Assuming that most MS sufferers have a "Basket of Intolerables," what are the largest few items in your basket?
Temperature sensitivity is one that we hear discussed fairly often, and for most, it's extreme heat that they cannot abide. I, by contrast, find myself more inclined to get chilled (even by air conditioning).
To give another example, since my progression went full-tilt, I have found myself much more sensitive to sounds that are shrill, loud, abrasive or unsettling. I recently spent a few weeks in a large hospital, where things got pretty crazy on a regular basis-- when a patient started yelling (whether from pain, or for some other reason), I just could not stand the sound, and had to close my door. Same thing with loud traffic noises, or inconsolably crying babies.
So, what are your unique sensory triggers? Is there a type of food, a smell, a temperature, a sound, a circumstance, a situation, or anything else that you now find yourself especially unable to tolerate? If so, what is it?
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GasLight
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You too, Jbahnan , and thanks also for highlighting something for which we can be truly thankful-- we are not in July/August yet!!! One could even say that we've been freed (temporarily) from being so greatly drained . . .
jkdavid99 , you are certainly hitting one of my larger ones here-- especially if I am struggling to focus on a "difficult task" (which is itself an evolving term these days). As concentrating upon mental tasks now requires increasingly more effort from me, so do external noises seem to unbalance that process.
Sometimes I feel like a wino navigating a tight-rope, as people scream at me from the gathering crowd (when, in fact, I'm just a guy in a bustling and noisy store, who's merely trying to gather currency from that wad in his hand, and come up with $13.68).
GasLight, it's Fancy1959. Great post by the way! Could i please have a shopping cart instead of a basket? That way I can at least hang on to the shopping cart and might not fall over. Haha! Seriously though my balance has to be one of my main issues that I deal with on a day-to-day basis. I don't really have a trigger except that the tireder I get the worse it gets. I also have to be extremely careful if I walk on that big dense number 2 gravel. It makes my balance extremely topsy-turvy and I've taken several nasty falls on it. Another major issue I have is with my incontinence. We might as well put it all on the line since we're all family here. But just sometimes pulling into the garage triggers my bladder. It knows I'm home and I have to go bathroom like 5 minutes ago not one minute from now. It's a real issue for me and rather embarrassing as you can imagine. Other than that it's just my dexterity is gone in my hands and my grip strength has gone to next to nothing. If I pick something up I drop it at least five to ten times even though I'm trying very diligently not to. It drives me crazy. I also have very limited endurance as many of us know. I take and work half hour sometimes an hour spell then I have to kick back put my feet up for an equivalent time period. I guess the least problematic area I have it actually my brain function. Other than forgetting words I haven't noticed a big slump in brain function. And as soon as I stop trying to focus and concentrate on the word it usually pops right into my head unexpectedly. I can't think of any smell triggers or sound triggers that drive me crazy. I guess first I have to be able to hear things before they drive me crazy. Whoever said our golden years where our best years lied big time! Old age is not for sissies, especially when you have a chronic illness on your plate!😲
Don't get me started on the #2 gravel, Fancy1959 !!!! Over at the farm, we had it (or 57) in lots of places, and it truly became a minefield for the ambulatory-challenged. The worst for me was at our main gate, which included an uneven grade-- I cannot tell you how many times I rolled my left (drop foot) ankle while coming in or out of that property!
Oh you don't have to tell me a thing Gaslight. I've been there and done that so many times I can't even begin to tell you the falls I have taken. The worst was the time I think I broke my hip but luckily I did not. I'm a tough old broad and I don't bounce well anymore but at least my bones don't snap. And boy have I put them to the test last 2 years.😦🤕☂
My biggest issue is ' foot drop' . I trip up all the time at home, it's really annoying and dangerous.
My next biggest issue, like Fancy is balance, falling backwards all the time.
Next, the red hot poker feeling that goes in through my left shoulder into my arm and radiates heat all the way down to my wrist. It then travels up into my head, makes me feel nauseous and I just want to pass out with the sensation. Fortunately this happens when I get into bed.
I agree with Fancy1959 jkdavid99 Jbahnan and GasLight but I think the biggest trigger for me is STRESS. It causes some immediate and some delayed symptoms. I'm working on managing thru meditation etc.
Stress seems to make it ALL worse, doesn't it erash !?!?
To tug on that same thread just a bit more, I almost feel as though stress and sensory overload have relationships of progressive antagonism with each other:
-- the more stressed that I become, the more my symptom presentation will escalate, and the more compromised my data processing and sensory functions will be; and
-- the more overwhelming a group of incoming stimuli becomes, the more stressed that they make me (because I am feeling like Lucy in the Chocolate Factory-- youtube.com/watch?v=8NPzLBS... ).
Erash, you went right to the root of all our problems! Stress! It probably does more damage to us then we will ever realize. Right after stress is fatigue. Stress leads to more exasperations than we will ever know. Then fatigue magnifies our symptoms tenfold and leads to worse outcomes when we have our exasperations! Yuck!😲😥🤕.......!
Hi ya @gaslight, l would have to say. Crowds! Don't like um. Can't be near them! I have been like that my whole life, but lately, to many people talking is a sensory overload! Next the heat😞😢 It has taken what l love, my time in the sun😥😥
Yes! The balance and the heat are not the beesneez😫! All I can do is stay hopeful, it's my lifesaver dealing with this mess. Stress is a major factor with this mess as well. It can really affect our condition, along with arguing.
Hi Gaslight my intolerable list is 1) loss of independence 2) incontinence 3) can't drive anymore 4) can't disappear with my friend for city breaks and holidays etc 5) permanently in a wheelchair for about 18 months now as unable to walk. Apart from all this I'm fine!!!!
Oops forgot one....can't get another kitten cos I might run it over!!!!!!!!!!!
Hi LynnB18 l don't think we have had the pleasure? 😊 I'm so sorry to hear about your kitty situation. Is there anyway to keep it in the house? 😞
Sounds like your having a rough go of it. I'm sorry😞 l can truly understand about the not driving one. I haven't been able to drive for 7yrs now. Just cause l can't feel my feet. I told the Dr that the car woud stop eventually.😕 He did not find that amusing 😅😅 But it takes a piece of you.... Your independence. Hang in there, hold your head up high!
Hi Jes, it is hard but at least I was able to take Stephie, my daughter, to school until she was 16 then a year later she could drive herself. I am just thankful that I could do all the things I wanted to with her before the MS got really bad. My balance went years ago and I remember picking her and her friend up from school and going to the shops, first it was Stephie saying "you promised not to drink before you picked us up" then Cathy "but you can go back to rehab". It was always in a loud voice and when they were quite young. The looks I got before we all started laughing. Humour was and is the best way. Lynn
How very true about humour LynnB18 There are days when l would go note if l didn't have humour. I m still waiting for my bf to volunteer to take the shots for me. 😞😅😅
You were very lucky to be able to do all that with your daughter!!! I hope you had and have a good support group? Besides us of course.😁
I does seem that once you have passed through the door of MS it's a whole nother life. You can make it as you want. Your daughter I older now and it's a whole new relationship. So you just change what you want to do with her.💕
*Helpful Hint* If you put an @ in front of the name your talking to, they will get notified. ie: @ jesmcd2 ~with no spaces~
I agree about the lose of independence. It's becoming more tolerable, but it still hurts at times. I loved to drive, and now, I can't even go too far from home alone ... about as far as 1/3 of my power chair battery or as far as heat or cold will allow.
I understand your concern about the kitten. My cat in my constant companion. Have you considered an older cat or a dog? Shelters always have older animals that would love to have a furever home.
Hi Eleyne92 I do have a bichon of 12 and my daughter's cat Garfield who has separation issues when she deserts him to go back to uni! I used to have 3 cats and a dog and on 2 occasions 2 lots of kittens to my husband's horror. We only got Garfield when I collected my daughter from school and went to buy a school jumper and came back with Garfield but no jumper. I'm sure i'll survive, part of me just loves winding my husband up as he threatens to divorce me if I get another cat!
I had a bichon for 15 years, tremendous character if it wasn't for the ms I would have another one, but I had to take her to the doggy parlour every month as her fur got really matted, but she was a real blessing, cheers Jimeka
Hi @Eleyne92 I know exactly what you mean. I chatter away to Garfield and he yowls back at me. When I'm messing about on my laptop or reading the paper he likes to jump up and sit on it!
Fatigue, High heat (especially with high humidity), cold, it makes my muscles spasm at times and STRESS.
I have a question. Is it the MS that has made some of us hyper sensitive to noise or could it be nerves/anxiety? I know that when I am dealing with a bunch of MS stuff I can get anxious and loud TV, baby crying, etc., can make the nerves/anxiety worse. I never thought it was the MS that caused it, well dealing with the MS may have caused it but not the disease process itself, you know what I mean. Just wondering.
From my experience, Morllyn , it's unquestionably the MS. I worked in a high-pressure job, often dealing with chaotic situations and extreme noise levels.
The sounds never bothered me and I was always able to shut them out-- until PPMS.
My intolerables are both heat and cold. I love sun and warm but it doesn't do me any good. I lose functionality when I get knee-jerk. The line is pretty narrow, too. And, while I've never relished cold temps, since 's MS, cold and shivering cause muscle spasms. More recently, even cook air on bare skin is uncomfortable. My temperature comfort range seems to be shrinking.
I agree with you that the intolerance to heat and cold can become unbearable at times. I feel like a reptile who must avoid heat or cold. Like a cold-blooded creature.
Gaslight interesting question. Thank you. Temperature extremes are in my basket of annoyances, but the intolerable is the faulty signal sent from my bladder. More times than I can count I have peed in my shoes as I am trying to unlock the front door. I have had bowel incontinence infrequently, but the worst was in a passenger tunnel from an arrival gate at LAX...and there I was in white linen slacks. Humbling. For as long as I can remember, I have found movie sounds too loud, the flickering screen annoying (and always came home with a throbbing headache) but now find them intolerable, along with hundreds of voices talking all at once (as in a professional conference setting). I seem to go into sensory overload very rapidly. Annoyances (and there are myriad due to the SPMS) I can usually manage. Intolerances, however, manage me!
Whatever one calls the unsettling place in which I now live, goatgal , I can see that you live very close nearby. You describe our blighted neighborhood quite well.
PS-- I can match your LAX nightmare with an identical one, in a three-piece suit, in the capitol of foreign country where I did not speak the language. It's a humbling disease, that's for sure.
Omg. Yes, bladder issues. THAT's definitely becoming an intolerable for me. If it were only the light leakage, it would probably not be a major irritation, but the situation is a lot more complicated. Congenital foot deformities and old knee injuries have ganged up with MS muscle atrophy to make even standing straight upright with support a how-to. I struggle to get my trousers or pajamas pulled up, to say nothing about snug undies. 😠😕😢😬 Pads twist, come loose from my underwear, and stick to my skin, resulting in irritation in places that are difficult to treat. Pull-up type incontinence underwear is worse. It's way more than I need and it rips when i try to get dressed. So ... I change clothes a time or two each day - or put up with damp pants. I also have to limit fluid intake when go out, because I can't negotiate public toilets any more. Three hours is about all I can manage.
I've talked with the urologist once about a suprapubic catheter, but he wants to wait and revisit it in September because i don't have any real trouble voiding. I'm about ready to push the issue. It's a Quality of Life issue, and some days it brings me to tears. I can't even visit my grandchildren. 😢😢😢
I have too many to list, so life. Living a life where all the world is a stage. If I go out in public, I am NOT going to let people know how hard it is for me to live. Every move I make takes all of the concentration I have; exhausting, plus I often find it too peopley out. That's when I enjoy the solitude of home, or maybe it's duotude, my husband is there too.
GasLight Thank you for your initial post. I read everyone's responses and I have experienced every single one of the issues described. I also experience garbled hearing, and blurred and double vision. Another symptom I plagues me on a daily basis is narcolepsy (can't hold my eyes open). And on the flip side of that is the ever pervasive insomnia. But the issue that is my constant nemesis is cognitive functioning. Everything else falls in line behind that.
What I believe the sum of all that has been posted is that MS is a formidable opponent! But the human spirit is stronger then any disease and when human spirits unite, as in this group, we become even stronger.
I am so grateful for this group and have gained much hope and inspiration to continue to fight the disease of MS and the many other diseases so many of us also battle.
My prayers go out to all who are part of this group and those who are yet to find us.
@ Blcasey279 Dearest Brenda, You and GasLight have saved me from having to use up my brain cells in thinking of words to express what my feelings are. Thank you for responding so eloquently to others' posts!
Although I've yet to experience narcolepsy, I certainly relate and agree especially with your summation of this insidious disease.
Mine go in this order : increasing disability/dysfunction, having to box ever more clever and think of new ways to manage tasks, fatigue and it's limits, pain/discomfort, having to rely on others during a relapse ( ugh, I hate that ! ) having no diagnosis or medical support. Worrying that I will be unable to have pets in the future as I may not be able to take care of them adequately. x
Thanks for responding to my question erash and everyone else. That was a question that doctors have asked me before. Like, "Is the fatigue due to the MS disease or due to trying to move around on weak muscles, lift up a foot that drops down so you won't trip, etc. I would tell them that those things definitely can help cause fatigue but when you wake up after 8+ hours of sleep and are fatigued then it isn't those things that caused it. Fatigue and pain were not MS primary symptoms for so many years (or so they said) so they were called secondary symptoms.
Sorry, I do not know if I am making myself understood, and I am rambling.
My basket runeth over! Numb right arm/hand and right leg/foot make my job and my life hard. I can't sense where my right foot is without looking but looking down causes sparks to fly down my spine. Falling has became a regular occurrence. My latest fall broke my tailbone. Brain fog,forgetting words that i once used all the time,leaves me hesitant to say much. I used to be very confident and outspoken. Most days I am now like a broken puppy,meek and whiny sounding even when I don't intend to be. It's amazing how much a year changes things!
If I had to name just one intolerance, it'd be doctors who have no clue and don't listen. I refuse to see another one that doesn't hear me!
Sorry so long,the miseries abound and the pains are many. I will not give up though!
Christopher, GasLight , my mind has been pondering this question since you posted. My mind has been doing that apart from me, I kept saying, stop it you're annoying the rest of us, but it wouldn't listen. And various answers were floating in and out of consciousness, and over synapses, and through lesions until finally they came to rest at a conclusion.
I cannot tolerate the most this severe startle reflex. Its why I can't drive, and it causes me such discomfort when it happens in front of someone who doesn't get it. Being scared to death and almost messing my pants by a plastic bag floating in the air is the pits! 👹
The other thing that I can tolerate is that I can't tolerate even mild aerobic exercise anymore. I went into a flare last time I tried restarting an exercise routine. Now I'm only allowed to do 5 minutes on a recumbent bike, 5 FREAKING MINUTES. lordie bee....
No one is probably reading this string anymore but there, I got it out. Lol
I read it, Karen-x , and I feel the same way (at least about the exercise problem). Until my legs left me, I made a point of pushing myself in the gym. Now, the exercise program has become a ship with no rudder. I'm not sure where to direct myself now (can't do hand bike, as my right arm is going also). It is so very frustrating for me, because the desire to push what operating parts I have left is still just as strong.
You may have to help me on the whole startle thing. Do you mean that you get startled like these critters?? That could get embarrassing (and I certainly can understand why you had to stop driving . . . )
Lol, yes like those fainting goats. Very appropriate! And I actually have five goats, no fainting ones because I knew my teens would endlessly harass them. Ugh, boys... Teehee.
Please explain what you mean when you said, when your legs left you. I am still pretty mobile but waNot to understand how lose of mobility happens.
And I hope someone get my little tribute to Maurice Sendak in my post.
At least in my case, Karen-x (and being that I have PPMS), its all been a question of steady, linear decline. For many years, the distance that I could walk before leg failure was fairly significant (e.g., 1 mile, unless I were carrying a load).
[By "leg failure," I mean total collapse (much like our goat friends, but without stiffness); after a 15-20 minute recovery period, I would be able to stand with some assistance].
Each year that 'failure distance' would shorten, until early 2015, when my failure point had dropped to about 250 yards (this was when shopping at a big box store became a problem).
The sensory deadness in my legs expanded in tandem with this process, starting in my toes, and then gradually working its way up each year, at a slow and predictable rate.
My formal Dx was in November of 2015, and since that time I have had a pretty stressful life situation. The elevated stress levels accelerated the rate of decline in my legs (and everything else). My cane was replaced with a full-time walker (due to falls, weakness and general unsteadiness). Then, I lost the ability to ambulate through a "step," instead dragging my legs forward by using core strength. At this point, I was falling 3-5 times a day (usually, however, these were planned falls, because I knew my legs were about to give out, and I looked for a safe place to drop).
Then, at the beginning of November, I collapsed in a busy cross-walk in downtown Atlanta. Folks thought that I'd been hit by a car, panicked when they could not get me standing back upright, and then called an ambulance. When neurologists at the hospital evaluated me, they immediately took my walker away, and put me in a complex rehab chair.
In my case, I could see everything coming well in advance, as it related to this process. While realizing full well that the Lord was in control, I believed back in Sept/Oct that I probably had about six months yet to walk. I was a bit too optimistic it seems.
Back to the goats, do you think that either goatgal or Fancy1959 might have a fainter? As I recall, the owner of a farm near mine had a small number of them. I think that perhaps we should set about adopting one, as our community mascot. . . . 😊
Hi Gaslight. To me are both variations in temperature, but the heat is the worse because cooks, boil my brain and drain all energy for the rest of the day.It's happened just walking in a huge parking lot during summer even with a hat. Feels like it's time to go to bed. About the very cold I couldn't not handle, but I am in Florida.The cold makes more spasticity and less blood flow.Too bad also. We have our thermostat working different than before anyway, including less or no sweat glands working properly. Noise is my second sensory bothered, I had before anyway with headaches. Since we have inflammation, this is included.
Hello @GasLight. I have now read all the replies to your thought provoking question. I have experienced most all of the trials mentioned here. Sensory issues with regard to sound have plagued me for years. The worst is the rattle of my husband turning newspaper pages, or the paper grocery bags! At times my husband's voice sends me over the edge. For instance, when I'm trying best to be focused on a little project which I'm certain I can do, and then my husband's unwelcomed voice speaks to me. The tone of his voice at that particular moment is most unsettling and pushes me over the edge. My startle reflex is alive and kicking. I thought this hyperreflexia was caused by medication I am taking, but maybe not.
These should be life's little distractions, but for me they are huge. I so wish I could treason them into minor distractions and be able to concentrate on what is really important. I pray to God that I control my mouth and don't lash out at anyone!
DebbyLou , we very clearly have walked parallel paths in these experiences.
Just the other day, I visited a friend, and she was unloading a ton of groceries while we chatted-- I ended up precipitously aborting my visit that afternoon just to get away from the sound.
Like you, I also struggle to maintain composure during such periods (which can itself become quite difficult, when no one else comprehends why you're getting agitated/bothered).
I've started using earbuds and music. It seems to help.
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