*This abridged version of the seminar transcript was edited by Pat Fero; and by David Thompson, Auckland, NZ, Nov. 2006; It first appeared in the vol. 19, no 3rd. edition of The Lifeline, A Quarterly Newsletter of the Wisconsin Chronic Fatigue Syndrome Association, Inc. (subheadings, underlines, ‘Dig Deeper’s’ added by Cort Johnson)
Let me first describe my clinic. I’m a General Internist, and I practiced general internal medicine from 1991 to 2000. As a resident, I had an interest in chronic fatigue syndrome because my sister had CFS. When I returned to Utah in 1991 after four years, I discovered my vigorous, strong sister had some chronic illness nobody could explain. So, being an enthusiastic, optimistic new doctor, I decided I’d help her figure it out. That started me toward being a chronic fatigue and fibromyalgia specialist.
My interest in chronic fatigue syndrome started in the late ’80s. By 2000, I felt that even though I had an interest, attended every conference, and had many patients, I was completely inadequate at assessing and taking care of patients. I needed to either stop or commit fulltime. So, I took a big leap of faith and closed my internal medicine practice. I sent my 3,000 patients a letter saying you have to find a new primary care provider and I’m going to open a fatigue clinic.
In 2000, I just hung out my shingle, at a very cheap new address, having no idea what would happen. I was busy doing fatigue consultations from the minute I started. And since 2000, we’ve seen about 1,000 patients in consultation for this group of illnesses. Most people only come to my clinic after thorough workups from several physicians.
In fact, now we require people to have a primary care physician. We want a partner. You’ll figure out by the end of this talk that one of my missions is to train other physicians, to motivate and to teach them to manage these illnesses, and not just physicians, but all healthcare providers, mid-level providers, nurse practitioners, and physician assistants. I’m always finding devious ways to engage them, in understanding the condition. When you know the illness, it is enticing and interesting. I try to get people over that information hump and the fear of ignorance.
There are many ways to approach these illnesses. Our clinic is methodical and conservative. We evaluate very thoroughly over several hours, doing interviews, testing, and a physical. We do lab tests, and review records. We come up with a written report, give the patients’ illness a name or sometimes several, depending, then embark on a plan of management.
We could’ve seen lots more patients, but imagine spending that long with 1,000 patients! That’s major exposure time. I have a good sense of what walks into a primary care setting, and it usually represents the type of group here today, at my talks.
At groups like yours, I see a big variety of illness manifestations. People have different problems, or “heterogeneity”, and when we try to study this illness, it confounds us and makes us frustrated because there are probably subsets and overlapping problems. Your age and many, many different factors might also play into your condition.
My goal today is to distill for you a more simplified approach. I think the primary problem for patients is having a medical provider who takes time, is thorough and knows their illness. In the absence of that, I can empower you with some ideas. You can take the things that seem to match your symptoms, and some of these ideas back to your physician, or your mid-level providers, or your specialists, to direct your own healthcare.
I want to make sure we’re all talking about the same thing, or at least you understand my perspective. There are five things on my list of “unexplained” chronic “fatigue” with fibromyalgia and the chronic fatigue syndrome being the last two.
- Early, Mild or Nonspecific Presentations of Other Illnesses: First, I’ll discuss other possibilities. When I deal with large patient populations, I also see people who have early, mild, or nonspecific presentations of otherwise well-known illness. That means someone might have an early form of multiple sclerosis (MS) or a hard to diagnose form of underlying cancer malignancy or a chronic infection that has eluded everyone. Sometimes people have a diagnosable illness that is missed, or it’s not identifiable yet. Truth is, medicine is not that black and white. If someone gets a diagnosis of MS, they may think, oh, my gosh, that explains how I’ve been feeling.
- Well, they didn’t just suddenly get MS. The MS finally got to the point where it was measurable or diagnosable, or someone thought to order the test. So sometimes there are underlying chronic illnesses, and sometimes it’s not a misdiagnosis, it’s just too early or our tests don’t always show until it matures or becomes obvious
- Rare Genetic Conditions and Problems: There are also scattered patients with rare genetic conditions and problems that never find the right specialist. And it’s hard to know when to stop searching but, sometimes, people finally find the right doctor.
In my experience, rarely does missing these diagnoses change the outcome. Does that make sense? It’s nice to know the name of something, but pretty rare that the missed diagnosis would have really changed management. You know, I’ve had people have problems show up later, but knowing earlier would not have made much difference. You can be reassured that, for the most part, the system does pick up illnesses we can address or reverse.
Multi-factorial Fatigue: My own preferred term is multi-factorial chronic fatigue. Sometimes I just cannot believe how many things are wrong with somebody. They come in and have had way too many bad things happen. I think all those problems combine to disabling the person. You can slide them into the diagnosis of chronic fatigue syndrome, but I think it’s sometimes just an additive effect. Yet, it doesn’t matter because our approach to treatment is exactly the same. It’s supportive. A person can meet the case definition, but sometimes I wonder: What about that car accident? Concussion? Did this or that added up in a person’s life cause such a horrible chronic fatigue syndrome? We’ll never know.
Fibromyalgia syndrome is diagnosed when someone has widespread chronic pain and stiffness involving four quadrants – each arm, each leg – and usually the axial spine, so the neck and/or back. Very often headaches come with it, but it isn’t necessary for the diagnosis. It’s not just chronic pain. It involves fatigue, disturbed sleep, cognitive complaints, headaches, irritable bowel, interstitial cystitis, and the list goes on.
Remember these terms are invented to try to explain a phenomenon. Fibromyalgia arose in rheumatology. Rheumatologists were seeing patients who came in complaining of hurting all over. Thinking they must have an inflammatory disorder, rheumatologists couldn’t find any typical rheumatology test. Ideas gradually evolved and we ended up with fibromyalgia, a description. Notice fatigue is in the background?
Defining people by pain creates a spectrum and somewhere on that spectrum, there’s not much fatigue, there’s some, but it is functional. Elsewhere, are people with severe debilitating chronic fatigue as part of their Fibromyalgia. I have many fibro patients. We can institute a few changes, get them exercise, and pain decreases, their sleep improves, and they regain a high, or acceptable level of function, depending on the original severity. These people are on the more moldable end of the spectrum; whereas, others are severely impaired by combined symptoms.
Just a reminder: tender points were an effort by the first doctors studying fibro at an objective measure of proof for other doctors that this illness really existed. Otherwise, they’re less helpful, but they have been used as an objective marker, they stand up in court, and we use them as a way to define Fibromyalgia. We’ll keep using them until we have better measures.
Chronic Fatigue Syndrome. In order to meet the CDC 1994 case definition, your fatigue has to be clinically evaluated, essentially not explained by other things, persistent, at least six months old but, not lifelong, not from birth), and then it must cause substantial reduction in activity. In addition, you need at least four of the following: post-exertional malaise, impaired short-term memory or concentration, unrefreshing sleep, muscle pain, joint pain, headaches, sore throat, tender cervical or axillary lymph nodes. I don’t want to belabor it, but the key here is post-exertional malaise. If when you try to do things, there’s a payback for your efforts, that’s post-exertional malaise. The severity and length of the payback are hard to predict.
Few illnesses have post exertional malaise. It does occur in fibromyalgia to a degree, but it’s more of a pain payback in people on that milder end of the spectrum than a severe limiting fatigue payback. This is why not all fibro patients meet the CFS case definition. Many can sustain fairly good levels of activity despite their illness,
This 1994 CFS case definition is not about feeling overworked and overtired. When you tell people you have chronic fatigue, they say, “Oh, I’m always tired!” Well, they don’t have diminished level of activity function, and that’s a distinguishing feature of chronic fatigue syndrome.
What’s critical is that probably between one and four million Americans meet this definition. If you feel frustrated, you’re not alone. Is it one thing? Are there subsets? This is all being argued. But, clearly this limiting, multi-factorial chronic fatigue is really quite common. Whether it’s called fibromyalgia or chronic fatigue syndrome, you are an individual. If you meet the case definition, you can use that label.
An Unclear Definition: One of the frustrating things about the CDC case definition is that it says you really can’t give someone this diagnosis if there are other causes for fatigue. I think this has created some confusion. How many Americans have co-existing conditions with their chronic fatigue syndrome? How big would those numbers be if they were included in this CDC case definition? These are thorny questions that we will have to deal with someday. We may have a much bigger public health problem if these factors are accounted for.
Also, the CDC definition is the research case definition. Its purpose is to identify people for study who don’t have overlapping conditions. Anyone with fibro and significant fatigue actually meets the CDC case definition because you only need four of those symptoms, and four of those are also on the fibro list. So if fatigue is not explained, and if there is significant fatigue along with the fibro, you can see there’s a great deal of overlap that makes it difficult to do research. It’s very hard to tell who’s who and what’s what.
The Canadian Case Definition (See Slide 1) was put together by a group of experts who came together and said what’s another way we can describe this illness that is more inclusive and can be used in the clinical setting.
The Canadian case definition is similar to the CDC definition, but it describes autonomic manifestations, neuroendocrine manifestations, and immune manifestations. And in order to meet the Canadian definition, you’re supposed to have one symptom from at least two of those categories. I think most people will recognize themselves within this case definition.
Treatment: The clinical management of symptoms in these illnesses is extremely complex. Are symptoms indications of overlapping conditions? Subsets? Someday, we’ll have better ways of explaining this. I can look at a set of symptoms. As a clinician, when my patient has fatigue, I am thinking – is it from an infection? Allergies? Hormones? Their sleep? Mood? De-conditioning? Is the pain making them tired or the medications? Is it orthostatic intolerance?
So for every symptom, I think about multitudes of factors. I have to tick through all of these things for fatigue. The same is true with pain, which occurs in numerous ways with many dimensions. It could be pins and needles; or stabbing, or all over; or in one place, or migrating; or background or overwhelming.
There are many kinds of headaches. I get headaches if I have sleep deprivation, or hypoglycemia and the same holds for an ill person. Sleep can be destructed by numerous things, too. So one way of looking at this illness and its complexity is to realize that there are some major symptoms that we can address. But every time you attack those, you’ve got to think about all the contributing factors, not just guess.
Another way to look is by affected systems, and we’ve already defined that a little bit: Neurocognitive, autonomic nervous system, symptoms and immune and infection symptoms. I always put immune and infection together because sometimes you can’t tell if your symptom is from an active infection or the immune response.
Sometimes the infection is long gone, and your immune system is still reacting. And we know that the immune system is what creates all the symptoms of infection like fever and aches and fatigue. If you can take away the body’s inflammatory and fatigue response, you’d die from the infection, but you might not have as many symptoms going on. It is complex.
Another example is neuroendocrine. The hypothalamic pituitary axis (HPA) instructs and is instructed by the rest of your body, by the central nervous system. It makes your whole body run. These body systems are not independent. They’re interdependent, complex feedback symptoms all working together. We have not sorted this out yet.
Three Main Points: Today you could take three main things away in approaching management and treatment of your disorder:
- You should recognize and take care of your own co-morbid conditions.
- Second, you should learn how to prioritize and treat your worst symptoms.
- Third is finding that really challenging but important balance between pacing and de-conditioning
Top Tip: Before discussing co-morbid conditions, my top tip in these Tips and Travails of Treatment is:
“Get your healthcare maintenance done because these tests
are proven to screen for underlying chronic illness that otherwise might be missed. “
Pap smears will pick up cervical cancer, and mammograms might pick up breast cancer that otherwise wouldn’t be discernable. Colonoscopy can screen for colon cancer, etc. I especially recommend a fasting lipid panel because this screens not only for cardiovascular disease, but also for metabolic syndrome and pre-diabetic conditions. You should be responsible for healthcare maintenance. Doctors will lose track. Information especially gets lost between us and a primary care physician. Insidiously, while we’re busily managing their fibromyalgia, they could be developing breast cancer.
Healthcare maintenance is your job, too. When you have a lot of symptoms, and you feel ill, you should rely on proven screening mechanisms for other problems. Having one horrible illness doesn’t mean you can’t get another one. Keep track on your calendar. Age-appropriate screening can be guided by your primary physician.
Co-morbid conditions. (See Slide 2) They might be a whole separate disease or just something that’s evolved as part of your condition maybe because, say, you gained weight on certain medicines.
Whether it’s a subset or another condition doesn’t matter. All of these are conditions regular doctors can take care of even if they know nothing about fibromyalgia and chronic fatigue syndrome, but you will need to prompt them. So you can say, “Doctor, do I have metabolic syndrome? Do I meet the criteria?” Or “I’m really having a lot of problems sleeping, will you work me up for whatever kind of sleep disorder might be present?” You don’t need a specialist in fibromyalgia and chronic fatigue syndrome to carefully work up co-morbid conditions and get the best-known medical care for them.
Orthostatic intolerance (OI) (See Slide 3) is a common part of chronic fatigue syndrome and often fibromyalgia. Orthostatic intolerance manifests by fainting, dizziness, rapid heart rate, and arrhythmias. By treating OI, I have improved people’s headaches and sometimes generalized weakness. Neurally Mediated Hypotension and POTS (Postural Orthostatic Tachycardia Syndrome) are variations of orthostatic intolerance defined with the Tilt Table Test. Orthostatic Intolerance is difficult to treat in middle-age if it means artificially giving you hypertension. An 18-year-old with systolic pressure (that’s the first number in the reading) of 80 or 90, can take salt and medications to raise blood pressure, but middle-aged people have too many co-morbid conditions. So OI can be treated, but the range of interventions depends on age and cardiovascular factors. Middle-aged patients with OI can still change behaviors, like avoiding getting overheated or dehydrated, or standing up too long. You can drink plenty of fluids and wear support hose. Physical conditioning helps too.
If you’re hypertensive, take care; and it is possible to have orthostatic hypotension WITH hypertension. Diabetics may have this and it’s really damaging. Again, you have to look at the whole medical picture.
- Dig Deeper! Treating Orthostatic Intolerance
Sleep disorder. (See Slide 4) We could do a whole lecture on this co-morbid condition. I’m aggressive about sleep as a foundation of therapy especially for Fibromyalgia. You can reverse some people’s fibromyalgia by restoring or approximating normal sleep. I always think about ideal sleep. I ask what patients think of their sleep. Yeah, it’d be nice not taking medications, but chronic sleep deprivation will make
you more ill during the day and long-term
You need to avoid aggravating sleep disorders. Eighty percent of my patients make their sleep worse. It’s just human. You know, when you finally wake up, you don’t want to go to bed. People chug down caffeine, or take medicines like decongestants that disrupt sleep.
You should have your sleep assessed. The commonest findings in sleep studies are movement disorders, jerking, and wiggling, and needing to move. You wake up all night long, but never enough to know you have a problem; that creates daytime sleepiness. Obstructive sleep apnea, is when you don’t have good air movement. There are several causes for obstructive or central sleep apnea, which means your brain is not signaling your body to breathe, and you have fewer or shallower breaths.
I want to emphasize that people don’t stop breathing and die during sleep apnea. Sleep disorders in general disrupt your sleep insidiously all night, and prevent deep-sleep phases, and they can cause cognitive dysfunction, headaches, and make you feel lousy during the day. But I must also emphasize that obstructive sleep apnea with hypertension will insidiously damage your heart and lungs, but that happens over many months, many years of untreated sleep apnea from the elevated pressures. You can actually have irreversible changes in your heart and lungs with untreated sleep apnea. So some immediate symptoms and some long-term consequences come from not treating your sleep disorders, and the irreversible long-term effects are from the apnea disorders.
Many medications can be used fairly safely to get you to sleep. I’ve come to believe that while natural is best, if you don’t sleep, if you cannot develop some kind of restorative sleep, even medicated sleep, it’s one of the worst things about your illness.
So we have good news, bad news with almost every single treatment for this disorder. Some medications are short acting. The Melatonin and Rozarem are not as short acting. These are all effective in somebody, and they’re all relatively safe. These medications will initiate sleep in most people. Some are expensive, some of them cause brain fog, and sometimes people wake up exactly when the medicine wears off.
- Dig Deeper!: Treating Sleep in Chronic Fatigue Syndrome (ME/CFS)
Metabolic Syndrome. People with metabolic syndrome do not metabolize carbohydrates normally. It shows as a body type. It’s very common in our society. We can cause it in people with certain drugs, but it’s really a genetic tendency to gain weight around the middle, and as you age, and as you’re de-conditioned, your weight goes up. You get hypertension and high cholesterol, particularly the kind with high triglycerides and low HDL. Having those two things on your cholesterol panel may mean metabolic syndrome. You have fluctuating blood sugar. You sometimes have periods of hypoglycemia (low blood sugar) and react to it with hyperglycemia (high blood sugar) These big fluctuations of insulin levels and glucose levels are a problem because your metabolism is abnormal, and you feel temporarily better by consuming sugar and refined carbs. However, the more you spike insulin levels with sugar, the worse the problems gets. The more your insulin levels and glucose levels go up, the more driven the appetite. It’s a vicious circle. It’s hard to stop the cycle because you feel rebounds when your blood sugar drops, and when it goes up.
I have metabolic syndrome, and now I am 40 pounds lighter. I was overweight. The only way I’ve ever been able to lose weight is a combination of changing the type of food I eat, consistent with metabolic syndrome and exercising. Now remember, I don’t have a limiting illness. I can exercise hard and not lose weight without implementing a change in diet. The more you load your bloodstream with sugar, the more you get an overproduction of insulin, and insulin is a strong drive for fat storage, it raises your blood pressure, it makes you retain water, it makes you tired, and it makes you achy.
So, you can read about it. Most low sugar, low-refined carb diets will help. They do not need to be extreme, like the Atkins Diet. You know, it could be any kind of high-fiber, low-sugar, low-refined starch diet. You have to get rid of the cold cereal, the sweets, and living off the potatoes and pasta. And I just have a rule that I don’t drink my fruit. I don’t drink juices. I don’t drink my calories, and I don’t eat sweets. I don’t eat a lot of white starches and refined food anymore. I have tons of food to eat. You can eat Mediterranean style. You can eat Asian. But we have a society that relies on refined carbs and sugar.
If you have metabolic syndrome, you can gradually shift the way you eat. You can find things you like and then you need to increase your activity level. Be very careful because many fibromyalgia medications worsen metabolic syndrome.
Mood disorders. I see enough patients to know these illnesses are not mood disorders. But I can tell you that mood and stress influence pretty much every illness. Because these particular illnesses are in your central nervous system, if you are stressed, or afraid, or discouraged, or down, or pessimistic all the time, your illness will be worse. I promise you.
I didn’t finish the story about my sister. She eventually developed non-Hodgkin’s lymphoma and died related to a stem cell transplant. I have many, many wonderful memories from my time with her, and one of the reasons I know about these illnesses is because I knew my sister: her insights and her desires to be well, and her embarrassment about the illness. I also knew discouragement and stress would make her illness worse. One day I got frisky and honked the horn of my new car at her using the remote; that put her in bed for the afternoon!
All kinds of stressors can worsen your illness. For what I do, I don’t care what caused the stress or that stress is an illness or both. You are not normal if you don’t get discouraged and have periods of depression and anxiety related to your chronic illness, just like my sister. You don’t necessarily require a drug for it, but you really need to be insightful about your mood. I’m a big advocate of working with a therapist. Belonging to a group, a CFS group or otherwise can often help, as can medications.
Focal pain syndrome is important. When you hurt all over, you forget some pains come from one place and can be fixed. And when you tell your doctor that you hurt all over, your doctor has no idea how to help you. So it’s really up to you to sort out the parts of your pain. Simplistically speaking, people sometimes just get overwhelmed with their pain. I have patients color regular pain diagrams. Scanning through their months of diagrams, I’ll see maybe they have focal low-back pain, so we concentrate on working up the back. There are all kinds of interventions for various focal pains: injections, surgery, medications.
Hormone imbalances. This gets somewhat more subtle. You don’t want to miss obvious hormone deficiencies. One of the most useful things for menopausal and peri-menopausal women is modulating hormones. But you have to balance risks with benefits, and people respond very individually. Returns also diminish with age.
Thyroid and adrenal hormones and human growth hormone, when truly deficient, should be replaced and followed closely. Hormonal disorders can masquerade as these illnesses, but they should be diagnosable. However, there’s a separate movement to treat fatiguing illnesses by giving lots of extra adrenal and thyroid hormone. I urge caution. Although you can improve people’s symptoms short term by manipulating hormones, when you add thyroid, or cortisol, or other hormones that are part of your HPA axis, you inevitably get a negative feedback to your organs telling them to stop producing your native hormone. After eight to twelve weeks of your native hormone plus the extra, your own down modulates until you return overall to about the original level. The benefits will wane, and when you stop supplementation you will feel horrible because you now have an insufficient organ.
One small study of patients on cortisol found temporary benefit that waned. When hormones were withdrawn, the adrenal glands had atrophied – actually shrunk. They were less productive, and couldn’t bounce back. You need to go into this kind of supplementation eyes wide open so you don’t crash. It takes a long time for your own hormones to restart. You have a choice. Get some careful workups.
Allergies and asthma, if you have them, should be aggressively treated. Avoid your allergens, down-regulate your allergies and prevent that immune response. An activated immune system makes you feel unwell. Asthmatics and allergics feel tired and breathe poorly, and they even get sleep apnea.
Chronic infection. Similarly, be alert to chronic infections. Several patients improved greatly when we cleared up their chronic dental infection or sinusitis. A grinding infection keeps your immune system up regulated and tires you. For instance, any reactivating viral infection is problematic. I often see shingles, even in young people. Shingles is a virus you harbor, and it flares up through various stressors. Knowing about viral infections is important. Have you ever been exposed to hepatitis B or C? These questions belong in your normal workup or screening. Anything that can be identified and treated should be. Once again, my tip is that you can raise these questions with your doctors, proactively.
That said, viral infections are often hard to prove and harder to treat, plus expensive. One patient felt a lot better after a month of Valtrex, but it cost her $1,000. Whoa!
GI Symptoms: Most GI symptoms involve motility problems and the autonomic nervous system, but other considerations abound, like immune reactions with lactose intolerance and celiac disease. (See Slide 5) If you have GI symptoms, see a gastroenterologist. Screen for all these illnesses, then you can manage your own treatment.
Travails of Treatment There are medicines for every symptom and you can easily be on 20, but then the medicines sometimes can make you sick in turn. We have to use medicines a bit ingeniously without overloading and adding to the travails of treatment, so to speak.
Doctors, especially internists, have been taught not to treat symptoms without knowing an underlying cause, and that’s one reason they have hesitated to treat these illnesses – on the basis that if you don’t know what’s causing it, you can’t just treat the symptoms. Well, you can. After
the workup is done, an MD can start to treat disabling symptoms. Every visit, my patients roughly rank their symptoms, from zero to ten, just to communicate to me what we have to work on: the tens. (See Slide 6)
You can do this for yourself. Once a week, fill out your symptoms, see which have risen and fallen, and what things are overwhelming you. Then you go to your doctor and say that your fatigue has escalated and these charts show it. This simplifies our job.
Good news, bad news. I want to turn to some groups of medications we use to treat mood, pain, headaches, and sleep. Wouldn’t it be nice if one medicine treated everything? Well, it’s not that simple, but if you understand the medicines, you might be able to simplify them. (See Slide 7)
Seven families of drugs are featured here. The first family, tricyclic antidepressants (TCAs), has about ten members, but I have
listed two: amitriptyline and doxepin. The next is trazodone, clear by itself, for sleep. Then come the Selective Serotonin Reuptaking Inhibitors (SSRIs). That’s like Prozac, Zoloft, and Lexapo – all good, potent antidepressants that are more modern. Next come the even newer class of Serotonin and Norepinephrine Reuptaking Inhibitors (SNRIs). These are very potent pain modulators that may also act as antidepressants. Cymbalta is the commonest. The next category are anticonvulsant drugs: Neurontin, Lyrica, Lamictal, Topamax that I use very commonly. The last category is atypical antipsychotic drugs, but we don’t use them as antipsychotics. We use all of these to work in the central nervous system. Like anti-Parkinson’s drugs, and benzodiazepines, we’re searching for drugs that work in the central nervous system to modulate symptoms. We borrow these drugs. It’s called off-label use. That means they haven’t been studied for these illnesses, but they have been studied for others and shown safe.
I made up this decision chart. It shows my own general success in all patients with this drug for this purpose. See all the little pluses? Say I want to choose a drug for sleep. I look down the sleep column, and the more pluses it has, the more I think it works for sleep. Let’s look at Zyprexa on the very bottom. Zyprexa is probably the most reliable drug to get someone to sleep who has terrible sleep deprivation. But if you look across, the biggest problem with Zyprexa is weight gain. And someone who’s going to gain weight on Zyprexa might put on eight pounds in the first two weeks or month. Depakote is another example. That’s the first one listed in the anticonvulsive family. Depakote is also wonderful for bipolar disorder and migraine prevention, but it can easily put on 60 or 80 pounds over six months to a year if you have metabolic syndrome. So there you go: good news, bad news about medications.
Now don’t forget, you cannot worship this chart. People in this illness population fall along a spectrum. Again, you need to prioritize your symptoms first. But a chart can help you figure out what works best for you and understand the possible side effects. Let’s look at migraine. The very best medicines, I think, for migraine are Topamax and Depakote. The tricyclics are okay, but not that reliable. Depakote and Topamax are awesome: almost 80% reliable. If migraine is your most debilitating, horrible issue, you might elect to take one of those drugs and mitigate their side effects by changing diet.
Take other examples. My two favorite pain medications are Topamax and Zonegran. Some people actually shed weight on these. Topamax is really hard for some people, but for others, it’s incredible, so you can’t generalize about a drug. Every drug has this spectrum of how it will work; every drug on here has proven value, proven safety, yet it could be horrible for any one person. Let’s say pain is your worst issue. You look across and say, what are the other things this pain drug might do? How might it be for sleep, or for mood? Is it a mood stabilizer, or could it worsen mood?
This chart will help you decide the medications you might discuss with your doctor for your personal symptom management. You go to your doctor and say – Would this be a good thing for me? Would you teach me about it? If your doctor doesn’t know about it, they will know someone who might know more.
Fatigue. Should we be treating the fatigue with some kind of a drug that just treats fatigue and cognition? I’ve had some success with that. I think it’s more helpful for fibro patients and people who have multiple medicines and maybe other medical causes of fatigue. The more pure CFS you have, the less you can fix it with a stimulant. That’s just my experience. (See Slide 8)
People with more pure CFS on one end of the spectrum with immune dysfunction often show real drug sensitivities and have less success with stimulants. However, one small clinical trial of Ritalin demonstrated an increase in cognition and decrease in daytime fatigue, with reasonable tolerance. The biggest problem with Adderal and Ritalin is that they’re Schedule II drugs, and highly controlled, so require very frequent doctor visits. Some doctors are uncomfortable prescribing these because there’s a hassle of writing up the prescriptions, and every state’s rules differ. This is something you can take up with your doctor if it seems appropriate for you, especially if using those medicines would treat multiple things. So if you have ADD – Attention Deficit Disorder – or if you’ve got sleep apnea and Provigil is approved for the daytime fatigue of sleep apnea, that might be a good choice for you. If you can, kill two birds with one stone.
- Dig Deeper! Stimulants and ME/CFS (chronic fatigue syndrome)
Q. “What about problems with these medications and anxiety?” The biggest problem with stimulants is either sleep disruption or daytime anxiety. Anecdotally, people with anxiety sometimes still benefit. It depends on the person, particularly if your anxiety is well treated in some other way. The amazing paradox is that sometimes anxiety doesn’t worsen. I trust my patients. People observe. They don’t like taking a medicine that doesn’t do good things for them. I tell people what to watch for. The two things that would make me say absolutely not to take this drug are if it gave you more anxiety, or if it made your sleep worse. Why would you want to worsen two symptoms? It becomes an individual decision. You try medicines in small doses if you think it might help with cognition, focus, and a little bit with fatigue. It’s no cure, but it may help you feel and function better.
Pacing and Exercise. How do you balance pacing and deconditioning? The most effective intervention for chronic fatigue syndrome is pacing, better than every intervention any doctor has ever prescribed. I think when you learn how to understand your activity level, and self-govern your activity, and not cross over that line, that is the single best intervention for modulating your symptoms.
However, when you don’t do anything, you become extremely deconditioned. If you permanently immobilize an arm in a cast, it’s turned into a wet noodle. Likewise in Chronic Fatigue Syndrome, in six or eight weeks, all your muscles atrophy and they take ages to rebuild. If your pre-illness conditioning level is up here, and your activity reduces to here, your physical conditioning, meaning your strength and ability to tolerate activity, will gradually fall to your new average. Sustaining your conditioning level requires work. This is a given for all chronic illness. Exercise tolerance is individual, so you need to really figure this out, but not knowing how or not wanting to exercise is a human condition. It has nothing specific to this illness.
I’m not telling you to go out and do an exercise program, but I want to show you a few sample studies.
This chart (See Slide 9) shows the results of cardiopulmonary testing in 203 patients with chronic fatigue syndrome who were in an Ampligen study. Every participant was too sick for full-time employment, yet you note quite an array of impairment. Some
people couldn’t walk more than a few moments on the treadmill and a good number showed a non-discernable abnormality on their treadmill test. Your VO2 is oxygen consumption, which reflects energy or metabolic activity upon exercise. It is measurable with the little Darth Vader mask that records carbon dioxide and oxygen.
Thirty-three patients fell into the ‘none to mild’ category of impairment with their group oxygen consumption at 29. Twenty-one of the 203 patients fell into this ‘severely impaired’ category with group oxygen number of 12. This may or may not measure anything about chronic fatigue syndrome. We don’t know who was taking Ampligen and who was getting placebo. This might be a measure of people’s complete debilitation and deconditioning, and / or maybe some of the people were better because they were receiving Ampligen.
This is more detail of test results. (See Slide 10) Age and Body Mass Index (BMI) were about the same across the board. With VO2 peak, percentage of predicted 02 use, note the huge variability. The same holds for Heart Rate (HR) and Standing Blood Pressure
peak (SBP). There’s a great variety of impairment in this one disabled population. You could figure out your position on that scale with a little experimentation.
This is another test with this group and a set of healthy controls, together with a retest, and it showed that it’s very difficult for chronic fatigue syndrome patients to reproduce the same amount of exercise two days in a row. That might help explain post-exertional delays. Something is damaged, or recalibrating, or recovering. There’s something going on in day two after a vigorous exercise.
So on the first day of the test, (See Slide 11) the peak VO2 is the same for patients and controls. On day two, the healthy controls reproduced their tests exactly, while the people with chronic fatigue syndrome had a much lower VO2. We took this to experts on cardiopulmonary testing and assessing chronic illness. They said, “We don’t know of a disease that does this and if this is real, then you should publish this.” More studies are needed. As you can see, we retested only six patients.
We did another little study with bicycle exercise. Twenty patients had CFS, mostly in the 20- to 45-year-old range. Then we matched 20 de-conditioned female controls – other females who just didn’t do any exercise, but weren’t chronically ill. We did cardiopulmonary and neurocognitive testing before, during, and after their exercise. The treadmill test showed what we thought. The CFS patients had lower results than controls, but the de-conditioned controls showed well below normal values, with an average peak O2 of 29.8. If you look at the normal values for age 36 to 45, anything under the 30 is considered pretty de-conditioned. We found a good de-conditioned group, that is, a good control group.
Let’s look at neurocognitive function. (See Slide 12) Look at the decline. Number one is baseline before exercise, number two is
30 minutes after exercise, and number three is 24 hours after. This is a computerized test measuring reaction time. This reaction time discernibly slows down in the chronic fatigue syndrome patients immediately after the exercise, after a big physical stressor, and it lingers the second day.
We know there’s a problem with exercise; we need to inspect it and be careful about it. We don’t understand it very well yet. Much more research is required, but once again you as individuals need to figure out what you can do to minimize your de-conditioning.
We have geriatric data. In one sense elderly people are similar to a chronic fatigue syndrome patient. They’re frail. They may have multi-system illness and cognitive dysfunction. They have trouble getting around. They have pain issues, and may be taking all kinds of medications. It’s an interesting parallel. If you feel like you’re 80, in some ways, you’re analogous to a geriatric person in decline.
But exercise really improves functioning in geriatric patients. It’s one of the best interventions for an elderly person. Exercise in Chronic Fatigue Syndromes in the right amounts does reduce fatigue and pain, mostly pain. It doesn’t eliminate it. And you can certainly make your fatigue and pain worse by exercising. I’m saying to use judgment. Paced exercise usually improves sleep, and helps control weight gain, but it needs to be completely adapted to you. I usually encourage people to do movement exercise lying down and seated and in very small increments, maybe 30 seconds to 5 minutes, depending on conditioning. You shouldn’t do very much without a rest, and you should start with ridiculously small amounts. The key is to do the activity regularly, but not daily. When you start, every other day is good. It doesn’t matter how low you start, as long as you’re doing something. You should do the amount that gives you no payback. Those would be my guidelines.
Think about flexibility and stretching exercises. Don’t just think exercise as in walks. Many techniques keep you limber and increase flexibility. Also, isolate your muscles and do little areas of training.Last of all, cardio and aerobic exercise are the least tolerated, particularly if it’s intense or prolonged. (See Slide 13)
- Dig Deeper! An ‘Exercise’ Program for ME/CFS
Conclusions: For the most part, we don’t know a lot about treatment specific for this illness. We have a long ways to go. You’re going to hear people’s opinions, mine included, which are only a reflection of the extent of my experience. Be careful. You decide what you need to do. Take information from people, and keep what makes sense and what is good for you.