How Is Chronic Fatigue Syndrome Diagnosed
Updated: May 2
Chronic fatigue syndrome (CFS) is challenging to diagnose and determine what is causing the condition. Something important to remember is that even the experts don't know what is causing CFS. There are theories, and some doctors don't even want to deal with them.
Many medical professionals disagree about CFS. Some don't even think it's an actual illness. If you run into a doctor like this, you may want to find a new one.
Getting a diagnosis can be complicated, and if you suffer from CFS, appointments can be draining and daunting. Keep scrolling to discover tips on being prepared for a successful doctor's visit.
Sometimes doctors can find it challenging to treat people with CFS because, unfortunately, some people diagnose themselves with CFS and aren't willing to go through the tests to rule out everything else it could be. And even after all the tests, some doctors still don't want to diagnose CFS because they want to find the cause first.
Your primary care doctor will probably send you to a specialist, more than likely a rheumatologist. Visiting a rheumatologist is essential to rule out rheumatic diseases.
However, a rheumatologist is unlikely to be the best doctor to see for long-term treatment as they don't commonly specialize in CFS treatment. Instead, you probably want to be referred to a functional medicine doctor who treats these conditions.
CFS is diagnosed by exclusion. If you don't have any other conditions that can cause CFS, you have CFS from an unknown cause.
Conditions that your doctor will want to test you for to rule them out or treat them are:
MEDICATION SIDE EFFECTS
If you are taking medications, sometimes they can cause fatigue, which needs to be determined. Even over-the-counter meds, herbs, and supplements can cause problems. The doctor will note the meds you're on and research side effects.
If you have sleep apnea, you're more likely to be exhausted all day long even though you think you slept. It can often be one of the causes of chronic fatigue. Sleep apnea is a serious condition that needs to be assessed and treated. In addition, you'll most likely need to have a sleep study at a sleep center.
Narcolepsy is a disorder that causes people to fall asleep suddenly. Still, it's not like in comic books or TV shows. You can have this and not realize it. However, there are medications to help. They use a sleep latency test, a questionnaire, and observation via a sleep study.
You could have undiagnosed cancer that is causing your fatigue. So getting tests that show whether you have any cancer in your body can help tremendously. Many different tests will be conducted, from lumbar punctures imaging to blood and urine tests.
Many people who have Lyme disease also have CFS. Sometimes, the first indication you have Lyme disease is having CFS symptoms. This is checked via a blood test.
Lupus is a serious condition that can cause severe fatigue. Left untreated, Lupus can sometimes lead to organ damage. A rheumatologist will screen you for Lupus by reviewing your medical history, a physical examination, urine test, and various blood tests. Sometimes imaging tests are done as well as a biopsy.
Some CFS symptoms can be much like early Multiple Sclerosis (MS), so it's another condition that must be ruled out too. This is done via a lumbar puncture as well as an MRI. Usually, the MRI is first.
Many infections, such as streptococcal sore throat, can cause CFS symptoms to manifest instead of other apparent symptoms. It's good to rule this out too. This is checked via a blood test.
If you have a bacterial infection, that can also show signs of CFS. Sometimes, they may still use an antibiotic known to treat hard-to-find bacterial infections if one cannot be found.
This problem with your adrenal glands can manifest as CFS, anemia, low blood pressure, and skin discoloration. Therefore, a blood test that measures sodium, potassium, cortisol, and ACTH will be conducted.
You may not know you have a vitamin and mineral deficiency. Today, many people take vitamins and try to eat right. Still, digestive disorders and genetics can play into problems with the vitamins working. The test to determine deficiencies is a simple blood test.
If you have a thyroid issue, it can manifest as chronic fatigue. However, some cases can be cured with treatment. This test is usually a blood test, but an ultrasound of your thyroid may also be ordered.
Mitochondrial disorders are characterized by the body's inability to produce adequate energy to perform all its functions. This is conducted via an intramuscular biopsy from your upper thigh.
The possible problem is if you do have any of the above conditions, they may be incorrectly blamed for your CFS. CFS may stand on its own, but you may feel better once you have been treated for any underlying conditions you have.
Try to avoid becoming disillusioned if you have been treated (and cured) of all the other conditions, but are still exhausted. It may take years for a doctor to finally state that you have a diagnosis of CFS. They are also frustrated with this condition and may struggle with knowing how best to treat such a mysterious illness.
The best thing to do is to keep going. It's okay to keep trying different doctors; you can get the type of healthcare you want, need, and deserve.
It is frustrating, but try to understand that Doctors are trained to treat and cure illness actively. But unfortunately, some things are not yet curable, which can be hard to face.
VISITING THE DOCTOR
If you think you or a loved one has CFS, your best bet is first to find a doctor who truly understands the condition and knows how to talk to people with CFS. Next, look for a functional medicine doctor who treats CFS or ME.
TAKE SOMEONE WITH YOU
It may seem strange, but if you take someone to go in with you to the doctor, you're more likely to get better treatment. Also, if someone is there as an advocate to also answer the doctor's questions and vouch for your condition and the fact you used to be healthy, it will help you get better care.
WRITE DOWN YOUR QUESTIONS
Bring a list of questions. You may think that you'll remember before you go, but you may not. It can be intimidating, doctors may seem in a rush, and you might forget to ask the things you need to know. So take the questions and go through them; don't feel rushed through the appointment.
BE AS SPECIFIC AS POSSIBLE
When you describe your symptoms, say something specific instead of saying you're tired. For example, "I used to be able to hike for an hour a day, but now I can't even walk to the mailbox" is much more descriptive than "I can't do what I used to do." Also, try to focus on the symptom that is bothering you most.
When a doctor recommends specific tests, it's okay to ask more questions. For example, you want to know how this test will lead your doctor to treat your symptoms.
WRITE THINGS DOWN
You might not remember what your doctor says, so be sure to take notes so that you can refer to them later. If your doctor has a patient portal, ask them if they put their notes online for you to read later.
In searching for the right doctor, he hopes to find someone who understands enough to listen and explain things to you about your treatment and prognosis. Having said that, most doctors in today's healthcare world are rushed, so don't set your sights too high.
If you ever need help from the medical system or disability support, you need a doctor, so don't avoid seeking medical help. But, do go in with an understanding that the medical profession may not be able to do much for you other than create that paper trail you need.