What Does MS Pain Feel Like?

Man having pain on his side
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Multiple sclerosis (MS) can be very painful. So or many people with MS, it's difficult to believe that as recently as the 1980s, MS was considered a painless condition. In fact, it's estimated that around 80 percent of people with MS experience pain related to their disease at some point in their life.

Pain in MS is complicated. To better understand it, let's divide it into the following three 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 demyelination, which is the loss of protective sheath that covers nerve fibers. 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 occurs when a person feels pain in response to a stimulus that is normally not painful, such as a person’s touch or even clothing or bed linens touching skin. It is stimulus-dependent, so it only lasts as long as the stimulus is present (when the clothes are removed, the painful sensation goes away). The good news for people with MS is that allodynia is usually a short-term problem.

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

It is most commonly described 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 is short-lived (from a few seconds to up to two minutes), but a person can also experience a more chronic and persistent burning or aching in the face.

MS Hug: Like many MS symptoms, the MS hug feels different for different people. It may also feel different in the same person on different days or at different times of day. For example, some people describe the MS Hug as a sharp pain whereas others describe it as dull or more neuropathic in quality, like burning, tickling, or tingling. Still, others may note a crushing or constricting sensation.

In terms of location, the MS Hug can be felt anywhere on the torso, from the waist to the shoulders, and it may be localized (in one small area) or encircle the whole body. Also, the pain may come and go or it may be constant and debilitating.

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 commonly experience headaches and migraines.

Optic Neuritis: Most people with optic neuritis 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 a 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 With MS Pain

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 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, as you deserve relief.

Sources:

Foley PL et al. Prevalence and natural history of pain in adults with multiple sclerosis: systematic review and meta-analysis. Pain. 2013 May;154(5):632-42.

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

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