What Does MS Pain Feel Like?

Man having pain on his side

Multiple sclerosis (MS) can be very painful. In fact, for many of us with MS, it is difficult to believe that as recently as the 1980s, MS was considered a painless condition. I have been struggling to figure out how or why anyone could make that claim, as pain—in many different forms—has been one of the worst manifestations of my MS.

It is estimated that around 80 percent of people with MS experience MS-related pain at some point, and the National Multiple Sclerosis Society estimates that around 50 percent of us are plagued by chronic pain.

What Does Pain as a Symptom of Multiple Sclerosis Feel Like?

Pain in MS is complicated. It can fall into one (or more) of the following categories:

  • Neuropathic pain
  • Musculoskeletal or secondary pain
  • Paroxysmal pain

Neuropathic Pain

Neuropathic pain is the most common kind of pain in MS and is caused by the demyelination of the disease process itself. In our body, there are nerve endings called nociceptors that specifically detect painful stimuli. When demyelination occurs, nerve signals traveling along nerve cells may get misdirected to nearby nociceptors, which mistakenly communicate pain signals to the brain.

Allodynia: This is a particular type of sensory symptom that is in result to a stimulus, such as a person’s touch or even clothing or bed linens touching their skin. It is stimulus-dependent and only lasts as long as the stimulus is present. Allodynia is usually a short-term problem.

Tic Doloreux: Trigeminal neuralgia, often called tic doloureux (French for “painful twitch”), is perhaps the most intensely painful MS-related symptom.

It can be described most commonly as an intense, sharp pain occurring in the lower part of the face (often triggered by chewing, drinking or brushing one’s teeth). The most intense pain from this is short-lived (from a few seconds to up to two minutes), but can result in a more constant burning or aching.

MS Hug: Like many MS symptoms, the MS hug feels different for different people. It also feels different in the same people on different days or at different times of day. It can be: felt anywhere on the torso, from the waist to the shoulders; localized (in one small area) or encircle the body; intermittent or constant; felt as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure.

Dysesthesia: Usually this refers to a situation where a normal stimulus, such as a light touch, is perceived as painful or otherwise unpleasant, such as burning, itching or prickling.

Paresthesia: This feels like numbness, pins and needles, burning, severe itchiness, tingling, buzzing or vibrating sensations. Although often this is described as extremely annoying and unpleasant, occasionally the sensation can be so intense as to be painful.

Headaches: People with multiple sclerosis are much more prone to migraine-like or cluster headaches than people in the general population.

Optic Neuritis: Most people with optic neuritis (about 90 percent) experience pain when moving their eyes. This pain usually subsides after a couple of days, even if vision is still affected.

Musculoskeletal or Secondary Pain

Also called nociceptive pain, this is usually a result of the symptoms of MS, such as spasticity, weakness, immobility or problems walking, and not the disease process itself. Some examples of this are:

Joint Pain: Many people with MS feel pain in the joints of the hips and knees due to imbalance and change in gait.

Stiffness: A person with MS may experience stiffness in the legs, arms, and hips due to immobility.

Back Pain: Back pain can be the result of an unsteady gait, immobility, trying to adapt to the annoying feeling of the MS hug, sitting for extended periods in wheelchairs or any constant adjustment in movement or position as a result of MS symptoms.

Pain from Spasms: Flexor spasms cause a limb to contract, or bend, towards the body. This can make the limb feel like it has a constant cramp or dull ache.

Paroxysmal Pain

This refers to pain that has an acute (or sudden) onset, stays for just a couple of minutes, then fades rapidly or disappears completely. However, there may be residual or lingering pain after the episode. Painful paroxysmal symptoms include:

Tic Doloreux: See above.

Extensor Spasms: Extensor spasms are when a limb, usually a leg, stiffens and the person is unable to bend the joint. These cause the limb to jerk away from the body. Extensor spasms are usually not very painful, but can be forceful enough to make people fall out of their wheelchairs or beds.

L’Hermitte’s Sign: This is an electric-shock type of sensation that runs down the spine when the head is bent forward.

My Experience

Since my MS diagnosis, I have experienced:

  • Excruciating “hard-to-catch-my-breath” pain from the MS hug
  • Dull, achy pains in my legs from trying to adjust my gait to sensory ataxia
  • Pretty severe dysesthesia, as well as allodynia, including episodes where my clothes touching my legs felt like stinging insects
  • “Screaming-out-loud” (literally) pain when moving my eyes during a bout of optic neuritis

This list does not include what I guess could be called “tertiary” MS pain—because of MS, I have fallen, run into doors and bumped my hips on tables. I have cut myself badly and spilled hot coffee on myself when my hands were shaking.

I suppose it would be a stretch to include the pain from injections and infusions, confinement in MRI tubes, or side effects from Solu-Medrol in this list, but all of these things hurt, and I’m sure many of you could add to this list.

A Word from Verywell

You are not alone if you suffer from MS-related pain. The good news is that there are ways to treat it, usually through a combination of medication, lifestyle changes, and alternative therapies like yoga and meditation. Talk with your doctor if you have pain—you deserve relief.


Michael J Olek. Epidemiology, risk factors, and clinical features of multiple sclerosis in adults. UpToDate. January 2009.

National MS Society. Pain: The Basic Facts: Multiple Sclerosis. August 2016.

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