Tag Archives: MS symptoms

The Sensitivity of MS Symptoms

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“It’s only a Pay Day”

November 5, 2012

Two days ago I participated in two events that lasted all day with only a two-hour break between them. I normally only plan one outing per day, but both events were very important to me and just happened to fall on the same date.

When I planned for the events, I knew I would be fatigued and my MS symptoms would be whacked out afterward. So I made sure I got a good night sleep the night before, planned to lie down for an hour between events, then do absolutely nothing else the rest of that day when I returned home.

The fun and adrenaline enabled me to sail though the day. And sure enough, I returned home exhausted but fulfilled. The mental and emotional satisfaction was worth the physical stress I endured. After some Chinese take-out, I went to bed.

Yesterday, after nine hours of sleep, I woke up still feeling wiped out. It felt like I had a virus. My muscles ached all over, I felt nauseated and dizzy, and all I wanted to do was lie down. Not only did I have overwhelming fatigue, but many of the symptoms I handle with my own case of multiple sclerosis were intensified. The spasticity flared to the point that my legs were “frozen” straight, the pain in my back was unbearable, and the bladder medication wasn’t working. My mental faculties were off– I couldn’t concentrate and I kept forgetting things. Both hands were exceptionally tingly and weak.

It was a “pay day”.

I knew from experience not to freak out. A couple of days of mostly rest and minimal activity would calm the symptoms; I would revert back to my “normal” state. It was just a temporary worsening of symptoms triggered from the excess stress. And I also knew from experience that I didn’t do any permanent damage to my nervous system.

Neurologists like to use a fancy term for this, and call it a pseudo-exacerbation. I don’t like that term because to me it is misleading, implying an actual flare-up or attack. But it’s not! I was “paying” for overdoing it on the previous day, which is why I call it a “pay day”.

It’s like a hangover after a night of too much wine! Rest up, drink plenty of water and eat well. All will pass. Once in a while it’s okay to do this; but if you over indulge everyday then it become a chronic problem.

Any stress can intensify symptoms, as well as other things such as heat, hormones, or even forgetting to eat. I know from experience what causes my symptoms to temporarily worsen, and I know how to manage to call them down.

Aggravating and annoying? Yes. Cause for worry or calling the doctor? No.

I’m still extra fatigued and not quite my “normal” self after that long day I had. But it was worth over indulging and I will do it again.

www.DebbieMS.com

Managing MS vs. Living with MS

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“Are they the same thing?

October 1, 2012

Is there a difference between Managing MS versus Living with MS? Yes and no. It depends on who you ask.

On September 24, The NPR Diane Rehm Show aired “Diagnosing, Treating and Living with MS. A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

My first response after listening to the show was that the doctors in the discussion did not truly address “living with MS.” The responses were dominated by treatments and medications that patients should take. Questions that were asked about symptoms like spasticity and fatigue or lifestyle activities like diet, stress and exercise were glossed over with comments like “research hasn’t yet shown…” or reverted back to the necessity of getting on a treatment ASAP.

I have had MS for 32 years, and while I think the treatments available and new ones on the horizon are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal.

Management of MS should be a two-pronged approach: medicinal AND non-medicinal. A person should not only rely or be concerned about drugs to solve their problems with MS. It’s not enough to just “live with it” and think that having an injection or popping a pill will magically take away or minimize the problems MS burdens a person with.

There are numerous things an MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease without the drugs. But this all takes knowledge, support, work, dedication and discipline. There’s no easy way out of it, but trust me, it works!

First, a healthy lifestyle should be maintained to prevent illness, stress, etc. that can help minimize further relapses/damage to the CNS. This means keeping your resistance up and body healthy through proper exercise, diet, stress management, sleep/rest etc. Illness/infections often trigger a relapse by activating an immune system response with subsequent damage to the CNS. Extra precautions to prevent accidents/falls (like using disability aids) would help accomplish the same thing.

Second, there are many things a person can do to manage symptoms. For example, I suffer with much spasticity; by doing daily stretching/exercising, while taking baclofen (a medication to reduce spasticity), the stiffness and tightness is greatly reduced for me. Another example is the importance of learning good bladder management from a neuro-urologist. Eighty percent of persons with MS will suffer from a bladder issue at some point. Putting up with a leaky bladder by wearing pads is not only distressing, it is dangerous. Urinary tract infections (UTI’s) are common and can lead to complications and undesirable consequences.

Understanding the sensitivity of MS to so many factors that intensify symptoms can enable a MSer to take certain actions to calm their symptoms. A prime example is the negative effect that heat has on symptoms like fatigue, endurance, balance… One can learn easy ways to counteract it quickly by using a cooling vest, ice packs, drinking ice water and taking a cold shower. Fatigue—the hallmark symptom of MS that affects 90% of MSers—is another symptom that can often be managed by frequent resting, lifestyle changes, support from others…

Alternatives therapies have helped physical, emotional, and mental issues for many, many folks with MS. These things include yoga, trigger-point therapy, pilates, deep breathing, tai chi, reflexology to name some of them. Finding things to make a person feel better goes a lo-o-o-o-ong way. Some things work for some better than for others, but how do you know if you don’t try them?

After the Diane Rehm show was over, the doctors continued to answer questions submitted by people. Dr. William Shaffer, an attending neurologist who also has lived with MS since 2002 had this to say in response to a couple of off-the-air questions:

“The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.”

“I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.”

Finally, one of the doctors had this remark: “We encourage patients to really think about lifestyle issues, to maximize their activity and exercise, and also to maximize healthy diet, because we now know those things do impact the amount of residual disability people have.”

I wish that comment had been made and talked about during the show.

So if you asked me if there is a difference between managing MS and living with MS, I would respond “yes!” Managing MS should be an integral part of living with MS. I know many people who have had MS for 20-30+ years and I know they would respond to this question the same way.

But the opinion of the person with MS is what ultimately matters. Do you want to just live with MS, or do you want to take some control and manage your MS while living with it?

The choice is yours!

For more info about me and what I am talking about, please go to www.DebbieMS.com

MS Treatments

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“What to Take–What to Do?”

August 6, 2012

There is no cure for MS. But there are options available to treat the symptoms, relapses and the course of the disease.

To keep things simplified, there are three groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Agents.

Medications

These are used to treat the symptoms of MS, and the use can be short or long term. They minimize the intensity or effect of symptoms so the quality of life and daily function is more manageable. Examples include antidepressants for depression, baclofen for spasticity, Ditropan for incontinence and so forth.

Corticosteroids

Corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). The administration of these drugs is high dosage over a short term (3 days to several weeks).

Disease-Modifying Agents (DMA’s)

Disease-modifying agents (also known as DMD’s—disease-modifying drugs) reduce the progression and activity of the disease. The FDA has approved ten of them now, and much research is occurring to continue to find more. Most of them are for folks who have the relapsing-remitting form of MS, or for those who have secondary progressive disease who continue to have relapses. They are given regularly mostly by injection over the long-term.

Most people with MS have used drugs in at least two of these categories. Some work for some people and some don’t work at all for others. If a drug is tried and doesn’t work, then something else can be tried. Every persons responds to drugs differently.

Medications and Corticosteroids have been tried and used for decades. Disease-Modifying Agents started becoming available in the nineties. Today, as I participate in online discussions and forms, it seems that almost everyone with MS is on one of these. Patients are strongly advised to get on one as soon as possible by neurologists, and the MS Society.

But taking DMA’s is a difficult regime. There are side effects, require much monitoring (doctor visits, MRI’s, clinic visits…), and they are expensive. While some folks get financial assistance through the drug companies, being a clinical trial participant, etc. many others pay thousands of dollars annually out-of-pocket.

And then the recent news comes on July 17th that a “Study Suggests That Interferons Did Not Reduce MS Progression”.

WOW! Can this be true? After all those years of injections, tests, office visits, side effects, dollars spent…. Now what? And what should a newly-diagnosed person do now about starting interferons?

I have had MS for 32 years and never took a DMA for various reasons. That is my personal decision. Throughout the years I have taken medications and steroids to help me with both symptoms and relapses. However, I would never tell any one not to take them. That is their personal decision.

So, what should one do about the recent news about interferons?

Whenever I have considered any medication over the years I followed these steps and offer them to you for your own consideration:

1.) Make sure you research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc.

2.) If you are on a drug, are the benefits outweighing the risks?

3.) There is no magic pill or injection to make MS go away. There are many other things someone can do to manage MS effectively to complement any drugs you are taking. This includes health and wellness (exercise, sleep, stress management…) and alternative therapies (massage, yoga, pilates…)

4.) Doctors aren’t always right. Persons with MS know their bodies best and should have the final say.

Take your time with making a decision. A delay of several weeks or months will make little difference in the overall course of your MS.

It’s common sense, your body and your decision.

www.DebbieMS.com

Massage Therapy: Guest Post

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“Beneficial for Many Conditions”

July 27, 2012

I was approached by Melanie L. Bowen requesting me to consider a guest post for my blog. After reading the article about the benefits of using massage therapy during cancer treatment, I agreed.

When reading her article that follows, you can substitute “MS” every time the word “cancer” is used. Massage is an excellent therapy for persons with MS, giving relief for both body and soul. And this would be true for other chronic illnesses/conditions as well.

Using Massage Therapy During Cancer Treatment

Massage therapy is a growing career field, as most people love to indulge in a good massage. Those who become massage therapists usually do so in order to help people relax. What can be especially satisfying for the therapist is the knowledge that he or she is making a real difference in the life of someone who particularly needs extra special care. That person could be aged or suffering from an injury, from stress or from a chronic illness, such as cancer.

There are many complimentary therapies that can be used alongside traditional cancer treatments. Most doctors now support the use of massage therapy to ease the physical discomfort, anxiety and fatigue that often accompanies having cancer. Depending upon the type of treatment chosen and the stage of disease advancement, the physical effects may be severe.

For example, when a person is suffering from mesothelioma, the pain and stress can be quite overwhelming. Massage gives you the opportunity to help alleviate the emotional distress and physical pain often experienced with this diagnosis.

The benefits provided are numerous. Massage therapy during cancer treatment is considered an integrative intervention. Through skilled hands, you can:

• Increase the flow of blood and lymphatic fluid, helping the body to flush itself
• Ease muscle pain from spasms and built up tension and toxins
• Augment the effects of pain medication while stimulating the release of endorphins
• Decrease inflammation, edema and swelling

There are some precautions to follow while getting a massage while treating cancer. Soft tissue areas should be avoided like:

• The tumor site
• An open wound, a tear or an area of skin breakdown
• A radiation site
• An area effected with redness, pain, swelling and warmth

Current medical and professional studies now demonstrate the efficacy of massage therapy in assisting those with cancer in managing their pain, anxiety, fatigue and depression. Sadly, cancer is increasing and many of those diagnosed are going to look for complementary and alternative medical therapies and integrative interventions.

Keep in mind that there are very minor risks involved in using massage therapy during cancer treatment as long as a physician has given the green light. Massage therapy used during this time in a client’s life can truly make a difference in his or her physical comfort and mental state. Without a doubt, this is one of the most rewarding experiences that you can have.

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For MS patients receiving injections for DMA’s, the same precautions should be followed for soft tissue areas.

I was curious after reading Melanie’s article about insurance coverage for massage therapy for MS and did some research. Medicare said they will cover 80% of the cost, as long as the massage is done by a licensed massage therapist who is employed by a physical therapy facility/center. My insurance carrier, Highmark Blue Cross/Blue Shield, will cover 100% under the same requirement! BC/BS told me this is something they just started in 2011.

So it is worth inquiring about massage therapy with your private carrier. After all these years, it is finally getting the recognition and support it deserves from both doctors and insurance companies.

For those of us with MS, massage is not just a luxury for sore muscles, pain and spasms. It is a necessity, and certainly worth pursuing.

Thank you Melanie, for your contribution and efforts!

www.DebbieMS.com

Stress Management

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“The $1 Million Question: What to Do?”

July 23, 2012

Stress has been analyzed for years to determine if stress affects the body. I roll my eyes at these analyses. Personal experience with MS and anyone with MS I have ever talked to knows stress has a direct impact on us in the short or long term. Or any other chronic disease for that matter.

It doesn’t take a rocket scientist for us to also know that ALL types of stress—physical, mental and emotional–has an impact on MS. While MS research hones in on triggers that bring on MS—viruses, vitamin D deficiency, genetic factors for instance—it seems that the final kicker to bring out the initial MS attack is often the result of an extremely stressful event such as:

*an accident, injury, or sickness

*a horrendous altering personal situation (for example, death, divorce, new  baby, job loss, etc.)

*long-term chronic fatigue from being overworked (such as simultaneouslyworking, raising a family, and running a household while neglecting one’s health…)

And these same long-term chronic stresses can be the precursor for more flare-ups or exacerbations as life goes on. These are serious events that require serious attention.

So let’s forget the “if” in the stress factor and focus on the “what to do about it” part, because that’s what really matters.

The goal? We want to prevent it, minimize it, and/or resolve stress. The buzz-words used today for this is stress management.

Unfortunately, stress is like anything else in today’s society. It comes in countless varieties—type, intensity, duration, onset, frequency—and there are always more than one to deal with. So for starters, one has to sort out what the stresses are and then what’s causing them. Then we can proceed with prioritizing them and finally managing them. It sounds complicated because many times it is. But going through a process to handle them lessens the overwhelming, impossible feeling they give us and helps us focus on the important ones first.

Let’s start with the first bullet above. Obviously, if we have an accident, injury or sickness, we take steps to get cured or better. During this process our symptoms are in the crazy zone from our defunct immune system, medications, fever, etc. So while we are recovering from our physical problem, we have to address the other associated stresses (pain, medication side effects, fatigue, undone domestic chores…).

It’s hard to be patient during this relapse, but it helps if you try to stay calm and focused on the fact that: when the injury/sickness is better, the symptoms will be better. The state of mind and a positive attitude is a powerful force on our well-being and healing process.

Furthermore, it’s important to takes measures to prevent these things from happening in the first place. For example, if you have a mobility problem from fatigue or balance issues, use walking aids to prevent falling and muscle strain; if someone has a cold or flu, don’t go near them…

In the other situations above, when things happen that are out of our control (death, job loss, overworked) stress can be minimized/resolved and here’s how:

    • First and foremost, take care of yourself and your health. Ensure that you eat and sleep. Self-control and mental/emotional effectiveness is enhanced while resistance to getting sick is maintained. Let’s face it, we know how we (re)act when we are tired or hungry. I freak out when I am tired and my husband is a beast when he is hungry; so I head for the bed and he heads for the frig.
    • Seek help and support from others to lessen the burden. Professional counseling, peers and support groups are invaluable for sharing, caring, problem-solving, finding connections and venting in a “safe” environment. Reach out and ask for help from friends, family, neighbors, your religious association, etc. for physical, financial, domestic issues. If you are concerned about humbling yourself or feeling ashamed, don’t be. You would do it for them; let them help you.
    • Learn to say “no” to anything that would overtax you, no matter what the circumstance. List your priorities, and review it frequently.
    • Figure out ways to change your lifestyle. Again, rely on others to help. I was a perfectionist, an independent person, and a constant doer. Therapy and unrelenting fatigue transformed me into a non-perfectionist (so what if the house didn’t get cleaned?), a more dependent person (I let others clean, cook and wash for me), and less of a doer (I made the time to rest in a quiet room at various intervals).

In contrast, short-term stress will cause a worsening of symptoms from an hour up to a day or two. The good news is however, that short-term stress can be remedied quickly and easily when identified.

This can include anything like lack of sleep, an argument, heat or allergies. Having an argument with my husband will frustrate me, causing me to drop things more and throw my legs into spasms. So I take a time-out and find ways to de-stress such as swim/exercise, take a walk around the block, read, phone a friend, read, shop on the internet, deep breathing….whatever works to calm down. Then I am better able to think and cope.

If I’m hot, I’ll cool myself down with ice water or ice packs. Showers and baths are definitely rejuvenating. When I start a new drug, I may have side effects; if the effects don’t reduce in a week or two, I might decide to stop them if the side effects are worse than the benefits I am receiving from them. If the monthly menses are causing too much havoc, it’s time to call the gynecologist. I personally was on a birth control pill for hormone management for years to help me with this problem.

In the past, I have talked to my physicians about different medications to try to help with the stresses/effects of things like depression, anxiety, or insomnia. These are very common issues with MS, and there is nothing wrong with taking something to help us cope. I have successfully used antidepressants, anxiety pills and sleeping aids intermittently over the years.

There is a lot of merit in new alternative therapies such a deep breathing, yoga, pilates, and tai chi to name a few. I have tried them all, and they provide great benefit for relaxation as well as aiding problems associated with symptoms such as weakness, balance, endurance and fatigue. These can be learned from videos, online resources, and local clubs/associations/ MS chapter programs.

There are ways these techniques can be incorporated into daily activities. For instance, deep breathing can be done while showering. Standing on one leg while doing dishes can help with balance.

Whatever it is that can help—medications, alternative therapies, therapy/self help groups etc.—it never hurts to try it out and see if it works for you. As with anything, what works for one person may not work for someone else. And I always say—“Two heads are better than one” in figuring out a problem or solution.

If there is no clear-cut problem or solution, find a peer to talk to. It’s comforting to just unload stresses, secrets and complaints to get it off your chest. There is no one better than a peer or a good, loyal friend to “dump” on. They would do it for you as you would do it for them. And, yes–“misery loves company.”

Finally, it’s okay to just go ahead and vent! Go into a room alone, close the door, and let it out. Scream, yell, cry, swear, or throw pillows. Most of the time I do very well, but then that moment arrives. I give myself a break to let go and lose control. Like a pressure cooker. I earned that right, and so have you. It doesn’t solve anything, but it sure feels good.

P.S. You can always take a stress management class. I never have, but it’s worth a try!

www.debbiems.com

Using Mobility Scooters and Other Assistive Devices

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“Move Forward–not Backward or Not at All!”

One of the National MS Society’s famous phrases is “MS stops people from moving”. Not me! MS may have stopped my legs from moving but it didn’t stop me from moving. And it shouldn’t stop you either.

I never hesitated to use any assistive device and actually sought them out on my own. This is what I say:

Goodbye fatigue and mobility problems. Hello freedom and happiness!

Recently I mentioned to a person with MS that I was getting ready to go do some leisurely shopping at the Mall. She said, “I am so envious that you can go shopping in this heat.” I told her it was time to think about using a scooter. Buy one, rent one, or borrow one.

Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk. Since I was walking better using the devises, I experienced less muscle and bone stress on my body parts.

Twenty-five years ago when my son was only four years old, I got my first scooter (insurance covered 80% of it). I was still able to walk, but only for short distances. Wanting to keep active, live life and enjoy my son, the scooter enabled me to go to zoos, amusement parks, Disneyworld, shopping malls, etc.

Goodbye danger. Hello safety.

Weakness, poor balance, fatigue, incoordination, foot drop, spasticity…. These symptoms increase your probability of falling and suffering an injury—risking a flare-up and residual damage. Not to mention the pain and inconvenience while you heal if you fall.

Goodbye pride. Hello common sense.

Most people at some in their lives have to use corrective lenses for their vision problems. They don’t think twice about getting them. Eyeglasses are so fashionable these days, and people love the styles and colors available. Others prefer contact lenses instead of glasses for personal reasons; plus, it gives them the ability to have several pair of designer sunglasses to wear.

So what’s the difference if you need to use a device for mobility? In the days when I started using a cane, I had four of them in different colors and styles to match my outfits.

In addition, in today’s world, the stigma of using wheelchairs is going away. The attitude and awareness about using medical devices has changed since the eighties when I first had to use them. People of all ages are often seen in movies and advertising brochures using a wheelchair. You see more people out and about using them. Grocery and retail stores like Target or WalMart have scooters available now for their customers to use. Many places like amusement parks rent wheelchairs and scooters.

Besides, who cares what people think? I do what is best for me. Sometimes I just look at the way people dress, look, and act today….and I should worry about how they look at me?!

And added bonus? People—family and strangers alike—treated me differently when I started using a mobility devise. I looked disabled and received many more offers for help!

A word of caution, however. When you find how relieving it is to use a scooter or wheelchair, never stop your exercise regime. The old saying that “if you don’t use it, you will lose it” has truth to it. I’m a full-time power chair/scooter user, but I still do my daily stretching, balance and strengthening exercises. I use a pool regularly to practice standing and walking—things that I can’t do on land.

So technically, the Society’s phrase is correct in the sense that MS does stop people from moving in the physical sense. But MS shouldn’t stop people from moving forward in life. If you look hard enough, there is a solution to almost everything.

P.S. See my video “Mobility Scooters: Tips on How to Buy” http://youtu.be/TfLtgb2ybb8

www.DebbieMS.com

MS: What is Causing What?

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The “Chicken or the Egg” dilemma

July 2, 2012

The numbness and tingling is spreading.  The muscles are more spastic, stiffer and tighter.  Legs are weaker; coordination and balance are worse.  Walking endurance is lessoned and the fatigue is escalating.

Figuring out what is going on and what to do about it is frustrating and confusing.  And there’s always the chicken-and-the-egg question of trying to figure out what is causing what.  Is my depression (fatigue, etc.) causing a bad day or flareup, or is the bad day/flareup causing the depression (or fatigue, etc.)???

The MS acts.  But wait–or is it reacting?

It’s very easy to blame what the symptoms are doing and how we are feeling on the MS itself.  However, more often than not, the MS is actually reacting to something else.

So how do you know, and what do you do about it?

MS is highly sensitive to an endless list of things, and existing symptoms intensify due to things like:

• weather changes and types of weather (barometer, heat, humidity, storms)
• sickness (colds, allergies…)
• lack of food, water, rest, sleep…
• medication
• stress (temporary physical/emotional/mental, not chronic)
• monthly menses

For example, a fever can immobilize a person with MS.  When the body is cooled down and the fever is gone, the symptoms will subside.  Spending two hours on the phone trying to resolve an insurance problem can escalate fatigue enormously; taking a nap afterward or venting in some way will ease that stress and help calm down those symptoms.

Or, maybe those intensified symptoms are the result of what I refer to as a ‘pay day’.  For example, if I wake up one day feeling great, I might push myself too hard to do extra things.  Then I ‘pay’ for it the next day and can do only half of my normal daily activities.

In situations like these, the worsening of symptoms can last from several hours, to a full day to perhaps several days depending on what the cause is.  Think carefully about things like this relative to recent or that day’s events:  What happened or didn’t happen?  What changed or didn’t change?

When you figure out what the culprit is, it can then be remedied and the symptoms will calm down.  Things go back to their normal state, whatever ‘normal’ is to you. No residual damage.

So when would the MS itself directly cause intensified symptoms or new symptoms that do NOT go away after a few days?  Now we may be talking about an attack, relapse, or flare-up…i.e. when we come out of remission.  It can just happen on its own, but often will be triggered by any major event, such as:

• falls, accidents, sicknesses, infections
• chronic physical, mental or emotional fatigue/stress
• major life occurrences (death, divorce, new baby, abuse…)

In these situations, or in the case when symptoms don’t calm down after a week, when the cold/infection is over, and rest does improve anything, it’s time to put a call into your neurologist to discuss the situation/ask for some help.  The MS may be relapsing and steroids (like Solu-medrol) may be needed to shorten the duration and severity of the relapse.

Over time, being in-tune with your body will help you figure out if it is the chicken or the egg.

www.DebbieMS.com

MS/Chronic Illness: Rest is Critical

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“Recharge those Batteries”

June 24, 2012

This should have been posted last Monday the 18th.  I forgot.  Fatigue will do that to you.  But I will post it anyway, since “later is better than never”………..

I am going to follow my own advice I give to others with MS or chronic illnesses:  Take breaks and rest often to restore mental, emotional and physical stress.

I haven’t been doing that.  I’m exhausted, crabby, in overload and have writer’s block from pushing myself too hard.  With symptoms intensifying, if I don’t slow down I will relapse.

So I am declaring myself on vacation this week and heading for the mountains to camp.  No TV, phone, computer or reading.  Just enjoying nature, sleeping, and visiting other nice campers.

Next week I will be back with another article to post.

www.DebbieMS.com

MS and Heat

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“Rising Heat, Rising Problems”

June 11, 2012

Summer is here.  Temperatures are rising, and so are our frustrations since heat causes MS symptoms to go crazy.  Throw in humidity, and the effect become worse.

Strength and endurance is reduced; fatigue is increased.  Numbing and tingling sensations are compounded, knees buckle, hanging onto furniture and walls are necessary as coordination and balance worsen.

Why is that?

Because heat slows down the conduction of nerve impulses in all people, but is particularly troublesome for MSers.  When a person without MS gets out of a hot Jacuzzi or sauna, they move much more slowly.  By comparison, a person with MS might not be able to walk or stand at all.

Heat caused by weather is not the only culprit.  ANY kind of heat has an adverse affect on MS symptoms– fever, room temperature, over-activity, hot flashes, being in the sun too long, etc.

So what can we do?  Speed up the conduction of those nerves by getting and staying cool.

Ice packs are a favorite of mine; I put them behind my neck, my back, or rub them all over me.  I carry them with me in a little six-pack cooler if I’m at an outing on a hot day.  Taking a frozen plastic bottle of water in the car doubles as an ice pack and ice water at the same time.  Air conditioning is a must.  Some people use cooling vests.  Sit in front of a fan.

Cold ice water and showers are very effective in bringing body temperature down rapidly when overheated. One can go from not walking to walking in a matter of minutes.

Want to sit in the sun to get some vitamin D?  Not a problem—just have a spray bottle with ice water in it to mist yourself, stick an ice pack behind your spine, and drink cold beverages.  Make sure you use a sun block to not only protect your skin but to also prevent sunburn;  sunburn will really raise your body temperature until your skin heals.

Another tip:  a common side effect of bladder medications for some people reduces sweating.  So if you are in the sun or someplace with high temperatures, you will overheat faster.

While dealing with heat is troublesome, there is a bit of good news about Heat & MS that should always be remembered:

Although, heat definitely aggravates the nervous system and will cause symptoms to intensify, heat will not cause a flare-up or attack.

Watch my video about Heat & MS for a live explanation and demonstration–
http://bit.ly/KecZ84

www.DebbieMS.com

MS and Walking Problems

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“Falling Down”

May 7, 2012

Most people with MS will fall down.  As careful as you try to be, it happens when
you least expect it.

I fell down two weeks ago and I am still recovering.  As I was getting up from my recliner, my knees suddenly buckled and I landed right on my tailbone.  It was probably a good thing that my back hit the end table as I fell.  I think it helped break the fall of dead weight hitting the floor and possibly preventing a broken bone.

Who knows?  I may have a slight fracture because my butt still hurts when I sit, but it is slowly getting better.  I held off from going to the doctor because the thought of X-rays and who knows what else a hospital would do was not something I wanted to deal with.  I didn’t want the added stress of all that added to the stress of the fall, plus all the germs I would be exposed to at the hospital.

I didn’t know if that was a smart decision at the time, but after the fact, in my own mind it was. The truth is, if I had been in severe pain or exceptionally immobile in a new way, I would have gone for a medical evaluation immediately or a day or two later.

There are so many symptoms of MS that make walking precarious, and it is probable that almost all people with MS have at least one of them.  Fatigue.  Dragging feet.  Weakness. Ataxia.  Toe or foot drop.  Poor coordination and balance.  Spasticity.
Vertigo. Medications, lack of sleep, and age also affect walking safely.

We need those handrails on steps.  We love hanging onto those shopping buggies
in stores.  Thank goodness for all those walls and furniture to hold onto.

With my own case of MS, I had walking problems from the onset.  I was very young and the walls and buggies sufficed for a few years.  Then things started getting worse. I bought a collapsible cane and carried it in my briefcase everyday, but never used
it.  Until one day when I was crossing a cobblestone street and I wiped out.

That’s the day I took out the cane—I was thirty-years old and started using it for my poor balance. I was too startled and scared to be embarrassed.  After that day, I never hesitated to use that or any other assistive device.  It didn’t take much to fall down:  a crack in a sidewalk, a toe getting caught in a throw rug, or a shoe heel that was too
high.

I thought of my cane as a pair of glasses that one uses to see better.  So I bought four canes in various colors and styles to match my outfits. Later, the walker-on-wheels with the built-in seat to rest on was a blessing when the weakness and fatigue would cause my legs to crumple after walking a short distance.  The added benefit of the basket to carry my things for me was so convenient.

We MSers need to think about tripping and falling constantly—something “normal” people take for granted.

Falling down is dangerous to us for several reasons.  Obviously, serious injuries can result.  Serious injuries not only impair daily living, they cause enormous stress and often cause a relapse.  Relapses lead to intensifying existing MS and creating new ones from residual damage. Injuries take longer for people with MS to heal because of the autoimmune response of our nervous system.

Steroids (such as Solu-medrol) are frequently prescribed to reduce inflammation and shorten the life of a relapse.  Most people on steroids suffer side effects and over time these cause loss of bone density.

Therefore, the older you are, the more dangerous it is to fall down. Not only are older people prone to fractures because of bone loss from things like menopause and osteoporosis, but those who lived a long life with MS probably used steroids frequently throughout the years to shorten their relapses.  Being fifty-seven years old, I was lucky I didn’t break a bone when I fell.

There is a whole arsenal of tools available to help prevent falling down–physical therapy, walking devices, strengthening/balance exercises, arranging daily habits to enable frequent resting…too many to talk about in this article. I’ve explored and use(d) so many of them and am always looking for new things out there to try.

Where to start?  Go to a physical therapist who has worked with MS patients and talk to other MSers. It is essential to learn how to do and use things correctly.

These things take time, dedication and will power to adjust to lifestyle changes.  They create more interference in our daily life and add more to do and worry about.  But the chance of suffering a serious injury doesn’t fit in with working full-time, being a spouse/parent, running a household or enjoying life either (sigh).

We with MS have to take every precaution we can from falling down.  Our lives (and our butts!) depend on it.

www.DebbieMS.com