Part II: Treating Progression in MS

Disease-Modifying Treatment Approaches Targeting Inflammation

The greatest success in MS has been in treating relapsing forms of MS. Relapsing forms of MS largely involve inflammation and nearly all of the approved disease-modifying therapies (DMTs) are approved to treat these types of MS. These DMTs have been shown to:

• Reduce the number and severity of relapses
• Reduce the development of new areas of inflammation as seen on MRI
• Show some evidence of delaying disease progression and/or disability
• Some may prevent or delay a second clinical attack (relapse) for individuals with clinically isolated syndrome (CIS); CIS refers to individuals who do not meet the criteria to be diagnosed with MS, but have experienced symptoms

The largest unmet need in MS is treatment of the progressive course of the disease. Developing new therapies for progressive MS has been difficult, as the underlying driver in this form of MS remains unclear. Researchers know that inflammation is a part of the disease, but progressive MS is believed to be largely driven by the degeneration of neurons in the brain and spinal cord, which is a complex process. Long-term goals in the development of treatments include turning off the inflammation; however, the major target for preventing progression is to slow or halt neurodegeneration.

Traditional MS clinical trials have been performed for decades with various therapies to treat relapsing forms of MS, and these are typically conducted over a two-year period. The disease process in progressive forms of MS occurs more slowly, over the course of several years, so two-year studies often have trouble adequately measuring progression or determining the effectiveness of a potential treatment.

MS researchers are currently looking at measures of brain volume on MRI and ocular coherence tomography (an imaging technique that provides three-dimensional pictures of the nerves around the eye) as quantifiable measures of progression in MS. These are separate from the changes in symptoms reported by people with MS or neurologic exam findings and disability scores according to EDSS. Currently, the focus of research has switched to early-phase studies using neuroprotective agents to determine if these may alter the course of progression in MS.

Disease-Modifying Therapy to Delay Progression in MS

Disease-modifying therapies (DMTs) that target the progressive course of the disease are desperately needed. In recent years, with the success and inception of multiple new therapies for relapsing MS, the focus is finally shifting to progressive MS. Fortunately, in 2016, successful results of the ORATORIO phase III clinical trial in PPMS studying ocrelizumab, a monoclonal antibody that depletes mature B cells, showed positive results in delaying progression in PPMS, while demonstrating superiority to Rebif® (interferon beta-1a). Ocrelizumab is infused once on day one, a second time on day 14, and then one infusion every six months.

In people with PPMS, ocrelizumab was shown to delay progression of clinical disability (worsening function) at 12 weeks in 24 percent of patients. Given the brand name Ocrevus®, this therapy was approved by the United States Food and Drug Administration (FDA) in March 2017. This therapy also demonstrated significant benefit in two phase III clinical trials in RRMS, OPERA I and II. A prior study, the OLYMPUS trial in PPMS, using a similar agent, Rituxan® (rituximab), did not show benefit in overall prevention of disease progression, but did show benefit in a subset of individuals who were younger than 50 and with active gadolinium-enhancing lesions on MRI (these are lesions with active inflammation). Rituxan has been used off-label in both progressive and relapsing forms of MS, which is a challenge to obtain for many people with MS due to insurance denials. This is related to the lack of an FDA-approved indication for MS at this time.

Prior to the Ocrevus studies, clinical trials in progressive MS with other experimental treatments have been disappointing. Among others, the following agents have been tested in PPMS in phase III clinical trials without benefit in the overall study population: Copaxone® (glatiramer acetate), Rituxan, IV immunoglobulin, Marinol® (dronabinol), and Gilenya® (fingolimod). Additional studies evaluating pulse methylprednisolone IV and other immunosuppressants, including methotrexate, did not delay progression of the disease.

In SPMS, a recent study using an oral therapy that is similar to Gilenya, called siponimod, was shown to have beneficial effects in a phase II clinical trial. As of the time of this publication, siponimod is not FDA-approved for MS. Previously, Novantrone® (mitoxantrone), originally approved in 2000, was FDA-approved in SPMS; however, it has largely fallen out of use due to serious risks of secondary acute myeloid leukemia (AML) and cardiotoxicity (congestive heart failure). Some of the additional agents that have been evaluated in clinical trials and failed to show any benefit in SPMS include: Avonex® (interferon beta-1a), Rebif® (interferon beta-1a), Betaseron® (interferon beta-1b), IV immunoglobulin, cyclophosphamide, myelin basic protein 8298, and linomide

Currently, many individuals with progressive MS continue on DMTs used to treat relapsing forms of MS. Although not approved by the FDA for this type of MS, these individuals have a perceived benefit from a DMT for MS – even in the secondary-progressive phase of the disease. Their treating neurologists believe that the DMTs approved for RRMS reduce inflammation in all MS, including progressive MS. As always, people with progressive MS are encouraged to discuss treatment options with their neurologist.

Individuals with MS and their families need to understand that current disease-modifying therapies for MS do not restore function, but are used in an effort to slow progression of the disease. Remyelinating and restorative therapies are currently being studied.

Rehabilitation through Physical, Occupational, and Speech Therapy

The medical community embraces the “it takes a village” comprehensive approach to MS care. As such, people with MS can often greatly benefit from working closely with neuro-physical therapists (neuro-PTs), occupational therapists (OTs), and speech pathologists.

Generally speaking, neuro-PTs can help improve one’s ability to walk and remain mobile. PTs often help people with gait, transfers, balance, and coordination, along with stretching and strengthening the muscles of ambulation. Specialized PTs can also assist with more specialized issues, such as those related to the pelvic floor, fitting individuals for custom wheelchairs, and addressing other specific needs requiring individualized attention.

OTs are experts at improving independence with activities of daily living, such as brushing teeth, using the bathroom, and putting on socks. They are experienced in optimizing hand dexterity and function. OTs can also assist with retraining people with MS to drive cars safely with adaptive equipment.

In addition to helping with any speech and communication difficulties one may be experiencing, speech pathologists provide expert assistance to optimize safe swallowing. Speech pathologists also help with improving/maintaining aspects of cognition and memory via “cognitive rehabilitation” training.

Symptom Management

A wide variety of symptoms can occur with progressive forms of MS. A great deal of information on these symptoms and their treatments may be found on MSAA’s website at mymsaa.org/ms-information/symptoms/. To help categorize the effects of MS, MSAA has grouped the commonly experienced symptoms as follows:

Common Physical Symptoms of MS

• balance problems
• bladder dysfunction
• bowel problems
• muscle spasticity (stiffness)
• sexual dysfunction
• speech difficulties
• swallowing disorders
• tremor
• walking and mobility issues

Common Emotional, Mental, and Psychological Symptoms of MS

• anxiety
• cognitive changes
• depression
• Pseudobulbar Affect (PBA)

Common “Invisible” Symptoms of MS

• dizziness/vertigo
• fatigue
• numbness
• pain
• sleep issues
• Uhthoff’s syndrome (the temporary appearance of symptoms resulting from heat stress)
• visual disorders
• weakness

A few of the more impactful symptoms in progressive MS have been highlighted in the sections to follow. However, as noted earlier, details on all of the common MS symptoms, along with treatment options, are available on MSAA’s website at mymsaa.org/ms-information/symptoms/.

Bladder Problems

Bladder dysfunction in MS happens when nerve signals to the bladder and urinary sphincter (the muscles surrounding the opening to the bladder) are blocked or delayed because of MS lesions in the brain and/or spinal cord.

There are basically two major muscles involved in emptying the bladder: the detrusor muscle and the sphincter muscle. As a result of MS, the detrusor muscle in the wall of the bladder involuntarily contracts, increasing the pressure in the bladder and decreasing the volume of urine the bladder can hold. This causes symptoms of going frequently, leaking urine, urgency, or interfering with a good night’s sleep.

In other words, the inability to store or hold urine in the bladder occurs when the bladder is unable to retain urine when it accumulates. Instead of expanding when urine collects, the bladder involuntarily contracts, which can make people feel as if they have an urgent need to go to the bathroom much of the time – even when there isn’t much urine in the bladder.

The flow of urine is controlled by the sphincter in the bladder, the muscle which relaxes to open and contracts to close. An “inability to empty” means that even though a person senses that his or her bladder is full, the nerve impulse telling the muscle to open is interrupted and never reaches the urinary sphincter, and the sphincter muscle closes before all the urine is emptied from the bladder. When emptying the bladder completely, one might feel the urge to void often but have hesitancy when trying to void. People may also wake up at night often to void since the bladder is not completely empty during the day. Bladder infections or urinary tract infections (UTIs) can occur if urine, which is a waste product, sits in the bladder too long.

Leakage of urine can occur in some cases when the sphincter remains at least partially open, resulting in involuntary leaks. Sometimes the detrusor muscle and the sphincter muscle do not work in coordination and a person with MS can experience many bladder symptoms.

Individuals with MS can experience a variety of bladder issues:

• urinary frequency, which is the need to urinate often; urgency, referring to the sudden urge to urinate; or hesitancy, where an individual has trouble initiating urination
• urinary retention, referring to difficulty emptying the bladder
• urinary incontinence, which is the inability to or difficulty with holding urine
• recurrent urinary tract infections (UTIs)

Treatment options include:

• pelvic floor therapy, using exercises to strengthen pelvic muscles
• using scheduled times to urinate
• avoiding caffeine
• staying well-hydrated until a few hours prior to bedtime
• percutaneous tibial nerve stimulation (PTMS) for overactive bladder, giving electrical stimulation to the ankle, which stimulates sacral nerves that control bladder function
• using medications to treat bladder problems; these include:
  • Ditropan® and Ditropan XL® (oxybutynin)
  • Detrol® and Detrol LA® (tolterodine tartrate)
  • Vesicare® (solifenacin)
  • Enablex® (darifenacin)
  • Levsinex® (hyoscyamine)
  • Flomax® (tamsulosin) and other antihistamines
  • Hytrin® (terazosin); Minipress® (prazosin)
  • DDAVP (desmopressin)
  • Botulinum Toxin (Botox®)
  • Myrbetriq® (mirabegron)
  • Sanctura® (trospium chloride)
  • Tofranil™ (imipramine hydrochloride)
  • Toviaz® (fesoterodine fumarate)
• intermittent catheterization, where a tube is inserted into the urethra to manually empty the bladder
• InterStim, which is a surgically placed device to help treat overactive bladder, urinary retention, and some forms of bowel dysfunction
• surgical interventions, such as a suprapubic, indwelling catheter

Bladder symptoms can be treated once symptoms are discussed openly with a medical professional and proper assessment is completed. Sharing concerns with a healthcare provider is important. Individuals may need a referral to a urologist to treat bladder symptoms.

Muscle Spasticity

Spasticity is a term used to describe muscle stiffness and muscle spasms that are common in MS and other diseases affecting the brain and spinal cord. Stretching one’s limbs, walking, or even bathing can all become difficult. Spasticity can also be incredibly painful.

Spasticity can occur in any limb, but it is the most common in the legs. It can be exaggerated by cold temperatures, infection, fever, recent surgery, or any other harmful stimuli to the body. It may increase with movement or a change in position.

If spasticity is untreated, serious medical problems can occur. These can include pressure sores (ulcers) on the body where pressure occurs. The most common locations for pressure sores are the buttock area, sacral area (at the tip of the spine), on the heels, and other areas that may experience pressure for an extended period of time when sitting or lying still. Untreated spasticity can also lead to contracture, known as frozen joints.

Some degree of spasticity is beneficial, as it can stiffen weak muscles and enable one to stand, walk, or transfer better. Treatment of spasticity focuses on a balance between loosening muscles for comfort, and preventing complications by avoiding complete resolution of spasticity. This balance is needed in order to allow an individual to continue to engage in activities of daily living (ADLs).

Treatments for spasticity are individualized, and may be grouped according to the severity of the symptoms.

For mild to moderate spasticity:

• stretching program
• physical and occupational therapy
• medications used include:
  • Baclofen (formerly available as Lioresal®)
  • Gablofen® (baclofen injection)
  • Zanaflex® tablets and Zanaflex Capsules® (tizanidine hydrochloride)
  • Valium® (diazepam)
  • Klonopin® (clonazepam)
  • Dantrium® (dantrolene sodium)
  • Neurontin® (gabapentin)
  • Tegretol® (carbamazepine)
  • Keppra® (levetiracetam)
  • Requip® (ropinirole)
• botulinum toxin injections for focal (localized) areas of spasticity; these are best for isolated muscles that are stiff; not for widespread spasticity
• Medical marijuana (cannabis) has been used experimentally in treating spasticity and is available by prescription in some states

Therapies for moderate to severe spasticity (the first four listed are also used for mild to moderate spasticity, noted above)

• stretching program
• physical and occupational therapy
• oral muscle relaxers
• botulinum toxin
• intrathecal baclofen; this medication works to relax muscles, and when infused directly into the spinal fluid via an intrathecal pump, it relaxes muscles more effectively and at significantly lower doses, versus the oral form of baclofen (these small doses also avoid the generalized side effects of drowsiness and memory difficulties, which can occur with higher doses of the medication)
• phenol injection; although rarely prescribed, this nerve-blocking agent is sometimes used for severe cases of spasticity
• surgical tendon release; although rarely prescribed, this surgical procedure cuts a tight tendon to relieve pressure

Walking and Mobility Issues

Everyone should have the goal of achieving, and then maintaining, the highest possible level of independent function. This includes safe mobility – both at home and in the community. Ideally, anyone with MS should receive a baseline evaluation from a physical therapist (PT) experienced in MS care. An evaluation can spotlight many subtle symptoms that can be addressed before they worsen into significant issues. These symptoms might include:

• Fatigue/decreased endurance
• Foot drop/drag (especially later in the day)
• Weakness in leg(s) and/or trunk
• Deconditioning
• Mild spasticity (increased tone, which gets worse with fatigue)
• Muscle tightness from inactivity
• Compensatory movement patterns (such as “hiking” or lifting of the hip; leaning to clear the weak leg when walking; or using arms to help stand up)
• Problems with balance (which may include falls, near-falls, and/or difficulty on stairs)
• Impaired vision or sensation
• “Wobbly” walking

All of these problems will affect independent walking and can be targeted in a corrective program. If an individual may benefit from some type of an aid, a physical therapist may have a variety of ambulation aids available to try to see which items work the best.

Understandably, many individuals with MS are initially quite reluctant to accept a walking aid and often delay going to therapy. Individuals with MS should try to view ambulation aids as tools that have the potential to normalize their walking pattern. By doing so, this can result in less fatigue, improved posture and balance, less pain, more endurance, less risk of falling and the correct training of the walking muscles. Dramatic improvement may be seen in an individual’s gait and endurance by initially using these aids for training, and later, just as needed for issues such as distance, energy conservation, and worsening symptoms during MS flare-ups.

Many different ambulation tools are on the market, so a professional should be involved in assessing and prescribing those best suited to each person’s needs. These include items such as a foot-drop brace, folding cane, lightweight forearm crutches, rolling walkers, and Functional Electrical Stimulation (a wireless technology only appropriate for some). Many wheeled-mobility options are also available for those with limited or no ambulation abilities.

Currently, Ampyra® (dalfampridine) is the only medication approved by the FDA specifically to improve walking speed in individuals with MS. It is an oral, timed-release medication developed to improve the conduction of impulses between damaged nerves of the central nervous system (CNS).

Emotional Issues

Anxiety and depression are more common in MS than in the general population. In fact, more than half of all people with MS will experience these symptoms at some point during their lives. Emotional health is a critical component to successfully managing progressive MS. This includes, when appropriate, the judicious use of antidepressant medications, referrals to trained counselors, and participation in support groups. Additionally, staying physically, intellectually, and socially active all help to promote good emotional health.

► Anxiety

Anxiety is perhaps the most taxing and under-treated psychological effect of living with MS. It does not appear to result from the physical disease process of MS, but rather stems from the realities of living with MS. Individuals living with MS know that it’s the unpredictability, and therefore the difficulty, in planning and preparing for the effects of MS on life, that drives one’s anxiety. Anxiety disorders are estimated to affect 43 percent of those with MS, and are also more common among women.

Anxiety represents a symbolic, perceived threat to one’s sense of self, which may be defined as how someone sees him or herself and the unique qualities that he or she possesses. As MS progresses, different challenges and new uncertainties must be faced. This can result in more adjustments, more losses, and more anxiety.

Examples of the physiological symptoms of anxiety include (among others): trembling, increased heart rate or heart palpitations, dry mouth, nausea, tingling in fingers or toes, lightheadedness, insomnia, and more. Examples of the psychological symptoms of anxiety include (among others): chronic unhappiness, frequent worry or guilt, fearfulness, indecisiveness, feelings of inadequacy, repeating certain behaviors or ruminative thoughts (pondering over something repeatedly), excessive concern with physical health, and negative thinking about the future.

Lowering anxiety requires many steps that include learning stress-reduction techniques. Learning to control reactions and quiet oneself can allow someone to feel anxiety when needed to problem-solve, but not to become so overwhelmed by it. Increasing the areas of where you can have control and prioritizing activities can also help. Developing a more spiritual, entrusting attitude has also been found to be helpful to many.

Psychotherapy, either psychodynamic or cognitive/behavioral, includes stress-reduction techniques such as guided imagery, biofeedback (a technique that teaches individuals how to control their body’s responses), and meditation. These can be very helpful to reduce anxiety. Medication management is also available. However, options should be discussed with one’s doctor, as some medications for depression may worsen anxiety, and some medications may also have the potential for addiction.

► Depression

In regard to depression, researchers believe that the high rate of major depressive disorder, dysthymia (a chronic type of depression), and bipolar disorder with MS, is a result of the disease process or the etiology of the disease itself. In other words, the damage to the nerves within certain areas of the brain is believed to increase the chance of greater depressive reactions. Depressive reactions are not to be confused with sadness or fatigue.

In all types of depression, activities of daily living can feel overwhelming and people tend to believe that their feelings will never change. Several symptoms of depression are common ones of MS, such as fatigue, trouble sleeping, cognitive difficulties – especially being unable to focus and concentrate – and feeling slowed down. These similarities can, however, be distinguished by a mental-health specialist who has experience with chronic disease, such as a social worker, psychologist, or psychiatrist, who is specialized or certified in a related area.

For family members, understanding the physical symptoms of MS is often easier than understanding the emotional ones. When depressed, becoming passive, exhibiting a negative mood, and experiencing low motivation are common; some may even withdraw from others. This may irritate family members, causing them to be critical or expecting the person to do one thing to snap out of his or her mood. They may feel at a loss encountering the individual’s helpless mood.

If withdrawn, family members may withdraw too, as they may not fully understand what is needed. A loss of sexual interest or libido is also common and this too can have a negative impact on couples. Depression is not overcome by the power of positive thinking. Family members should avoid giving advice. Instead, a referral to a skilled mental-health professional who can work with both the individual and/or family is needed, as well as an evaluation with a psychiatrist to see if specific antidepressant medication would be helpful.

Since individuals with depression experience greater fatigue, withdrawing to try to preserve energy is natural. This can result in not taking one’s medication or forgetting to do so, not having the energy to exercise, and less energy to put into relationships and work. A good plan is to focus on a few tasks to accomplish each day to conserve energy, instead of trying to cover all of them. Taking the steps needed to engage social supports and resources is far more difficult when depressed, so having these supports and resources in place beforehand is another vital strategy.

Participating in psychological therapy and taking a medication for depression appear to be the most effective means of treating depression. Treating depression with a medication or a drug alone does not address the underlying causes. This is because communicating and sharing experiences with others and with a mental-health professional has been shown to improve one’s ability to cope and to continue to find meaning in one’s life.

Many types of psychotherapies may be effective in treating depressive disorders. These include cognitive behavioral therapy (CBT), psychotherapy, problem-focused supportive-group therapy, and telephone-administered CBT for individuals with MS who experience significant levels of depression.

For treatment with medications, consulting a psychiatrist, if possible, may be of greater benefit. Many managed-care and insurance plans have psychiatrists available for medication management. A therapist can also aid in this referral process. Consulting a psychiatrist is important because general practitioners or family physicians may not be as familiar with the range of antidepressant medications available, versus someone who specializes in this field.

Some of the commonly prescribed medications for depression include:

Selective Serotonin Reuptake Inhibitors (SSRI):

• Paxil® (paroxetine)
• Prozac® (fluoxetine)
• Zoloft® (sertraline)
• Lexapro® (escitalopram)
• Celexa® (citalopram)

Selective Serotonin and Norepinephrine Reuptake Inhibitors (SRNI):

• Cymbalta® (duloxetine hydrochloride)
• Serzone® (nefazodone)
• Remeron® (mirtazapine)

Norepinephrine–Dopamine Reuptake Inhibitor (NDRI):

• Wellbutrin® (bupropion)

Tricyclic Antidepressants:

• Elavil® (amitriptyline)
• Pamelor® (nortriptyline)
• Tofranil® (imipramine)

Individuals should note that steroid use is known to induce depressive reactions or exacerbate bipolar reactions in individuals. Additional medications, such as those used to treat urinary incontinence or spasticity, can also affect mood. If taking one or more of these medications, individuals are advised to check with their physician to see if these in any way are lowering mood.

For some, an antidepressant, such as certain SSRIs that work on depressive and anxious symptoms, is prescribed. Examples include Celexa® (citalopram) or Lexapro® (escitalopram). Additionally, Effexor® (venlafaxine) or Cymbalta® (duloxetine hydrochloride) may also be considered. Specific anti-anxiety medications like Valium® (diazepam) may work on an as-needed basis, but these tend to have short half-lives. This means that they work only for short periods of time or to aid sleep, but they are not designed for long-term use.

Cognitive Issues

Traditionally, cognitive issues were not believed to be a symptom of MS. In more recent years, researchers and physicians have come to find that roughly half of the MS population will experience some type of change in their cognitive abilities during the course of their disease.

The most commonly affected cognitive processes in MS are speed-of-information processing, memory, and executive functions (decision making). Other domains of cognition can also be affected depending on where lesions are located. However, rarely are all domains of cognition impacted by MS. Changes in cognitive abilities typically are clinically considered mild-to-moderate in severity, although even mild changes can be annoying and irritating in day-to-day functioning.

Several strategies may be used to help with cognitive problems. These range from avoiding distractions, writing reminders, and asking others to speak clearly, to participating in cognitive rehabilitation, taking medications or supplements (for memory, depression, and/or fatigue), and if appropriate, taking a disease-modifying therapy to slow disease activity. Several books and other resources are available on this topic, although anyone experiencing cognitive changes should first speak with his or her doctor to identify potential causes and appropriate treatment choices.

Fatigue

Fatigue has been described as an “overwhelming sense of tiredness.” Up to 80 percent of people with MS experience the disabling effects of fatigue. This overwhelming tiredness could occur any time in the course of MS, and it has not been shown to be related to measures of disability like the EDSS (Extended Disability Status Scale). Many people with MS find that fatigue increases as the day goes on, and worsens with a rise in body temperature, which might be caused by hot and humid weather.

Many people with MS find that fatigue limits their enjoyment and participation in many activities. Fatigue can make performing tasks on the job or at home difficult. Although researchers do not know at this time what causes fatigue in MS, a number of influences on fatigue have been identified.

Fatigue is complex. Among others, some of the many types of fatigue include:

• motor fatigue, caused by prolonged physical activity
• generalized pathologic fatigue, associated with an underlying medical or psychological condition, such as MS or depression
• cognitive fatigue, where someone experiences reduced attention and slowed thought processing
• heat-induced fatigue, caused by a warm environment or fever

These multifaceted origins involve both central nervous system and peripheral nervous system mechanisms. Since MS may be associated with depression, fatigue, and cognitive dysfunction, treating all of these conditions may create a synergistic effect – referring to a greater effect through the combination of treatments. Other contributing factors can include infection, poor sleep, and sedating medications.

Strategies to help fight or treat fatigue include:

• Reviewing medications that may increase fatigue
• Exercising, which has been shown to significantly reduce fatigue in MS
• Planning activities to avoid triggers and conserve energy; for example, individuals who are heat sensitive can plan ahead to avoid outside activities in the midday sun, as well as make efforts to reduce activity – such as by parking closer to a store entrance to avoid a long walk; a handicapped parking permit can be of help
• Treating depression in MS can sometimes improve aspects of fatigue, which can occur with pseudo-dementia (cognitive dysfunction as a consequence of any underlying depression; may be reversible with antidepressants) and generalized pathological fatigue (caused by the disease)
• The judicious use of prescription stimulant medications can help to pharmacologically combat fatigue in MS, although insurance companies may not always cover these types of medications
• Commonly prescribed medications include:
  • Provigil® (modafinil)
  • Nuvigil® (armodafinil)
  • Symmetrel® (amantidine)
  • Ritalin® (methylphenidate)
  • Dexedrine® (dextroamphetamine)
  • SSRI antidepressants (Prozac®, Paxil®, Zoloft®)

Fatigue can be difficult for family members and friends to understand, because it is invisible to others. If fatigue is poorly understood, a person with MS who is experiencing fatigue might be characterized as “lazy.” Educating family, friends, and partners about MS fatigue is very important.

Neuropathic and Neuromuscular Types of Pain

More than 50 percent of individuals with MS identify pain as a significant symptom. For many years, the medical community did not support the idea that pain could be caused by the effects of MS, but physicians today recognize that pain is a common symptom.

MS pain is mixed and may be divided into two different types. Pain from MS can be a direct result of damage to the nerves (referred to as “axons”) of the central nervous system (CNS), which consists of the brain and spinal cord. This first type of pain is referred to as neurogenic or neuropathic pain, and is caused by a lesion in the CNS. This type of pain may be intermittent or steady; spontaneous or evoked. It is often described as numbness, pins and needles, burning, or hypersensitivity.

Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen usually won’t work well on this type of pain. The over-stimulated nerves need to be calmed, and this may best be accomplished with anti-epileptic drugs, tricyclic antidepressants, and antispasticity drugs, to treat painful spasticity and spasms. Topical medications such as lidocaine gel or Zostrix® (capsaicin topical analgesic) may help reduce the burning and tingling. Optic neuritis is often treated with steroids to reduce the inflammation of the optic nerve. Non-pharmaceutical strategies may help to reduce the perceived severity of the pain.

Treatments include:

• Integrative medical therapies such as acupuncture, hypnosis, cognitive behavioral therapy, mindfulness, and meditation
• Some of the more common neuropathic pain medications include:
  • Neurontin® (gabapentin)
  • Tegretol® (carbamazepine)
  • Keppra® (levetiracetam)
  • Anti-Anxiety Agents (such as Cymbalta®, Valium®, and Klonopin®)
  • Tricyclic Antidepressants (such as Elavil® and Pamelor®)
  • Dilantin® (phenytoin)
  • Lyrica® (pregabalin)
• Capsaicin cream or a lidocaine patch may also be used topically. Additionally, selective serotonin reuptake inhibitors (SSRIs) and selective serotonin and norepinephrine reuptake inhibitors (SRNIs) may be used as well. These specific medications are listed in the section on depression.
• Medical marijuana (cannabis) has been used experimentally in treating pain and is available by prescription in some states.

If taking long-term narcotics, a pain-management specialist may be consulted to address potential addiction, provide psychiatric care, and care for other related issues.

A second type of pain is associated with living with disability and its effects. This is referred to as nociceptive. Caused by any mechanism that stimulates a pain response, it can be mechanical, thermal, chemical, or electrical. Examples of this type of pain include musculoskeletal pain, lower-back pain, painful spasms, pain related to urinary-tract infection, pain of pressure sores, and even pain associated with disease-modifying drugs.

Unlike neurogenic pain, neuromuscular pain may respond to NSAIDs, which includes ibuprofen (Advil® and Motrin®). Tylenol® (acetaminophen) may help with this type of discomfort too. Antidepressants are sometimes effective and their function is twofold: they may help to shift the perception of pain, while also elevating one’s mood (living with chronic pain is known to increase depression, fatigue, and anxiety). Anti-spasticity medications may be used if spasticity and/or spasms are contributing to one’s discomfort.

Non-pharmaceutical approaches include acupuncture, massage, tai chi, yoga, meditation, hydrotherapy, and physical therapy, among others. A physical therapist experienced with MS can be particularly useful in returning balance and good posture back to one’s movement. Warm compresses can sometimes loosen a tight muscle or reduce lower back pain, while an ice pack is normally prescribed for a recent muscle injury or injection-site reactions.

MS experts caution their patients about chiropractic care as it can potentially aggravate the nerves of the back and neck. If back pain is severe, tests should be done to see if a pinched nerve, slipped disc, or other structural problem is at fault.

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