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is anyone else always cold?

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  • #16
    freezing all the time in the fall/winter!
    I have more to claim.
    I have to fight through the hard places
    to go and get it!

    most recent video:

    http://www.youtube.com/watch?v=fHLEinnhYtg

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    • #17
      lorrie, any OT who has training in autism spectrum disorders (the blankets are mostly perscribed for this population) can tell you what weight would be a good weight for you to have as a blanket. mine is so wonderful. i love it.
      yeah, deffinatly ask about the florinef, as far as i know, there are no plans to discontinue it.
      have you ever tried wearing T.E.D. socks? they are double purpose for me... they keep the ankle swelling down, and make it so i can wear regular (as in, non-knee) socks with my AFOs.
      mitochondrial disease complex 1 deficiency, suspected HSP
      type 3 ehlers danlos syndrome w/ type 1 overlap, g and j tubes
      aspergers & friends
      survivor of 2 TIA strokes

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      • #18
        Hey, fantastic, maybe your sitting on the ice on a sled ,HUMMMMM.. Naw, jus kiddin. My legs too get the colds in the winter, I got to have an electric blanket on my feet and legs. but oh well, here comes winter another yr of icy feet.

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        • #19
          lol i wish i could dress everyday the way i dress for hockey. all those pads and the thick socks and the figure skating gloves under my hockey gloves are so nice and warm haha =]

          i used to have an electric blanket, but i was too afraid of my cat getting hurt on it... he likes to kind of kneed his paws into blankets untill he gets comfortable and i was too afraid he would catch a wire with his claws, so i have the blanket to my cousin.
          mitochondrial disease complex 1 deficiency, suspected HSP
          type 3 ehlers danlos syndrome w/ type 1 overlap, g and j tubes
          aspergers & friends
          survivor of 2 TIA strokes

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          • #20
            Originally posted by Lorrie View Post
            The weighted blanket sounds divine but maybe too heavy for a quad to move without a struggle?
            Thanks for the florinof info, since midodrine is no longer being sold in the States :/
            Yes, high salt diet here as well but my feet swell :/
            To the contrary....Midodrine is being sold in the United States. The FDA retracted their recall of Midodrine in September, I think. You should be able to fill your prescription for Midodrine at your local pharmacy or mail in drug program. Search this website for midodrine and recall and you will find the current information.

            All the best,
            GJ

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            • #21
              some small non-chain pharmacies are still only getting small amounts of it. i never thought of using a mail delivery service tho. that's a good idea.
              mitochondrial disease complex 1 deficiency, suspected HSP
              type 3 ehlers danlos syndrome w/ type 1 overlap, g and j tubes
              aspergers & friends
              survivor of 2 TIA strokes

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              • #22
                I have under active thyroid (from birth) and I'm always colder than everyone else. when my levels are too low I have been frozen and under a duvet in august when it has been hot and sunny outside and everyone else is walking around in T-shirts and shorts!

                I live in Yorkshire (UK) so we usually have at least a slight breeze most of the time even on 'hot days' and I feel it as soon as I move from where sun is directly on me.

                I also can't stand it been so hot though, it leaves me absolutely exhausted, luckily we only get about week max, of really boiling weather here!

                Our winters are difficult as we get really cold/bitter winds this side of the Pennines and as I'm now sat all day and can't move about as much as I used to I really feel it, my hand and feet are often blue and usually my lower legs (especially around buttocks area) is really ice cold to touch.

                I'm in a village where several open fields all around so not much shelter from large buildings when chugging around village on mobility scooter and a dog to walk twice a day!.. so I've just had to get used to been cold cos British Gas have hiked the prices up whilst government has reduced the cold weather payments for elderly and disabled!

                It was something like £25 every time temp dropped below freezing for more than a few days consecutively, (Nov to March here thats nearly every week!) I think they was gonna cut it to something like £8.50 instead!

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                • #23
                  Yes!!!!!!
                  1/23/10 Acute Herniation C5/C6 causing SCI @ C5
                  3/3/10 ACDF C5/6 & C6/7
                  2/11/11 ACDF C3/4 & C4/5

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                  • #24
                    Yes this was my first winter with SCI, felt extremely cold that it was an agony to get out of the bath.Never felt like this before. the fact that i am always sitting down and not increasing my heart rate with exercise is also an add on. My inability to feel sensation and sweat below injury has aggravated my sensation above injury. As Summer is approaching i feel the opposite will happen that is i may feel excessive heat and also sunstroke.

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                    • #25
                      I don't have an SCI (I was born with Spina Bifida) but I am ALWAYS cold. At home, in the car, etc. I had all kinds of dopplers, etc and the only solution is that my lesion is located at T9, and I have no movement and sensation (except for deep pressure, as when someone presses their hand deep into the back of my legs) below. I wear socks and long sleeve shirts almost all the time and I have to ask for air to be turned off so I can warm up (I live at home with family).

                      I brought this up at rehab after I had surgery 5 years ago. I was told it could be Autonomic Dysreflexia but when I looked this up online, I don't have the symptoms that come with it.

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