Living with the MS Itch

Uncontrollable. Insatiable. Seemingly brought on for no reason.

The scratching that can accompany an MS diagnosis is one of the most frustrating symptoms to deal with. It’s a neuropathic itch — that is, caused by messed up nerves signals from the brain, which makes the itching sensation impossible to stop. No amount of scratching lessens its intensity.

To learn more about how you cope with this symptom, we reached out on the MultipleSclerosis.net Facebook page, asking, “Have you ever had that uncontrollable itch that feels like bugs crawling all over you?”

More than 300 of you reacted, and more than 70 of you weighed in. Here’s what you had to say.

“I have bruised myself by scratching.”

Because the itching is a signal switched on by the brain, there’s little you can do physically to change what’s happening. But the desire to act is relentless. Several of you mentioned that you can’t help but continue scratching, even when it leads to bleeding or bruises.

“OMG yes, and it’s insane! Sometimes I am positive that a spider is crawling on me and there isn’t. I have bruised myself by scratching.”

“Always, it’s horrible. It won’t stop being itchy till I scratch the hell out of it, then I end up with sores and scratch marks.”

“Yes, for me it started about six years before I was diagnosed with MS.”

For many of you, the itching came on long before you even knew you had MS. For others of you, you didn’t know that the itching was related to MS until you read the Facebook post on MultipleSclerosis.net. Until you have the MS diagnosis and the understanding that this itching is related to the diagnosis, it can seem mysterious — which is more frustrating than anything else. Too often, we can’t even begin to treat that which we can’t categorize and name.

“Yes, three years before I actually had the initial onset of my disease. It was absolutely horrible. Now I get itching on the palms of my hands and fingers. It’s really annoying more than anything.”

“Yes, but I didn’t realize it had anything to do with my MS!”

“Just as you are going to sleep is when it hits hard.”

Although the onset of symptoms can appear random, it can be triggered by stress. For many people, stress worsens after the workday, as that is when the mind no longer has tasks to focus on, and instead, can start spinning with worry. Thus, bedtime can be one of the most challenging times of day as we lie in bed with nothing but our thoughts.

“OMG, I have been having this the past couple days. Feel like my skin is crawling. More so in the evening.”

“Yes, and it’s like fire ants! Just as you are going to sleep is when it hits hard.”

“Yes, very frequently especially at night along with a feeling of electric shock on nerves on my right side.”

“This is the only symptom that seems to be better when I’m taking my Neurontin.”

Several anti-epileptic drugs, including Neurontin, aka Gabapentin, and Lacosamide, aka Vimpat, were developed to treat seizures caused by shingles, but have also been found to provide relief to the nerve-related problem of the MS itching. Several of you named these drugs, citing that they alleviate much of the itching. If this sounds like a solution that might work for you, start with your regular doctor or ask about seeing a neurologist.

“Honestly, this is the only symptom that seems to be better when I’m taking my Neurontin… The random creepy-crawling feeling and the pins-and-needles feeling, which is nice. I used to feel like something was crawling across my face and biting me.”

“Your MS specialist should be able to help you. If it’s something that is out of control, a drug such as Gabapentin can help. Some topical routes can help soothe but because it’s neurological, just know this is coming from the brain. Cool clothing and lowering your stress can help. If needed, talk to your neurologist.”

“I take Vimpat, a seizure med, to control it—because otherwise, I will scratch till I bleed and bruise.”

“My doctor gives me a prescription itch cream.”

For others, a simpler solution may work. Anti-itch creams are easier to get and might be a good choice for a first step in solving the problem. Beyond creams, there are alternative therapies available as well.

“This happens all the time. I used to take pills to stop the itching, but Medicare quit covering them. So now my doctor gives me a prescription itch cream and it helps!”

“I go for light treatment. It works!”

We want to say thank you to everyone who shared their stories and solutions on the MultipleSclerosis.net Facebook page. Check out the comic that inspired these responses here.

Share Button

Yes, I Admit it, I Have Multiple Sclerosis and Sometimes I Cry

MS emotions

By Penelope Conway

I woke up in tears yesterday. No reason. Nothing bad happened to me in the middle of the night. I didn’t wake up from a nightmare, my goldfish didn’t die and I wasn’t in a lot of unbearable pain. My emotions just went haywire all on their own. I hate when that happens. I take meds to help keep my emotions stabilized, but yesterday’s dose must have been a dud.

Multiple sclerosis has this way of messing with a person’s emotions. Sometimes there’s a Continue reading

Share Button

Intimacy and Family Planning with MS

Couples living with multiple sclerosis (MS) can often experience challenges in their relationships, levels of intimacy and changes in roles and expectations. Join MSAA, as we present a new webinar on relationships and MS:

“Intimacy and Family Planning with MS”
Tuesday, March 5, 2019
8:00 pm (Eastern)

To help strengthen and foster healthy relationships, MSAA invites couples affected by MS to Continue reading

Share Button

Emotional and Physical Wellness Go Together

By Doug Ankerman

They go together like milk and cookies, peas and carrots, Forrest Gump and Jenny.

Emotional and physical wellness go together like shoes and socks (or socks and sandals on middle aged males).

You can’t have one without the other.

But how so? Aren’t they two different things, some may ask?

I used to think Continue reading

Share Button

Dating and MS: Loving and Risking Heartache

By Stacie Prada

I used to feel such relief that I was married and didn’t need to be out in the dating world. It sounded horrible, and I enjoyed having my relationship set with the expectation there’d be no divorce. Then I started having health issues and was diagnosed with multiple sclerosis after 15 years of marriage.

When a married person is diagnosed with MS, the rate of divorce is about the same as the general population, but the gender disparity is enormous. A study by the Fred Hutchinson Cancer Research Center1 found that Continue reading

Share Button

Physical and Mental Wellness

By Lauren Kovacs

Ok fine!

I admit that denial of MS and its friends mental and physical stress is a battle. They go together and share equal importance. One affects the other. I had unknowingly adopted both.

Years of mental struggle and talk-therapy led me to medication eventually. I am not one to rely on pills. I try several options, before I let pills win. Anti-depressants are, for me, a must now.

I take a teeny-tiny dose, but it helps. It gets Continue reading

Share Button

How to Thrive Emotionally with MS

By Alene Brennan

When I was diagnosed with MS, I was in a complete fog.

The diagnosis came by surprise and it was just six weeks after my mother passed from cancer.

Talk about a wave of emotions.

I was sad. I was angry. I was frustrated. I was lonely. I was overwhelmed.

While I wasn’t sure exactly how, I knew that these emotions were affecting my health. If I wanted to be on a path to healing, Continue reading

Share Button

“We Brighten The Future By Honoring The Past”

As a kid growing up, February was a pendulum that swung from far left to right. We’re still in winter and that means snow, but you still have to go to school in the cold. It’s a shorter month so one step closer to spring but it’s still dark earlier in the evening. It’s Black History Month which is big and important, but feels the same every year.

Now that last one I’m sure can go either way with the masses (I’m well aware and that’s ok). Growing up as the only black face in most of my classes and many of my activities, could make February an extremely exhausting month. I found myself Continue reading

Share Button

Valentine’s Strawberry Milkshake

Milkshake lovers will love this creamy, delicious strawberry milkshake. The flavors of fresh strawberries mixed with vanilla ice cream and white chocolate is refreshing and yummy. It is the perfect treat to share on Valentine’s Day with someone you love! Continue reading

Share Button

Being Self-Aware

I don’t think many people take time for themselves nowadays. I think our society has this rushed, always do, on the go mentality that skews our perception of what is important and what should take priority. For many it’s a natural and human characteristic to want to be a people-pleaser and do for others much of the time. But I think our sense of self gets lost in this and Continue reading

Share Button