Migraine and ME/CFS
Written by: Kylie Petrarca RN, BSN
Medically reviewed by: Dr. Alexander Mauskop
Edited by: Melissa Calise and Leigh Serth
What is ME/CFS and How is it Diagnosed?
Myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS) is a complex and debilitating multi-system chronic disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that worsen with activity.
According to the CDC and the ME/CFS Clinicians Coalition, a diagnosis of ME/CFS requires a thorough medical history, a physical exam, and the following core symptoms:
- “Substantial reduction or impairment in the ability to engage in pre-illness activity that persists for 6 months or more and is accompanied by fatigue. The fatigue is profound, not lifelong, not the result of ongoing exertion, and not alleviated by rest.
- Post-exertional malaise (PEM) in which physical or mental activities result in a typically delayed and prolonged exacerbation of symptoms and reduction in functioning (discussed further below).
- Unrefreshing sleep and a variety of sleep disturbances
Either cognitive impairment (often referred to as “brain fog” by patients) and/or orthostatic intolerance (the development of symptoms when upright are alleviated when lying down).”1
“Other ME/CFS symptoms include widespread pain; headaches; additional forms of sleep disturbance; visual disturbances; sensitivities to light, noise, chemicals, foods, and drugs; flu-like symptoms including sore throat and tender lymph nodes; susceptibility to infections; gastrointestinal problems; genitourinary issues; respiratory issues such as air hunger; and thermoregulatory issues.”1
Although the cause is unknown, ME/CFS is believed to be multifactorial involving previous infections, immune system changes, stress and metabolic problems.2
The Relationship and Commonalities Between ME/CFS and Migraine
It is believed central sensitization plays a key role in the connection between ME/CFS and migraine. Central sensitization is also known as hypersensitivity of the nervous system (brain and spinal cord) and causes allodynia and hyperalgesia. Allodynia occurs when someone experiences pain from something not normally painful. Some examples of allodynia are pain from touching cold water, brushing hair or moving the bed sheets across the skin. Hyperalgesia is when someone experiences an increased sensitivity to pain. Hyperalgesia can occur after injury to an area of the body or from opioid usage. Allodynia and hyperalgesia are common symptoms of migraine and ME/CFS which suggests central sensitization may be a key component underlying the physiology between both conditions.
Other commonalities between migraine and ME/CFS include:
- ME/CFS and migraine affect females more than males, although men can develop both diseases.
- Although both diseases have their own criteria for diagnosis, the diagnosis is made based on symptoms and elimination of other causes.
- Many people with ME/CFS or migraine are impacted by exercise, stress or sensitivity to sensory stimulation or changes in barometric pressure.
- They share many comorbidities such as fibromyalgia, irritable bowel syndrome, interstitial cystitis, temporomandibular joint disorder, chronic pelvic pain, depression, anxiety and more.
- Chronic pain, chronic migraine and ME/CFS are much more common in people with a history of abuse and PTSD.
A Notable Study Regarding the Relationship Between ME/CFS and Migraine
Georgetown University conducted a study to determine the relationship between migraine and ME/CFS.
In this study, one cohort of healthy control subjects and ME/CFS patients:
- completed a history and physical examination
- answered a series of questionnaires
- had an interview to diagnose migraine without aura, migraine with aura or tension type headache
Interviews found that of the 67 ME/CFS subjects 84% had migraine, 81% had tension headaches, compared to 5% and 45% of controls. Additionally, 67% were found to have both migraine and tension headache. Those with ME/CFS experienced higher rates of migraine without aura (60%) compared to migraine with aura (24%).
What Are the Recommended Pharmacological Treatments for ME/CFS?
Currently there are no FDA approved treatments for ME/CFS. Rather, treatment focuses on symptom relief. All medications should be taken with instructions from a physician.
- For pain relief, over the counter medications such as NSAIDS may be useful.
- Nerve pain medications such as gabapentin or pregabalin may also be prescribed.
- Blood pressure medications may help with orthostatic intolerance.
- Antidepressants such as tricyclics and SNRIs can be effective for pain in the absence of depression.
- Learning about energy management (also called pacing) may help someone with ME/CFS achieve the right balance of activity and rest.
- Cognitive Behavioral Therapy is a shared treatment modality. This type of therapy can help people recognize their thought patterns and help learn ways of coping with stress.
For those that live with both migraine and ME/CFS treatment by a headache specialist or a clinician knowledgeable about headache diseases is critical. Abortive therapies such as triptans, NSAIDS and acetaminophen are often prescribed first. Frequent migraine attacks may require preventive therapy such as propranolol, amitriptyline, topiramate, Botox, CGRP monoclonal antibodies, gepants or vitamins such as magnesium, CoQ10, riboflavin and others. Many migraine preventive therapies overlap with medications that are commonly prescribed for ME/CFS so it is important for your doctors to be aware of all of your diagnoses so the best treatments can be chosen.
It is important to note that NSAIDS and acetaminophen should not be taken more than 14 times per month. Reliance on these medications can contribute to medication adaptation headache, formerly known as medication overuse headache. This is a secondary type of headache that is present on more than 15 days per month for 3 months or greater, but unlike other forms of migraine headaches, these recurrent headaches occur routinely as a pain reliever wears off.
What Type of Doctor Should I See For ME/CFS and Migraine?
There is not a specialist for ME/CFS. A person may visit numerous specialists in areas such as neurology, rheumatology, and infectious disease to rule out other causes and manage symptoms. A clinician with a headache specialty is preferred for someone who believes they may also have migraine disease.
A Note to Patients and Providers
ME/CFS and migraine are two diseases with many similarities and shared symptoms. For providers, it is important to ask the diagnostic criteria of migraine when a patient states they are having frequent headaches. Many patients are not aware of the difference between frequent headaches and a migraine attack.
Examples of questions that might be helpful to ask your patients are:
- Do you have a headache that lasts 4-72 hours?
- Are your headaches moderate to severe in quality, pulsating, aggravated by physical activity and/or occur on one side?
- Do you experience nausea and/or vomiting, photophobia and/or phonophobia?
Answering yes to these questions after exclusion of other diseases likely presumes a diagnosis of migraine. Please refer to the ICDH-3 diagnostic criteria for more information. A provider that has a patient with ME/CFS and migraine should create an individualized treatment plan. Chronic pain can be difficult to treat and patients should be made aware that NSAIDS and acetaminophen should not be taken more than 14 days per month due to a risk of developing medication adaptation headache.
Patients should inform their providers about the symptoms they are experiencing and should be advised to create a journal to bring to their doctors appointment. Important information that should be included in the journal includes but is not limited to: symptoms for the day, foods eaten, physical and mental activity, time of day when the symptoms appeared, weather changes, medications taken and any other pertinent information. More research is needed for ME/CFS, therefore those with the condition are encouraged to enroll in clinical trials by routinely checking clinicaltrials.gov.
- For Providers: To learn more about diagnosing and treating ME/CFS, click here.
- For Patients and Caregivers: To learn more about living with and managing ME/CFS, click here.
- To find a headache specialist near you, click here.
- Learn about the End ME/CFS Project here.
- Learn more in the May Momentum Webinar Series by OMF here.
- Information for clinicians can be found here.
*The contents of this blog are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The writer does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.