For a long time pain was not thought to be a prominent symptom in ME/CFS, but muscle pain, joint pain and headache are common in ME/CFS patients. It is likely that the four major symptoms of ME/CFS – post-exertional malaise, unrefreshing sleep, concentration problems and pain – are intertwined, each affecting the other and potentially exacerbating the disease. This is why physicians who understand ME/CFS try to treat pain and sleep disturbances with medications in an attempt to relieve the severity of the overall ME/CFS symptom complex.

Since September is Pain Awareness Month, we wanted to bring you some resources about managing the pain associated with ME/CFS.

Benjamin Natelson, MD, Director, Pain & Fatigue Study Center and Professor of Neurology at Albert Einstein College of Medicine, offers some pharmacological advice based on his clinical experience with CFS patients. When treating a CFS patient’s pain, Natelson progresses through four stages of medication, choosing drugs appropriate to each patient’s presentation. He’s also involved in a clinical trial to see if Savella improves fatigue and cognitive complaints in people with CFS who also report having body-wide pain.

Read more on Dr. Natelson’s work in a prior post

Stage 1 – Basics

Nonsteroidal anti-inflammatory drugs (NSAIDs): Includes ibuprofen at maximal doses or Celebrex (200 mg twice daily). “It’s a reasonable thing to try,” says Natelson. “The problem with NSAIDs is that they usually don’t work.”

Tricyclic antidepressants (TCAs): Elavil (amitriptyline) can be effective, particularly in patients who have trouble sleeping. Use substantially lower doses (10 mg or 25 mg) than prescribed for depression. But Natelson also shares, “If patients have drug coverage, I often bypass this step in favor of Cymbalta or Savella because of the side effects of TCAs.”

Cymbalta (duloxetine) and Savella (milnacipran): These drugs have been FDA approved for widespread pain (Cymbalta was also approved for depression). “I use these instead of TCAs when the patient has drug coverage because they produce fewer side effects. Cymbalta is especially useful when mood disorder is also present. For Cymbalta, start with 30 mg per day and then, several days later, increase to 60 mg,” counsels Natelson. For Savella, Dr Natelson recommends that you ask your doctor for a drug starter pack which gradually builds up to the full dose of 50 mg twice a day in order to bypass side effects.

Stage 2 – Anti-epileptics

Lyrica (pregabalin) is the only drug in this class that has been FDA-approved for widespread pain. To get around possible side effects, Dr Natelson recommends starting with a low dose of 50 mg once a day and increasing it by 50 mg every four to five days until the patient is taking it three times a day. Then, if the pain continues, he will gradually increase the dosage to reach a total of 300 mg per day.

Neurontin (gabapentin) is in the same family of drugs as Lyrica but has not received FDA approval. Nonetheless, Natelson uses it off-label to treat pain –particularly for the patient who does not have drug coverage, because the FDA-approved drugs are often quite expensive. Dr Natelson recommends patients “Start low and go slow” with 100 mg at bedtime for four to five days, increasing to 100 mg four times per day and working to 300 mg four times per day. A dose of 1,200 mg per day is the first threshold where pain relief may be noticed. The dose can ultimately be increased to anywhere from 2,400 mg to three grams daily if needed.

If a single drug in this class this is not effective, a second drug that uses a different pathway to combat pain can be added. Dr Natelson uses either Trileptal (oxcarpazepine) or Lamictal (lamotrigine). With Trileptal, he starts with 150 mg before sleep and then gradually builds the dose up to a total of 1200 mg with half given twice a day. With Lamotrigine, he starts at 25 mg per day at bedtime, then increasing dosage to 25 mg three times per day, and then increasing again to 100 mg three times per day. Starting with a low dose as in these examples allows the patient time to report side effects, if any, and for the doctor to stop that drug to decide upon an alternative.

Topamax: This anti-epileptic and anti-migraine medication is another choice, and its use can have a secondary effect of reducing weight in patients with weight problems. Natelson explains that he usually tries at least two of the above antiseizure medications before moving to the next stage.

Stage 3 – Other Measures

Plaquenil: Used as an antimalarial agent during World War II, this drug can raise pain thresholds. But it carries a number of difficult side effects, and it can take as long as six months to determine its effectiveness. Dr Natelson reserves its use for patients who have a positive anti-nuclear antibody test and who did not report improvement with the previous medications.

Tizanidine: Start with 2 mg per day, and progress to 2 mg twice per day, then 4 mg twice per day.

Tramadol: Use up to 50 mg four times daily.

Lidocaine: Patches may help localized pain.

Stage 4 – Opiates

Natelson advises staying away from short-acting opiates other than Tramadol. He will use Methadone, which is inexpensive, or MS Contin (not OxyContin, which has “street concerns” due to illegal use). Prior to prescribing opiates, Natelson does a drug screening with saliva or urine. If patients are positive for a controlled substance but did not report taking it to him, Dr Natelson will not move ahead with an opiate prescription. But for patients whose drug screen testing is negative, he believes that a trial of this class of medication is important. “For some patients,” Natelson notes, “the careful use of opiates will definitely improve quality of life.”

Above all, Dr. Natelson stresses that more research into pain relief is needed for patients with CFS. Toward that end, Natelson and his colleagues are conducting an NIH-funded trial of Savella to determine if it alleviates fatigue and cognitive complaints in people with CFS who also report having body-wide pain. Patients can call 212-844-6665 for more information.