Pain

There is an old myth that Multiple sclerosis doesn’t cause pain. Actually, pain syndromes are quite common in MS. MS-related pain can be associated with faulty nerve signals in the brain and spinal cord. MS pain can also be attributed to daily living.

I experience a variety of MS-related pain every day:

• Lhermitte’s sign is a brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward. This is a classic symptom of MS
• Burning, aching, and prickling or “pins and needles.”  These are all neurologic in origin. These painful sensations typically affect my legs and feet, but also occasionally my arms and hands. They can be very uncomfortable -- even quite painful -- but are not dangerous or necessarily disabling unless they are severe enough to interfere with a person's activities.
• Pain from spasticity shows itself in muscle spasms or cramps. Tightness and aching in joints is another manifestation of spasticity.
• Back and other musculoskeletal pain. I’ve found that this can be caused by pressure on the body from immobility, incorrect use of mobility aids, or the struggle to compensate for gait and balance problems.

While it may be easiest to lie down and wait for the pain to pass, I’ve found that there are a few things you can do to help with pain. I take three drugs for pain management: Baclofen (a muscle relaxer that treats muscle spasms), Lyrica (treats neuropathic and muscle pain.), and plain ibuprofen. Make sure your doctor knows what medicines you are taking. Regular physical activity can help ease aches in your neck, back, and muscles - it can make you sleep better, too. Stretching for range of motion and flexibility is vital for pain management and basic living. Start slowly and work with a physical therapist to create a routine and/or list of activities you can do on your own and at your own pace. Remember, relaxation needs to be part of your schedule as well.

A good guide from the NMSS: Stretching for People with MS

Emotions and MS

Having MS is emotionally challenging. People with MS can experience anxiety, mood swings, and depression. In addition to symptoms being a response to adjustment to MS, some mood symptoms could be a result of the disease process itself. Though I’m mostly talking about the former here.  

Many people with MS go through a period of grieving after diagnosis - dealing with the loss of certain capabilities and the uncertainty about the future. For me, this happens over and over, with the progression of the disease. I went from a cane to crutches to a scooter to a power wheelchair within three years of diagnosis. I tend to be very hard on myself and hold myself to standards that no one else ever would. I start on that downward spiral of thought, ‘What happens if it gets worse?’

These thoughts can trigger anxiety. Anxiety can happen in response to circumstances in life, such as living with the uncertainty and stress of living with a chronic disease like MS. Before I enter a new situation, I often worry obsessively for days. Since I no longer use my legs, tricky transfers also cause me anxiety. Anxiety presents itself in me with both physiological and psychological symptoms. I shiver, cough and gag and am often restless. I can also be irritable, obsessive, have racing thoughts and catastrophic thinking. In order to manage this, I take anti-anxiety medication if I am going to be in a new situation, and try to distract myself.

Recently, I’ve learned to give myself a lot more breaks than I used to, and that’s done a lot to help me adjust. I have also started Mindfulness training. If you know me, that’s a giant step. I am pretty cynical about that sort of stuff but I have found taking 10 minutes away from life for awhile is refreshing and if I can gain more from it, bonus.

Remember, MS is not all in your head. Your emotions are as valid as your physical symptoms. Include your emotions on the list of topics to discuss with your doctor.

To learn more about Anxiety and MS, click here.

A good resource from the NMSS: Mood & Cognition in MS: [What you can do]

Invisible symptoms

Multiple Sclerosis is sometimes called an “invisible disease” because many symptoms go unnoticed by casual observers, and even by those living with someone with MS.

While I am in a wheelchair, a very visible symptom of my MS, I do experience symptoms not as visually apparent. For example, I often get vision problems and dizziness, as well as memory issues that affect my cognitive function. Somatic issues are also common, including weakness and fatigue, pain, and numbness.

Describing these subtle symptoms to those around you presents its own unique challenge. Just because others cannot see everything I’m going through that doesn’t mean I’m not experiencing life with difficulty.

Fatigue is one of the least understood and most frequent symptoms of MS. Fatigue is a very real symptom, resulting from damage to the nervous system. People often compare my fatigue to whatever they have experienced. But it’s not the same. Describing fatigue as feeling tired does not do it justice. Instead, perhaps comparing it to the feeling of wearing a lead suit might make it easier to understand. Everything is heavy and just moving is almost impossible.

MS fatigue can interfere with one’s daily functioning. It is best described by Spoon Theory – “…the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

Another invisible symptom of MS  I experience is pain – for years it was a common misconception that MS doesn’t cause pain. Pain is a very real symptom and can either be acute or chronic. Pain from MS can be a direct result of damage to the nerves or neurogenic. Or MS pain can be associated with living with disability and its effects – from using a cane or walking aide and the pressure you put on your arms to the pain caused by favoring one leg over the other, just living with MS can cause pain.

While I may look fine, remember that some of the symptoms which have the most impact on my life cannot be seen. Remember the invisible symptoms.

Support: Family

While MS has altered some of the things I’m able to do, and my relationships with others, I am lucky to have a strong, meaningful relationship with my family. But I have learned that there is the potential for MS to have a negative influence on family relationships. While my family has been supportive, I have learned from others that if family members aren’t willing to learn about MS and how it affects the person, or to listen to and respect each other, this can be a great source of tension.

MS is unpredictable. Individuals with MS and their family members may have difficulty anticipating what the next day or week will bring, let alone the distant future. Planning becomes difficult, creating an ongoing need for everyone to stay flexible. For example, instead of making plans to go to the movies, maybe have the family over and rent one.

My family lives in Wisconsin while I live in California. I have lived on the West coast for 15 years so we have gotten used to seeing each other only a few times a year. Since I was diagnosed, those visits have fallen dramatically. MS has disrupted my family's rhythm.  I am not comfortable flying since I no longer walk and airports, let alone airplanes, don’t really cater to the disabled. Unfortunately, that means family has to come to me, which they do. We have adapted and still have fun and good laughs. But adaptation is key. MS changes things for everyone.

Sometimes it has to be all about me.  I may not feel up to certain things. Truly, it’s not you, it’s me. If you ask how I’m doing and I say ‘fine’ or ‘okay’ think about this. My MS means I’m experiencing life with difficulty. A difficulty most can’t understand. I hope everyone gets the respect and care from family that I do. If not, know that strong connections with others are an important ingredient in a fulfilling life.

Support: Groups and Online

Being diagnosed with MS was overwhelming. I was lucky enough to be surrounded by a special group of family and friends who care about me. And while I hate feeling like a burden, relying on my family and friends makes things a lot easier. 

I think my loved ones feel useful if they’re included in my care - even if it’s a small thing like moving a table or grabbing me a drink. Asking for help doesn’t make you less capable. It makes your diagnosis easier to handle so that you can focus on taking care of yourself. 

Unfortunately, only people who have MS really know what it’s like. I was lucky enough to find a support group, MS Fight Club - physically located in the East Bay of the San Francisco Bay Area and accessible anywhere online. Finding this support group, which I joined about six months after I was first diagnosed, was vital to my mental health and understanding of my disease. This diverse support group showed me the reality of MS with humor, perspective, and experience. MS Fight Club has an active online presence via Facebook and Twitter. Support is just a click away. 

If you feel you don’t have anyone to rely on, I urge you to connect with others with MS. They can relate to you like no one else can. Contact your local chapter of the National MS Society or other MS organizations. Search social media sites like Facebook. I found these sites helpful:

Wheelchair Kamikaze – Marc’s blog is amazing. He combines his own experiences with a multitude of information about MS research and news.

Life with Multiple Sclerosis – Travis Gleason gets down to the nitty-gritty of MS all the while maintaining a positive attitude.

You can find more at The Best Multiple Sclerosis Blogs of 2015. 

There are resources out there to help you build a new style of family and support system.

Support: Adam

My husband Adam is pretty great. Ask anyone. Ask him. Ha! We started dating in 1998. At that time, I knew something was not quite right with me physically. I actually told Adam on our first date that I had arthritis (which is what I had been told) because we were walking a lot and I had decided to wear cute shoes instead of practical ones and I needed a rest. He was automatically sympathetic and showed concern the rest of the night. As our relationship grew, he showed even more support. Everyone saw how much he was there for me and I saw and felt it too.

By the time I was diagnosed with MS in 2011 we had been together for 13 years and married for two years. I never once doubted that he would stand by me. I am very lucky to have him and he says he is lucky to have me. We work together to navigate the unpredictable and changing nature of this disease and life together. We know that we must communicate honestly and effectively. We respect one another.

In many ways, Adam has been forced into the caregiver role. I am dependent on him for a lot of things. While this can cause resentment on both sides, it is something we have grown to accept. You have to grow with this disease not against it. That goes for both of us.

That isn’t to say that we don’t have our fair share of disagreements, tears, and even full-blown fights. We are just like normal couples. We also make each other laugh. If you can’t laugh together, you can’t love. I think we work as a couple because we are, at the core, the same couple we were when we started. 

Guilt

When I was first diagnosed with MS I was relieved. I finally had an answer for what I had been dealing with for 10+ years. But when a chronic illness like MS comes into your life and the lives of those around you, it brings with it many emotions.

I remember doing a lot of things when I was first diagnosed. I had a lot of tests to schedule; I had a lot of prescriptions to fill; I had to learn how to give myself an injection. It was a flurry of things to do. Things to do. When I finally had a chance to sit down and let it sink in that I had MS, I was struck with many emotions such as fear, resentment, self-pity, and guilt.

I had always been prone to guilt. Quick to apologize and make things right. Let’s all be friends. But now there is a new guilt to deal with, MS guilt. Feeling guilty because you have MS is ridiculous. But I did and I do.

A lot of my guilt stems from the unpredictable nature of MS. It is so hard to keep a normal schedule when MS symptoms come and go as they please. I also question myself, “Did I do something to cause this disease? Or “Could I have prevented this progression?”

I feel guilty for what I can no longer do, for what I can no longer be. I think about how I was before. My former life. I'm sorry. Remember when I could take the stairs? Remember when I could walk? Remember a year ago? Remember five years ago?  

There. I felt guilty. And I will feel guilty again. I need to feel these things but then I also need to let them go. Sing a few verses of Let it Be and feel the lyrics. I didn’t do this to me. Let it be.