This Is MS Multiple Sclerosis Community: Knowledge & Support

[flora68]

About 80% of MS patients suffer from heat intolerance, and I'm one of ‘em. And while I realize it isn't summer all over the world right now, the United States is dealing with an especially rough summer, and we're only about halfway through, with the hottest part yet to come. This requires real coping skills and strategies, otherwise I for one tend to melt like Jell-O in an oven; weak, almost limp.

Living in Central Texas is a choice I NEVER would have made if I'd known I was going to get MS! Summer here is barely compatible with survival even without MS.

When I was diagnosed I was living in the country without a/c or even running water, and no stream or spring within 20 miles in which to cool off. It really, REALLY sucked. Living with wildflowers and horses and deer weren't enough reason to live there anymore, and without running water I couldn't even farm anymore. I really needed COOLNESS, and running water. As a baby boomer I grew up without a/c, but that was then and this is now, and these days especially I freaking NEED it! So I moved to the city (Austin) where I practically worship my a/c, and enjoy washing dishes; after 7 years living with no running water, the miracle of clean water coming out of a pipe on demand is still a major blessing.

And BTW thanks and God Bless Willis Haviland Carrier, who invented air conditioning (and who happened to pass away exactly two days after I was born).

And yes, of course I appreciate the irony that a/c use contributes to global warming... and yes, I feel bad about it. If I can think of the right Lotto numbers, I'll move WAY north and live without a/c again.

Anyway, aside from a/c, drinking ICE COLD WATER helps, and using ICE PACKS.

For most of us, if our body temp rises even a fraction of a degree, we have a noticeable worsening of symptoms; weakness, difficulty getting around, difficulty thinking, etc. Conversely, lowering the body temp even a little can help a LOT; I know it helps me think more clearly, which makes everything else easier.

Lowering body temp (obviously temporarily) is relatively simple and might help you too.

Summer seems to last forever here; I'd move north if I could, but alas I'm stuck here in Hell, aka Texas in the Summertime. Not to mention the drought...it NEVER rains here anymore at all, which just adds to the heat and vice versa. And for us old-timers who lived through the drought of the 50's, it's downright scary.

Heat-coping methods for me involve:
1. Keeping my a/c in tip top condition and staying INSIDE with it
2. Swimming in an icy spring-fed pool; I get leg cramps but they’re manageable and totally worth it
3. Liberal use of ice packs, popsicles, ice water both internally and externally
4. Avoidance of avoidable heat, especially hot cars! I only get outside EARLY in the morning or after midnight if at all, and I always have that big bottle of iced water with me.
5. Showering in tepid water and finishing off with cool.

Sadly I had to decline all invitations to summer weddings, festivals, and funerals. Just getting into a hot car can wipe me out for hours. So basically I just wait for cooler weather; I wish other people would too, but of course funerals can't be scheduled for my convenience.

BTW, I have a couple of MS-related blogs, one specifically about heat & MS- "MS Patients Against Global Warming", at this address, http://mspatientsagainstglobalwarming.blogspot.com/ .

The other blog is http://ldnformultiplesclerosis.blogspot.com/

The Global Warming blog was started halfway in jest, but with current weather patterns, I can't remember what the heck was supposed to be so freaking funny about it; we're burning up here! In Austin, Texas we're dealing with the same thing much of the USA is dealing with; a summer so freaking HOT it feels like the planet wants us GONE. Or at least, slow-roasted. Daily high temps have averaged over 101 this summer so far.

Speaking of which, The Onion had this headline after the horrific tornado outbreak and massive flooding in May; "Planet Earth Doesn't Know How To Make It Any Clearer It Wants Everyone To Leave". The article went on to say that "According to a statement released to the press Tuesday, the planet Earth has "just about run out of ways" to let its roughly 6.9 billion human inhabitants know it wants them all to leave."

Hey, you gotta keep that sense of humor to deal with MS! (And, you know, with the freaking Apocalypse, or whatever the heck's happening....). I have a countdown clock on the MS Patients Against Global Warming blog, counting down to October 1st, by which time the hottest weather is gone for a few months. Right now the Countdown to Cooler Weather Clock is at "65 days, 11 hours, 31 minutes" and counting....

Well, that's it. Hang in there and do whatever you need to do to STAY COOL!

[itaska21]

[/b]Thank you for confirming that i'm not some whining baby in regards to this relentless heat! I live in Houston Texas, the armpit of the United States. I have a never-ending cycle of symptoms right now, with no break in sight. I have muscle cramps, spasticity, and spasms, which, for the most part, occur in my arms and legs. Palpable knots in my calves feel so weird!pressure in my eye socket with a constant dull ache, and my head feels like a fire ball most of the time, accompanied by dripping sweat on my face, back, and chest. This even occurs in the best of air-conditioned rooms. Fans help a little. So... moving out of this state and heading up north would be a dream come true!! I pray for relief everyday. Just one day with no symptoms would make me happier than I've been in a long time. Good luck to you in your efforts to endure the summer heat!!

[jimmylegs]

hey itaska i know you went for iv magnesium etc a while back but are you taking daily magnesium supplement, eating high magnesium foods, and taking epsom (ie magnesium) salts baths to combat spasms and spasticity?

just as a quick note i recall a TIMS member who got bad spasticity with exercise *except* when surfing ... ie in a giant natural epsom salts bath

in general:
i can't put my finger on a perfect reference right now, but have read that 'magnesium activates heat defenses'.

serum level should be minimum 0.90 mmol/L. normal range is no good 0.70-1.10 mmol/L. in that wide a range, half the folks in it could have low magnesium problems but would be told you're okay, 'normal'.

[mrbarlow]

I live in Saudi Arabia and the tempeature often hits 50 degrees centigrade in the summer.

I take 500-600mg of magnesium a day and have no trouble with the heat. I sunbath in short bursts but can retreat into an air conditioned house.

[jimmylegs]

"like"

[flora68]

"....I take 500-600mg of magnesium a day and have no trouble with the heat...."

You may disagree, and you may be right, but personally I don't think taking magnesium has anything at all to do with the happy fact that you have "no trouble with the heat". I believe that you are one of the lucky 20% of MS patients who have no issues with heat intolerance. And I'm happy for you, especially considering the extreme desert climate you live in! I would think that electrolyte balance would be a very real concern in such extreme heat. (And once again, hooray for air conditioning!)

I've read up on magnesium and other nutritional supplements quite a bit through the years and never found any implication that magnesium supplementation has an effect on heat intolerance, or even on muscle spasms in MS. The only direct effect on muscle I've ever read about is that a magnesium deficiency can contribute to muscle weakness.

Taking supplemental magnesium certainly hasn't helped me with my heat intolerance; I've been taking 500mg of magnesium twice a day along with my calcium supplement for about 15 years, at the recommendation of my family doc for osteoporosis prevention (I'm over 60). I've only had MS for maybe 10 years at the most (I was diagnosed 8 years ago); all that magnesium and I still have heat intolerance.

The leg cramps I mentioned happen mainly when my lower legs get cold, either from being immersed in cold water or if the air in the room is really cool. But they also happen when I flex or extend my lower leg muscles in certain ways. My worst spasms happen mostly in the anterior tibialis, which is sort of the "shin" muscle, along the front of the calf. Potassium is essential for me for a number of reasons, but even that doesn't totally prevent spasms.

Heat intolerance for me means, for example, that I can't use a hot tub, much less a steam room, or sauna. The last few times I tried to use a hot tub, as soon as I immersed myself I had to immediately get out. And I mean, immediately! Not that it felt bad on my skin because it didn't; it just felt like being immersed in hot water was incompatible with survival, as if I were a goldfish tossed into a hot tub; yikes! Not the right environment at all!

On the other hand, cold temps and cold water have a beneficial effect on the heat intolerance, and on MS symptoms, at least for me. I swear I can think much more clearly the colder it is. And the cold-triggered muscle cramps are manageable.

When I swim laps in the icy-cold, spring-fed pool I mentioned (Barton Springs in Austin, an ancient and magical place, and HUGE), I've learned from painful experience to swim along close to the side of the pool where most of the ladders are, so I can get out quickly when the painful leg, ankle, and/or foot spams hit. All I have to do is get out and stand flat-footed on the warm ground awhile and the spasms ease up. After my muscles have rewarmed a little, I can get back in and continue carefully.

By the way, thyroid imbalances can cause heat intolerance, but since we have MS many of us look no further than the MS diagnosis for a reason for heat intolerance and other things. My serum thyroid levels (TSH, T3, T4) are checked twice a year along with other labs, and they aren't the problem.

As I'm sure you've all learned by now, some of the things MS does to us we can manage, possibly some we can treat with diet, exercise, etc., but there are others that we have to just live with. Heat intolerance, especially in an increasingly hot environment, is one of those tricky ones; you either have it or you don't, and there are degrees of having it. As long as the a/c works, I'm OK. But if and when the a/c goes out, I will be much less philosophical about it I assure you, but I do have a plan in place; I have close friends with an empty nest; they'll take me in if necessary until the a/c is working. If everybody's electricity goes away in some major disaster, I plan to hang out at Barton Springs.

[jimmylegs]

actually AFAIK it is more usually calcium deficiency that leads to muscle weakness.

some reading

1) Painful muscle spasm reversed by magnesium sulphate. A case report.

Clinton CW, Braude BM, James MF.

Abstract

A 25-year-old paraplegic man who had sustained a T3/T4 vertebral compression fracture 3 years previously presented with severe, painful spasm of the left hamstring muscle group of 2 hours' duration. This spasm produced extreme knee flexion of a degree which held the left foot posterior to the right buttock. An intravenous injection of 2 g magnesium sulphate produced immediate relief. Possible mechanisms of action of magnesium are discussed.

and

2) Magnesium sulphate for treatment of severe tetanus: a randomised controlled trial
"Magnesium infusion ... does reduce the requirement for ... drugs to control muscle spasms and cardiovascular instability."

and

3) The multifaceted and widespread pathology of magnesium deficiency

Even though Mg is by far the least abundant serum electrolyte, it is extremely important for the metabolism of Ca, K, P, Zn, Cu, Fe, Na, Pb, Cd, HCl, acetylcholine, and nitric oxide (NO), for many enzymes, for the intracellular homeostasis and for activation of thiamine and therefore, for a very wide gamut of crucial body functions. Unfortunately, Mg absorption and elimination depend on a very large number of variables, at least one of which often goes awry, leading to a Mg deficiency that can present with many signs and symptoms. Mg absorption requires plenty of Mg in the diet, Se, parathyroid hormone (PTH) and vitamins B6 and D. Furthermore, it is hindered by excess fat. On the other hand, Mg levels are decreased by excess ethanol, salt, phosphoric acid (sodas) and coffee intake, by profuse sweating, by intense, prolonged stress, by excessive menstruation and vaginal flux, by diuretics and other drugs and by certain parasites (pinworms). The very small probability that all the variables affecting Mg levels will behave favorably, results in a high probability of a gradually intensifying Mg deficiency. It is highly regrettable that the deficiency of such an inexpensive, low-toxicity nutrient result in diseases that cause incalculable suffering and expense throughout the world. The range of pathologies associated with Mg deficiency is staggering: hypertension (cardiovascular disease, kidney and liver damage, etc.), peroxynitrite damage (migraine, multiple sclerosis, glaucoma, Alzheimers disease, etc.), recurrent bacterial infection due to low levels of nitric oxide in the cavities (sinuses, vagina, middle ear, lungs, throat, etc.), fungal infections due to a depressed immune system, thiamine deactivation (low gastric acid, behavioral disorders, etc.), premenstrual syndrome, Ca deficiency (osteoporosis, hypertension, mood swings, etc.), tooth cavities, hearing loss, diabetes type II, cramps, muscle weakness, impotence (lack of NO), aggression (lack of NO), fibromas, K deficiency (arrhythmia, hypertension, some forms of cancer), Fe accumulation, etc. Finally, because there are so many variables involved in the Mg metabolism, evaluating the effect of Mg in many diseases has frustrated many researchers who have simply tried supplementation with Mg, without undertaking the task of ensuring its absorption and preventing excessive elimination, rendering the study of Mg deficiency much more difficult than for most other nutrients.

and

4) The effect of magnesium oral therapy on spasticity in a patient with multiple sclerosis

The effects of magnesium glycerophosphate oral therapy on spasticity was studied in a 35-year-old woman with severe spastic paraplegia resulting from multiple sclerosis (MS). We found significant improvement in the spasticity after only 1 week from the onset of the treatment on the modified Ashworth scale, an improvement of range of motion and in the measures of angles at resting position in lower limbs.

Magnesium is the natural physiological antagonist of calcium. For over one century it has been known to be a mulscular relaxant agent.

and

5) A longitudinal study of serum 25-hydroxyvitamin D and intact parathyroid hormone levels indicate the importance of vitamin D and calcium homeostasis regulation in multiple sclerosis

in this study you have to have full text access to read the table but the MS patient levels for magnesium averaged 0.85 mmol/L.

although that level is technically within the normal range, the normal range is too wide to be considered healthy. according to published peer-reviewed literature, patients should have levels of at least 0.90 mmol/L.

[flora68]

One other thing I do differently in this crazy hot weather involves my dog Claude*, who like almost every dog, benefits from going on walks. (Actually, I ride in a mobility scooter, so he's the only one actually going for a walk...). It's also nice for me to get out of the house.

These walks only last about 30 minutes.

We head out around about midnight in the summer (just as well since I never sleep anymore anyway). By that time, the pavement is less hot, so Claude's paws don't get burned, and of course the air temp is lower by then so that's much better for me, although last night it was still an oppressive 95 F at 10:30pm so we stayed inside. Tonight if it's still that warm, we're going anyway; I'll take an ice pack, which cools me and helps my back anyway.

Claude, a Texas Blue Lacy who is exactly the color of asphalt, wears his bright red light-up collar at night, looking like he's going to a rave. (FYI, here's Claude online: http://claudethebluelacy.blogspot.com/)

The only drawback to midnight walks is that this is kind of high-crime neighborhood. But I figure I can take a beating better than I can take the daytime heat, so we "walk" at midnight. I guess that's an indicator of how serious heat intolerance is, at least for me; I'd rather risk a mugging. Nobody's bothered me yet and I have a loud "survival" whistle and would use it. Wish me luck!

[jimmylegs]

which kind of sleeper are you?:

"Symptoms of magnesium deficiency can be difficult to distinguish from those of a calcium deficiency. Classical signs of magnesium deficiency are type II insomnia, excessive perspiration, and general body odour...
Type II insomnia, characterized by falling asleep easily but awakening frequently throughout the night, is often the reason individuals find
themselves tired even after several hours of sleep.
Type I insomnia, however, is associated with a calcium deficiency and causes difficulty in falling asleep."

[mrbarlow]

You maybe right and I am lucky not to suffer heat intolerance - although in hot humid conditions I do get prickly legs.

I have just come back from the empty quarter where day time temps have been hitting 60 degrees C. However its super dry and doesnt affect me anywhere near as bad as say 35 degrees and high humidity.

[ToniH]

I have horrible heat intolerance. It's funny because for the first 20 years of my life I was always cold cold cold! It drove my husband crazy because he's always hot. Road trips were always especially terrible with him, because he'd have the AC on ful-blast and I'd be shivering, wrapped up like an eskimo in the passenger seat. But now, I'm too heat intolerant for him. It's odd because 69 degrees is a sauna to me, but 68 is perfect, especially for sleeping. Living in central Alabama is pretty miserable at the moment. My heat intolerance is worse at night, and I start having something like hot flashes and I get really flushed, sometimes break out into hives. But my body temps stays elevated around 99.5 these days, so that probably doesn't help. I keep telling him that if the doctors can't fix this, we're moving to Alaska.