Chronic Fatigue Syndrome–Diagnosis and Prognosis

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How Is It Diagnosed?

According to the CDC (Centers for Disease Control) as of 2013, more than 1 million people in the United States have chronic fatigue syndrome, 0.35% of the population at that time. An obvious question is, for a disorder that occurs only 12% as often as fibromyalgia, what possible ways to diagnose it could there be? In short, none. There are currently no diagnostic tests that can confirm the presence of CFS in a patient. Nevertheless, there are criteria based on the commonly observed symptoms. A doctor must perform blood and urine tests that can exclude or confirm other illnesses as the cause and still weigh your range of symptoms against the other difficultly (yes, that is a word!) diagnosed conditions like fibromyalgia in case you have one of those instead. He or she should also rule out mental disorders, existing or previously experienced illnesses, and medication side effects.

The CDC and most doctors currently use a case definition produced by a group of CFS experts in 1994 to diagnose the condition:

  • “The individual has severe chronic fatigue for 6 or more consecutive months that is not due to ongoing exertion or other medical conditions associated with fatigue (these other conditions need to be ruled out by a doctor after diagnostic tests have been conducted)
  • The fatigue significantly interferes with daily activities and work
  • The individual concurrently has four or more of the following symptoms:
    • post-exertion malaise lasting more than 24 hours
    • unrefreshing sleep
    • significant impairment of short-term memory or concentration
    • muscle pain
    • pain in the joints without swelling or redness
    • headaches of a new type, pattern, or severity
    • tender lymph nodes in the neck or armpit
    • a sore throat that is frequent or recurring

These symptoms persisted or recurred during 6 or more consecutive months of illness and they cannot have first appeared before the fatigue.” (http://www.cdc.gov/cfs/case-definition/index.html)

Any other common symptoms associated with CFS should not be used in its diagnosis, though they likely confirm its presence afterwards.

What’s the Prognosis?

As with fibromyalgia, there is no cure, but unlike FMS, neither are there any FDA-approved medications to treat it as a specific disorder. The frequent changes that occur in the nature of a patient’s CFS and cycles of remission and relapse also make it a difficult disorder to treat. But, as with any incurable illness, the symptoms can be managed with some success, depending on the patient and the severity and variability of his or her symptoms.

Medications can be prescribed to treat sleep problems and lack of energy, pain, depression, and gastrointestinal problems while regulating sleep patterns, managing and reducing stress, physical therapy and exercise, and therapy for emotional problems can also help. CFS sufferers have also found that alternative therapies such as massage therapy, acupuncture, hydrotherapy, and yoga seem to help relieve symptoms as well. All in all, there is not much difference in treatment between chronic fatigue syndrome and fibromyalgia syndrome.

 

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Chronic Fatigue Syndrome–How It Feels

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So we’ve learned about the symptoms of chronic fatigue syndrome. But how do these symptoms feel to those affected by them? How are they experienced? This post will attempt to convey the nature of some the symptoms of CFS in more descriptive language, hopefully giving non-sufferers a better sense of what CFS victims endure.

Fatigue–the dictionary definition of fatigue is “weariness from bodily or mental exertion (noun)” and “to exhaust the strength of (verb)”; the definition of exhaustion is “extreme weakness or fatigue; the total consumption of something (in this case, your physical, mental, and emotional energies) (noun)”. Can you imagine having all of your energy just gone, no reserves? Most healthy people only come close to this after an unusually stressful day or a day full of more physical activity or exertion than they’re used to. And yet, CFS is worse. The fatigue is extreme, severe, bone-deep, and intense. It is often without cause and is not improved with rest or sleep. It is like a heavy and relentless weight holding you down (physical) or a thick fog permeating your body and senses, muffling everything (mental; emotional). Such fatigue makes even the most basic daily activities, such as personal hygiene or eating, a challenge.

Post-Exertional Malaise (PEM)–the dictionary definition of malaise is ” a condition of general bodily weakness; a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort”, and lethargy is “the quality or state of being listless and unenergetic, dull, sluggish”; we all experience the tiredness that comes after exerting ourselves, but PEM causes you to continue feeling tired and lethargic for longer than you should, based on whatever activity it was that you did, and to even feel increasing exhaustion even though the activity has been stopped; this experience lasts for at least 24 hours after the activity; you just can’t shake the exhaustion; it sticks to you and settles in rather than dissipating as it should
Pain–the muscle and joint pain as well as headaches experienced by CFS sufferers are very similar to that endured by FMS patients, though on a lesser scale than with FMS while still more than the average person; for more on how such pain feels, see the description of FMS pain in the post “Fibromyalgia Syndrome–How It Feels”; for CFS, joint pain seems to be most prominent
Unrefreshing Sleep and Sleep Difficulties–this aspect is fairly straightforward to describe; unrefreshing sleep is when you still feel as tired after sleeping as you did before going to sleep; you do not feel rested or refreshed and it’s as if you didn’t sleep at all; other sleep problems CFS sufferers encounter are difficulty falling asleep and/or staying asleep and inordinate sleepiness during the day
Cognitive Difficulties (Brain Fog)–the short-term memory, concentration, and complex thinking problems that CFS patients deal with is just like the brain fog (fibro fog) felt by those with FMS, though sometimes more severe in the case of CFS; for a description of brain fog, see the post “Fibromyalgia Syndrome–How It Feels”
Flu-like Symptoms–if you’ve had the flu, than you know what this feels like; I’ve never had the flu, but I know its usual symptoms and any, or even all, of them can afflict a person with CFS; these include achy joints and muscles, fatigue, sore throat, runny nose, headaches, chills, and fever; all of these might occur, yet no flu virus will be found in your body; I find this to be a very odd and unusual symptom (if there is such a thing for sufferers of chronic and uncommon illnesses) and if not for this symptom, I would be convinced that I have CFS rather than FMS, but who knows…
I hope that this post helps healthy persons to better grasp the challenges faced by those with CFS and understand the tangible and real effect it has on a person’s life and abilities. I also hope that those who suffer from chronic fatigue are helped to fight the self-deprecating feelings of uselessness and inadequacy that this symptom often causes.
If you are a chronic fatigue syndrome sufferer, please feel free to share your experiences with and thoughts on the disorder below!

Chronic Fatigue Syndrome–Definition and Symptoms

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What Is It?

Chronic fatigue syndrome (CFS)–aka chronic fatigue and immune dysfunction syndrome (CFIDS) aka myalgic encephalomyelitis (ME)–is an illness characterized by intense, deep, and persistent fatigue and exhaustion. Definite immune system abnormalities have been found in the majority of CFS patients, hence the alternate names (“myalgic” = of or relating to myalgia, which is muscle pain; “encephalomyelitis = inflammation of the brain and spinal cord, usually due to viral infection).

About 1 million, less than 1%, of Americans have CFS, and among them, more women are affected than men. The cause is unknown–though current thoughts trend toward infection, immune disorder, or neurological disorder–and there is no cure. CFS produces some similar symptoms to fibromyalgia syndrome (FMS) and the two often occur together, but there are differences.

What Are the Symptoms?

A syndrome is a set of symptoms that occur together, indicating the existence of a particular disease. Therefore, chronic fatigue syndrome most commonly presents the following set of symptoms:

  • as stated above, overwhelming, persistent fatigue
  • post-exertional malaise–disproportionate exhaustion lasting at least a day after mental or physical exercise
  • pain–muscle pain; joint pain without swelling or redness; headaches
  • unrefreshing sleep; sleep difficulties
  • impaired memory and concentration; brain fog, cognitive difficulties
  • frequent or recurring sore throats
  • tender and/or enlarged lymph nodes in the neck and armpits
  • other flu-like symptoms

Additional symptoms (and disorders) that often occur along with these are:

  • gastrointestinal problems
  • allergies and sensitivities to foods, odors, chemicals, medications
  • depression, mood swings, irritability
  • visual disturbances (blurry sight, light sensitivity, eye pain)
  • dizziness, balance problems, fainting; difficulty maintaining an upright posture
  • chills, night sweats
  • gynecological problems, including PMS
  • chronic inflammation of the bladder wall (interstitial cystitis), chronic pelvic pain
  • temporomandibular joint disorder (TMJ)

I think what really sets CFS apart from FMS are the flu-like symptoms that often precipitate and accompany the illness. If not for a lack of these flu-like symptoms, I would believe that I have chronic fatigue syndrome rather than fibro. But who knows. I could even have both, which is called comorbidity–the simultaneous presence of 2 (or more) chronic medical conditions in 1 person. Many fibro and CFS sufferers can attest to having comorbidity.

Are you a CFS sufferer? Do you experience comorbidity? How do you cope?

Right Shoulder Pain FINALLY Diagnosed!!!

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At last I know what’s wrong with my shoulder and what I should do about it! I’ve had acute, sharp, and sore pain in my right shoulder since April 2014 without any inciting injury. Insurance screw-ups stalled my ability to get in to see an orthopedic surgeon but finally I did. After getting my MRI done (which my doctor wouldn’t order for some reason unless I saw the ortho doc first…), I now know that a bone spur is poking into my rotator cuff tendon causing tendinitis (or is it tendinosis?) and bursitis, which further causes problems by narrowing the space between muscle and bone that the tendon has to go through.

The orthopedist recommends surgery. He says it’ll be a quick and easy surgery with a couple of incisions where he’ll clean out inflamed tissue and remove the bone spur. He even said I’d be able to drive with that arm the next day or so, though I will have to do a little physical therapy. Nonetheless, I am a bit alarmed because I have NEVER had surgery (I don’t really count my wisdom teeth removal) nor broken any bones or had any kind of major injury. Chronic pain has been my thing for years but now I’m faced with tangible problems and fixes. It’s weird and I’m not sure how I’m reacting to the whole thing. Glad I got diagnosed though and that a real and known problem was found.

I’ve also made progress on my knee problem. I’ve started physical therapy and am doing home exercises to strengthen the muscles on the left side of my knee so that my knee cap moves over the center rather than the right side, where it puts more pressure on the cartilage and bone. It’s only been 2 weeks, but already I feel a difference in knee pain so I’m grateful for that.

The really scary thing is, I might (and probably already am, judging by how it feels) develop the same problem in my left shoulder. Not to mention I think I might have the same issue in my left knee as in my right knee. I just keep on breaking down. Just like a well-used car, I fix one problem, and another issue springs up! Eventually you would give up on the car, but we chronic pain sufferers DO NOT have that option.

In the words of Commander Peter Quincy Taggert in Galaxy Quest:  “Never give up. Never surrender.” And I do not intend to ever stop fighting the pain and its effect on my life! I will persevere and continue working towards better management of my illness and improved quality of life.

 

Forced Hiatus

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I have been forced to go on hiatus (or hibernation, really) for the past couple of weeks because of a flare-up of fatigue. It’s times like these when I wonder whether or not I have Chronic Fatigue Syndrome, whether instead of FMS or along with it. I often consider this muscle-withering, spirit-sapping, energy-eradicating, and brain-muffling fatigue to be much worse and more difficult to deal with than the pain. At least with the pain, I have a chance to work through it or maybe only experience a flare in one body part. But with fatigue, my whole body is encased in and weighed down by exhaustion. And depression and lowered self-worth soon follow. They say that misery loves company. Well, so does fatigue! I finally broke down last night and cried a bit. But my husband was there and comforted me and reassured me how much he appreciates and values me and everything I do for him/us. Nonetheless, I still feel fairly useless…

But, I know better than to become mired down in such negative feelings because not only do they not make the situation any better but also emotional stress leads to increased pain and fatigue, which I DEFINITELY do not want to happen. So, my husband and I have resolved to have a frank and proactive discussion about adjustments we can make to make weekdays easier for the both of us. And hopefully, my appointment with the rheumatologist, which should be set up soon, will give me some options for treating my fatigue.

I also have trouble with this particular symptom because when it’s this bad, I can barely get out of bed to manage my basic needs. The cycle of negative thoughts and self-image is perpetuated by this lack of self-care and further feeds the depression and fatigue and inactivity.

How can I fix this or help myself do better during these times? Well, I have noticed recently that sometimes when I’m fatigued but still attempt to do something I need to get done, I don’t feel much more tired afterwards as I always expect to. Part of what prevents me from getting out of bed is the fear that activity will only make me feel more tired and worsen my muscle aches and soreness. But in such instances as the one mentioned before, I know this not to be true, at least most of the time. So, I’m determined to train myself not to have that negative mentality and to make myself accomplish one good, useful thing a day. And when my “fatigue-self” protests, I can tell it that I have all the rest of the day, hours, to “recuperate” from the activity and so it shouldn’t complain!!

Plus, accomplishing one activity usually spurs an emotional boost, which can give one the motivation to get something else done. But as long as you only focus on one thing at a time, you aren’t overwhelmed and bogged down by the stress and pressure of all the myriad chores, errands, and activities that you need to do.

I think that the first step to overcoming fatigue that you can do on your own, is re-train your thinking and stop negative thoughts in their tracks. Give yourself credit for even the littlest things you have been able to accomplish and focus on one thing at a time. Doing this helps me to not feel so overwhelmed and I’ve just gotten away from it lately. Also, do things that help take your mind off of your inactivity–read an exciting book, watch an uplifting show or movie, do a hobby (like crocheting) that does not require the use of your entire body–and help keep you encouraged and positive. Prayer and spiritual reflection comfort and strengthen me while reading dramatic sci-fi novels, watching British mystery shows, and crocheting help to distract me. What successful steps have you taken to stem the effects of fatigue?

Fibromyalgia Syndrome–Treatment Options

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How Can the Symptoms Be Managed?

Without a cure for FMS, one might wonder if there’s any hope at all for fibromyalgia sufferers. The answer? YES, there is! Though there is not yet a cure, many options are available for successfully treating or managing the symptoms of FMS. The overly goal, though, can be characterized as avoiding your triggers, whether they are symptoms, like sensitivity to touch, or activities, like repetitive lifting, that will flare-up your fibro pain. Here is an overview (more detailed posts are under the section “Treatment Options”):

Medication

There are currently 3 medications that are approved by the United States Food and Drug Administration for treating fibromyalgia pain:  Lyrica (pregabalin) in 2007, Cymbalta (duloxetine) in 2008, and Savella (milnacipran) in 2009. Exactly how these medications work in the body is not known (sounds counterintuitive doesn’t it; how can you make something but not know how it works??), but the following are scientists’ most educated guesses on the subject.

Lyrica is an anti-seizure medication that works by blocking signals to the brain, which in the case of FMS are pain signals sent to the brain by overactive nerves in the muscles. Similar to Lyrica is Neurontin (gabapentin), which works in the same way.

Cymbalta and Savella are both antidepressants in the class of serotonin and norepinephrine reuptake inhibitors (SNRIs). Serotonin is a neurotransmitter and hormone that your body produces for use in mood regulation and pain perception and norepinephrine is a neurotransmitter and hormone that impacts your brain’s fight-or-flight response, pain perception, moods and emotions, and cognition. SNRIs work to prevent the reuptake–the re-absorption of secreted neurotransmitters–of serotonin and norepinephrine, thereby increasing their amounts and allowing them to continue helping to improve depression, anxiety, and even the brain’s reception of pain. Similar to Cymbalta and Savella are Elavil (amitriptyline), Flexeril (cyclobenzaprine) (also a muscle relaxant), and Effexor (venlafaxine).

Other drug options are opioid analgesics like Ultram (Tramadol) that can help with pain , dopamine–a neurotransmitter and hormone similar to serotonin and norepinephrine but also affecting cognition, motivation, sleep, and memory– enhancers that can help with pain, and muscle relaxers like Flexeril that ease muscle tension and spasms. Even non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen as well as topical muscle pain relievers like lidocaine, capsaicin, menthol, or camphor (often used to treat pain from arthritis) can also ease FMS pain and pain-increasing symptoms. Sleeping medications like Desyrel (trazodone) or Ambien (zolpidem) and serotonin boosters and alerting medications like Zoloft (sertraline) and Nuvigil (armodafinil) may also be prescribed for help with sleep disorders and difficulties and fatigue.

I currently take the max dose of Lyrica for pain and it has helped a lot with my overall, non-acute pain. I am also trying Pristiq (desvenlafaxine), an SNRI class anti-depressant, to help with fatigue and depression, but it’s not working. My fatigue has actually gotten worse. I’m thinking about asking my doctor for an alerting medication like Nuvigil or Provigil instead. As needed, I will take Flexeril for muscle spasms and muscle pain caused by tension or overworking.

Physical Therapy (aka Physiotherapy) and Exercise

Physical therapy (PT) is mainly the use of manual therapy and exercise to increase mobility, strength, flexibility, endurance, and balance, relieve pain, and reduce joint swelling, especially after an injury. Manual therapies used in physical therapy include manipulation (applying various levels of pressure to the joints with the hands or a specialized device), mobilization (slowly applying measured movements to the bones and joints to move them back where they are supposed to be), and massage (applying various levels of pressure to the soft tissues). Additional techniques used in physical therapy are water therapy, electrical stimulation, the application of heat or cold possibly with water (hydrotherapy), and ultrasound. At-home exercises such as stretching, walking, and core strengthening are usually prescribed by physical therapists to supplement their treatment.

Since FMS is a nerve pain disorder and not an actual “physical” disorder (in the sense that nothing is physically wrong or injured), how can physical therapy and exercise be beneficial to FMS sufferers? Well, physical therapy can improve your muscle flexibility, relax muscle tension, and teach you how to use your muscles more efficiently, thereby minimizing the tension, stiffness, and guarding that result from and further cause FMS pain. Also, as with other chronic pain illnesses such as arthritis, regular movement is known to help with fibromyalgia pain whereas inactivity perpetuates it. These benefits will also help prevent future physical injuries which would trigger more pain.

Interestingly, some of our FMS tender points can also be myofascial trigger points (tight, hypersensitive nodules found in the muscle and connective tissue throughout it that are painful and refer pain to other areas) and PT can provide myofascial release and other trigger-point therapies (injections, stretching with heat, and topical medication).

Soon, I’ll be starting physical therapy for the cartilage loss in my right knee and then, hopefully, for my right shoulder, whatever is wrong with it.

Complementary and Alternative Therapies

Complementary therapies are those used in conjunction with conventional medicine–medication, surgery, and some manual therapies–while alternative therapy is used in place of conventional medicine. Complementary and alternative medicine (CAM) can be very beneficial to fibromyalgia sufferers and includes:

  • chiropractic therapy–manipulation and adjustment of the body’s musculoskeletal structures, such as the spinal column, to correct structural alignment and relieve nerve pressure and muscle tension;
  • osteopathic manipulative treatment (OMT) or osteopathic manipulative medicine (OMM)–a gentler and more ranged form of chiropractic;
  • massage therapy, particularly acupressure and deep tissue–manipulation of the body’s soft tissues, muscles, tendons, and ligaments to release tension and pressure as well as reduce stress and anxiety;
  • acupuncture–the insertion of very thin needles into the skin and underlying tissues at specific points on the body to increase blood flow and the natural production of the neurotransmitters that decrease pain;
  • movement therapies (in other words, exercise)–physical activities such as yoga, tai chi, aerobics (especially water aerobics in a warm pool aka water therapy/hydrotherapy), and dance-based exercises to promote a wide range of physical benefits like increased flexibility, strength, stamina, balance, and circulation and reduced pain and stress; a caution:  several of these CAM therapies have religious roots and spiritual overtones so if you are uncomfortable with this, please do more research into the therapy that interests you and the motives and beliefs of the specific practitioners that employ it;
  • relaxation techniques–techniques such as breathing exercises, progressive muscle relaxation, guided imagery, biofeedback, and aromatherapy that can help you relax emotionally and physically and reduce and manage stress; and
  • improving or adjusting diet, taking nutritional supplements, and taking herbal remedies which can relieve IBS reactions, improve sleep, improve fatigue, and even reduce pain; a caution–nutritional supplements and herbs can have reactions with prescription medications so consult with your doctor and/or pharmacist before adding anything new.

As you know, I currently see a chiropractic (though I think she also used osteopathic techniques) because when certain things like my hip or my vertebrae come out of alignment, I definitely notice resulting increases in pain. She also helps a bit with muscle tightness and knots, but I think a massage therapist might be better for that. Once I start physical therapy and get some of their recommendations, I intend to ease into an exercise regimen. My chiropractic has given me two nutritional supplements:  MyoCalm PM to relax my muscles before bedtime, thereby making it easier to get comfortable and go to sleep, and FibroPlex to generally help with fibro pain an symptoms (I think…). Additionally, to help me fall asleep and stay asleep, I take melatonin, valerian, and a homeopathic oral spray with flower essences. This combo certainly aids in falling asleep but for some reason even on the best of nights I wake up at least twice during the night. For fatigue, I’ve tried a ginseng complex but it doesn’t seem to do anything. I also drink Tension Tamer tea for sleep and Fast Lane tea for energy from Celestial Seasonings Teas of the Hain Celestial Group in Colorado. Fast Lane, with 10 mg of caffeine more than a regular cup of coffee, is the only thing I’ve tried that has helped me wake up and get up in the morning (unless my fatigue is flaring up, like it is now). The last things I occasionally use are the topical pain relievers Sombra Warm Therapy (with camphor and menthol), Thera-gesic (with menthol and methyl salicylate), and stick-on heat patches as front line defenses for when I’m starting to have a lot of shoulder, back, or neck pain.

There are so many options available out there, but what works for one person does not always work the same way for someone else, so ALWAYS DO YOUR RESEARCH and consult with your doctor(s) before adding a new therapy to your treatment regimen. And always start slow and ease yourself into it. What treatments work for your fibromyalgia or chronic pain?

Fibromyalgia Syndrome–Diagnosis and Prognosis

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How Is It Diagnosed?

According to the American College of Rheumatology, only 2-4% of people are diagnosed with fibromyalgia, so you may wonder, how does such an uncommon disorder get diagnosed? The answer? Not easily. Fibromyalgia shares many symptoms in common with other chronic pain disorders and diseases, such as chronic fatigue syndrome, hypothyroidism, rheumatoid arthritis, lupus, among others. Therefore, it can be misdiagnosed without thorough testing and investigation. Many of the similar conditions can be tested for in the blood, whereas fibromyalgia cannot, so one of the first steps might be to rule out other causes for your pain with blood tests such as a complete blood count (CBC) panel or a thyroid function test.

To specifically “test” for fibromyalgia, a doctor would see if your pain is widespread (in all 4 quadrants of your body), what kind of pain you feel, whether you experience significant fatigue, and whether you’ve had cognitive difficulties. He or she should also perform a physical examination, taking the time to press firmly on the various 18 tender points set forth by the American College of Rheumatology, pictured above. It is generally said that if 11 or more of the points are indeed tender, without causing radiating pain as an indication of trigger points rather than tender points, then the patient had fibromyalgia syndrome, but if you experience less than this, it does not mean that you do not have FMS. Finally, whether or not your symptoms or pain have been consistently present for at least 3 months will need to be determined. These have been the guidelines for diagnosing FMS since 1990.

In 2010, preliminary changes to the diagnostic criteria for FMS were published by the College. These new criteria would use two scores, a Widespread Pain Index (WPI), which is determined by how many out of 19 areas of your body have pain, and a Symptom Severity (SS) scale, measured by your answers to a 42-question symptom survey. This would effectively eliminate the use of tender points in diagnosis, and likely make it possible for more people who do not have FMS to be diagnosed with it anyway since it is quite vague and generalized.

What’s the Prognosis?

There is no cure for FMS, but there are many medications, treatments, and therapies that can help with the pain and other symptoms. Unfortunately, since the cause is undetermined, one can only treat the symptoms rather than the problem itself, but that’s better than nothing. Those diagnosed with fibro have the option of taking pain medication or antidepressants, doing physical therapy, or trying alternative therapies such as chiropractic or massage, among other treatments.