Over on MultipleSclerosis.net, we recently shared an article by Dianne Scott about fighting the secondary progressive stage of MS (SPMS). Her words generated a lot of discussion in our community about how MS looks from the outside compared to how it can feel from the inside! The many thoughtful responses added so much to the article and the conversation about life with MS that we decided to compile some of the comments and share them here. Continue reading
Heat will do it. Being unable to get around easily will do it. For so many people living with Multiple Sclerosis, there are many reasons to think twice about going on vacation. It can seem like too much work for not enough payoff.
To find out how the Multiple Sclerosis community is finding ways to vacation that truly work, we reached out on the MultipleSclerosis.net Facebook page. The question we posed to the group is: “Are there any vacation spots that you would recommend as being ‘MS-friendly?’”
Almost 50 of you commented, sharing Continue reading
Physical weakness, fatigue, impaired ability to remember information. MS certainly can take a toll on what day-to-day life looks like. For many living with MS, you now have a greater appreciation for what life looked like before the diagnosis.
Because it’s very common to miss aspects of life that fell victim to the disease, we wanted to start a conversation about the topic. On the MultipleSclerosis.net Facebook page, we asked you to share what you miss most.
Here’s what you had to say. Continue reading
Facing fatigue daily or almost daily is a lot for anyone to get through, and it’s frequently cited as the most frustrating symptom for people living with MS. It’s especially challenging when anyone with MS also has to keep a house clean, get food on the table, run errands or do the same work they did before receiving the diagnosis.
It does have a name. That maddening feeling of being stuck, unable to express what’s on your mind. In the Multiple Sclerosis community, it’s now called fumbling word vomit.
In her piece, Ashley Ringstaff details what many of you have experienced—that inability to find the right words in the moment. It’s yet another piece of MS that’s hard to live with.
We posted Ringstaff’s piece in the MultipleSclerosis.net Facebook page, and more than 100 of you commented, venting along with Ringstaff and sharing solution as well.
Here’s what you had to say. Continue reading
There is one day that many people with MS see looming in the near or distant future: the day they can no longer work. For some, the actual timing of this day comes as a surprise—and the resulting financial strain is huge. But what can be even harder is the process of applying for and possibly being denied medical disability.
For Mitch Sturgeon, the answer to it all became obvious. Not easy—but obvious.
Sturgeon recognized that disability was a ‘when’ and not an ‘if,’ and so he scheduled the last day he could work, Continue reading
Dr. Phil shocked many viewers this past spring when he stated that “… 100 times out of 100 this won’t work” if partners care for partners with disability.
Whoa. It’s painful to even read that sentence, isn’t it?
Many of you watched the episode or heard about the comment and had a strong reaction. To open up the conversation about MS and caregiving on the MultipleSclerosis.net Facebook page, we posted an article by Dan and Jennifer Digmann that was a response to Dr. Phil’s inflammatory comment. More than 100 of you Continue reading
For those with MS, it can be difficult to adapt to the physical and emotional changes that can accompany life with a chronic, debilitating condition. For some, the real pain of MS comes from not being able to be the person you once were, and one of the most difficult adjustments is the loss of your former self. For many, it can be extremely difficult to come to terms with losing this version of themselves, and some may even find themselves mourning that loss. We recently asked Continue reading
The Family and Medical Leave Act (FMLA) provides job protection to those that need to miss time from work due to illness, or who need to provide care for a family member with a serious health condition. One of our MultipleSclerosis.net contributors, Donna, recently posted a great piece on FMLA, explaining the process, including who qualifies and how it works. In response to this post, we received so many insightful comments from our community members, conveying their personal stories and challenges with FMLA, that we compiled some of their experiences to share.
Granting time to focus on what’s important
There are many great benefits of FMLA, Continue reading
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.