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 sufferers have chronic pain.
What to do with pain as a symptom of multiple sclerosis?
Treating 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 is the most common type of pain in MS and is caused by demyelination that occurs in 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 can be misdirected to nearby nociceptors, which mistakenly transmit pain signals to the brain.
Allodynia: This is a particular type of sensory symptom, which occurs as a result of a stimulus that generates pain, such as the touch of a person or even when clothes or sheets touch the 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 Doloreux (French for “tic pain”), is perhaps the most painful symptom associated with MS.
It can be most often described as an intense, sharp pain that occurs in the lower part of the face (often brought on by chewing, drinking, or brushing teeth). It is the most intense pain and is short-lived (from a few seconds to two minutes), but can lead to a burning sensation or more constant pain.
Trigeminal neuralgia is one of the worst symptoms that people with multiple sclerosis experience . It is one of the types of pain described as “neurogenic pain” or “primary pain”, meaning that it is the direct result of the multiple sclerosis disease process, caused by demyelination and injury to specific nerves.
How does it feel?
Trigeminal neuralgia, often called tic Doloreux (French for “tic pain”), is perhaps the most painful symptom associated with MS. It can be described as:
occur in the lower part of the face (often caused by chewing, drinking, or brushing teeth)
intense, sharp pain
like an electric shock
The most intense pain is usually short-lived (from a few seconds to a maximum of two minutes), but can lead to a burning sensation or more constant pain.
However, it should be noted that it can also have the following characteristics:
- that extends into the ear, and is often mistaken for the pain of an ear infection.
- can be triggered by loud sounds.
- It is common?
- Trigeminal neuralgia is quite rare, with only 4% of people with MS experiencing this type of pain. However, people with MS are 400 times more likely than the general population to have an episode of trigeminal neuralgia.
What causes it?
Trigeminal neuralgia can be caused by chewing or touching . It is caused by injury to the trigeminal nerve, which is also called the fifth cranial nerve. (The 12 cranial nerves arise directly from the brain rather than the spinal cord.)
The trigeminal nerve controls the muscles necessary for chewing, and is responsible for increased facial sensitivity.
Trigeminal neuralgia can be so severe and distressing that it may require hospitalization and intravenous pain medication. It can interfere with a person’s intake of food and fluids and require these to be injected intravenously. Some people may require surgery for this symptom.
Due to the intensity of this symptom, anxiety and fear of its recurrence can cause unnecessary suffering and interfere with daily life, even when the symptom is not present.
Tends to be episodic: Each “crisis” with trigeminal neuralgia usually lasts a couple of weeks. However, this symptom tends to recur and can occur even every 2 months. Unfortunately, as time goes on, the time between episodes gets shorter.
Can be kept out of root canals: Considering the location and nature of the pain associated with trigeminal neuralgia, it is often mistaken for dental pain. This could lead to unnecessary (and irreversible) procedures such as tooth extractions dental, root canals and even procedures to change the position of the jaw. Be sure to consult your neurologist who is experiencing this type of pain, before undergoing any type of drastic dental work.
Comes on early: Trigeminal neuralgia tends to be one of the first symptoms of multiple sclerosis for those who experience it.
Multiple sclerosis pain can be felt in strange places. One of the strangest pain-related symptoms is the MS “hug” or girdle-band sensation . Up to 75% of people with MS experience this pain as a symptom, but statistics on the ‘MS hug’ are hard to come by.
“EM hug” is a type of pain that can come and go over the course of several weeks, ranging from uncomfortable pressure to extreme pain. Sometimes it affects the chest or waist. Sometimes it is very localized to one side, and at other times it can wrap around the entire torso. It tends to be one of the most annoying and painful symptoms MS patients experience.
What causes the EM hug?
It is caused by injury to the spinal cord and is technically classified as a neuropathic pain called ” paresthesia’s “, which refers to any abnormal sensation. The sensation itself, the result of the small muscles located between each of the ribs (intercostal muscles) going into spasm. These muscles have the task of holding our nerves together, as well as keeping them flexible and aiding in movement, such as forced expiration.
How does it feel?
Like many MS symptoms, the “MS hug” feels different in different people – it also feels different in the same people on different days or at different times of the day. Can be:
- Only above the waist or on the chest ; It can rarely be felt in the shoulders and neck.
It focuses on a small area (usually on the side or back) or spreads around the torso.
It’s even worse if you’re tired or stressed.
- Present in “waves” lasting seconds, minutes, or hours , or may be constant for longer periods of time.
- Described as a sharp pain, dull ache, burning pain, tingling, tingling, crushing or constricting sensation, or intense pressure.
- Some people experience shortness of breath or pain when breathing, so severe that it is often perceived as a heart attack or panic attack.
How to find relief
First of all, any chest pain has to be taken seriously, as it may indicate that immediate medical attention is needed. So, you really have to assess whether what you are experiencing is a result of your multiple sclerosis or not.
Second, sit or lie down to make yourself comfortable. Breathe and relax; tense muscles are not going to help the situation.
Dysthymias: This generally refers to a situation in which a normal stimulus, such as a light touch, is perceived as painful or otherwise unpleasant, such as burning, itching, or stinging. It is a disorder of sensitivity, especially tactile, which can correspond to a decrease, an exaggeration or the arousal of an unpleasant sensation by a normal stimulus.
Paresthesia: This is felt as a numbness, tingling, burning, severe itching, buzzing, or vibrating sensation . Although this is often described as extremely uncomfortable and unpleasant, on occasion the sensation can be so intense as to be painful.
Numbness and tingling are two of the most common symptoms of multiple sclerosis. Virtually everyone with multiple sclerosis (MS) sufferers has experienced paresthesia, the special form of numbness and tingling that accompanies MS.
How does it feel?
More commonly referred to as ‘numbness’ or ‘tingling’, this is one of the MS symptoms that most people seek help for, as it is so common and clearly neurological in origin. It feels like:
- severe itching
- Tingling, buzzing, vibratory sensations
- Is it common in MS?
- Sensory symptoms are the most common symptom of MS, with up to 90% of people with MS reporting some form of numbness and tingling.
What causes it?
Paresthesia’s in MS are caused by injuries to the brain or spinal cord.
Often this numbness and tingling occurs as part of a pseudo exacerbation, a temporary increase in symptoms caused by an external factor. This is usually a result of MS-related heat intolerance or as a result of fatigue in MS. If this is the case, the sensation should go away or greatly decrease in intensity once you are fresh and/or rested.
It can occur anywhere in the body, and present the following problems:
- In the feet, causing trouble walking due to pain along with sensory ataxia.
- In the hands, causing problems with writing, with difficulty in fine motor movements.
- The genitals, causing sexual dysfunction
- The tongue, causing speech problems such as dysarthria, or failure to detect the temperature of food.
- Usual pattern: The sensation usually appears in the hands and/or feet, then moves progressively closer to the core, down to the arms and legs, although it can appear anywhere.
It is estimated that 42% of relapses result in the residual symptom, paresthesia.
Benign? Paresthesia’s generally do not cause significant disability, and do not indicate that the disease is worsening and are not related to the degree of disability. In fact, people suffering from pain or sensory symptoms were found to perform better on tests of movement and coordination.
Unpredictable: Paresthesia can be transient (lasting only a short time) or last for a long time. The numbness and tingling can vary in intensity and can come on at different times of the day. It can feel like waves of tingling or constant stabbing pain. In other words, everyone has their own special form of paresthesia.
May interfere with sleep: Paresthesias tend to be worse at night. Make sure the temperature in your bedroom is cool. If the numbness and tingling significantly disturbs your sleep, you may need to talk to your doctor about specific treatment for paresthesia.
Headaches: People with multiple sclerosis are much more prone to migraine or cluster headaches than the general population.
Everyone has a headache from time to time; However, people with multiple sclerosis (MS) are much more prone to migraine or cluster-like headaches than the general population. Up to 58 percent of people with MS experience recurrent or chronic headaches, compared to 16.5 percent of the general population. Of course, almost everyone (more than 90 percent of people, with MS or not) has occasional headaches.
Types of headaches related to MS
There are three types of headache that are directly associated with multiple sclerosis:
Migraines are more common in people with relapsing-remitting MS. They last between 4 and 12 hours and tend to be:
Preceded by an aura (blurred or distorted vision signaling that a headache is about to start) or prodromal symptoms (including fatigue, hunger, or anxiety)
throbbing on one or both sides of the head
Accompanied by sensitivity to light or sound
Usually accompanied by nausea, vomiting, or loss of appetite
Followed by residual pain and discomfort
Some people find that a long nap – 5 or more hours – after a migraine helps relieve some residual symptoms.
Cluster headaches start as a strong burning or stinging sensation on one side of the nose or deep in one eye. They tend to last only 15 minutes or up to 3 hours.
- Characteristically, the pain:
- Start with spikes quickly.
- They feel like electric shocks or “explosions” in or behind the eye.
- It occurs only on one side of the face.
- Occur without warning (unlike many migraines)
- Tends to recur at the same time every day (often shortly after falling asleep), usually over a period of several weeks
- May cause irritation of the eyes, nose, or drooping of the eyelid.
It resolves completely until the next headache.
Tension headaches are the most common in the general population. Its duration can be from 30 minutes to the whole day, and:
They rarely cause severe pain, more often moderate or mild.
It feels like a constant sensation of pain or pressure, similar to a band over the eyebrows or around the head.
It goes little by little.
It can occur at any part of the day, but usually occurs in the later part of the day.
What causes headaches in people with MS?
There are many things that can cause headaches in people with MS, including:
Lesions: A study looking at 277 MS patients suggests an association between the number of lesions in the midbrain and migraine headaches. Interestingly, cluster headaches in people with MS have also been shown to be related to injury to this area of the brain, where the trigeminal nerve converges.
Optic neuritis: Headaches are also common during episodes of optic neuritis. These headaches are usually only on one side and then worsen when the eyes move.
Depression: A very common symptom in MS, it has also been associated with headaches. Depression and migraine headaches are both linked to low serotonin levels.
Medication side effects: Interferon-based disease-modifying therapies – Rebif, Betaseron, and Avonex – can cause headaches.
How are those headaches?
Headaches can be extremely disabling. Migraines can be very painful, light and sound sensitivity can lead people to retreat to a quiet, dark space for hours. Even when the migraine has passed, people are often left with residual symptoms that include fatigue, irritability, trouble concentrating, and dizziness.
Cluster headaches are often described by people as the worst pain they could ever imagine, akin to “burning ice on one eye.” The pain of cluster headaches causes many people to throw themselves on the floor, scream and cry.
Optic neuritis: Most people with optic neuritis experience pain (about 90%) when they move their eyes. This pain usually subsides after a couple of days, although vision is still affected.
By some estimates, up to 80 percent of people with MS experience vision-related symptoms, with optic neuritis being the most common. In fact, twenty percent of people with MS experience optic neuritis as their first symptom.
This condition translates simply as “inflammation of the optic nerve.” The optic nerve connects the eye to the brain, and MS can damage this connecting structure, resulting in optic neuritis.
If I have optic neuritis, will I go blind?
During an attack of optic neuritis, vision loss in the affected eye(s) can be quite substantial, even complete blindness is not uncommon. Fortunately, most people recover fairly well and regain their vision, but it may take several months for a complete recovery. However, it may happen that there is some permanent residual loss of clarity or reduction of color perception in the affected eye.
What are the symptoms of optic neuritis?
- Most people with optic neuritis experience pain (about 90%) when they move their eyes. This pain usually goes away after a couple of days, although vision is still affected.
- Blurred vision, reduced light, flickering or flashes of light when the eyes move (called photopsia), loss of color vision (dyschromatopsia), a “blank space” in the middle of the eye, called a scotoma.
- Rapid onset (usually), with maximum vision loss occurring within one to two weeks.
It is more common to affect one eye at a time. In only about 10 percent of cases do symptoms occur in both eyes.
- After an episode of optic neuritis, it is common to experience something called Uthoff’s Phenomenon, which is vision loss that is aggravated when the body temperature rises, such as with a fever or in hot weather.
- After experiencing optic neuritis, people may notice that their vision is better on some days than others, or that they can see more clearly in the morning than they do at night.
What causes optic neuritis in MS?
Optic neuritis in MS is caused by inflammatory demyelination of the optic nerve. In other words, the optic nerve becomes inflamed due to damage to its myelin sheath.
How is it diagnosed?
An ophthalmologic exam is necessary for the diagnosis of optic neuritis, and a gadolinium-enhanced MRI of the brain of the optic nerve may also be used. If you have already been diagnosed with multiple sclerosis, your doctor may go straight to treatment after your exam, if you are found to have optic neuritis.
What is the treatment of optic neuritis?
High-dose corticosteroids, intravenous solution, have been shown to be effective in reducing the duration of optic neuritis, but probably have no effect on long-term vision. More than 90% of people begin to recover on their own within a month without steroid treatment. Oral steroids appear to have little benefit or even adverse effects and should be avoided.
Statistically, optic neuritis will recur in 33 percent of people, either returning in the other eye or affecting the same eye again.