MS is Hard

I’ve had a rough couple weeks. I’ve had a couple falls. I have gotten weaker. I don’t know if it’s from the falls – a lack of confidence - or if it’s my MS progressing. I’m more dependent. It’s getting harder. MS is always there. I fight it every day to just do regular things.

I need help with almost everything. This falls to my husband. He is amazing. He always says, “We’ll make it work. We always do.”And we do but then comes the guilt. I see the pressure it puts on him and I want to be better.

One of the hardest things for me to let go of is the idea of my former self. I miss the freedom of going, doing, and seeing whatever whenever I wanted. I think of what I used to do – just last year, in the past few years - things as simple as walking. Could I have changed things? What if…? I long for my past, I distress about my present, and I am scared of my future.

It’s taken me time to accept that resting is a key component to my treatment. I’m not lazy or unmotivated. I am sick. I have to accept that it's okay to listen to my body and do as close to nothing as possible if that's the way I'm feeling. I think it's very important for MS patients to realize this. Some days it's okay to just allow yourself to be a person with a horrible disease who just flat-out doesn't feel good. 

I know it’s healthy and normal to grieve what’s been lost. My grief is cyclical because my MS future is unknown. These are the facts of my reality. It’s a steady process. I'm not giving up. It's just hard.

MS and Complementary and Alternative Medicine or Therapies (CAM)

Many people with MS explore complementary and alternative medicine (CAM) treatments to help control their MS and treat their symptoms. Surveys suggest that up to 70% of people with MS have tried one or more CAM treatment.

CAM Therapies:

Acupuncture - Many MS patients find that they can achieve great relief from their life-inhibiting symptoms with the help of acupuncture. Acupuncture is an age-old healing practice of traditional Chinese medicine in which thin needles are placed at specific points in the body. Over time, some patients find that they experience their MS symptoms with less frequency and intensity.

My experience: I tried acupuncture twice and had panic attacks both times – I felt trapped. Unfortunately, it didn’t work for me but I’ve heard people have had great success in treating their MS symptoms especially pain, spasticity, bladder function, and fatigue.

Diet – see an earlier blog entry I wrote on MS & Diet.

Exercise – In addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms. It is important to make a program that suits you and your MS. Yoga, Feldenkrais, and Tai Chi are different things that are suited for those with MS.

My experience: I have a leg exercise program, an arm exercise program, do some core exercises, and practice Wheelchair yoga. You have to remember to pace yourself and take days off.

Vitamins, minerals, and other supplements - Being an educated and careful consumer is critically important to figuring out what to take. To be most effective, vitamins need to work in careful balance. Be sure to communicate with your doctor.

NMSS Vitamins Brochure

My experience: I take Vitamin D, a cranberry supplement for urinary tract health, Vitamin B1, Vitamin B12, and Magnesium. I can’t say I feel any better but I follow recommendations from my doctor.

LDN (Low-Dose Naltrexone) - Naltrexone is approved by the U.S. Food and Drug Administration (FDA) for the treatment of addictions to opioids and alcohol. At significantly lower doses, Naltrexone has been prescribed as a treatment for a variety of diseases. There was a small clinical trial involving 60 MS patients at UCSF (University of California – San Francisco). The investigators found that LDN significantly improved quality of life (specifically, mental health, pain and self-reported cognitive function), but no impact was observed on aspects of physical quality of life (such as fatigue, bowel and bladder control, and visual function). LDN may provide symptomatic relief for MS.

My experience: When I asked my neurologist about LDN, she just said, “It can’t hurt.” She also suggested I try it for one month then go off of it for one month. On the month I was off LDN, I had a very bad flare and ended up in the hospital and in In-Patient rehab for eight days. It may have been a coincidence but now I don’t miss a dose just in case.

Marijuana (Cannabis) - Marijuana has many possible benefits for people with MS. It may help with spasticity, sleep difficulties, pain, and bladder control. However, further research concerning marijuana and related substances for the treatment of MS is needed. People using marijuana to treat MS symptoms should discuss this with their physician. Users should be aware of the legal status of marijuana use in their area.

My experience: I use a vape pen with marijuana cartridges. It helps with my anxiety, pain, and spasticity.

Massage - Massage may produce many health benefits. It is generally considered safe and is of low to moderate cost. The studies directly examining massage in MS are limited, but work in other medical conditions show possible benefits for some symptoms commonly associated with MS, including depression, anxiety, spasticity, constipation, and pain.

My experience: I’ve started seeing a massage therapist and love it. She comes to me and can work on me in my power wheelchair. I can’t speak to long-term benefits but I know that it relaxes me in the moment and for hours afterward.

Meditation - Meditation is a mind-body therapy that may help with pain, stress, depression, anxiety, and insomnia. Furthermore, meditation may aid in the development of empowerment, self-esteem, and feelings of control; however, these concepts are relatively difficult to formally study. Given the pace and pressures of modern life, everyone could benefit from practicing meditation, but especially people with chronic illness and those with higher levels of stress.

My experience: I use the Headspace app for guided meditation. It has useful theme packages to help you control anxiety, stress, etc. I am a bit cynical but do feel the breathing does calm me.

Some people who seek out alternative medicine feel that conventional therapy has not successfully controlled their symptoms, or that the potential side effects associated with traditional therapy aren't acceptable. While CAM has not been shown to have significant effects on the progression of MS over time, many find that adding complementary medicine to their treatment program allows improved control of symptoms.