It has been established that there is pain in MS. I have talked about neuropathic pain and musculoskeletal pain, which is generally considered secondary pain. Now it is time to talk about tertiary pain. Tertiary pain can be broadly defined as the social, vocational and psychological complications brought on by the primary and secondary symptoms.
It is important to remember that these problems affect people in different ways, and for some they will always remain very mild.
Tertiary pain can be something as simple as bruises, cuts, and scrapes cause by an unstable balance or an awkward gait. Even trying to fight MS by using the known disease-modifying drugs sometimes causes tertiary pain. It may begin with painful injections that leave deep bruises, skin problems and flu-like symptoms. Or, it may be more serious problems like blood abnormalities and liver dysfunction. In addition, Novantrone® is known to cause heart problems and a higher risk of leukemia. Tysabri® may cause a life-threatening brain virus. These problems are rare, but MSers who choose each treatment must be aware of the possibilities.
Every time an MSer feels a new pain, the question arises -- Is this an MS pain? Sometimes the answer is unknown, awaiting further information. While the pain is being identified, sometimes over a long time, there is often a period of fear and stress, reminiscent of the state of limbo experienced while awaiting the original diagnosis. When a current symptom seems to become more intense, the question is -- Is this a new exacerbation? Again, the answer must wait for 24 hours when it can be determined to be an exacerbation.
MS treatment is focused on physical symptoms, but psychological, emotional and social symptoms can be devastating and painful as well. Tertiary pain largely fits into those categories which sometimes involve physical pain as well.
Pain certainly affects our quality of life. Quality of life is what makes life worth living. It is difficult to measure subjective factors, but I think tertiary symptoms take a bigger bite out of quality of life than most other MS symptoms. Let's look at some examples:
For many people, their quality of life centers around what they do, whether that means a career, volunteer work, enjoying family, or anything else they may choose. When a chronic disease like MS enters the picture, things often change. Most MSers experience fatigue, and fatigue is the symptom that causes most MSers to leave their jobs. Other symptoms may also conflict with the ability to perform certain job functions.
Sadly, a lack of awareness on the part of employers is a reason for some retirements. Often an accommodation could lengthen the working lifespan, and sometimes no accommodation is needed. Too often, MSers are pressured to take early retirement because of lack of understanding. I read about a woman who was diagnosed and immediately handed her retirement papers. No wonder there is such personal conflict about what information should be shared and when.
Toward the end of my working life, I stopped going into the office except for occasional status meetings. Telecommuting worked for me because of my job functions and the Internet. It was great for a few years and I was sorry to see it end.
Pain associated with job loss, whether unexpected or voluntary, centers around self image and confidence. A person who is no longer the primary breadwinner or is unable to care for home and family frequently suffers a blow to a perceived position in society. It may be further complicated by the associated loss of income.
MS is an isolating factor. Personal relationships are not the same once MS is a factor. An MS diagnosis can be devastating to loved ones, especially when care giving is required.
Relationships can include family or friends.
- A child, whether young or adult, whose life has been drastically changed
- Parents who must deal with a devastating disease
- Difficulty with intimacy and sexual issues in continued relationships
- Guilt because, while the MSer is becoming increasingly functionally disabled, the partner is becoming socially disabled
- Higher divorce and separation rate than couples where MS is not a factor
- Problems finding dates or new matches because of logistics or loss of self confidence
- Friends are less accessible because their time is taken by continued work
- MS symptoms interfere with planning for visits with friends and family
- Just being around the public is awkward because of logistics or public reactions
Part of having chronic disease is the cost of it. MS may add extra expenses such as:
- Extra doctor visits -- including specialists and expensive tests
- Medicine -- if disease-modifying drugs are selected as part of the treatment, medicine alone may cost up to $30K annually, and insurance premiums may be as high as $20K a year; there are programs that offer financial help, but many people are competing for those funds
- Mobility aids -- although standard manual wheelchairs begin at just a few hundred dollars, and scooters are generally well under $5K, not everyone can handle a manual chair, and as the MS progresses, the type of chair progresses as well; eventually, a powered wheelchair may cost as much as a nice car; a car may need to be modified to transport the chair or a converted van may be necessary for transport.
- Home upgrades -- homes may need remodeling to include ramps, wider doors, and other changes to ensure accessibility
- Therapy -- physical and occupational therapists are often helpful to design therapy programs
- Caregivers -- full time or part time caregivers may be needed; if family members volunteer, respite care is a good idea
Must I go on? Obviously not everyone will face all of these costs over the course of the disease, but many of them -- and more -- do apply.
A diagnosis of MS is also a guarantee of stress. Stress comes into play because of the difficulty coping, relationships, public perspective of MS and disability in general. Beginning with the diagnosis, and continuing with the course of the disease, is the stress of facing an unknown but possibly devastating future. Any time a new pain comes up, there is fear, and sometimes confusion and new questions. All symptoms are threatening -- even when they remit there is always the chance of another relapse.
Stress causes MS symptoms to get worse, and it may even trigger a full-blown exacerbation. Ask anyone with MS and the conclusion is that stress affects MS. As the MS gets worse, the stress gets worse, too. This is a vicious circle that continues to amass tertiary pain.
Everything already listed leads to depression -- each topic and every point under the topic. MS is a depressing condition.
Depression may be caused by the loss of a job, a sweetheart or a circle of friends. When financial difficulties hit, depression cannot be far behind. Most people with MS, or living with someone with MS, are depressed at least some of the time.
To strengthen this vicious circle, the very medication meant to treat MS has depression as a side effect. It is an upstream battle to forge ahead while MS continually breaks down the body's ability to function. Depression takes away any interest in making an effort and saps whatever energy may be remaining. There is no denying that depression is painful and that it is closely related to MS.
The National MS Society tell us "Severe depression can be a life-threatening condition because it may include suicidal feelings. One study found that the risk of suicide was 7.5 times higher among persons with MS than the general population."
Tertiary pain, the social, vocational and psychological complications brought on by primary and secondary symptoms, can be as painful, albeit it in a different way, as any pain associated with MS. Those described here, and others like them, are life changing, sometimes devastatingly so, and rarely in a positive light. MS steals our function, and it also steals our self-confidence, scrambles our social lives, and reduces or eliminates our independence.
In the next several articles, I am going to talk about other ways MS causes or intensifies pain, and treatment of MS pain, before concluding this series. If there is something else about pain you would like to talk about, please let me know.
Notes and Links
* There are so many links here, but they are worth going through. There are some on stress and depression, and many on Quality of Life. Then there are a couple of others. Each one is clearly identified to make selection easy. Enjoy them at your leisure.
Julie Stachowiak on Stress
Stress and Women
Julie Stachowiak on Depression
WebMD Depression and MS
WebMD MS symptoms
Lisa Emrich's series on Quality of Life
Side effects of disease-modifying drugs
Even small positive experiences are uplifting for Quality of Life
MSIF on promoting Quality of Life
What does Quality of Life mean?