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Interventions for Low Blood Volume

If an ME/CFS patient  has low blood volume or neurally mediated hypotension (NMH), there are basical­ly two therapeutic approaches. The whole sys­tem can be visualized as a system of pipes and a pump. The first approach would be to fill up all the space in the pipes, so that the heart would not experience the temporary loss in volume. Water, salt and the drug Florinef would be the therapeutic means to increase the blood volume.

The alternate approach is to regulate the heart (pump). The cardiologist can give beta blockers, that make the heart beat at an even 60 beats per minute all the time. This allows the heart a little more time to fill between beats, so it more fully fills. But beta blockers can have the side effect of fatigue. Therefore the physician must balance the risk vs. the benefit of the therapy.

Dr. Klimas outlined her approach for increasing blood volume. First, over a two-week period, substantially increase the intake of water and salt, using salt tablets. She clearly warned that water should not be increased without also taking salt, since increased water by itself acts as a diuretic (you will pee out more fluid; in so doing, you will reduce blood volume and become sicker). Also, you must take proper amounts of water and salt. Too much salt can result in hypertension. Your blood pressure will go down when you stand up. If you overshoot, you will do so when you are lying down. The blood pressure must be moni­tored, both lying down and standing up.

In addition to water and salt a physician may prescribe Florinef. However, Florinef caus­es the body to lose potassium. Potassium loss can be serious. The result can be terrible fatigue, heart arrhythmias, or skeletal muscle malfunction and paralysis. You must have your doctor monitor your potassium levels regularly.

One aid for NMH is to elevate the head of your bed 30 degrees or higher. The elevation maintains a signal in your brain all night long that you're a little upright. This keeps the tone in the vessels a little tight all night, preventing a relaxation in the venous tone of the legs. As a result, when you rise in the morning, the blood supply is not pushed entirely into the legs and there is less of a drop in blood pressure.

A minimal and achievable exercise program

Again, in relation to blood pressure, the body's muscles help to control the tone of the blood vessels. For this reason and many others, it is very important to take care of the body's muscles. ME/CFS patients need to find ways to do even the most minimal exercise. Here is the approach recommended by Dr. 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

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.

Strengthening with isometric or weightlifting exercise

A major problem for ME/CFS patients is the loss of muscle tone due to inactivity. 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. [Editor's note: 2015 research at Marquetts Univeristy has shown that for older healthy people, such exercise has to be carried out slowly for the best results.]

Medications for compressing the vascular system

Besides exercise, the vascular system can be compressed using various medications. Many patients use caffeine or Sudafed. The problem is these substances can cause tachycardia.

Midodrine, a prescription medication, is a more specific vasoconstrictor, especially in the legs. It shunts blood to the head, but some patients can't tolerate it. Dr. Klimas said she has had good experience with it. It is best to start at very low doses. ME/CFS patients should divide the stan­dard dose by 4 or 10. Dr. Klimas starts patients at one half or quarter tablet the 1st day. If the patient does well, then she gives the same dose in the morning and at lunch. The next increase is to morning, lunch, and then mid-afternoon.

There is a timing issue involved in tak­ing Midodrine. Blood pressure shifts after meals, and the blood supply is then shunted to the gut. Therefore, it is best to take the med­ication before meals.

Don't take Midodrine before bed since it raises blood pressure 10-20 points.

If your blood pressure is normal lying down, you don't need this medication. If your pressure is too low when you are lying down, then Midodrine might help you.

Sleep disorder and ME/CFS

Dr. Klimas said that sleep was one of the most critical factors affecting the illness: "If you can't get sleep under control and help the patient get restorative sleep, you really can't help the patient make any substantial improve­ment with any real speed. Every effort must be made to help the patient get restorative sleep."

The problem of sleep best highlights the interactive involvement of the brain, hormonal, and immune systems in ME/CFS. If a person has a severe sleep disorder, his or her immune and hormonal systems may be severely out of bal­ance and dysfunctional.

Sleep sets the circadi­an rhythms of the immune and endocrine sys­tems. When normal sleep is disrupted, the diurnal patterns of cortisol and prolactin pro­duction are altered, as are the diurnal patterns of NK-cell function. Alpha-wave intrusion on sleep EEG also occurs.

Sleep Therapies

It is necessary to work to reestablish the body's circadian rhythm by reestablishing a regular sleep pattern. The goal is to set a bedtime for the same time each night, and then to fall asleep shortly after going to bed. Her idea is to create a conditioned response—to associate being in bed only with nighttime sleeping. If one is only in bed to sleep, then getting into bed is more likely to result in sleep. To establish this conditioned response, the ME/CFS patient must avoid using the bed for resting or reading during the day. Dr. Klimas says this approach will help you fall asleep at the same time each day. The approach may not help you stay asleep or help you obtain the proper restorative sleep.

If you do need medication, Klimas advises, "avoid using the short-acting hypnotics." These medications, like Ambien and Restoril, are designed to help you fall asleep. The problem is they don't help you stay asleep. Moreover, these medications trap people in the lighter alpha sleep.

ME/CFS patients need a drug to induce deeper sleep—stages 3 and 4. The drug also needs to last 8 hours so the per­son will remain asleep. Tricyclics in low doses, like Elavil and especially Doxepin, are very good choices. Doxepin has the added benefit of having antihistamine and anticholinergic prop­erties. It comes in a liquid so patients can control the dosage by adjusting it to just drops.

Dr. Klimas warned that ME/CFS patients must be careful in using the Selective Serotonin Reuptake Inhibitors (SSRIs) for sleep, i.e., the Prozac class. These drugs can be either sedating or activating. It is important to know which of these drugs sedate and in what doses.

Prozac is an acti­vating drug. If you take it in the morning, it will peak in the evening and then you won't be able to sleep. You should take it at night so it will acti­vate in the morning.

The new drug Serzone is used to improve stage 3 and stage 4 sleep. Klonopin can help with restless leg syndrome. Flexeril can be used to relax the muscles at night.

Treatment of Pain in ME/CFS

The effective treatment of pain has to be a high priority. Months and years of moderate and severe pain can take a serious toll physically and mentally. Most doctors rely on NSAIDs (nonsteroidal, anti-inflammatory drugs) like ibuprofen, which don't work very well with ME/CFS.

Tricyclics (Elavil, Doxepin) can help with pain thresholds so there is less perception of pain. Opiates, from codeine to morphine, are sometimes used to control pain. The use of opiates is controversial because of the fear of addiction.

Dr. Klimas, however, argued that because of the serious consequences of pain in ME/CFS, sometimes the use of opiates must be risked. She said, "I have never lost anyone to CFIDS/ME, but 1 have lost people to pain. The people who die of CFIDS/ME die from suicide, and typically people don't kill themselves unless there is a big pain piece to their illness."

She would argue vehemently that opiates have a role for some patients, though not a majority of patients. When serious pain control is needed, Dr. Klimas often prefers to use longer acting, low-dose morphine that lasts 12 hours or the new 24- hour type. Shorter-acting Percocet may be more addicting. New neurotransmitter analogs like Neurontin also have a role and are not addictive. She'll try these first.

Dr. Klimas also emphasized that it's essential to understand the interactions of the various medications the patient is taking. The interactions themselves could be causing symptoms and affecting the individual's sleep.

Other therapies: Self-help for cognitive symptoms

The prescription for cognitive dysfunction is: practice, practice, practice. There are many patients who become isolated and reduce their cognitive challenges. Do crossword puzzles, vol­unteer, go to a class, tutor, go to meetings, do something fun. Try not to sit by yourself at home all day. Listen to book tapes. Know your best time of day to do intellectually challenging work.