Overview of Pain as a Symptom of Multiple Sclerosis

Descriptions of Different Types of Pain and What They Feel Like

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% of people with MS experience MS-related pain at some point, and the National Multiple Sclerosis Society estimates that up to 50% 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. It can be explained as follows: Nociceptors are nerve endings 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. Read the full article: Trigeminal Neuralgia as a Symptom of Multiple Sclerosis.

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. Read the full articles: Multiple Sclerosis “Hug” or Girdle-Band Sensation and Tips for Dealing with the MS Hug.

Dysthesia: 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.

Parasthesia: 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. Read the full article: Numbness and Tingling as a Symptom of Multiple Sclerosis.

Headaches: People with multiple sclerosis are much more prone to migraine-like or cluster headaches than people in the general population. Read the full articles: Headaches as a Symptom of Multiple Sclerosis and Treating Headaches in Multiple Sclerosis.

Optic Neuritis: Most people with optic neuritis (about 90%) experience pain when moving their eyes. This pain usually subsides after a couple of days, even if vision is still affected. Read the full article: Optic Neuritis as a Symptom of Multiple Sclerosis.

Go to Page 2 to learn about musculoskeletal pain and paroxysmal pain associated with multiple sclerosis.

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. (Read the full article: Paroxysmal Symptoms of Multiple Sclerosis.) 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

We all have our good days and our bad ones. For me, the good days are the ones where I don’t have a symptom that was bad enough to be memorable a week later (as opposed to just those kind of yucky ones that we have learned to live with). I can say that some of my pain symptoms have seared themselves into my memory so well that I can remember them years later, including the specific circumstances of where I was and what was going on when I felt that degree of 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 dysthesia, 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.

Sources:

Alex D Rae-Grant, Nancy J Eckert, Sharon Bartz, and James F Reed. Sensory symptoms of multiple sclerosis: a hidden reservoir of morbidity. Multiple Sclerosis. Jun 1999; vol. 5: pp. 179-183.

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

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