Don't be concerned, it's just MS relapse. And it's a long one!
"Oh, I know what you're going through. Been there, done that."
"Have you tried taking a daily aspirin?"
"Well, maybe if you get more exercise you could get around better."
"Don't be so dramatic. You're taking medication for it."
"I'm sorry you feel so poorly. At least you know this is temporary."
Do any of these comments sound familiar? Even when we go out of our way to explain the "flair ups' that accompany multiple sclerosis, these debilitating symptoms cannot be adequately described.
By definition, a relapse is the appearance of new symptoms or the aggravation of old ones. A relapse usually lasts 24 hours or longer; sometimes even for weeks. A relapse is caused by inflammation in the bran or spinal cord. A relapse is actually the outward sign(s) of disease activity and the episode needs to last for at lest a day to be considered an actual exacerbation. Symptoms that occur and are not related directly to MS are referred to as pseudoexacerbations. With a pseudoexacerbation often comes panic. Is my MS getting worse? Is the disease progressing more rapidly than I ever expected? The answer to these questions is probably a strong negatory. (I think I made up that word, but you get the idea.) the effects of a pseudoexacerbation gradually subside, leaving no lasting harm.
I am actually relieved to hear this, because that means I cannot blame every little ailment on the MonSter. This doesn't make these symptoms any less worrisome, though. It means that we need to be more aware of what our personal MS-related relapses look and feel like.
MS Relapse Symptoms
A relapse lasts at least 24 hours in the absence of an infection or fever. In contrast, a pseudo-relapse is not a worsening of the disease—it's the temporary flare-up of symptoms that have occurred before. And, episodes come and go very quickly, typically within 24 hours.
A relapse lasts at least 24 hours in the absence of an infection or fever. In contrast, a pseudo-relapse is not a worsening of the disease—it's the temporary flare-up of symptoms that have occurred before. And, episodes come and go very quickly, typically within 24 hours. #teachmems#MSawareness
From my own experience, I am strongly aware that heat is my biggest kryptonite. I have learned to steer clear of activities that involve extended exposure to the sun or hot environments. My limbs tingle and go numb. Cog Fog washes over me. My face feels like it draws to one side and my speech become garbled. I feel light-headed and a bit drunk. Forget about walking the straight line to demonstrate my sobriety because my legs will prove me wrong every time. If I follow this strict regimen, these symptoms normally dissipate within an hour:
1. Find shade
2. Drink something cool (Frozen lemonade works for me!)
3. Place cool clothes on the base of the neck and forehead
4. Maybe close the eyes and take cleansing breaths
5. Block out distractions and do not panic
Because heat is my enemy, I pay close attention to my body when exercising, outside in the summer, or when I might be fevered due to an infection or illness.
I also know that fatigue or stress can aggravate my MS symptoms. Fatigue and stress can aggravate anyone's physical attitude, though, so careful attention is sometimes warranted to draw the line between MS and every day stuff.
My point here is to not run to the ER every time a symptom flairs. No, I am not demeaning your fear or dismissing your pain. Remember, I live with it also.
I'm just reminding you NOT to be an alarmist.
Neurological treatments for relapse vary. Early on I
welcomed the use of steroids the quell the beastly
symptoms of relapse. Corticosteroid treatment is amazing...
if it works for you. While steroid treatment makes me feel
like I can rule the world, a dear friend complained that
steroids turned her into a total "B" word. Only you and your doctor can make call on steroid treatment for relapse. Treating MS has been referred to as more of an art than a science. This involves you and your MS team working together to find what works best for you.
Upon questioning a group of Warriors on one of my favorite
Face Book page groups, I collected a very thorough list of
#1 MS Super Hero kryptonites. I bet you can relate. No, I
know you will be nodding your head in total agreement as
you read the following list.
Over-stimulation...visual, audio, mental....sensory
overload I would call it
Heat + humidity
Over stimulation, definitely!!!!
HEAT and HUMIDITY
Pain and cognitive issues
Stress and humidity
Heat and stress.
Heat, over stimulation, bowel and bladder. Fatigue,
balance/walking and bowel incontinence are most
Pain and no energy...oh and bowel issues...I hate
Vertigo, cold, fatigue and stress
Not having the stamina/energy to do what I once
did. This brings on severe depression for me.
Heat, fatigue, foot drop, bowel and bladder
urgency. LOL but I have had MS for 30 years so it's my new normal. I just
symptom manage based on the weather, my strength, and what can be accomplished
that day or sometimes within an hour. Good luck! I miss school soooooooo much!
I dreamed of law school and becoming a criminal defense lawyer. xoxo
Fatigue, stress and heat for me smile emoticon
Heat - from outside or even the shower ---- get it
a bit warm in the morning and I MUST GO BACK TO BED.
Humidity....and headaches from my eyes straining to
see....makes me want to rip my eyeball out
Hug,Fatigue PAIN that feels like toothache.
Vertigo, numbness in my hands, MS hugs in abdominal
area, lower immune systems mean longer heal time and easier to catch colds. Use
of canes and walkers for balance. Tons of different meds to control different
weakness,numbness on left side of
body,heat,fatigue,balance,trouble walking and stress
Unable to think clearly or remember information.
Thought process unable to get what I want to say out.
I miss running and
walking the dogs
Cognitive problems!! Fatigue and stress
Energy and headaches Brain Farts to me are awful.
Walking. Unable to feel my feet and right side.
Pain. Spasms in right foot and leg. Speech is slurred. Double vision in both
eyes and sight very poor in right eye. Fatigue most of time. Bladder problems.
Laugh when I shouldn't. Memory loss. Unable to sleep. I'm sorry you just wanted
Short term memory is shot after almost 20 years!
Off ALL DMDs!
Fatigue and major major short and long term memory
Fatigue!!! Hands and feet numbness and tingling.
Heat and cold intolerance.
Walking, is my biggest complaint
I get really weird symptoms, like right now the big
toe on my right foot feels broken, this is not the first time for my toes to
feel this way on either foot.
Kryptonite : Heat HEAT HEATTTT, and or lack of
sleep (with newborns)
Heat + MS = fatigue
You are the first one to say that about the toe,
makes me feel better that I am not the only one with that strange symptom!
The heat which makes the fatigue much worse and the
sweating which causes me to be unable to do normal activities.
Short term memory loss, numbness in hands and fingers,
Cognition, balance/stairs and fatigie.
Heat and doctors that do not believe that there is
pain associated with MS
Heat intolerance. Cog fog. Fatigue.
Leg pain which affects walking. I still drive
enough to more than get by. I don't use a cane or walking aids on daily basis
just motorized carts at stores. Bladder/bowel issues rank really high because
Heat. It brings everything on. Fatigue, walking
difficulty, cognitive disfunction, numbness and tingling, weakness, etc.
Depending on what the flavor of the day is.
Ms hug/costocondritis, had some chest pain daily
since Jan 2.
Interrupted speech, brought on by anger,
stuttering, etc, heat intolerance, loss of use of left hand because of
numbness, dropping everything I hold onto. Dropped foot, causing dragging and
constant stubbing of toe!
Being tired ALL THE TIME.
There's a couple of issues but for me the one that
gets me the most is memory issues.
heat intollarence, i wilt in direct sunlight
Leg drop, legs dragging
Hot weather causes major fatigue, along with
seizures if i become over heated. Cold weather brings increase of pain.
Heat - can be a fever or the weather
Heat sensitivities number one... stinging pricking
feeling numbness in hands and feet #2... fatigue #3..feeling that im going to
faint #4. Head feeing weird brain fog with blurred dimmed vision #5 leg pains
and throbbing sensation comes in at a close 6.. And being in the cold brings
about worsening of these symptoms. Lastly bladder spams along with urgency of
having to urinate continually and anxiety attacks.
Heat fatigue memory swallowing problems numbness
body temperature changes
Overheating is definitely my kryptonite. My brain
fries, I am feeling as though my body is burning from the inside out. Icepacks
applied to my legs and body and neck and arms melts rapidly. If I could be
placed in a bed in a walk in freezer with the ice would melt.
The heat is the same for me
tired all the time, I sleep more than I'm awake
Bladder and cognitive problems
Stiffness and cognitive along with balance.
Vison issues and how it impacts my driving / not
being able to drive at night.
baccafin took my legs away
The belief from others there isn't pain w ms.. no
pain my foot!
Balance, foot drop,
balance and right frozen fingers.
Heat! causes paresthesia.itching,burning of skin
Walking / balance issues for sure.... heavy legs,
walking/balance problems, loss of my bladder
heat, balance and not being able to poop on a
My biggest complaint is that my right leg is very
weak. I am still walking - with a Walkaide and a cane. It is a struggle.
HUMIDITY!! It suffocates me tightens my body beyond
comfort emotionally wants to put me in a place I don't want to be in and I
fight it even when I try to ignore it
my balance is very poor, heat affects me most
Wow! You folks are the best. I am currently writing
a common sense book to dealing with the MonSter and really needed some
practical input from fellow MSers. This is fantastic.Does anyone oppose to me
adding these comments verbatim to a chapter entitles Comments from the Crowd?
tireness all the time balance issues memory issues
sniffness heat and cold intolerance pain all over weakness in legs arms trouble
sleeping wake up soaking wet.
My biggest two are HEAT and stress. I absolutely
hate summer. If I get hot I get so weak and shakey I feel like I'm going to
faint. And I can't do anything to stop or help it except stay cool. The stress
issue is something I just have to be careful about and figure ways to relax.
Easier said then done sometimes but necessary. Yes, you can quote me. Let me
know if I can be of any more help.
Fatigue and heat.
Balance and weak legs are a big problem. It keeps
me from driving. Remembering anything is very hard. Sometimes I have to read a
paragraph 2 or3 times before I can remember it and continue.
Phantom itching ...
Drop foot. Feels like someone has my foot in a vice a
large majority of every day. Spasticity also very bad in one leg.
Slightly off track,,, semantics,,,,doctors saying there
is no "pain" associated with ms,,,,,,,
Weakness in legs n leg spasms
Drop foot and uncontrollable spasticity at night
Fatigue and cold
unable to remember anything
Right now the heat and humidity, stuck in house
24/7 and hate missing the summer by being in the house. But if I go out at all
I get so weak I will fall down and the pain will go thru the roof.
heat and overdoing things is my worst
PAIN! In my legs and most recently arms, The MS hug
wich is an awful name, and almost the worst my brain cognitive forget tons,
can't learn new things don't remember people. I don't like too drive cause I
always forget where I'm going and sometimes forget where I am and have to pull
Heat HEAT HEATTTTTT. And balance. But the heat
wears me out.
Heat and Cold
Heat and Humidity def balance too, fatigue has to
be my #1, but heat gets me to that point quicker
Crumbling teeth, fatigue, and pain
peripheral nerve damage makes me itchy 24/7.
sometime i cut my self when i scratch.
I've not heard of
the crumbling teeth; but that may explain why I keep chipping mine.
Uhtoff's phenomenon - heat is one of our worst
enemies. Having to always have a "cooling off" plan can be
burdensome, as well as the bulky, wardrobe fail (lol) of a cooling vest.
Stress is another, which is so hard to learn to recognize until our bod...See More
Fatigue and pain in head and face (kind of like
One of my (many) kryptonite is always hiding. Hiding the
pain. Hiding the fatigue, hiding symptoms and saying "I am ok." This
is so I am not always a "Debbie downer" so people won't mind being
around me. I internalize it, thereby increasing stress.
HEAT!!! It causes so much damn depression that I
cannot even get to Walmart without getting sick! The burning sensation in my
pelvis and my legs, and TREMORS!!
Humidity & stress. (Aka hiding how I really
feel & doing too much just to prove I'm not a useless lump!)
Fatigue and heat.
Fatique and nerve pain
Pain, cog fog, and fatigue!
Heat, humidity and isolation/loneliness
Stress and gluten.
Like many of you fighting the heat and humidity,
which is causing increased fatigue, and pain. I'm sooooo sick if being inside
to deal with it!! But I have the same problems with the humidity in the cold.
Heat, humidity, depression
. Cold. Stairs. Depression. Memory loss. Unable to open
food without aid of scissors or kids. Migraine over a year. Sleep too much.
Pain,heat and fatigue
fatigue, nerve pain, humidity, depression
Heat, depression, memory loss
Heat, FATIGUE, weakness, numbness, memory issues,
etc., etc., etc.
"you don't look sick"
Memory issues unneducated people who make comments
A messed up brain - no short term memory, forget
everything I am supposed to do, can't do it right anymore.
Pain, heat, fatigue, stress
fatigue and stress
Heat, seizures, vision
Stress and heat
Heat, stress & Cog Fog.
Stress is another huge one, it's like the silent
What, can no one see t? smile emoticon My
big pain is a loss of memory. I have the other things mentioned, but forgetting
my son's names...it is horrible. Why can't I remember my son's names? It is a
tough sentence. I use pet names, that helps sometimes.
Heat, fatigue, stress, and speech issues. Oh and
tremors when I'm trying to do something with my hands.
Bladder/bowel incontinence, Heat, Fatigue, A LOT of Pain,
Balance, Dizziness, Numbness, Muscle Spasms and of course uneducated, ignorant
family/friends and society in general making comments about how we're not sick,
that we are just seeking attention and drugs, all because we look fine on the
dizziness/balance, permanent double vision
Heat. Stress. Latin men
Fatigue, dizziness, temperature intolerance
Balance and pain#1. Optic neuritis and damage
trying to take right eye. Total hearing in right ear and specialist its
permanent. Bladder, so many broken bones and falls. Now having swallowing
issues, which is scary. Double vision
This time of year I have to say heat/humidity, but
in the winter, cold really gets me as well. So for me, it's temps to far out of
the comfort zone either way.
humidity being so high that in the heat I turn into
a wet sponge, and cold weather slows me to a crawl. spacticity and pain
I like the months that are right in the
middle wink emoticon
Steps, or walking up a moderately steep slope -
turns my legs to jello everytime. But, so grateful to be able to walk.
Isn't this the ms the best and even better they
know nothing about it.
fatigue , stress, pain, dizziness, numbness those
are what bothers me the most .... oopps there's another i almost forgot ...
Heat & memory
Walking/standing, Heat/humidity, other illnesses,
bathroom issues, trying to multitask...nervous pressure.
All of the above^^
Fatigue, heat and memory are my biggest issues
fatigue and missing not being able to walk
not being able to walk
Heat ,fatigue ,walking
walking and balance
Balance & Heat
Heat and walking like I am drunk!
Waling and balance.....
The numbness and tingling that is constant in my
feet and legs
Not being able to walk
Walking and balance
Weakness, Fatigue and Balance
also cognitive issues, mentioned above. i'm so lost
in my own head that I don't really know or seem to care much about the world
around me. I do, I'm just lost in my own head and it sucks. I'd talk to people
more but I'm afraid that I'll sound worse because I'm so confused. Balance is
shot, I hold on to things when I walk, but I'm thankful that I can still walk!
"penis numbness" If I get that
permanently, just damn kill me, lol
Fatigue and heat.
Heat. Drop foot. And being tired
My worst issues are with changes in temp and memory
and mentality...and foot drop and...
All of the above......minus the penis
Heat, fatigue, walking
Memory, fatigue and insomnia
Heat, fatigue and anxiety/depression
humidity, extreme cold and insomnia
Heat and high humidity, stiff and painful legs,
Finding Doctors that truly understand
Stiffness and pain in legs ,Heat ,memory problems
and many more I know I,m forgetting
All the above, and not being able to sit on the
floor play toys with my son
At this particular moment, the HEAT!!... Was
outside for less than 15 mins and now my legs and feet are killing me and I
feel dizzy, like I'm about to pass out!!... The fan isn't even cooling me off
The heat affects me badly too, but it's winter here
so at least I don't have to deal with that right now.
This heat is killing my MS!! I put on my makeup, I don't
know why it's gonna melt off!! Heading to dinner with friends, MS you are not
All responses to my
“assignment” are members of the We’re Not
Drunk. We Have MS! Facebook page.
The biggest reason I wrote this book was purely selfish.
Upon initial diagnosis, I tried to write down everything little
thing related to my newly acquired condition. I have kept a
journal (diary in earlier years) all my life, so continuing to do
so was only natural. This venting process helped when
attempting to physically verbalize my fears, frustrations,
anger, and confusion could not. My writing was (and is) my
I shared a few pages of my journal in a writing group. they
made me aware of the fact that my experience might help
someone else. That's all it took for me to search for a
publisher. I found the perfect match with Headline Books.
thank you, Cathy and Ashley Teets for believing in
me.Since being part of the Headline Family, my book has
received continuous 5-star reviews and been honored in
the London Book Festival Book Awards. Cathy encourages
me with the sentiment that more awards are in the offing.
But it's not about the reviews or the awards, although those
are nice testament to my writing ability. Publishing I Have
MS. What's Your super Power? proves to me that my
publisher (Cathy Teets) and my illustrator (Ashley Teets)
believe in the need to raise awareness of multiple sclerosis.
Leslie Hillburn, administrator of the Facebook page We're
Not Drunk. We Have MS, a fellow Warrior, wrote the introduction to my book and allowed me to quiz members of the group page for my research. Why? Because Leslie is adamant about spreading the word in stressing the severity of multiple sclerosis. New York Times bestselling author and fellow Warrior, Geoffrey Cameron Fuller, states "Lisa does s people with MS must: accentuates the positive to defang the MonSter!"
Am I tooting my own horn? A bit; but not make money. I want to share my first-person suggestions and experience in the hopes of helping some one else (recently or not) diagnosed with this neurological phenomena called MS.
Fight back, Fellow Warriors. You are the Super Hero. MS is nothing more than a scary ol' MonSter hiding under the bed. During the month of March, a portion of my book sales will go directly to the National Multiple Sclerosis Society. When you order directly from me, I will personally pay the postage and include a little bling in your package. Contact me if interested: LisaAnnetteMcCombs@yahoo.com Or shout at me here. If you are not interested in hanging out with me personally, I won't take offense, (but I would love to have a new friend) take a gander at my books on Amazon. http://www.amazon.com/Lisa-A.-McCombs/e/B005ELC3FU/ref=ntt_dp_epwbk_0
Thanks for hanging out with me today. Have a good one! Lisa