How Can I Find Out If I Have Chronic Fatigue Syndrome?

If you have any the symptoms, and believe you have ME/CFS, talk to your doctor.

You may want to ask about their experience in treating the condition. You can also request a referral or choose to get a second opinion.

Anyone can get myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Experts aren’t exactly sure what causes it, but they believe certain people might be at greater risk.

If you think you may have it, or are concerned that you could be at risk, check with your doctor.

Age and Gender

If you’re a woman, you’re four times more likely to get ME/CFS than men. The condition is rare in children, but girls are more likely to develop it than boys.

The illness most often begins in adults aged 30-50. With teenagers, those between 13 and 15 seem to have it most often.

Genes

Chronic fatigue syndrome ME/CFS can run in families. It’s possible that some people inherit a risk for it from one of their parents, such as inheriting a defect in how a particular gene is built.

Probably more important than how genes are built is whether genes are turned on or off properly—differences in gene activity. In people with ME/CFS, within white blood cells and other parts of the body, there are differences in gene activity. For example, several studies have found that genes important in activating the immune system are more likely to be turned on in people with ME/CFS.

Most diseases are determined both by how genes are built and by things in the environment—infectious organisms, toxins, diet, stress, exercise patterns, etc.  This may well be true in ME/CFS, as well.

Other Conditions

People with chronic fatigue syndrome might be more likely to also have some of the following conditions:

• Fibromyalgia
• Irritable Bowel Syndrome (IBS)
• Multiple chemical sensitivities
• Temporomandibular disorders (TMD or TMJ)
• Interstitial cystitis, which causes pain in the bladder or pelvis
• Post-concussion syndrome
• Tension headache
• Chronic pelvic pain in women
• Chronic prostatitis in men

It’s possible that having one of these conditions could raise your risk for ME/CFS. Or it could be the other way around. So far, researchers don’t completely understand the relationship between chronic fatigue and these other health problems.

There’s no simple blood test or X-ray to diagnose chronic fatigue syndrome – also known as myalgic encephalomyelitis (ME/CFS). And many of the symptoms of the illness — deep tiredness, unrelieved by rest or sleep, feeling worse after physical or mental exertion, trouble concentrating, feeling worse after standing and remaining on one’s feet and other symptoms– are also seen in other conditions, too, making the diagnosis of ME/CFS more difficult.

If you think you might have chronic fatigue syndrome, make an appointment to see your doctor. Research shows that getting treatment sooner might bring better results.

Your doctor will ask for a lot of information about your health. Unfortunately, there is not yet a diagnostic test that is sufficiently accurate to be useful. Your doctor will need to rule out other conditions or causes before they can diagnose ME/CFS.

They might order other tests like blood and urine tests and scans. They will need the names of all the prescription and over-the-counter medicine you take, in case one of them is causing your symptoms. Also, tell your doctor if you take any supplements. Even so-called “natural” or “herbal” remedies can have side effects, and they might cause problems if used with other medications you’re taking.

Your doctor will give you a complete physical exam and ask you questions about your emotions. This will give them a better idea of what your needs are. It’s important to make sure you don’t have another disorder, which could be serious and could get better with treatment.

Your doctor will review your medical history and test results. They will check to see if you have several key symptoms, beginning with extreme tiredness, or fatigue, that doesn’t improve with bed rest for 6 months or longer.

Then, your doctor will check to see if you have three of these “core” symptoms of CFS:

• Reduced ability to do usual activities for six months or more because of fatigue
• Worsening of symptoms (difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness). after physical or mental exertion
• Trouble falling asleep or staying asleep, and awakening unrested

Along with the three symptoms, you must have one of these for a diagnosis of ME/CFS:

• Problems with thinking and memory
• Worsening of symptoms while standing or sitting upright; you might feel lightheaded, dizzy or weak, and you may have blurred vision or see spots.

It could take a while to get your diagnosis. It’s OK to ask how you can relieve your symptoms while you wait. Your doctor or health professional will schedule follow-up appointments to see how your treatment is working.

Although there’s no cure for chronic fatigue syndrome, there are over-the-counter and prescription medications that could ease your symptoms.

Also called myalgic encephalomyelitis (ME/CFS), the symptoms vary from one person to the next. While fatigue and muscle pain might be your worst, constantly awakening unrested and memory loss might be the biggest problems for someone else.

You and your doctor should try to tackle your toughest symptoms first — the ones that most interfere with your daily life.

Many people with ME/CFS have some kind of sleep disorder. Getting a good (or at least better) night’s sleep could help you feel less tired during the day.

First, your doctor will probably make sure you have good sleep habits. These include sticking to a regular bedtime and wake time and keeping your bedroom quiet, dark, and cool.

If this doesn’t improve your sleep, they might suggest an over-the-counter sleep aid, such as an over-the-counter antihistamine. While these can help you sleep soundly through the night, the downside is that the effects can last more than 8 hours. This means you could feel drowsy throughout the day, which is exactly what you’re trying to avoid. But not all sleep aids affect everyone in the same way. Talk to your doctor about which type would be best for you and how to take it.

If over-the-counter sleeping pills don’t do the trick, your doctor might try you on a prescription sleeping pill. The goal with these drugs is to get your sleep on track at the lowest possible dose in the shortest amount of time. You aren’t supposed to take them long term.

Some prescription sleep medications help you get to sleep, such as:

• Eszopiclone (Lunesta)
• Ramelteon (Rozerem)
• Zolpidem (Ambien)

Others that your doctor may prescribe help you stay asleep. For example:

• Trazodone (Desyrel)
• Antidepressants
• Benzodiazepines
• Muscle relaxants

All prescription sleep medications cause side effects. But some of them — daytime sleepiness, dizziness, unsteadiness, and memory lapse — are also symptoms of chronic fatigue syndrome. You and your doctor should weigh the pros and cons. The beneficial effects of many of these medicines wear off in a few weeks, so they are not useful for long-term treatment.

Some people are prescribed stimulants, like the ones used to treat ADHD. These medicines help ease fatigue and problems with memory and concentration. But they are tricky for chronic fatigue syndrome. They may give you energy and focus, which could cause you to get stuck in a cycle of overdoing it and then “crashing.” That would make your condition worse.

Since people with ME/CFS are very sensitive to any medicines that affect the brain, some people experience irritation and agitation taking stimulants, in conventional doses. They should be prescribed in low doses, by doctors who frequently prescribe them and know how to handle the side effects.

If you and your doctor decide to try a stimulant, there are a lot to choose from. They will help you pick the best one for you.

If ME/CFS gives you muscle and joint pain, your doctor might suggest over-the-counter pain relievers, such as ibuprofen, aspirin, or acetaminophen.

If these don’t help, your doctor might prescribe stronger pain medications or refer you to a pain specialist.

Some people with chronic fatigue syndrome feel dizzy or light-headed whenever they stand or sit upright. If that sounds like you, prescription drugs that might help. These include:

• Fludrocortisone (Florinef)
• Midodrine (ProAmatine)
• Propranolol XL (Inderal)

About half of people with chronic fatigue syndrome develop depression at some point. If you and your doctor decide that an antidepressant is right for you, your doctor will choose one that’s least likely to cause side effects that could worsen your chronic fatigue syndrome. They may also recommend that you go to a counselor for talk therapy.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) will change your life in many ways. It is a condition that can be hard to cope with. But you can adopt some strategies to make it easier.

You may go through bad phases, or relapses, followed by better ones (remission). Knowing to expect this pattern will help you understand how to manage your energy.

When you’re in a relapse, it might be hard to get through even simple morning routines, like a shower. Plan to allow extra time for tasks that are hard for you.

When you feel well again, you may want to try to do as much as you can while you’ve got the energy. Don’t try it. If you push yourself too hard, you may crash later. Repeating this cycle can drive you right back into a relapse.

You’ll need to learn to balance daily activities with rest, even when you’re in remission.

While staying fit is an important part of your overall health, exercise can be a tricky issue for those with ME/CFS.

Individualized programs are needed because any exercise can and does lead to exhaustion. Work with your doctor or a physical therapist to establish a baseline of exercise and increase it gradually. This can help you work through your limits without resulting in post exercise fatigue (post-exertional malaise or PEM).

If you reach a point where your exercise routine causes your symptoms to get worse, drop back down to the last level of exercise you could tolerate.

A physical therapist can modify your exercise plan. Do not overdo it. Pacing is important.

Watching what you eat can help you manage your symptoms. Avoid any foods or chemicals you are sensitive to.

A diet rich in polyunsaturated and monounsaturated fats, avoiding saturated fats and refined carbohydrates—like the Mediterranean Diet—is reported by many people with ME/CFS to be helpful.Eat several small meals throughout the day. For example, three meals and three snacks might help keep energy levels up.

Smaller meals might also help control nausea, which sometimes happens with chronic fatigue syndrome. To help control energy levels, it’s also a good idea to avoid these things:

• Sugar
• Sweeteners
• Alcohol
• Caffeine

Some people with ME/CFS have memory loss. Use a day-planner (a paper one or a smart phone app) to keep up with your schedule and remember the things you need to do.

Set reminders on your smartphone when it’s time to go somewhere or do something. Keep lists. Use “sticky notes.”

Puzzles, word games, and card games – also available on your smartphone – can keep your mind active and might help your memory improve.

You may find you feel better when you talk to other people with your condition. Your doctor can give you information about support groups in your area.

About half of those with ME/CFS develop depression at some point. Some symptoms of depression are similar to your condition, so it can be hard to tell the difference. “Red flags” for depression could include feelings of hopelessness, sadness, guilt or worthlessness, or thoughts of suicide and death.

If you think you are depressed, tell your doctor. Medications and talk therapy for depression can help with physical and emotional symptoms.