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.

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Being Slow Isn’t a Bad Thing

Eliminate MS Stress - Being Slow Isn't a Bad ThingBy Penelope Conway

Is it time for bed yet? That was my first thought as I woke up this morning. I glanced at the clock and it was proudly displaying 6:30 AM. That’s way too far away from the sun going down and me climbing back into bed. I yawned, tried to stretch and yawned some more but only seconds passed. Now the clock says it’s 6:31 AM. At least it’s one minute closer. Maybe I can just lie here for another 720 minutes. Continue reading

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Let Today Be the Start of Something New

By Penelope Conway

I woke up this morning yet again to the reality of multiple sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day with Bill Murray. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.

I don’t know when it started for me, but day after day my life became a blend of naps, computer screens, brain fog moments and doctor appointments. Trying something new just didn’t seem to fit into the mix of things.

From the outside everything in my world looked fine. I had a roof over my head, food in my pantry, an internet connection to get online with and friends both near and far, but what couldn’t be seen were the limitations I began having because of MS and the stresses that came with those limitations.

I failed at everything I tried to do. I had a hard time clipping my own fingernails, couldn’t drive safely even to the corner store, ran into walls that weren’t even in my way, tripped on air, forgot appointments and dropped everything I got my hands on. Talk about depressing…ugh! No matter how hard I tried, I couldn’t find the stop button for the out of control spinning chaos that surrounded me.

If someone approached me with even the thought of getting out and doing something new, at that time in my life I had become so defeated that I couldn’t hear what they were saying and would lash out at them for even suggesting such a thing. All I could see were the things I couldn’t do. Those were not some of my proudest moments, but great friends help you get through the rough patches in life, and thankfully I have great friends.

I call them my Push Coaches. They pushed me to see past my limitations and helped me to see that there is always more than one way to doing something. I discovered that the only real limitations I had were the ones I created for myself and realized that trying new things actually made me happier in life.

As weird as it may sound, stepping out from my daily routine brought excitement to my day and became a welcomed change of pace to the day-in and day-out rut I had gotten myself into.

Sure, my legs may not work well anymore, my hands may fumble with everything I get a hold of, and vertigo may keep me from seeing straight, but those things should never stop me from trying something new. I was determined to try something new at least once a day.

At first I did simple things like taking a different route to the grocery store or wearing crazy colored socks. Those simple changes to my day surprisingly made me smile more. After a short period of time I found myself seeking out other things to try like community art classes and volunteering at the local hospital. I began looking forward to the changes in my day.

It takes a lot of courage to get out there and do something new. If I could be your Push Coach today, I would encourage you to step out from your daily routine and try something new. Change your hair color, try a new tea flavor, join a book of the month club, enroll in cooking classes…just get out there and try something new.

Don’t let MS keep you from having new and exciting adventures in life. Besides, you just might surprise yourself and find a hidden talent you didn’t even know existed.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Do You Live Life in an MS “Bubble”?

We recently shared an article with our MS community about living life in an MS ‘Bubble’.  So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle.  Their responses were amazing, and we wanted to share some of them!

Preferring the “Bubble” to the Outside World

“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”

“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed.  People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”

“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”

“I mentally prepare.  No appointments, tell hubby having a recharge day, not doing anything.  Sit, drink tea, watch lots of TV and/or read”

“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”

Hiding in Your Bubble Instead of Engaging with Others

“This is just me.  I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”

“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now.  I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep.  It would just be easier to stay at home in my protective bubble”

“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”

Enjoying the Ability to Avoid Responsibilities and Daily Tasks

“Really! It can be challenging just thinking about moving or turning over in bed!”

“This is so right!  People just don’t get how hard it is to do the simplest things.  Like shower, get dressed, and go out.  The first to get done.  Maybe pj’s go back on and stay home is more like it”

“Thank you for saying it!  Get so sick of people saying that going out will be ‘good for me’.  NO it won’t!  It will exhaust me and make me feel ill for days, sometimes weeks!”

“Hermits unite!  Lol!  People with NO energy don’t wanna move…let alone GO somewhere…”

“It’s just easier to stay at home than to get dressed which tires me out more than I can say”

“It’s just easier…I don’t even want to go on vacation”

Not everyone reported feeling safe and comfortable in their bubble, however.  Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active.  Let us know how you view or use your personal MS bubble, and how it affects your daily battle!

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