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)

Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts

Sunday

Can wake-up sunshine help with MS?

  

Pulling back the curtains or running up the window shades immediately upon awakening in the morning has become a popular natural elixir for lots of folks. It’s not exactly a new discovery, but lots of health experts are trumpeting the merits of catching a glimpse of sunlight right after waking up.

 Starting the day with a glimpse of natural light can be soothing and cheery at the time, but it also may provide some significant ongoing health benefits.

 


Sunlight (or UV lighting) isn’t just a treatment for seasonal affect disorder anymore.

 Experts agree that, although excessive exposure to sunlight may cause skin cancer, sunlight can aid in resetting the body’s circadian rhythms (internal clock), adding vitamin D, generating emotional well-being (by boosting serotonin and melatonin in the brain), improving vision, easing certain skin conditions (eczema, psoriasis, and vitiligo), treating jaundice, reducing blood pressure, and perhaps helping with weight management.

 Scientific American says it may help with cognitive fog, fatigue, inflammation, lethargy, and other symptoms common to MS. The National Library of Medicine offers support of the theory that sunlight (or light therapy) can reduce MS-related fatigue.

 A 2021 study published in Neurology magazine suggested that children and young people spending considerable time outdoor in summer months might be less likely to develop MS than those who did not.

 Some actually use ultraviolet light boxes to self-treat autoimmune diseases like arthritis, Crohn’s, colitis, diabetes, and more. Oh, and multiple sclerosis.

 

Step outside, if you can!

 Direct sunlight is a known source of vitamin D, which is healthy for everyone, but especially difficult to build up for many MSers. It seems we can’t get enough of it. A short jaunt outdoors (or perhaps a brief stop to read a chapter of a good book) can be just the ticket.

 

Sunshine before screen time

 There’s something to be said for taking a few moments to breathe deeply and enjoy a peek at the outdoors before picking up the phone, tablet, laptop, TV remote, or other screened device. Starting the day with a pause seems like a healthy thing to do – especially as a stress-buster. It’s a way of changing the channel before jumping into the plentiful concerns of the day.

 Personally, I love to open the blinds and let the sunshine in (or just natural light, if it’s a cloudy day) and then crawl back into bed for a few minutes. Sometimes I can spot birds, rabbits, or other delightful sights. It’s a great time to ponder the day to come and think through my plan of attack, so to speak. Even that is likely to start a new day in an intentional and deliberate way.

 Hey, it can’t hurt.

 

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Saturday

Lost my glasses atop my head again!

  

Stop me, if you’ve heard this one. Heck, you may have done it too!

 Blame it on MS fog, if you want. Because vision issues are common among those with multiple sclerosis, we tend to wear eyeglasses regularly.

 How many times have I searched for my eyeglasses, only to find that I am wearing them on top of my head?  (True confessions: I’ve done this with sunglasses too. My kids tease me repeatedly about the time they caught me with a pair of sunglasses and a pair of eyeglasses riding on top of my hair.)

 


Is it really such a terrible idea to wear glasses on top of your head? Maybe.

 Hair products, natural oils and sweat can muck up your glasses. And it’s hard to move those eyeglasses around without leaving fingerprints on the lenses.

  1. Eyeglasses can bend stretch and lose their proper fit by sitting atop your head. No one likes wearing wiggly spectacles!
  2. After repeated wearings, eyeglass hinges loosen and break. (And how can you see what you’re doing with those tiny eyeglass repair kits, if your glasses are broken? That’s right. You need another pair of glasses to do it!)
  3. Too-tight eyeglass frames can give you a headache, and MSers already have plenty of those.
  4. Oops? Glasses tend to scratch and break when they fall off your head too many times.
  5. Hats don’t fit, if they are put on over those glasses on your head.
  6. Eyeglasses aren’t actually helpful, unless they are on your eyes.

 OK, we get it. But we do it anyway. We give our eyes a break and stick those glasses up on our heads, regardless of the consequences. Plus, a pair of eyeglasses can make a handy headband.

 Complicating matters further, many of us stash our glasses on our necklaces (or neckties), on the front opening of a shirt of sweater, or simply loose in a pocket. Those special specs can get crushed, smashed, or dropped. (Don’t even ask me what happens when the glasses are stashed in a back jeans pocket. It wasn’t pretty.)

 I’ve worn my glasses riding on top of my head, tucked in the neckline of a shirt, or dangling from a necklace more times than I can count. That’s why I sometimes look like I am dancing the Macarena while looking for them.

 Eyeglasses belong in their protective cases, whenever we aren’t wearing them to see. But what if we can’t remember where we put those cases?

 

It’s a quandary for sure.

 Good thing I stock up on those cheat cheater-readers. I’d sure hate to lose or damage pricey prescription eyeglasses!

 Now, if I could only find my car keys …

 

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Image/s:  Adapted from public domain photo

 

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Friday

Chocolate can be the kiss of death with multiple sclerosis

  

Raise your hand, if you love chocolate. OK, maybe not so fast.

 Chocolate is a major trigger for headaches, especially migraines. And migraines are common among those battling multiple sclerosis.

 Sure, that’s not good news, especially during holidays like Christmas, Valentine’s Day, Easter, Halloween, or … well … you get it.


  But identifying triggers that can be eliminated (even disappointingly) can sure be good news.

 Maybe tyramine is to blame. That’s a component of chocolate. Caffeine maybe factor, although that’s also found in some headache remedies (such as Anacin or Excedrin). Whopping amounts of sugar can also lead to headaches.

 For any or all of these reasons, chocolate is not the headache sufferer’s friend. (To make matters worse, chocolate is a common craving during PMS for women – a time when we may be particularly susceptible to headaches anyway.)

 I used to love chocolate. But once I discovered that consuming chocolate would lead to headache hangover, I was only too happy to give it up.

 Here’s a hint. Dark chocolate seems to be the worst culprit, when it comes to chocolate-triggered headaches. White chocolate is the lesser foe, and milk chocolate falling somewhere in the middle.

 So chocolate is the kiss of death for those who are prone to headaches. It won’t exactly kill us, but it can lead to death-defying pain in the brain. 

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Saturday

Too much! Too loud! Overstimulation awakens MS

  

It’s easy to become overstimulated in these busy times. We are bombarded with images, messages, noises, smells, and other stimuli – even in our own home. And when we go out, even if we aren’t agoraphobic or claustrophobic, we often face crowds, traffic, and commotion. 


Overstimulating situations can take many forms: 

  • a rush-hour traffic jam, with honking horns and lane-hopping drivers, while the radio is playing
  • a family dinner, with everyone talking at once
  • a loud restaurant with booming music, clanging dishes, and boisterous diners
  • a grocery checkout line, with PA announcements, impatient customers, your own kids in tow, and a hurried cashier
  • a too-loud TV or sound system, especially if you’re trying to focus on a project
  • multitasking on deadline

 I bet you can come up with even more triggers of overstimulation. Essentially, volume and chaos are key contributors. Even sitting at a computer with too many tabs or windows open at one time or trying to work at a cluttered desk or counter may set things off. Of course, everything goes up a few notches with illness, injury, insomnia, or a crisis in the mix. 

And ladies: Toss in PMS, pregnancy, or menopause, and all bets are off.

 

Sensory overload is a neurological circus, and it is common with MS.

 We may experience this in several ways, such as: 

  • agitation
  • anxiety
  • aversion to touch
  • concentration problems
  • confusion
  • disorientation
  • distraction
  • dizziness
  • feeling faint
  • frustration
  • muscle spasms
  • numbness or tingling
  • overheating
  • oversensitivity to light (especially flashing lights)
  • physical pain
  • speech difficulty
  • sudden-onset fatigue
  • sweating
  • tremors
  • and more.

 You know, it’s basically the whole kit and caboodle of MS symptoms. But they seem to subside, soon after the overstimulation diminishes.

 

What can MSers do about this?

 Turning down the noise is key. But it’s not always possible.

 Noise-canceling headphones can help. (I frequently wear the big old-fashioned headphones while working at my own desk at home. And I don’t even plug them in. They help to cut the overstimulation clutter in my own home, where loud phone conversations and high-volume TVs can become uncomfortable and overstimulating.) Playing calming music through those headphones is a plus for others.

 Wearing sunglasses and selecting glare-reducing eyeglasses (if you wear glasses) may minimize some visual overstimulation. Night-driving anti-glare glasses are available. Also, polarized glare-reducing sunglasses can be found to fit over regular eyeglasses.

 Softer-glow light bulbs (or dimmers) ease some of the harsh stimulation of the brighter ones.

 Stepping away from chaotic situations may be an option sometimes. I’ve left often left crowded rooms during noisy gatherings (even for a few moments) or stepped outdoors for brief walks and fresh air.

 Simplifying our schedules can help as well.

 Stress management techniques do wonders for those who must deal with overstimulation. A lot of these involve finding moments of privacy and quiet. Some folks practice prayer, quiet time, meditation, gentle exercise, yoga, slower and deeper breathing, singing, reading, and other means of reprioritizing their attention and reducing sensory clutter for a while.

 The hardest step is often to recognize when we are growing overstimulated before it throws us into MS turmoil. There are times when it simply happens without warning. But even identifying the problem can make it a bit more manageable.

 Turning down the noise is a sound decision, when we can. 

 

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Image/s:  Public domain photo/s, Pixabay

 

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Hot tubs can put MSers in the soup

  

Jumping in the Jacuzzi may sound appealing when muscles spasm and joints ache. Whiling away time in a steamy whirlpool can sound soothing.

 

  Lounging in a steamy hot tub may rejuvenate some folks, but it can utterly wipe out someone with MS.

 

Not so for anyone living with multiple sclerosis.

 The hot tub can be one of our worst enemies, when it comes to managing life with MS. It’s pretty much on par with a sit in the sauna, when it comes to triggering MS troubles.

 Heat is not our friend. (Actually, extreme temperatures in either direction can set off our symptoms.  But overheating is a big baddie for us.) 

 Is a sauna soothing for someone with MS? Not so much.

 Uhthoff’s Phenomenon (aka Uhthoff’s Sign) is a classic experience among MSers. When the body temperature goes up, our neurological symptoms generally increase too. That means a cozy dip in the hot tub can invite extra balance problems, blurred vision, confusion, dizziness, fatigue, numbness, pain, tingling, weakness, and other MS woes.

Once our bodies cool down again, some of those symptoms may subside, usually within 24 hours.

 Is it worth all that, just for a short jaunt in the jetted tub?

 

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MS can do a triple whammy on vision

 Any multiple sclerosis battler knows there’s a lot more to MS than meets the eye.

 Here’s what the National Multiple Sclerosis Society has to say about MS and vision:

“Vision disorders are the first sign of multiple sclerosis for many people. The 3 most common disorders are optic neuritis, diplopia (double vision) and nystagmus. While these conditions can be frightening and uncomfortable, the prognosis for recovery is good with treatment.”

 


Here’s a quick peek at each of the most prevalent vision-related issues for those living with MS.

  1.  Optic neuritis – Caused by an inflammation of the optic nerve, this can be a painful and troublesome symptom of multiple sclerosis. It usually shows up suddenly as blurred vision (often tunnel-like) or dimmed vision, often with blind spots and blurred colors. Affecting one or both eyes, optic neuritis also may bring sensitivity to bright lights and a flashing sensation with eye movements. Untreated, it can last months, although it may abate sooner for some with steroid treatment.
  2.  Dyplopia – Commonly known as double vision, diplopia causes blurriness and decreased depth perception. This can affect one or both eyes, and it can be uncomfortable or even painful. During a bout with this, a person may be extra vulnerable to falling and is unlikely to be able to drive or operate machinery safely.
  3.  Nystagmus - This condition is marked by rapid involuntary eye movements, which can be rhythmic and may move up and down, side to side, or round and round. Vision (in one or both eyes) becomes blurred and distorted. This can result in dizziness, a feeling of disorientation, and headaches. Nystagmus may result from issues with the brain, ears, or eyes – all of which can be affected by an MS flare-up.

 I’ve had personal experience with all three of those – and sometimes at the same time. Such flare-ups are usually accompanied by vertigo and often a feeling of motion sickness (with nausea), and they generally bring on or aggravate a migraine headache.

 

What about recovery?

 For many MSers, recovery can happen, at least until the next exacerbation or relapse. Then the symptoms (including vision issues) can crop up in the blink of an eye. (Sorry, had to.)

 For many, these vision symptoms may clear up on their own in time, at least for the most part. In stubborn cases, doctors may prescribe steroid treatments (intravenous or oral or a series of both), as this has been proven to shorten the vision attacks in plenty of cases. Although these can be helpful, they are not without side effects, so it’s important to discuss this option with the physician before taking such treatments.

 MS symptom triggers can beckon back these vision issues, even without a full-blown MS flare-up or new demyelinations/lesions. For example, I almost always experience blurred and bouncing vision when overheated. If I can find a way to cool off, my eyesight improves quite a bit.

 

Can eyeglasses or corrective lenses help with MS-related vision problems?

 Because all of these concerns are neurological in nature, they cannot be eliminated by the wearing of spectacles or contacts.

 Occasionally, a doctor will instruct an MSer with vision issues to wear an eye patch over the offending eye for a while, particularly if double vision and/or dizziness are evident.

 It’s important for each individual to keep an eye on his or her vision (so to speak). Eye pain and eyesight problems can point to many other health concerns besides an MS exacerbation. If these or other vision-related symptoms arise, it’s time to consult a neurologist, ophthalmologist, or other medical expert.

 

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 Image/s:  Adapted from public domain image.


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Friday

Can MS mess with your handwriting?

 

I’m pretty sure living with multiple sclerosis has something to do with my penmanship becoming nearly illegible chicken scratch.

 I’m having flashbacks to elementary school, where we sat and scratched out basic cursive writing on those tri-lined newsprint note pads for hours on end. We weren’t allowed to quit until our letters matched those on the cursive ABC strip that lined the top of the blackboards at the front of the classroom. 


  Now in middle age, I find my never-perfect, but perfectly acceptable, penmanship has turned into a sketchy scrawl. Can I blame this on MS, or could it be attributed to some other factors?

 Is my sloppy scribing from aging and arthritis, carpal tunnel syndrome, writer’s cramp, or MS spasticity?

 Or perhaps I’m simply out of practice, because of my current reliance on typing and dictating to Siri (who has a frequent affinity for homonyms, which can be downright hysterical at times).

 If you live with MS, have you noticed a change in your own handwriting?

 

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Monday

What is it with MS and sleep apnea?

 

Sleep can be a common concern among those with multiple sclerosis. Possibly up to 60 percent of MSers struggle with some sort of sleep disturbance. Sleep apnea is a frequent contributor to this issue.

 


What is sleep apnea?

 This is a condition that causes a person’s breathing to stop and start unpredictably during sleep. During those intervals (which may last for several seconds or more), the body is deprived of ample oxygen. An individual may gasp and awaken, or slightly stir and resume breathing. Each time this happens, it’s called an apnea, and it can occur many times each hour throughout the night.

 Experts say approximately one in five American adults may suffer from sleep apnea, although many may not be aware they have it. (Often, it's identified after a sleeping partner complains enough about intense and sudden spurts of snoring that a person seeks medical advice for it.)

 

What are the symptoms of sleep apnea?

 People with sleep apnea find themselves extra tired during the day. They might wake up with frequent dry mouths and nagging morning headaches.

 

What are the risks of sleep apnea?

 Untreated sleep apnea can be deadly, or at least add to potentially fatal conditions. Some researchers claim it can take as much as 10 years off a person’s life, largely because it increases a person’s vulnerability to high blood pressure, strokes, and heart attacks. (This has something to do with decreased blood oxygen levels that occur during each apnea episode.)

 

How does sleep apnea play into MS?

 Specialists have identified two types of apnea.

  1.  Obstructive apnea occurs when the muscles in a person’s throat and nose relax (usually during sleep), blocking the airway and stopping breathing momentarily. This is the type that is commonly associated with loud, sputtering snoring and most often with obesity. Smoking is a risk factor as well.
  2. Central apnea occurs when the brain fails to direct the body to breathe for a short interval. This may be more of a neurological issue. (That concept sounds familiar to anyone with MS and how it can pay tricks on all sorts of body part and functions.)

 MSers are widely regarded to be at higher risk for both kinds of apnea. Neuroscientists have pointed to reduced brainstem function issues as possible reasons for this, such as may be caused by demyelinating lesions that may be caused by MS over time.

 Whether obstructive apnea, central apnea, or some combination of both, this sleep disorder wreaks havoc when it strikes someone living with MS. Even without MS, sleep apnea tends to make people extremely sleepy all day long, due to the diminishing of quality sleep overnight. MSers already face bouts of (or ongoing struggles with) a crushing fatigue that is nearly indescribable.

 When sleep apnea prevents quality sleep, it considerably complicates this battle. The lack of rest can also aggravate memory loss, increase accident risks, lead to depression, and worsen diabetic symptoms (for MSers with that comorbidity).

 Certain medications frequently used to alleviate MS symptoms may make sleep apnea worse. These include those prescribed for insomnia, pain, spasticity, and more.

 

What can be done about sleep apnea?

 Once sleep apnea has been diagnosed (usually through an at-home of in-lab overnight sleep study, ordered by a neurologist or other physician), the patient will likely be prescribed treatment using a CPAP (continuous positive airway pressure) machine. This regulates breathing during sleep, piping humidified air into the person’s airway via a special mask. In many cases, sleep apnea may also be lessened somewhat when a person stops sleeping on his or her back.

 It can take time and practice to adjust to CPAP treatment, especially the wearing and breathing through the mask while sleeping. (Trust me. It can take weeks or even months to get used to it!) But this adaptation has been shown to reduce sleep apnea episodes (as well as their duration), and eventually to improve restorative sleep and rest.

 That’s worth plenty to an MSer.

 

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Friday

MS comorbidities: Welcome to the party!

 Multiple sclerosis is a wacky disease. Ask anyone battling it. The constellation of possible MS symptoms is baffling to contemplate. Experientially, MS brings a host of surprises, as the MSer’s body seems to betray him or her in all sorts of surprising (and seemingly unrelated) ways. 

 

 Vision disturbances can crop up. A limb may go numb for a while or longer. Incontinence may sink in. Spasticity might strike. Walking can become difficult. Vertigo could stop by for a spin. Fatigue might suddenly become overwhelming.

Once diagnosed, we find it’s easy to blame all sorts of health complaints on MS. On the other hand, MSers can be prone to several other illnesses and complications. That’s called comorbidity.

 


What are the most frequently found comorbidities with MS?

Here’s a garden variety:

  • anxiety
  • arthritis
  • asthmatic bronchitis
  • cardiovascular disease
  • chronic lung disease
  • cognitive/memory issues
  • deep vein thrombosis
  • depression
  • diabetes
  • high cholesterol
  • inflammatory bowel disease
  • migraines
  • obesity
  • psoriasis
  • sleep issues
  • stroke
  • thyroid disorders
  • urinary tract infections
  • and more.

 In many instances, medical experts aren’t altogether sure whether MS causes a certain comorbidity or vice-versa. For example, MS can cause a person to live a more sedentary lifestyle, which could lead to (or aggravate) blood pressure issues, diabetes, heart or lung disease, obesity, and other ailments.

 Additionally, comorbidities may arise together, perhaps randomly. And lots of medical conditions share symptoms, so it may be difficult to pinpoint whether a symptom stems from MS or from an existing comorbidity. 

Comorbidities can also delay and complicate a person’s initial diagnosis of MS, as symptoms of other conditions may mask MS’ appearance. They can also make MS treatment more difficult to manage and may even set the stage for MS to progress faster in some patients.

 It’s a crazy world out there, especially with the less-than-pleasant bonus of comorbidities with MS.

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Saturday

Dizziness isn't always all-ears

 

Whirling vertigo often begins in the ears … but not always. Ask anyone with multiple sclerosis or migraines. Better yet, ask anyone with the double bonus of both. The combination abounds!

 Vertigo can be a symptom of migraine. And it’s extra special when it comes from an MS migraine, which is an entity (or agony?) all its own.

The American Speech-Language-Hearing Association put it this way:

 Specifically, vertigo, which is the sensation of perceived motion without actually moving, is reported by up to one third of people who have migraine, and general dizziness or unsteadiness is reported by up to three quarters of all patients with migraine.

The folks at Johns Hopkins Medicine point to vestibular migraine as a frequent source of vertigo and related symptoms:

 Migraine headaches are a common neurological condition. Although common migraines are characterized by a moderate to severe pounding or throbbing headache, vestibular migraine may or may not involve headaches in combination with vestibular symptoms such as vertigo, imbalance, nausea and vomiting.

Stanford Medicine agrees:

 Unlike the classic migraine, which is described as severe, throbbing headache, vestibular migraine has no pain associated with it 50% of the time. Vestibular migraine causes episodes of dizziness described as rocking, spinning, floating, swaying, internal motion and lightheadedness. They most often occur spontaneously, but can be triggered by stress, sleep problems, skipping meals, dehydration, other illnesses.

 Wow. So it’s possible (and not even unlikely) to have a migraine without suffering a severe headache.


Finally, someone’s talking my language!

 After years of going around and around (See what I did there?) with my primary care physician, in which he insisted that my frequent and severe vertigo / lightheadedness / dizzy / off-balance symptoms were caused by inner-ear crystals (including multiple physical therapy sessions for this diagnosis, which proved unfruitful and actually aggravated my symptoms, I found this migraine-related information to be a complete game changer.

OK, for the vast majority of vertigo sufferers, a simple physical therapy maneuver can work miracles. (Got vertigo? Try this first!)  But for the MSer (or anyone with central vertigo, rather than benign positional vertigo) or the migraineur, it generally proves a bust.

 I’ve had migraines since my Junior High years. But they always used to include major headaches. And apparently vestibular migraines (and the frequently associated vertigo) are most common among those who were particularly susceptible to motion sickness, especially as children. Bingo! That was me.

 Enter MS. Within the past few years (especially since hormonal changes kicked in with a vengeance), my migraines have evolved. Sure, I occasionally have the head-in-a-vise pounding variety. But more often, I battle a dull headache behind the agonizing whirling and unsteadiness of vertigo.

 Thankfully, my MS doctor affirmed my description of symptoms and flat-out said the frequent (sometimes daily) vertigo I face is related to migraines, which are common with MS. As such, she recommended avoiding food-related migraine triggers (as I already do), getting much-needed rest, drinking plenty of water, and taking travel-sickness medication when vertigo strikes. (See Simple OTC product helps vertigo?)

 That means no more neck twisting, which only aggravated some of my existing MS demyelination and didn’t fix the lightheaded spinning problem anyway.

 

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 Image/s: Excruciating Headache, M. Egerton, 1827, public domain

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