Tuesday, January 3, 2012

Multiple Sclerosis Symptoms and Winter Weather

Writer, ms.about.com

Most of us with multiple sclerosis are heat intolerant to the point of being unable to function outside during peak summer temperatures. When I asked people with MS on my blog what their MS temperature “limits” were, I was surprised that many people came back with answers lower than I would have expected – most said that 80 degrees was pretty much their cutoff for comfort and that 55- to 70-degree weather was really ideal.

However, it got even more interesting when several people said that while hot temperatures were not good, the cold wasn't so great for them, either.

Many people wrote in to complain of increased spasticity in the cold weather. Readers mentioned that their limbs "felt like wood" or that their joints ached during lower temperatures. A couple of people also mentioned that the MS “hug” could be intolerable in the cold. (The MS hug is the gripping feeling around the torso that is caused by a lesion in the spinal cord that results in spasms in the tiny muscles between the ribs.)

I also know that some people living with MS tend to feel more fatigued in winter months. This could be an indirect result of coping with some of the symptoms mentioned above. It could also be that the shorter days and limited sunlight are exacerbating depression, which can be a symptom of MS.

New data is emerging all the time on the role of vitamin D in MS. Experts are fairly confident that low vitamin D has a role in developing MS, but now it is really looking like vitamin D levels have an impact on relapses and disease progression. It has been well-established that vitamin D levels in people are lower in winter months due to less exposure to sunlight (which is necessary for the body to produce vitamin D). Perhaps we feel our symptoms more acutely when our vitamin D reserves are at their winter lows, although this hasn’t been confirmed yet by scientific studies.

However, the effects of cold on MS symptoms have not been studied extensively. I was able to find one study that compared people with MS in the same four-week inpatient therapy program held in two different locations: Spain (warm) and Norway (cold). After therapy, the average walking distance had increased more in Spain (70 meters, as opposed to 49 meters in Norway) and participants also reported less exertion after walking in Spain than they did in Norway.*

I've put together a few tips below to help you enjoy the colder months if you find that you are bothered by frigid temperatures. Please add your own stories and tips in the comments section.
  • Soak up the sunshine. As much as you can stand to be outside during the warmest part of a sunny winter day, do it (within reason). Help your body produce vitamin D. Even better, get a little exercise outside while you are at it. 
  • Don't overdo the heat inside. I tend to get a little dramatic when I get too cold and, as a result I take really hot baths or showers. Recently, I got dangerously dizzy from my hot shower. Remember, extreme heat is not our friend, either. 
  • Warm yourself from the inside. Try drinking a hot beverage to take the chill off and warm your core faster.

Like many other situations that we must navigate through with MS, a little strategic planning about winter activities can help you have a little control over symptoms. Really put some thought into what you enjoy doing in the winter, take a couple more precautions and get the most out of the cold months.

*It should be noted that the people in this study were not heat-intolerant.

56 comments:

  1. Great post. All good info. Warming yourself from the inside out is really helpful. Thanks. *karendianne.

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    1. In Michigan, we had a weird heat wave 2 weeks ago,it was close to 80. One day when I went to the gbrocery store, I could barely walk back to my car, even pushing the cart. Struggled bringing the groceries into the house and then putting them away, took 2hrs for the whole ordeal.

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  2. Good point about not going overboard with heat to get warm. I have recently found that I can't always wear the fuzzy warm socks, AND chunky sweater. AND furry boots, AND scarf (Etc). Layers and a hot drink do (for me) prevent spasticity and fatigue without bringing on pain and dizziness.

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  3. MY MS IS SO WEIRD. I AM OPPOSITE THE COLD HURTS ME WORSE THAN HEAT. ITS LIKE WHEN I GET COLD IT TAKES MY BODY SO LONG TO WARM UP. AND I CAN ONLY GET WARMED UP BY A HOT BATH AND ITS NEVER BOTHERED ME. BUT THE HEAT IN THE SUMMER AFTER 80 IT STARTS HURTIN ME THEN////

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    1. Your MS is not wierd. Either that or I'm a wierdo with you. I CANNOT tolerate the cold at all and it feels as if I finally start to thaw out sometime in early June! Not so much a problem with the heat. I actually adore warm days. I've had a couple bad flare ups with the heat, but nothing like the cold!

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    2. Mid-temp heat has never really bothered me either. I live in Southwestern Washington where our summer weather is an average 80-85 degrees. Rarely do we have 100 degree temps that last longer than a week. It is the cold weather that has effected me more, especially this year. I am definitely more fatigued and the neuropathy in my feet and lower limbs is at an all time bother mode. I am definitely looking forward to warmer weather.

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    3. my ms prefers the heat than the cold.I can barely walk in winter and have pain.

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  4. I absolutely love the cold. I live in South Dakota and people look at me like I've got 3 heads when I say I want it colder. I'm able to not only snowblow my driveway but also my neighbors and the entire sidewalk without getting over tired. I don't "over dress" under my snow pants/jacket. Usually just a t-shirt, sometimes a sweatshirt.

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  5. I totally agree with this. Heat and very cold weather effects me dramatically. We all know how heat effects us who have MS. The cold, I get muscle spasms from head to toe! I have 2 children who are skiers (one going to Utah in 1 week to be filmed), and when I go to their ski competitions, I stay in the lodge until they are up to ski, and go back in. It is just as bad as summer!

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  6. The cold has always bothered me much more than the heat. I keep it inside, as not to be a downer to others, but the cold just makes me miserable. The snow is fun and pretty, but other than that, I am happy when winter has passed (although, I don't want to wish my life away!).

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  7. Having lived in both northern and southern climates, I have had ample opportunity to evaluate which is worse: cold versus hot. Cold is definitely worse for me. An interesting test of this is happening right now in Florida where the temperature has gone from 75 degrees (good) to 50 degrees (bad) and will likely return to 70+ within a day or two (likely good). While extreme hot is enervating, certainly, even mild cold weather, as we are experiencing in Florida right now, seems to make my body resemble a windup toy that needs to be rewound.
    Judy

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  8. Ken, I live in South Dakota, too, but winter is not fun for me because the the spasticity is worse and I have trouble getting warm.

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  9. Vit. D is obsorbed by the body via sunlight help not made by the body, a vitamine is not made by the body its obsorbed with the help of the sunlight. correction!

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  10. I have been able to get out in these cooler temperatures and walk a little! The cooler temps really help me!!

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    1. Same as me! The cold helps me move around too. Yes it takes longer for me to warm up due to the cold but i prefer shivering n my legs functioning rather than being stuck in a wheelchair.

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    2. Agree with u. It takes longer for my limbs to warm up in the cold but it's still better than being stuck in a wheelchair.

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  11. recently diagnosed with MS, mine is atypical, heat doesn't seem to bother me, other than fatigue increasing as the day progresses. The cold is somewhat tolerable, except that I have a knee replacement and the arthritis and weakness in that knee doesn't make it any easier to walk. Also I am plagued by falls-unannounced-no warning-bam I can be walking along and hit the ground...

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  12. I have a very hard time with the heat in the summer, like most other MS'ers, but the winter can be worse sometimes. In the summer, heat is usually accompanied with air movement (wind, breeze, or fan's) whereas in the winter, there usually is none. The ceiling fan's get reversed, and even though it may only be 70+ degrees inside, is can seem warmer. Fatigue medications can also raise you core body temporature. Combine all of these, and 75f inside can feel like 85f does in the summer.

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  13. I live in North Dakota and I'll take the cold over the heat any day. As soon as it gets around 75 out I start swatting profusely and get tired quickly. During the winter months like Ken I stay out snow losing the neighbor jood

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  14. In winter the neropathy in my hands really hurts when they get cold, I use mittins and "hot hands" in them but still they hurt, summer is not a friend anymore either.

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  16. I have had MS for 17 years. What I have found for myself having lived in, and worked in, all climates is that for me, personally, I do better in cold than in hot weather. However, I am a bit of an enigma with MS because even hot weather does not have a real affect on me. I can sauna, Jacuzzi, walk out doors in the heat and have little trouble.

    My MS became Relapsing Progressive in 2010 and I have since had to stop working and go out on disability as MS has been slowly taking away many ability's.

    I try to exercise everyday and I’m still ambulatory,(Ampyra has been a real blessing for me.)

    I spent a decade as a human subject in MS research studies at UCLA, and the one thing I can say for certain is that no two people with MS have the same symptoms.

    The degree of disability based on environmental factors (as the author mentioned) has not been studied, but in my own opinion it would be a red herring to even entertain.

    The best advice I can give to all of us who suffer from MS, and its variants, is listen to your body. Medications can impact how we feel, daily stress, fatigue (which as the author pointed out can be depression) and a host of other factors. All of the authors ideas are great, just remember we are all individuals and we all handle our illness and environments in our own ways.

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  17. "When looking for a [vitamin D] supplement, make sure you choose one that is encapsulated in an oil base. These oil based capsules are most likely better absorbed since vitamin D is fat soluble."


    Learn more: http://www.naturalnews.com/030500_vitamin_D_absorption.html#ixzz1iRy8Nc00

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  18. Cold is cold I don't feel any better, but the heat brings it on bad.

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  19. Glad to know I'm not alone in having MS-related discomfort in colder weather. In my case, I can endure dry heat (think summertime in Arizona) much more easily than the high humidity common to summertime in the Mid-Atlantic region. Something in the 70s with low humidity is my ideal.

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  20. As always, fantastic work. You always make me feel better, even when what the article discusses is something that makes me feel badly. :) I appreciate your work more than I can express. The cold really shuts me down. Probably more than the heat. But, I am relatively "new" to MS. So I realize it can change. Thanks again for contributing and making us all think.

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  21. When the Summer Texas heat gets above 80 degrees, I just want to hibernate in the house with the a/c turned down to 68. However, I do tolerate hot showers and baths. I have recently had MRI's:brain, cervical, and thorasic, with lesions for the first time, appearing in my cervical region. I think this must explain the episodes of pain across my upper back. For the past 3 1/2 years I have been having episodes of double vision, which no doctor seems to know the origin. One neurologist says MS related, another says not. Opthalomologist says not my eyes. I don't know, but I do know it is frightening and uncontrollable, and happens without warning, so that driving is very scary...I have to pull over and wait it out. I do have just one image if I close one eye. I was diagnosed 12 years ago, and choose not to take any medication after I had an anaphalactic reaction to the injectible that I had been taking for 6 1/2 years. Sorry that I have rambled on about things other than temperature problems!

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  22. I find that spring and fall are best. Summer and winter get the best of me. The heat makes me fatigued and my thinking fuzzy. The cold makes me stff and spastic. The short days effect my mood.

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  23. Thank you, for all the information, it really helps me.

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  24. Thank you for your info. I have Lupus and MS. The summer is just horrendous for me. I love the cold temps. My comfortable temp would be about 45 or less degrees. When it gets warmer in the spring the temp I can only deal with would be up to 65 degrees. I just stay inside with the a/c on usually the whole summer and if the spring is warm as well. With the Lupus I can not be outside in the sun, so I am dealing with a double sided sword. Your article was very informative. Thanks again, :)

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  25. Cold is a serious problem for me. My husband frequently asks me if I'm really that cold. 70 is my absolute limit for short sleeves. Heat on the other hand, bring it on. There was a day last summer when the temperature was 114, no humidity! What a beautiful day! Of course, I wear a tank and shorts, but beautiful, warm. I'm sitting in a 64 degree room in fleece and I could be warmer. Of course, the idiot neuro only knows what is most common.

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  26. warmer weather is definitely worse. I have central air, but in the summer I also have a window unit in my bedroom and it is set at 60*. My husband gets cold, but he understands how that helps me. I always look forward to fall and spring. Winter is not too bad unless it gets below 20*. That's when my entire body tightens up and the spacticity acts up pretty good.

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  27. I have probably had MS since 1999, however, I was not diagnosed until July 2011. I moved from Seattle to Texas in 2000 and then New Orleans in 2007 and back to Seattle in 2010. I truly believe that if I had not come back, I would still not be diagnosed. Spring of 2011 is when my symptoms got to the point that I was diagnosed. I have since spent a week in Phoinx and I was walking better for a few days after getting back. I think the winters here most certainly make things worst. I really didn't have any issue with the high temps and humidity of the South, but the two winters now back....bad! I tried Tanning this last fall to get the UV and Vit. D. I have since stopped and am taking 5,000 mg of Vit D and I feel as good as when I was tanning, but still affected by the winter. Ugh. I don't think it is so much the cold as it is of the darkness and overcast. Just my input for whomever it may help.

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  28. When I take a hot shower, getting out is tricky because my right leg is so weak and I also feel a little dizzy. I grab onto walls trying to stay up until I get to my chair. When the house is cold, my right hand and foot feel as if they are being soaked in a bucket of icy water. I do notice more spasticity in the winter. My Dr monitors my Vitamin D level closely and I do take supplement Vitamin D. If I don't get outside, I sit next to a sunny window and get my sun that way.

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  29. I was diagnosed in 2007, and began having real annoyances with the cold after some permanent damage revealed itself with neuropathy in both feet and most fingers. When I get cold, all toes and fingers feel icy to my brain, not to touch, lose all feeling, but some pain, and take a LONG time to warm up. I do have the typical fuzzy, numb overheated summer feeling too...but it goes away much sooner than the icy pain.

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    1. Very similar symptoms. You are not alone, and diagnosed same time.

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    2. I have pretty much the exact same thing - only sometimes they actually are cold to the touch and turn purple. Dx in 2002 with MS and in 2012 with Reynaud's, tho this Rhuematologist is positive I've had it for *many* years. Unfort. there's no real treatment other than stay warm

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  30. I was diagnosed in October of 2010 but was always told that I may have Chromes disease until I moved to Arizona where I ended up hospitalized. I have problems dealing with the Arizona heat and I feel that Spring and Fall are the best times for me. (I cant deal with the cold either) Sometimes I feel lost and don't really know what to do or where to live. I just want to feel better. I was told that in a sense, MS is a Rich Mans disease because you have to move to what ever climate that is comfortable for you at the time!! That takes money!!

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  31. My mother has MS and I believe one of her half-sisters from her dad (different mom) had it as well. I was reading this blog because of her. But the MS hug quite honestly has me freaked out. Very recently, perhaps the past 6 months, I get this horrible tightening sensation in my chest and can barely breath. I was convinced I was having a heart attack and called an ambulance. Absolutely nothing wrong. Is there a genetic component? Did the "hug" start with the onset of symptoms or is it a later development? I also get this weird thing where it hurts to touch my skin and this weird buzzy feeling in my arms and the back of my head. I know I perhaps shouldn't be asking this stuff to people really going through it, but I get paranoid. Thanks.

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  32. My mother has MS and I believe one of her half-sisters from her dad (different mom) had it as well. I was reading this blog because of her. But the MS hug quite honestly has me freaked out. Very recently, perhaps the past 6 months, I get this horrible tightening sensation in my chest and can barely breath. I was convinced I was having a heart attack and called an ambulance. Absolutely nothing wrong.

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  33. David Summers, a 37 year old MS patient from Murfreesboro, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs.
    “It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in Duluth Georgia. “The Interventional Radiologist who did it told me that 50% of all MS patients who have the jugular vein-clearing therapy eventually restenose. I didn’t believe that would happen to me if I could get it done. But I have had MS for 16 years and apparently my veins were pretty twisted up”. Within 90 days, David’s veins had narrowed again, and worse, they were now blocked in even more places than before his procedure.
    “I was so happy after my original procedure in 2010. I immediately lost all of the typical symptoms of MS. The cog fog disappeared, my speech came back, the vision in my right eye improved, I was able to regulate my body temperature again, and some of the sensation in my hands came back. But as much as I wanted to believe I felt something, there was nothing below the waist. I kind of knew that I wouldn’t get anything back in my legs. There was just way too much nerve damage now”. But any improvements felt by David lasted for just a few months.
    After his relapse, David and his family were frustrated but undaunted. They had seen what opening the jugular veins could do to improve him. Because the veins had closed so quickly after his liberation procedure, they considered another clinic that advocated stent implants to keep the veins open, but upon doing their due diligence, they decided it was just too risky. They kept on searching the many CCSVI information sites that were cropping up on the Internet for something that offered more hope. Finding a suitable treatment, especially where there was no known cure for the disease was also a race against time. David was still suffering new attacks and was definitely deteriorating. Then David’s mother Janice began reading some patient blogs about a Clinic that was offering both the liberation therapy and adult autologous stem cell injections in a series of procedures during a hospital stay. “These patients were reporting a ‘full recovery’ of their neurodegenerative deficits” says Janice, “I hadn’t seen anything like that anywhere else”. She contacted CCSVI Clinic in late 2011 and after a succession of calls with the researchers and surgeons they decided in favor of the combination therapies.For more information please visit http://www.ccsviclinic.ca/?p=904

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  34. xperts used to think that exercise would increase fatigue in MS patients, but recent data suggest just the opposite. Regular activity increases energy and improves mood. And it actually plays a neuroprotective role in the brain, staving off some MS-related damage. MS, 85 percent said that exercise had a positive impact on their lives. If you're currently not able to work out the way you once did, that's okay; the main thing is to move as much and as often as you can.
    Linda Thomas

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  35. While some MS patients who have had the liberation therapy are reporting long-term benefits from having the procedure, there are just as many for whom the ‘liberation therapy’ has failed as an effective therapeutic intervention. This doesn’t mean that these patients didn’t have some immediate benefits once the neck veins were opened; most did, but over time the veins restenosed again and their MS symptoms returned. In fact, having seen their MS symptoms almost totally disappear however briefly once their veins were cleared, patients who have restenosed want it done over again, as many times as necessary in some cases. However, there is now a new and growing subset of MS patients who have had vein widening venoplasty multiple times, usually to less beneficial effect each time, leading to the later discovery of so much intraluminal scar tissue by the second, third, or fourth attempt at re-opening the veins that the procedure cannot be performed again.For more information on the combination therapy protocol and study email to apply@ccsviclinic.ca or call 888-468-1554. http://www.ccsviclinic.ca/?p=1071
    http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s

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  36. I do ok in summer in WI if I am dressed properly for the heat. Winter is tough. As soon as it gets somewhat cold outside (below 50 degrees), I start to have problems. After 4 PM, even when I am in a warm house, my legs from the knees down feel like they are encased in ice. I have to wear long wool socks and often have to go to bed with many covers and an electric blanket inorder not to feel like I am freezing. Fortunately, I'm able to go to AZ for Dec. through May.

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  37. ernie I have degeneratif artherites in the civical spian, the cold kills me the heat above 80 makes me week but cold I can bearly move do to pain. I'am 62 years old.

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  38. My history is both warm and cold exacerbates spasticity. Cold never affected me until 20 yrs after DX. Heat graduated from onset in intensity.
    has anyone found any supplements good to reduce symptoms prior to going out? I do use vitamin D3 already, live in Minnesota

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    1. How much Vitamin D3 you take? I take 40000UI per day...

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  39. Wow! I always thought my narrow window of temperature comfort was "all in my head!" Thanks for the info and the validation that MS does affect my body in both temperature directions!

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  40. My MS only bothers me in extreme heat, the cold doesnt bother me at all, i recently moved from Idaho to Alaska and it has been really cold here and it hasnt bothered my MS at all, as a matter of fact i have been taking walks with my dog in it lol. Its the shorter days that really have me depressed but i bought a happy light lol and that is what there called. It's a UV lamp that has two settings on it, partial sun and full sun and it really helps with depression :)

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  41. I agree with some of my northern friend about the cold weather. Guess there is to much Swedish blood traversing my veins because the cold weather feels great. I am a photographer who has been compiling cityscapes. My photo season starts around the 1st of October.

    Last week we had mid 40's and sunshine. It was wonderful (as were my photos). Now a caveat, I live in Ohio and winters are generally damp and cold. That makes everyone miserable, both MS'ers and those whom we consider normal. I lived in Minnesota for 20 years and would return in a heartbeat if I could because the winters are colder, but oh so much nicer because of the sunshine and lack of heavy moister.
    People tend to be happier and very active in the Northern lands. Ohio, we just count the days until spring, then count the days before fall.

    I also think winter comfort has a lot to do with one's heritage. My African-American friends dread the winter. I can not tolerate the hot Ohio weather. This gal is just about ready to put the thumb out to hitch hike but I rather think nobody would pick up a, uh-hum, older lady in a powerchair. Merry Christmas to all my MS friends.

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  42. part of my problem is that when it gets cold outside the family cranks up the heat in the house and I feel like I am suffocating.

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  43. Very helpful post the cold temps definitely make my symptoms worst!

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  44. I live in Wisconsin,ugh, it is the cold that really exacerbates my symptoms of MS. The spasticity, the pain, OMG! Heat really doesn't bother me that much, unless it's over 100. We had weeks of that last summer, that bothered me some, but not as much as the cold does. I wonder if it because I am hypothyroid, with only half a thyroid? I think that because my body temp "normal" has been about 97.2 (has all my life)is why I have a higher heat tolerance. I think I need a tropical climate to live in.

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  45. My wife has MS since january 2007! Through a lot of hospitalisations, we discover that cold could be the friend off MS! Not with Laurence! She prefers warm, but not only warm, either less humidity (10 - 20%)
    We discover that our holidays in Egypt, Kenya and South France were great holidays for her!
    Less spasticity, less tiredness, more memory, more concentration!
    In Egypt, temperature was about 20-35 °C but humidity under 20%!!
    In Kenya, the same!
    In SOuth off France, about 30 °C and 20-35 % humidity!
    That give better results for her than cold!

    We almost decide to leave our beautiful country (Belgium) when I finish with my work and go live in the south of France! We hope so that she gets better and better!
    Laurence.

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  46. Very informative and helpful post.
    Thanks for sharing.
    Try comfy comfort color nice pants to stay warm in winter.

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  47. i was just diagnosed this past year in august of 2012.....so this is my first winter with MS living in NY....does anyone experience intense and severe bone pains apart for the spasticity?

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