Aa
Describe your heat intolerance.
I am trying to figure out the heat intolerance deal. It's normal for people to feel dizzy/light headed in extreme conditions, no? So what differs between MS heat intolerance and the norm?
I am having major problems with attending church. 30 minutes in and I am a tremory, fainty mess. My vision goes blurry, I get super disoriented, and my tremors intensify to full body tremors. Is this a normal heat reaction? I try to be honest with my neurologist with my symptoms and I don't want to tell her I have heat intolerance if the intolerance I have is normal. I know that sounds dumb... I just do want to put too many symptoms on her plate because I don't want her to feel like I'm fishing for an MS diagnosis..
I am having major problems with attending church. 30 minutes in and I am a tremory, fainty mess. My vision goes blurry, I get super disoriented, and my tremors intensify to full body tremors. Is this a normal heat reaction? I try to be honest with my neurologist with my symptoms and I don't want to tell her I have heat intolerance if the intolerance I have is normal. I know that sounds dumb... I just do want to put too many symptoms on her plate because I don't want her to feel like I'm fishing for an MS diagnosis..
you know something out of all the posts I have made this was the nicest and most helpful one. I really appreciate you taking the time to answer my question.... yes most of my tingles jump around and they last about 10-20 seconds. I do have always had health anxiety but these last two months it took over. its just this sore like pain in my forarms that has not gone away in 2 months that has me so annoyed. dr. said tendonitis so well see how long it lasts but I was curious to hear from people that don't tell me " your crazy." so again thank you for you kind reply.
COMMUNITY LEADER
Hi Marshal,
I'm obviously not Quix but to address your questions, MS heat intolerance (Uhthoff's sign) is relating to the physical and or sensory reaction of their internal temperature rising from situations like weather, environment, baths/shower temperatures or hormonal, infections etc If your only experiencing tingling for 30 seconds, to be honest that sounds like a perfectly normal circulatory reaction to me.
You said "Im a bit of a hypocondrac (maybe more than a bit)..." I hope you shut down any rambling thoughts you 'maybe' having about MS, if you have trouble and they get too far beyond your controls, please speak to your doctor!
Cheers..........JJ
I'm obviously not Quix but to address your questions, MS heat intolerance (Uhthoff's sign) is relating to the physical and or sensory reaction of their internal temperature rising from situations like weather, environment, baths/shower temperatures or hormonal, infections etc If your only experiencing tingling for 30 seconds, to be honest that sounds like a perfectly normal circulatory reaction to me.
You said "Im a bit of a hypocondrac (maybe more than a bit)..." I hope you shut down any rambling thoughts you 'maybe' having about MS, if you have trouble and they get too far beyond your controls, please speak to your doctor!
Cheers..........JJ
Hello all! I figured I would also post the MSAA link for cooling vests here as I imagine this title will be well visited now and in the future. :)
http://www.mymsaa.org/msaa-help/cooling/
This will lead you to MSAA's page that contains a link for the application for cooling vest and supportive equipment assistance pediatric and adult. Hope this helps!
hugs,
baby
http://www.mymsaa.org/msaa-help/cooling/
This will lead you to MSAA's page that contains a link for the application for cooling vest and supportive equipment assistance pediatric and adult. Hope this helps!
hugs,
baby
Hi Marshall - Welcome to the group
The various combinations and potenial meaning of lesion types is nicely explained in a Health Page, written by our very own Quix :-) Yiu can find it here:
http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/Lesions-vs-Symptoms?hp_id=61
Kyle
The various combinations and potenial meaning of lesion types is nicely explained in a Health Page, written by our very own Quix :-) Yiu can find it here:
http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/Lesions-vs-Symptoms?hp_id=61
Kyle
hey I was looking around all over the internet and could not find an answer for my questions... I see that you are very active an knowlagable on MS so maybe you can help.
I have had a brain MRI and its all clear but Im a bit of a hypocondrac (maybe more than a bit) and I wanted to know this...
is it more common or more of a rare occurance for MS to be on the spinal cord only and nothing at all on the brain ?
and .. the heat intolerance thing... is it when your whole body gets hot or just certain areas?? meaning if I put a heating pad on my arm and it tingles for about 30 seconds or so is that how it works or is it a whole body rise in temp.?
thank you for taking the time to help out... my dr. says I have tendonitis in my arms because I have pain and tenderness in them. its just been 2 months almost that I get this achy feeling in my arms that wont go away. just curious thanks again
btw im a 26 year old male living in florida
I have had a brain MRI and its all clear but Im a bit of a hypocondrac (maybe more than a bit) and I wanted to know this...
is it more common or more of a rare occurance for MS to be on the spinal cord only and nothing at all on the brain ?
and .. the heat intolerance thing... is it when your whole body gets hot or just certain areas?? meaning if I put a heating pad on my arm and it tingles for about 30 seconds or so is that how it works or is it a whole body rise in temp.?
thank you for taking the time to help out... my dr. says I have tendonitis in my arms because I have pain and tenderness in them. its just been 2 months almost that I get this achy feeling in my arms that wont go away. just curious thanks again
btw im a 26 year old male living in florida
On the cooling vests: are they wet when you where them? Like the neck wraps that I soak in water? TIA!
Your info is so helpful!! Thank you! I know that I personally rarely use the 'right words' to describe things. Your descriptions are spot on and I can very much relate to them. My 'fainty'...really it is extreme fatigue. :-)
Yes to the temp variations only needing to be slight for me to feel an unbearable difference. Also same to 'still' air. I dont care if I just finished a large cool drink, if 3 minutes later I feel a temp increase that brings symptom onset, I immediately need a nice cool drink. Even a lukewarm drink will help if it is a very fast onset. :-)
I so much appreciate all the words of advice and encouragement I get here....thank you to ALL!
Yes to the temp variations only needing to be slight for me to feel an unbearable difference. Also same to 'still' air. I dont care if I just finished a large cool drink, if 3 minutes later I feel a temp increase that brings symptom onset, I immediately need a nice cool drink. Even a lukewarm drink will help if it is a very fast onset. :-)
I so much appreciate all the words of advice and encouragement I get here....thank you to ALL!
I concur that your symptoms seem excessive. IMHO churches are often poorly ventilated when compared to other buildings. And people are often crammed closer together.
All-over body tremors can certain be the severe form of tremors. Tremors are very common in MS and when it occurs "all over" including the trunk, it is called "rubror." This is well described in MS. Any doc seeing you for neurological complaints should hear about this, especially if it is of more recent onset and not lifelong. Just don't use the term "heat intolerance). Say you just can't tolerate the heat anyone.
For everyone: It is always better to tell a doctor what you are going through, than to put a name or diagnosis on it. "My foot tingles" is better than "I have neuropathy".
An idea for you is to have someone video your tremors whenever they are bad. This can be worth a thousand words of description. If you do video them, do not try to make them look worse. Neurologists can tell when people are accentuating things.
"Fainty" is not a particularly MS symptom and it does suggest that you are dropping your blood pressure from a metabolic (and not neurological) cause. But that should be checked out also.
My heat intolerance shows up as extreme irritability, weakness, severe fatigue, difficulty thinking and making decisions or doing any kind of executive mental work. It occurs over about 71F in the house or above 75 F outside, so it's a good thing I live in the wonderful Pacific Northwest. We only have 6 to 8 weeks a summer with temps that flatten me.
But, my 91 yo mother lives with me and she is always cold. We try to keep the house at 71 F and she covers with a blanket, while I strip down. Sitting I can tolerate this, but need a fan on me if I'm moving around. If I get too overheated, especially outside, I also sometimes pay for it for a couple days. Shows up with weakness, ongoing irritability (I sound like a real gem don't I?) severe fatigue and difficulty with cognition. Sometimes I will see new symptoms, especially an extension of areas that are already affected.
The MS literature states that a fraction of a rise in core body temp in susceptible MSers can cause symptoms. Even a hot shower can raise the core temp enough to bring on symptoms.
Quix
All-over body tremors can certain be the severe form of tremors. Tremors are very common in MS and when it occurs "all over" including the trunk, it is called "rubror." This is well described in MS. Any doc seeing you for neurological complaints should hear about this, especially if it is of more recent onset and not lifelong. Just don't use the term "heat intolerance). Say you just can't tolerate the heat anyone.
For everyone: It is always better to tell a doctor what you are going through, than to put a name or diagnosis on it. "My foot tingles" is better than "I have neuropathy".
An idea for you is to have someone video your tremors whenever they are bad. This can be worth a thousand words of description. If you do video them, do not try to make them look worse. Neurologists can tell when people are accentuating things.
"Fainty" is not a particularly MS symptom and it does suggest that you are dropping your blood pressure from a metabolic (and not neurological) cause. But that should be checked out also.
My heat intolerance shows up as extreme irritability, weakness, severe fatigue, difficulty thinking and making decisions or doing any kind of executive mental work. It occurs over about 71F in the house or above 75 F outside, so it's a good thing I live in the wonderful Pacific Northwest. We only have 6 to 8 weeks a summer with temps that flatten me.
But, my 91 yo mother lives with me and she is always cold. We try to keep the house at 71 F and she covers with a blanket, while I strip down. Sitting I can tolerate this, but need a fan on me if I'm moving around. If I get too overheated, especially outside, I also sometimes pay for it for a couple days. Shows up with weakness, ongoing irritability (I sound like a real gem don't I?) severe fatigue and difficulty with cognition. Sometimes I will see new symptoms, especially an extension of areas that are already affected.
The MS literature states that a fraction of a rise in core body temp in susceptible MSers can cause symptoms. Even a hot shower can raise the core temp enough to bring on symptoms.
Quix
They are available free of charge thru one of the MS sites. I can't remember which one; you have to have a letter from your doctor and fill out an application. They are wonderful. Perhaps Lulu will remember. If not, I will try and remember tonight to look in my MS book and send it to you. They are wonderful people and these items are donated to MS.
I have had heat intolerance for many years before I was dx with MS. I had learnt that hot showers, sitting in the sun etc weren't pleasant for me because I would get blurring of my vision, fatigue & weakness in my legs. If I get even slightly overheated these days I have added symptoms of vertigo, double vision & tremors. I find it hard to be in places like a car because of lack of air as well & particularly if someone is running the heating in winter.
I have learnt that it's only a slight change in body temperature that can set me off so cleaning or doing something physical can easily trigger symptoms for me. Mostly once my body temp has returned to normal my symptoms start to settle but not always. I am learning that sometimes the fatigue can linger for hours if I have been too overheated other times not so much.
I hope this helps.
Take care,
Karry.
I have learnt that it's only a slight change in body temperature that can set me off so cleaning or doing something physical can easily trigger symptoms for me. Mostly once my body temp has returned to normal my symptoms start to settle but not always. I am learning that sometimes the fatigue can linger for hours if I have been too overheated other times not so much.
I hope this helps.
Take care,
Karry.
Can you share more about your cooling jacket here? I have used the things for your neck that I soak in water. I cannot fathom wearing a wet jacket though. The past summers and the hint of Oklahoma heat already this spring has me scrambling for ideas to survive and to be able to leave the house.
I have thought about carrying a small cooler around with those soft gel packs for bruises frozen inside. I cannot go anywhere without water so already always have that with me.
I have been going to a lot of MS support meetings sponsored by pharma groups....they give out a lot of things with their med name on them: pens, magnets, etc....I find myself wishing they'd save up and get each of us a plug in cooler for our vehicles. :-) Met someone last summer who has a remote start on her car which blasts the AC....she gives it 10 minutes to cool down before going to get in. Looking into that possibly... I do know that walking across a black paved parking lot from a building to my car can literally wipe me out to the point of thinking I may faint. it can be very scary.
I have thought about carrying a small cooler around with those soft gel packs for bruises frozen inside. I cannot go anywhere without water so already always have that with me.
I have been going to a lot of MS support meetings sponsored by pharma groups....they give out a lot of things with their med name on them: pens, magnets, etc....I find myself wishing they'd save up and get each of us a plug in cooler for our vehicles. :-) Met someone last summer who has a remote start on her car which blasts the AC....she gives it 10 minutes to cool down before going to get in. Looking into that possibly... I do know that walking across a black paved parking lot from a building to my car can literally wipe me out to the point of thinking I may faint. it can be very scary.
I will add my two pennies worth here.
I constantly battle with wondering "is this an MS symptom or not?"...the more I read here about the symptoms others share makes me think I have assumed everyone feels and experiences things just like me~~meaning 'normal' people not those with MS. Now I am not so certain.
As to heat, for myself: I am DREADING the summer. Am in Oklahoma last month we already had 90+ temps...does not bode well for the rest of summer. Last summer we put a room AC in the bedroom. We have central AC but the past few summers have been so HOT and I have been miserable. Needless to say, last summer I stuck pretty close to that room with the AC on high.
What I noticed this winter was that I can have heat related symptoms just standing at the stove stirring a pot, or standing near the crockpot on the counter...the worst is to open the hot oven door.
I get dizzy, light headed, blurry vision, unquenchable thirst, and sudden whole body fatigue. Sometimes it sort of passes quickly, other times it lingers for the rest of the day/evening.
As to your symptoms at church: I'd suggest looking at where you are sitting, etc perhaps there is a heat source that you are not aware of. Many times just a warm room with not moving air can tip my tolerance scales. So, I am a big fanner....whatever is handy I will stand wagging in the air to create a breeze.
My husband who has always been uncomfortable with hot weather ( he RARELY wears a coat even in winter) cannot comprehend how quickly the heat can totally wipe me out and it wont even be a situation on his radar.
Unfortunately I react equally negatively with too cold: that is when I get a tremor, or shiver and it can within seconds escalate to an all out muscle spasm of horrible pain.
Bottom line: I have a very narrow comfort zone temperature wise.
I hope that you can find something that will alleviate the symptoms at church for you. Sometimes slipping off my shoes and socks will help me. It is miserable. It is not fun. It is hard to explain to others.
I constantly battle with wondering "is this an MS symptom or not?"...the more I read here about the symptoms others share makes me think I have assumed everyone feels and experiences things just like me~~meaning 'normal' people not those with MS. Now I am not so certain.
As to heat, for myself: I am DREADING the summer. Am in Oklahoma last month we already had 90+ temps...does not bode well for the rest of summer. Last summer we put a room AC in the bedroom. We have central AC but the past few summers have been so HOT and I have been miserable. Needless to say, last summer I stuck pretty close to that room with the AC on high.
What I noticed this winter was that I can have heat related symptoms just standing at the stove stirring a pot, or standing near the crockpot on the counter...the worst is to open the hot oven door.
I get dizzy, light headed, blurry vision, unquenchable thirst, and sudden whole body fatigue. Sometimes it sort of passes quickly, other times it lingers for the rest of the day/evening.
As to your symptoms at church: I'd suggest looking at where you are sitting, etc perhaps there is a heat source that you are not aware of. Many times just a warm room with not moving air can tip my tolerance scales. So, I am a big fanner....whatever is handy I will stand wagging in the air to create a breeze.
My husband who has always been uncomfortable with hot weather ( he RARELY wears a coat even in winter) cannot comprehend how quickly the heat can totally wipe me out and it wont even be a situation on his radar.
Unfortunately I react equally negatively with too cold: that is when I get a tremor, or shiver and it can within seconds escalate to an all out muscle spasm of horrible pain.
Bottom line: I have a very narrow comfort zone temperature wise.
I hope that you can find something that will alleviate the symptoms at church for you. Sometimes slipping off my shoes and socks will help me. It is miserable. It is not fun. It is hard to explain to others.
Heat does me in, for sure, without my cooling jacket, I would have to sit in front of the AC unit. I am dreading this summer…
Not everyone with MS has heat sensitivity....just an FYI. I am fine in the heat, but it is the cold I can not deal with.
If you do not have a DX of MS, I would see your doctor and rule out MS or find out. If you do not have MS, then maybe look at other factors; are you eating well, is age a factor, are you overweight, could you be diabetic, could you be dehydrated.....the list goes on.
Keep a symptom journal and see what is going on when these things happen. Plus, if it is only happening in Church, maybe this is God's way of speaking to you.
Good luck! Keep us all posted.
If you do not have a DX of MS, I would see your doctor and rule out MS or find out. If you do not have MS, then maybe look at other factors; are you eating well, is age a factor, are you overweight, could you be diabetic, could you be dehydrated.....the list goes on.
Keep a symptom journal and see what is going on when these things happen. Plus, if it is only happening in Church, maybe this is God's way of speaking to you.
Good luck! Keep us all posted.
For me when I get too hot, I get really really fatigued. And my eyes just want to shut. My legs & feet get numb & tingling, too. It seems to make my symptoms worse.
JJ,
Because my heat intolerance symptoms seem to be more overheated like, I very much agree with you in the normalcy of it. The only problem is I'm definitely not dehydrated (I drink more than a gallon of water a day), and all of my sugar tests always come back normal, but I was thinking it sounded more hypoglycemic as well!
I think the reason it takes so long to cool down is because everything is hot here... For example the church day, I went outside to try and "get some air" to cool down, and it was 90 degrees. I was struggling with the heat intolerance for an hour straight and it wore me out. I am not willing to rule out normal heat tolerance problems, however it's so irritating that I am the only person this happens to, for example, in church (which isn't the only place this happens ;) )
Reading these severity of YOUR symptoms makes much more sense to me in terms of Uthoffs, that is what I imagine when I hear MS related heat intolerance, however when the dr. asks, she's not specific (ie, do you have trouble with extreme temperatures? Well... Yea... bit doesn't everyone??)
Is anyone familiar with possible circulation problems and heat intolerance?
Because my heat intolerance symptoms seem to be more overheated like, I very much agree with you in the normalcy of it. The only problem is I'm definitely not dehydrated (I drink more than a gallon of water a day), and all of my sugar tests always come back normal, but I was thinking it sounded more hypoglycemic as well!
I think the reason it takes so long to cool down is because everything is hot here... For example the church day, I went outside to try and "get some air" to cool down, and it was 90 degrees. I was struggling with the heat intolerance for an hour straight and it wore me out. I am not willing to rule out normal heat tolerance problems, however it's so irritating that I am the only person this happens to, for example, in church (which isn't the only place this happens ;) )
Reading these severity of YOUR symptoms makes much more sense to me in terms of Uthoffs, that is what I imagine when I hear MS related heat intolerance, however when the dr. asks, she's not specific (ie, do you have trouble with extreme temperatures? Well... Yea... bit doesn't everyone??)
Is anyone familiar with possible circulation problems and heat intolerance?
COMMUNITY LEADER
What happens to you in Church could be a normal response eg dehydrated, hypogyeamic, hormonal etc to over heating and would of been a lot easier to work out, if what you experience was 'only' situation specific eg only church. I get why you'd be wondering because you are also describing this happening in other situations eg school, hot weather etc so it could possibly be the same as MS heat intolerance (Uhthoff's sign).
BUT i still think it would be wise to consider if the normal causes 'could be' in some way responsible for your reactions, because from what you have described "fainty mess. My vision goes blurry, I get super disoriented, and my tremors intensify to full body tremors" and also because you don't seem to recover back to your normal, after you have cooled down "Once I cooled down, I was so super lethargic all day I fell asleep twice...." it doesn't sound quite right to me, and i'm thinking it sounds more similar to heat stroke signs.
"Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever. Activities including sunbathing, getting overheated from exercise, or taking very hot showers or baths can have the same effect......"
http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Heat-Temperature-Sensitivity
Nowadays my reaction to heat is that it increasingly effects my vision - double, balance - wobbly, bladder - no feeling urine runs, speech - stutter/slurr, gate - string puppet walking, fatigue - energy & muscle and its always basically the same and doesn't stop increasingly getting worse until i cool down and rest/sleep it off. The signs are probably already showing up a lot earlier but i don't always realise what's happening until it's rather obvious and i'm burnt toast.
Cheers.........JJ
BUT i still think it would be wise to consider if the normal causes 'could be' in some way responsible for your reactions, because from what you have described "fainty mess. My vision goes blurry, I get super disoriented, and my tremors intensify to full body tremors" and also because you don't seem to recover back to your normal, after you have cooled down "Once I cooled down, I was so super lethargic all day I fell asleep twice...." it doesn't sound quite right to me, and i'm thinking it sounds more similar to heat stroke signs.
"Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever. Activities including sunbathing, getting overheated from exercise, or taking very hot showers or baths can have the same effect......"
http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Heat-Temperature-Sensitivity
Nowadays my reaction to heat is that it increasingly effects my vision - double, balance - wobbly, bladder - no feeling urine runs, speech - stutter/slurr, gate - string puppet walking, fatigue - energy & muscle and its always basically the same and doesn't stop increasingly getting worse until i cool down and rest/sleep it off. The signs are probably already showing up a lot earlier but i don't always realise what's happening until it's rather obvious and i'm burnt toast.
Cheers.........JJ
I don't have a dx, but when it gets hot, either outside or from activity, my left foot and leg start tingling like crazy, sometimes too my right foot to a lesser degree. As soon I cool down, the tingling stops. I also start feeling very spaced out, and stupid, as if I can't think straight and I am also very fatigued. On one notable occasion last summer, I also started trembling, and felt very weak. Hope that helps. Hope your neuro listens.
Many of us have some amount of heat intolerance. For me it's loss of leg control. Once my core temp reaches a certain level, my legs develop minds of their own. I can pick them up but can't control where they land. If I sit for a while, and cool down, my leg control is restoref
I would agree that you seem to have some level of heat intolerance. The only question is what's causing it. Full body tremors are not something usually associated with MS. Tell your neuro. Let her help you figure this stuff out :-)
Kyle
I would agree that you seem to have some level of heat intolerance. The only question is what's causing it. Full body tremors are not something usually associated with MS. Tell your neuro. Let her help you figure this stuff out :-)
Kyle
Yesterday has been the worse thus far. I couldn't shake it all day. Once I cooled down, I was so super lethargic all day I fell asleep twice at my desk while teaching. I also live in Florida so the highs are like 90 now and I'm starting to really notice the change. I am certainly noticing just an annoying increase of my already annoying symptoms. And let me add, I am undiagnosed, so now I just feel flat out annoyed!
I think it is safe to say you have heat intolerance based on the scenarios you described. I get the mini episodes when in small closed rooms that affect me with blurred vision and fatigue.
In the extreme heat and humidity of the summer months, I get cognitive issues in addition to the other symptoms I mentioned and I can also become lightheaded and fatigued to the point that I can no longer function physically. I can sleep roughly 40 hours on weekends during that season and never feel rested enough to get past Tues or Wed the next week.
This year I am hoping I will be better prepared and won't have it so bad.
Corrie
In the extreme heat and humidity of the summer months, I get cognitive issues in addition to the other symptoms I mentioned and I can also become lightheaded and fatigued to the point that I can no longer function physically. I can sleep roughly 40 hours on weekends during that season and never feel rested enough to get past Tues or Wed the next week.
This year I am hoping I will be better prepared and won't have it so bad.
Corrie
I don't have an actual diagnosis, but, heat is affecting me also. I have headaches, dizziness and blurry vision, but when I am hot, they intensify greatly.
I can't walk straight, i have an increase number of floaters in my eye, and very dizzy. I have always hated the heat of summer, but lately, i really am a mess
I can't walk straight, i have an increase number of floaters in my eye, and very dizzy. I have always hated the heat of summer, but lately, i really am a mess
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