MS Pain

It’s very difficult to express to others the specific pain that comes with an invisible disease. For me, I do everything I can to prevent anyone from noticing what MS does to me. Recently (within the last few months), the chronic pain I’ve experienced has gotten worse. Additionally, having to explain to others the pain I’m experiencing when I don’t even know how to comprehend it is frustrating and, well, sad. Unfortunately, most of the time when I’m experiencing an increase in pain, the questions I receive from others goes as far as angering me because, in my mind, these individuals should know if they are in my life. I’ve discovered that no one will ever truly comprehend the extent or complexity of MS unless they are in my (or another patient’s) shoes.

From an article in Overview of Pain as a Symptom of Multiple Sclerosis, MS pain is highlighted:

Multiple sclerosis (MS) can be very painful, although many people do not realize the extent to which MS can cause pain and discomfort. I know that it is hard to find words to describe the MS hug or the incessant feeling like ants are biting the soles of your feet. However, the fact that these things are so unique to MS can result in a lack of understanding and empathy, just when you need it the most.

Furthermore, from A.S.A.M.I.E.F., MS pain is highlighted:

NEW HAVEN, Conn. (Reuters Health) - A large-scale survey of more than 7,000 multiple sclerosis (MS) patients shows that most MS patients are undertreated and often unrecognized for pain management.

Yale University neurologist Dr. Marco Rizzo presented these findings last week here at the 15th Yale Neuroimmunology Symposium.

``MS patients experience migraine headaches, eye, leg, facial, bladder and skin pain. Muscular spasms and prickling or tingling sensations of the skin are common, and the pain is chronic,'' Rizzo explained.

MS is a central nervous system disorder in which the thin protective coating called myelin that insulates nerve fibers in the brain and spine becomes damaged. Eventually, lesions develop in the brain and spinal cord that can lead to a loss of vision, weakness, numbness and tingling.

MS occurs when white blood cells known as T cells attack the proteins that make up myelin. Currently, there is no cure for the disease.

Chronic pain causes ``miswiring,'' leading to abnormal pain pathways, Rizzo noted. Typical pain medications do not work in chronic pain and so MS patients need to be treated with medications such as a class of antidepressants known as tricyclic antidepressants, and anticonvulsants. Typically, more than one medication or combination needs to be given in order to effectively tackle the pain, Rizzo pointed out.

Tired vs. Fatigue

I've been asked numerous times about the differences in being tired and being fatigued. Below, an incredible piece from the Patient Experience highlights the differences:

…tiredness can […] be alleviated by rest. On the other hand fatigue is often the product of a chronic medical condition. It can lead to anxiety, light sensitivity, difficulty in sleeping and depression. Many people with fatigue go on find themselves almost in a state of delirium and exhaustion and it is difficult for them to carry on their previous lifestyles.

On the News Medical web site Dr Olson said “”It is important to recognize the difference between tiredness and fatigue, because fatigue is a marker that the body is not able to keep up. The onset of the manifestations of fatigue, particularly if these are not normal states for you, should be taken seriously.”

One of Dr Olson’s pieces of advice is to avoid caffeine and other stimulants which in the long term can lead to greater fatigue.

MS Facts

• More than 400,000 people in the United States have MS.
• An estimated 2,500,000 around the world have MS.
• About 45 percent of the people with MS are not severely affected by the disease.
• Diagnosis of MS is usually between 20 and 40 years of age.
• MS affects more women than men, with a ratio of 2:1.
• About 85 percent of those who are newly diagnosed have the relapsing-remitting form of MS.
• Without disease-modifying therapy, about 50 percent of those diagnosed with relapsing-remitting MS will become progressive at 10 years.
• Without disease-modifying therapy, about one-third of those diagnosed with relapsing-remitting MS will be using a wheelchair at 20 years.
• MS does not significantly affect life span.
• The course of the disease is unpredictable and no two people will experience the same set of symptoms.
• There are four types of MS: relapsing-remitting, secondary-progressive, primary progressive and progressive relapsing.
• Among young adults, MS is the most common disease of the central nervous system.
• Fatigue is one of the most common symptoms of MS.
• MS is not contagious.
• MS is a progressive disease for which there is not yet a cure.
• Increased understanding of MS has led to the development of many new treatments that target both the disease process and its many symptoms.
• Sclerosis is a Greek word meaning hardening of tissue or scars.
• MS is not inherited or genetically transmitted, although there does seem to be some genetic susceptibility to the disease.

*Conclusion* Part VI

As a patient who has had MS for over six years, returning to work and returning to the normal routine of daily life seemed near impossible. However, after being empowered with knowledge, although the understanding of the disease was far from over, it was easier to explain the progression and unpredictability of the disease to family, friends, colleagues, and employers. Additionally, the knowledge gained allowed for an easier transition back into the professional environment primarily due to explaining what accommodations may be needed. However, it is imperative to remember that simple accommodations used to help with fatigue, motor weakness, bowel and bladder control, loss of sensation, cognitive challenges, and unpredictability will allow an individual with MS to lead a much more productive and happy professional life.

Multiple Sclerosis and Personal Relationships

Relationships take a great amount of effort, communication, honesty, and intimacy. Regardless of outside barriers, a relationship can either be exponentially wonderful or extremely difficult. When I was first diagnosed with MS, I was with a boy I thought I would marry. Fast forward to less than six months after the diagnosis, and our relationship had dwindled to nothing. His last words to me were, "When will it be my turn to be taken care of?"

I never saw him again.

It was in that moment I realized that not only did I bring myself into a relationship, but I brought MS, as well. It's difficult to want to desperately hide potentially damning information about myself, but the truth of the matter is that, although MS does not have me, I have MS. I have the ups and downs caused by MS. I have limitations triggered from MS. I still have questions, and I can only assume that who I am with will have questions, as well.

I've always told myself that knowledge is power. In relationships, primarily, I've discovered that knowledge is powerful beyond measure. Finding an individual who can not only understand but accept the fact that I have a potentially debilitating disease that affects numerous facets of my life will bring more strength than even I can understand.

Through strength, however, comes humility. I have to be willing to let this individual in so he can begin the process of understanding and accepting. In the process, however, I do not feel that I should be reminded daily of the limitations or barriers I face.

With this said, where is line drawn in the sand?

Below, you'll find valuable information on MS and relationships. Though some of the information may be hard to swallow, the truth of the matter is that some or all of these issues may or may not exist. Each individual is different therefore each case of MS is different, as well:

What does “intimacy” mean? For many people, the term is simply another word for sex—in other words, being intimate with another person means having a sexual relationship. A satisfying, intimate relationship, however, rests on a much broader foundation—of trust, open and honest communication, shared goals and expectations, and mutual respect and concern. So intimacy refers to all of the ways, both verbal and non-verbal, in which partners connect with one another and enjoy their unique closeness.

A chronic, unpredictable disease like MS can challenge a couple’s intimacy in a variety of ways:

 

 

Barriers to Communication

MS affects everyone in the family—and both members of a couple are likely to have strong feelings about the unpredictable changes it brings to their lives. Finding comfortable ways to talk about the disease and its impact can be very difficult, at times leading to miscommunication or even silence. Learning how to share feelings and concerns is essential to maintaining intimacy.

Shifts in the Partnership

When the symptoms of MS temporarily or permanently interfere with a person’s ability to carry out his or her daily activities at home and at work, the roles and responsibilities within the family are likely to shift. If, and when, the relationship begins to feel too unbalanced—or one member of the couple begins to feel more like a caregiver than a partner—closeness and intimacy can be threatened. Identifying ways to maintain balance in the partnership is critical to maintaining an intimate partnership.

Added Stresses and Strains

MS can add to the normal challenges of everyday life by straining essential family resources, including money, time and emotional energy. When daily activities feel increasingly stressful, time-consuming or overwhelming, people may have little energy left for maintaining their emotional and physical partnership.Learning to manage everyday stresses and strains effectively can allow more time and energy for staying connected emotionally and physically.

Aside from the stress that arises in daily life for everyone, MS creates its own emotionally taxing predicaments, not the least of which is dealing with the unpredictable course of this disease.

The first thing to know is that stress can make any of us feel worse, whether by upsetting our stomachs or knotting our neck muscles. Many people with MS say they experience more symptoms during stressful times. When the stress abates, their symptoms seem less troubling or less severe. Therefore, learning to relax is essential.

But, relaxation isn't something you just decide to do. People have to learn to relax. You will need to discover what works for you, and you'll need to practice.

The Mind

Everyone experiences stress. But what is it, and what role does it really play in MS?

Bouts of severe depression, mood swings, and irritability, pose significant challenges for people with MS and their family members and can add to stress.

Simplifying daily life. Instructions on muscle relaxation, deep breathing, visualization, and more

A women's experience on anger—how to dissipate some of it and to channel the rest into a positive force.

The Body

Deep breathing and slow, gentle movements are the primary elements of this “moving meditation”—and it can be done sitting down

Whether swimming or sailing, working out in a gym, or competing at a round of golf, the revitalizing enjoyment of healthy exercise comes in many form.

Used to relax muscles, reduce stress, and relieve conditions exacerbated by muscle tension

With its emphasis on relaxation, breathing and deliberate movements, yoga is a good choice of exercise for people with MS.

Changes in Sexual Feelings and Responses

Sexuality is an important aspect of intimacy for most couples. And while MS can affect sexual feelings and responses in direct and indirect ways, sexual intimacy does not have to disappear from a couple’s life when one partner has MS.

Fortunately, a disease like MS can also bring people closer together. Many couples report that facing the challenges of MS has allowed them to connect with one another in new and powerful ways—finding an intimacy that was stronger than any they shared before.

Sexual problems are often experienced by people with MS, but they are very common in the general population as well. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord. If MS damages these nerve pathways, sexual response—including arousal and orgasm—can be directly affected. Sexual problems also stem from MS symptoms such as fatigue or spasticity, as well as from psychological factors relating to self-esteem and mood changes.

In a recent study, 63% of people with MS reported that their sexual activity had declined since their diagnosis. Other surveys of persons with MS suggest that as many as 91% of men and 72% of women may be affected by sexual problems. Ignoring these problems can lead to major losses in quality of life. Yet both individuals and health-care professionals are often slow to bring up the subject.

In women, symptoms include:

Reduced sensation in the vaginal/clitoral area, or painfully heightened sensation

Vaginal dryness

Trouble achieving orgasm

Loss of libido

In men, symptoms include:

Difficulty achieving or maintaining an erection (by far the most common problem)

Reduced sensation in the penis

Difficulty achieving orgasm and/or ejaculation

Loss of libido

Other MS symptoms cause problems in both sexes:

Fatigue and weakness can interfere with sexual interest and/or activity.

Spasticity can cause cramping or uncontrollable spasms in the legs, causing them to pull together or making them difficult to separate—either of which can make positioning difficult or uncomfortable.

Pain can interfere with pleasure.

Therapies Are Available to Treat Sexual Problems of MS

There are a variety of therapies to treat sexual dysfunction. For men, erectile dysfunction may be addressed through use of the oral medications Viagra® (sildenafil), Levitra® (vardenafil), and Cialis® (tadalafil); injectable medications such as papaverine and phentolamine that increase blood flow in the penis; the MUSE® system which involves inserting a small suppository into the penis; inflatable devices; and implants.

For women, vaginal dryness can be relieved by using liquid or jellied, water-soluble personal lubricants, which can be purchased over-the-counter. It is a common mistake to use too little of these products. Specialists advise using them generously. Petroleum jelly (Vaseline®) should not be used because it is not water-soluble and may cause infection.

Both men and women with MS and their partners can benefit from instruction in alternative means of sexual stimulation, such as the use of a vibrator, to overcome slow arousal and impaired sensation. Abnormal sensations and spasms can often be controlled through use of medication. Techniques such as intermittent catheterization or medication can control urinary leakage during intercourse.

Fertility, Conception, and Sexually Transmitted Diseases

MS does not affect the basic fertility of either men or women, although sexual problems may interfere with the ability of a man with MS to father a baby. "Dry orgasms," that impair fertility, have been reported by men with MS in several studies. These problems have been successfully treated with medication or through techniques to harvest sperm for insemination. Men who are concerned about fertility issues should consult a urologist experienced in this area.

Women and men with MS are also advised that they must make the same decisions and take the same precautions regarding birth control and sexually transmitted diseases as anyone else.

Emotional Issues

The emotional factors relating to changes in sexual function are quite complex. They may involve loss of self-esteem, depression, anxiety, anger, and/or the stress of living with a chronic illness. Counseling by a mental health professional or trained sexual therapist can address both physiologic and psychological issues. This therapy should involve both partners.

Reference:

The National MS Society. (n.d.). Intimacy. Retrieved September 17, 2010, from http://www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/intimacy/index.aspx

*Employer Accomodations* Part V

Accommodations must always be made in collaboration with the employee who has MS as he or she is the expert of the disease within his or her body, the limitations present, and what will or will not directly affect his or her production level within the work environment (Cornell, 2001). Most individuals with MS have been able to develop and use non-traditional accommodations to lead relatively normal daily lives. However, those who require accommodations within the professional environment have a right to request these accommodations and the employer has a responsibility to allow or such accommodations.

Symptoms of MS Requiring Accommodations

            Fatigue. During and after an MS relapse, it is not uncommon for MS patients to describe a profound fatigue restricting the function of day-to-day activities. Fatigue is often the most common MS symptom resulting in accommodations being made concerning an employee’s work performance at peak activity levels during his or her work day (Cornell, 2001). Typically, MS patients will describe the beginning of the day when they feel at optimal performance levels with performance deteriorating throughout the day caused by fatigue. Modifying the typical work day where the employee has more mentally or physically demanding activities in the morning could help alleviate such fatigue in the afternoon (Cornell, 2001). Furthermore, allowing short 10 minute breaks throughout the day will allow the significance of fatigue to be reduced (Cornell, 2001).

Motor Weakness. By making sure the employee with MS is seated properly with the monitor at the right height, the mouse and keyboard positioned properly, and equipment nearby, pain and fatigue, though never eliminated, can be helped. Motor weakness can be elevated due to MS, so an ergonomic work environment may be necessary for an employee with MS to function at optimal levels (Cornell, 2001). Additionally, the employee should be allowed to keep some type of power mobility, such as a scooter or power chair, at work to facilitate easier travel within the work environment (Cornell, 2001).

Bladder and Bowel Control. Though these particular issues are typically managed by the employee and his or her medical team, certain instances will require accommodations by the employer. Accommodations will need to be made by the employer to allow for easy access to facility restrooms due to bladder and bowel control in MS patients. Additionally, allowing opportunities for the employee to change clothing, carefully schedule meals, and allowing an option to work from home during times when bowel and bladder issues are more severe are other accommodations employers should consider (Cornell, 2001).

Loss of Limb Sensation. Loss of sensation in the hands or fingers can cause difficulty with typing, and accommodations such as different pointers, sensation stimuli placed on the keyboard, or voice recognition may be needed (Cornell, 2001). Furthermore, experimenting with different computer pointing devices such as joysticks to replace a mouse is another useful accommodation to be considered.

            Cognitive. Cognitive challenges will make it difficult to remember tasks, and accommodations such as a digital personal assistant to help with remembering to do tasks, remembering how to perform a task, or remembering important deadlines or meetings may be needed (Wahlder, n.d.). Additionally, these particular reminders can be programmed to be sent to the employee’s phone to maximize routines throughout the day (Cornell, 2001). If a list of cognitive demands on the job could be analyzed, odds are that the employee enduring MS will find it much simpler to describe what he or she needs.

             Unpredictability. The progression of MS is the main factor that causes MS to be so unpredictable. This unpredictability, in a sense, can be planned for by both the employee and employer. Understanding the current limitations and possible limitations will prepare all involved for what may be needed or what may happen in the future (Cornell, 2001). Additionally, in part of understanding unpredictability, both the employee and employer should sit down and prepare of plan of attack, so to speak, for possible relapses where the employee would require a week of hospitalization or recovery that would involve a slower-paced return to work.

*Americans with Disabilities Act* Part IV

The Americans with Disabilities Act was created for the "equality of opportunity, full participation, independent living, and economic self-sufficiency" for persons with disabilities (Gordon, et al, 1997). The most crucial aspect of ADA is the prohibition of employment based on a disability (Gordon, et al, 1997). It is the responsibility of the employer to abide by the laws and regulations of the ADA to ensure that each employee can perform their work-related tasks with necessary accommodations provided by the employer.