Hot and cold wheater and AMN symptoms

[AMNBrazil]

Dear AMN carriers!

I would like to share on tought based on a recent experience.

I am 45 years old, and pain, tingling and numbness are daily symptoms I face. Pain changes from day to day, and increase if I had a short sleep period. Usually 8 hours as a minimum is a good time. less than that is bad.

I live in Brazil, that is a tropical country. In my city, Sao Paulo, average temperature ranges from 41F (winter) up to 95F (summer). Usually the temperature is nice, from 68 to 77F.

The first hot week of this year, I notice that my pain increased severely, especially at night. My twin brother also felt the same.

Then I started to pay attention, and on lower temperatures pain was better.

On November I had a meeting in Montreal, where the wheater was ranging from 28 to 50F. I spent 6 days and the sensation on my legs was extremely amazing. I had at least 2 days without any pain, tingling or numbness, regardless the fact that I was not sleeping 8 hours!

I read that people with Multiple sclerosis suffer more in hot wheater, which puts me to think about how other AMN pacientes fells considering temperature changes.

Hope to contribute and help sharing this.

kind regards

Rodrigo C A Lima

[StevenSims]

Hello,

I'm the opposite I'm worse through the winter! It's definitely vitamin D from the Suns uvb Ray's makes me better? You live closer to the equator so you get more uvb Ray's? I definitely think vitamin D is good for us and there's a ongoing study about this?

All the best

Steve

[AMNBrazil in reply to StevenSims]

Thanks for your message Steven. I am actually taking 200,000 UI of vitamin D each day. I started with 100,00 UI but doubled up to March 2020 to see my lab results. I am taking vitamind D for 1,2 years and the effective symptoms that basically desapeared was the spams on my legs! By now I cannot see any other clear benefit. Kind regards

[StevenSims in reply to AMNBrazil]

Wow that's a super high dose?? I've noticed a reduction in pain and spasms too! I've not taken any since being on min102 though

All the best

[Equinney]

For myself it’s finding a ‘happy medium’. I’ve noticed that the cold helps with pain, but increased spasticity and stiffness. When it’s warm, the pain increases but the spasticity and tightness gets better. And our Arkansas weather doesn’t help. Monday to Tuesday was a 40° temp drop for the high. I am also on 10,000 D. Have thought about doubling it. After seeing this, I probably will.

Best wishes in Brazil

Eric

[monkeybus]

I noticed years ago, hot, humid weather, and my legs are like concrete.

I'm much better in the cold. I hate the cold, though.

I tried the huge doses of Vitamin D. No good. Shame.

[tieaknot]

As an affected female, I too notice changes with weather. It’s really a catch 22 for me. “Cool” or “warm” sunny weather is best for me, but like Goldilocks, it can’t be too cold, it can’t be too hot, and it can’t be too humid and the barometric changes between the weather systems kick my migraines and other joint pain into high gear. Really cold weather has me walking like a stiff zombie, hot weather saps every bit of energy and the weakness and pain seems worse.

[angelicahca_]

Olá Rodrigo! Finalmente alguém do Brasil!

É um prazer te conhecer! Temos muito o que conversar!! Recentemente eu e meu marido encontramos está comunidade pela falta de informação e médicos especialistas no nosso país! Vc se trata por aqui?

Hi Rodrigo! Finally someone from Brazil!

Nice to meet you! We have a lot to talk!! Recently my husband and I found this community for lack of information and medical specialists in our country! Are you around here?

[jolocny Volunteer]

Hello!

I agree, AMNBrazil, I have the same experience with heat & cold. It's a good thing I live in central NY, on Lake Ontario! I do NOT have pain but I am able to function far better in the cooler/cold weather. Most I've talked with are the opposite, they prefer the warm/hot temps, swimming pools, etc.

[aaa291]

Hi There,

I am 49 years old, live in Montreal

I think the problem with pain is the humidity, when it’s a rainy day here, I fill it as soon as I wake up, I actually fill better in worm whether, you maybe felt good in Montreal because you wore indoors where there was heat & low humidity, in my house the humidity level is low (I have a few thermostats & humidity meters around the house and I see it), that’s why you felt better, next week I will go to Florida for 3-4 weeks, I hope it won’t be so humid there.

Re spasms, it’s been a few years I can’t walk with a Denim pants, most of the time with jogging pants and shorts are the best,

I find when my legs are free, I have much less spasms even underwear is a problem, at night I sleep with a light short one size bigger, it helps.

The lower back pain & foot (drop foot kind)

Is the big problem.

I tried a special foot brace but it gave me a different pain in the hernia

[AMNBrazil]

Dear friends,

It is a real pleasure to recieve all your comments and toughts about my post! Thanks so much to contribute.

I will try to answer here, touching upon your posts.

1 - It is interesting to see that for some of us, hot-warm wheather helps with the pain-tingling-numbness in the pegs. For other, the cold season makes it feel better, as it looks me case.

2 - Umidity can be an important indicator for us to be aware and to measure. IN my city, Sao Paulo, it is not humid and I face good and bad days. I will try to pay attention on humidity.

3 - Vitamin D: as I mentioned, I am following an experimental Protocol with high doses of vitamid D per day (ranging from 100,000 to 200,000 UI daily), plus Magnesium and other vitamins that help the metilation process on cells. ZERO dairy products are allowed because to avoid Kidneys issues due to the metabolization of calcium. Spams basically disapeared, and as long as I understood, this has a lot to be with the Magnesium intake. I will follow the 200,000 UI per day up to March 2020 and will brings news then.

4 - Physical therapy and exercises: I am doing Pilattes and resistance exercises which, by the way, helps a lot. I am not walking very good, but that´s part of the AMN. Without the exrcises I would be even in a bad condition for sure.

5 -

Mind and positive approach: I am having regular appointments with an amazing Psychologist, which helps a lot to manage anxiety and fears. I strongly recommend any mental support. Meditation also is a good exercise.

6 - Brain MRI every year: in my Kennedy Krieger Institute visit un late August, Dr Fatemi told me that my MRI is good and I should do it once a year. I told him that my twin brother does not want to do it and he said that the exam is critical to allow a proper management if the condition changes to cerebral ALD.

Hope these helps and let´s keep in touch.

Kind regards

Rodrigo

[COwithAMN Administrator AMN EASIER Volunteer]

Well done Rodrigo, it's great to see you have such a positive attitude to your AMN and are keeping on top of all its odd symptoms and effects! Your thoughts on how it affects you in Sao Paolo are very interesting.

Chris

[SongStream]

Wonderful post and comments. I function better when it is warmer. As it gets cold, I am way more stiff and immobile. Sometimes at night , I've had to wear mittens to bed as my hands (and feet) are constantly cold. I know with MS, that heat is an issue. Funny, with a disease that "mimics MS", I'm the opposite. Yes! Mental health is imperative along with exercise! I would not be able to do what I can today, otherwise. For those pre-symptomatic, learn and practice yoga. My flexibility is admirable with the gym trainers and it feels so good to stretch even though we all know it's short lived. All the best my friends.

[florida59]

I was diagnosed in 2005 with AMN I find I’m more mobile in warm weather I live in Ireland and it’s cold at the moment and my muscles stiffen up in the winter time. I look forward to the sunshine