What Neuromyelitis Optica Skin Symptoms Feel Like

Everyone knows that how we treat our bodies affects our health. Our habits, behaviors, and self-care — which include sleep, stress management, a healthy diet, and exercise — all play a role. Yet, somehow we often tend to overlook our skin.

Particularly as patients with neuromyelitis optica (NMO), why don’t we pay more attention to our skin?

Humans instinctively crave contact with others. When children are born, new parents are encouraged to cuddle their kids, which supports the bonding process. Later in life, when we’re having a difficult day, this is why a simple hug from a friend can make a big difference.

For NMO patients, however, touching can be painful. We suffer from a symptom that feels like pins and needles, which can range in intensity from feeling like a sunburn to being pierced. It comes and goes without notice, and can affect a single area or the entire body.

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Changes in the weather

The temperature changes every season, and extreme temperatures bother me. I used to sit on our back deck to work outside, but going from the warmth of the sun to the comfort of our air-conditioned home can cause pain. All NMO patients report challenges with this sensation. It’s as if our skin is in crisis and cannot regulate our body’s temperature fast enough.

Listening to our organs

Some medications give us heartburn. Challenges with light sensitivity or a headache might indicate an oncoming optic neuritis attack, which can range from temporary to permanent vision loss. There are many ways our organs hint at our overall health. Our skin does the same.

The skin might provide signs like redness or piloerection, more commonly known as goosebumps. When I feel this way, I joke that my nerves are shot. It’s really the small muscles near our hair follicles contracting from stimuli, or in our case, poor signals from our brain.

A few years ago, I started to notice small dots appearing on my skin. They were little spots of blood, the size of a pinpoint, that sat just under my skin. The spots have never hurt and aren’t noticeable to anyone close by, but I can see them. This is called petechiae, which is an indication of a serious underlying (or in my case, existing) condition.

While I personally don’t have the patience to see if there is any correlation between the number of spots and a flare-up of NMO symptoms, I realize that my body has been speaking to me the entire time.

Needle management

For two years, I have been subcutaneously injecting Enspryng (satralizumab-mwge) into my stomach each month. I need to muster a lot of courage to do this because I always have had a fear of needles. It started early in life, because my veins simply do not cooperate. During any intravenous treatment, I can guarantee my veins will collapse and I’ll need to endure another needle.

I’ve tried all of the tricks of the trade, from drinking a lot of water (not a good idea if you need to sit still for a long period) to having the nurses use the smallest butterfly needle meant for children (an embarrassing ask), to visualization and deep breathing (a frustrating practice in which I only see more needles in my future).

The biggest challenge is the elastic band that is tied around my arm. It’s uncomfortable and sometimes painful. The pins and needles sensation can cause me pain just from wearing clothing, and the tight elastic band is excruciating. Worse is trying to explain this to a nurse who just needs to draw blood or insert an IV line. They always think my grimacing face is because of the needle, which is partly true, but it’s mainly because of the pain they can’t see.

Researchers have been working on developing pain-free needles, but in the meantime, I try to think about my desire to live, all the things I want to do, and those I want to stay alive for. It’s the only way I can pierce the three layers of my skin and push medication into my stomach every month.

How does NMO affect your skin? Please share in the comments below. 

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).