, over time, you will improve physically.
In six months, you may be able to exercise moderately for 15 minutes, two to three times per day. For many ME/CFS patients this is a rational goal that can be achieved without undue relapsing.
[N.B. Dr. Charles Lapp suggests doing two to five minutes of exercise followed by five minutes of rest instead. His suggestion might be more realistic, given the problems with mitochondrial dysfunction in ME/CFS. See "Mitochondrial Dysfunction, Post-exertional Malaise and ME/CFS" and Dr. Lapp's Exercise Suggestions .—Ed.]
Strengthening with isometric or weightlifting exercise
A major problem for ME/CFS patients is the loss of muscle tone due to inactivity and muscle catabolism from the cytokines involved in an over-activated immune system, especially when fever is present. Strengthening exercises are a very good way to maintain tone, and these exercises are not as difficult for the patient since they require less blood flow and oxygenation.
Moreover, the exercises should only be done every other day.
To start take a one-pound can of soup and do repetitions (biceps curls) with one hand until your arm is a little tired, then stop. Remember how many repetitions you did. Next, move on to the next muscle group and do the same thing.
Rest the next day, since the rest allows the muscle to strengthen. For the first week don't change the number of repetitions. You will need a book of weight exercises to teach you how to progress. Dr. Klimas recommends the FM Survivors Guide by Dr. Mark Pellegrino that outlines an excellent exercise program.
[2015 Note: Recent research conducted at Marquette University indicates that more strength is developed in people over 40 if the weightlifting exercise is done slowly, holding the weight in place a few seconds, with fewer repetitions.]
- Last Updated: 29 November 2015 29 November 2015
1. Most Common Symptoms of ME/CFS
- Exhaustion, made worse by physical exercise (100%)
- Low-grade fever in early stages (60-95%)
- Recurrent flu-like illness (75%)
- Frequent pharyngitis (sore throats) (50-75%)
- Joint and muscle pain (65%)
- Severe muscle weakness (40-70%)
- Stiffness (50-60%)
- Post-exertional fatigue & flu-like symptoms (50-60%)
- Multiple sensitivities to medicines, foods, and chemicals (40-60%)
- Severe nasal & other allergies (often with worsening of previous mild allergies) (40-60%)
- Frequently recurring, difficult to treat respiratory infections (40-60%)
- Dyspnea (labored breathing or hunger for air) on exertion
- Painful lymph nodes (especially on neck and under arms) (30-40%)
2. Neurological Symptoms
- Sleep disorders & unrefreshing sleep (50-90%)
- Headaches (35-85%)
- Visual blurring (50-60%)
- Intolerance of bright lights
- Parasthesias (numbness or tingling feelings) (30-50%)
- Dizziness/ Lightheadedness (30-50%)
- Ringing in the ears
- Impaired cognition (50-85%)
- Attentional difficulties
- Calculation difficulties
- Memory disturbance
- Spatial disorientation
- Saying the wrong word
3. Other Symptoms
- Worsening of premenstrual symptoms (70% of women)
- Nocturia (excessive urination during the night) (50-60%)
- Tachycardia (abnormal rapid heart action) (40-50%)
- Chest pain (25-40%)
- Cough (30-40%)
- Weight gain (50-70%)
- Nausea, especially in earlier stages (50-60%)
- Diarrhea, intestinal gas or irritable bowel (50%)
- Intolerance of alcohol
- Night sweats (30-50%)
- Dry eyes (30-40%)
- Dry mouth (30-40%)
- Rash (30-40%)
- Frequent cancer sores (30-40%)
- Herpes simplex or shingles (20%)
- Symptoms worsened by extremes in temperature
4. Less Common Symptoms
- Mitral valve prolapse
5. Psychological symptoms
- Depression (reactive or secondary depression)
- Anxiety (including panic attacks and personality changes)
- Emotional lability (mood swings)
The above information was compiled by Massachusetts CFIDS/ME & FM Association from data by Drs. Paul R. Cheney, Jay A. Goldstein, Anthony L. Komaroff, Charles Lapp, and Daniel Peterson.
Recommended for persons with Chronic Fatigue Syndrome (or Fibromyalgia) who are anticipating surgery
- Last Updated: 20 November 2015 20 November 2015
Recommended for persons with Chronic Fatigue Syndrome
who are anticipating surgery
by Charles W. Lapp, M.D.
Hunter-Hopkins Center, P.A.
10344 Park Road, Suite 300, Charlotte, NC 28210
Telephone (704) 543 9692
Chronic Fatigue Syndrome (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 Fibromyalgia (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, gingko, 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); and Echinacea (allergic reactions and possible immunosuppression with long term use).
• The American Society of Anesthesiologists recommends that all herbal medications be discontinued 2-3 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 2-3 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.
• Insure that serum magnesium and potassium levels are adequate.
• Hydrate the patient prior to surgery.
• Use catecholamines, sympathomimetics, vasodilators, and hypotensive agents with caution.
• Avoid histamine-releasing anesthetic and muscle-relaxing agents if possible.
• Use sedating drugs sparingly.
• Ask about herbs and supplements, and advise patients to taper off such therapies at least one week before surgery.
• Consider cortisol supplementation in patients who are chronically on steroid medications or who are seriously ill.
• Relapses are not uncommon following major operative procedures, and healing is said to be slow but there is 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.
Charles W. Lapp, MD
- Director, Hunter-Hopkins Center
- 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
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.
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.