Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)


Nerve pain feels like coming apart at the seams

A multiple sclerosis warrior might feel like a bundle of nerves, but wonder how this can be possible. After all, doesn’t MS diminish or destroy our ability to feel sensations? So how can nerve pain be part of life with MS?

Alas, the MS MonSter wields a two-edged sword. And one of his favorite attacks is nerve pain. That’s the wacky and inexplicable and seemingly spontaneous, yet often excruciating, agony that strikes without warning.

MS can make us numb, but it can also bring a remarkable amount of particularly frustrating pain.

Nerve pain (also known as neuropathic pain) isn’t limited to MS, either. It’s also a frequent feature of such conditions as advanced alcoholism, cancer, chemotherapy, diabetes, drug addiction withdrawal, fibromyalgia, Guillain-Barre Syndrome, heart disease, herpes (and cold sores), HIV, Lyme disease, repetitive stress, shingles, and more. Nerve pain can also come along after a serious physical injury or burn.

How does nerve pain feel?

That’s a tricky question. Neuropathic pain does not feel the same way in each person, or even in each instance. Sufferers report such sensations as aching, burning, buzzing, freezing, itching, pinching, pounding, pricking, pulsing, quaking, reeling, sharp, shooting, sparking, stabbing, stinging, throbbing, tingling, and zapping. This variation of frequent feelings makes nerve pain particularly difficult to explain or manage.

Nerve pain ranges in intensity (from nagging discomfort to total torture), and it may affect a single part of the body or cause all-over agony. In lots of people, nerve pain may also lead to anxiety, depression, and sleeping problems.

Why do MSers experience nerve pain?

In multiple sclerosis, the myelin covering on our nerves can become damaged. (OK, we knew that.) This destruction can render the nerves incapable of transmitting sensation, but it can also make them particularly sensitive. A slight breeze, a light brush with a sleeve or collar or pant leg, or even seemingly nothing at all can register as painful. This picture can grow even worse, if we are tired or stressed or otherwise compromised.

Can nerve pain be treated?

Often, doctors aim to identify and treat the condition that is causing neuropathic pain. At the same time, the symptoms of this strange discomfort may respond to over-the-counter painkillers, topical applications, and natural treatments (such as acupuncture and vitamin supplements). In the worst cases, prescription medications may be advised. Physicians have even prescribed anti-seizure drugs for nerve pain.

Eliminating known triggers can help, too. But the MS MonSter’s nerve pain is pretty persistent. It can be chronic.

Personally, I could swear this nasty nerve pain crops up quickly after I eat anything containing monosodium glutamate (MSG). Sure, neuropathy pain enters the picture at other times, but this one has grown obvious. I’ve become a devoted food label reader, but sometimes I eat it by mistake. Suppose I’m in a restaurant or a guest in another home. The MSG after-effects show up pretty fast. Within an hour (or even minutes), the burning, buzzing, reeling, sparking pain starts.

Not long afterwards, the aura and MSG migraine are sure to follow. I can tie similar symptoms to aspartame (NutraSweet). This may not be true for everyone, but it sure is for me.

Whee. What a party.

No wonder MSers sometimes feel as if we are coming apart at the seams – even when we’re not.

 Adapted from public domain artwork

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First day in a full week without a migraine!

Some things are worth celebrating. People love to crow about birthdays, anniversaries, holidays, and other special occasions.

Me? Today I feel like throwing a party. This is the first day in a full week that I have not woken up with a blaring migraine headache.

You know, the kind of brain-banger that drags your butt out of bed before it’s even light out to stumble to the medicine cabinet, desperate for a remedy. And the only thing that works at all is the migraine medication that is loaded with caffeine, so you know you’ll be up for the day at that point.

And then the miserable migraine continues to pound and pommel your skull throughout the day … and into the next day … and …

But today! Whoo! Today it’s gone – at least, till the next time.

I wanna do cartwheels!

No, wait. In all my life, I’ve never actually done a cartwheel. And, at this point, I can only imagine the added vertigo.

OK. I’m doing cartwheels in my mind.

See, for anybody who has grown somewhat accustomed to frequent or ongoing pain of any sort, any absence of such agony (even for a while) is practically cause for euphoria.

I even caught myself singing at my desk a few moments ago.

Suffice it to say, it’s a red-letter day.

 Adapted from public domain artwork

Feel free to follow on Google Plus and Twitter.  You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest as well.


Does your neurological condition bring you shame or spunk?

Maybe that sounds like a simple question, but apparently it is not. Sure, we know in our heads that a neurological condition is no cause for shame, but plenty of us still wrestle with this, at least from time to time.

Nearly three out of five individuals answering a fairly recent Neurology Now online poll admitted that they felt ashamed of having a neurological condition. Two out of five said they did not feel ashamed of it.


Maybe it’s not self-made shame. Sometimes it’s generated by others.

Despite remarkable medical advances and cultural acceptance of neurological conditions, a social stigma seems to exist with some folks, even if it’s not always intentional. Neurological conditions include Alzheimer’s Disease, Brain or Spinal Cord Injuries, Brain Tumors, Epilepsy, Huntington’s Disease, Multiple Sclerosis, Parkinson’s Disease, Spina Bifida, Stroke, and more. Some of the symptoms of these diseases and disorders can be downright daunting and quite uncomfortable. Even well-meaning people may grow awkward around folks with neurological disorders, fumbling for a way to assist or just relate to us.

As an individual living with one of these issues, fighting it with all I have, I want to shout across the entire internet to reach anyone with such a diagnosis:

“This is medical.

“Just because you may stumble, stutter, totter, struggle, lose coordination, bump into objects or other people, become momentarily confused, slur your speech, or even slip out of consciousness from your neurological disorder, this is not a question of shame. Stand your ground – even if you can no longer stand still or straight or strong.

“And may scientific research lead quickly to cures for neurological conditions.”

Can I get an “Amen”?

C’mon, MS warriors. Let’s get spunky about this to stomp out shame and stigma.

 Public domain artwork

Feel free to follow on Google Plus and Twitter.  You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest as well.
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