Rene S. Posted March 18, 2009 Report Share Posted March 18, 2009 Hi. This may sound strange but my hands are usually cold, but then out of the blue (no pun intended!) they will become boiling hot for no reason. I'm trying to see if it correlates to when my pressure or heart rate is up.Does this happen to anyone else?Also, I'm usually cold during the day (can't seem to stop shaking), yet at night I wake up with the sweats.Also, do you notice feeling worse prior to bedtime and then sometimes in the morning? Seems like my rates fluctuate more at those time, although they do alternate. One question about a beta blocker - Pindolol - does anyone use it? My cardio was going to start me on 2.5 mg.And last, when your pressure is up or pulse do you sometimes have a dry cough or feel the need to cough? Sorry I'm just trying to put the pieces of the puzzle together.Thank you!Rene Quote Link to comment Share on other sites More sharing options...
Guest brianala Posted March 18, 2009 Report Share Posted March 18, 2009 Hi Rene!My hands and feet only have two temperatures - cold and freezing! The only time I have problems with them otherwise is when I go walking/jogging and then they get very swollen and red and hot. I have the same problem at night. I can go to bed freezing but I will wake up in the middle of the night burning up.I do feel worse at night, too. I have a lot of problems sleeping/getting up in the morning. The only beta blocker I have experience with is Metoprolol, but I am not on it anymore.I get the cough thing a lot, mostly when I have palpitations. I feel like I have to cough to get my heart un-stuck. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 18, 2009 Report Share Posted March 18, 2009 Yes, Rene, I can relate. One of my first symptoms of small fiber neuropathy was that in slightly cool temps my feet and hands were freezing and would sometimes turn purple on the ends of my toes and I got chilblains. I went to doc after doc and a skin biopsy came back as pernio (frostbite) but I spent most of my days laying on the couch! Then in the summer, my feet and hands began turning red and feeling like they were burning. A dermatologist then diagnosed me with erythromelalgia (a fancy word for red hands and feet!). If I spend too much time upright, exercise, or at night my extremities are red, hot and painful! But if I spend too much time sedentary and it's 70 degrees or below in the house, they get cold and pale or even bluish. I spend much of my days putting on socks and taking them off again! Strange thing is that around 7-8pm, my feet automatically become warm and red and the socks come off for good. For a year, I haven't been able to sleep with blankets over my feet/hands because the blankets seem to trap heat around my already burning extremities and exacerbate the pain. I can usually ignore the burning at in the daytime but often have to take a mild pain pill at night to sleep through the pain. In the summer, we don't have great air conditioning and by the end of a warm day the burning in my feet and hands has spread inward to my torso and any clothing feels extremely scratchy and hot. I often can't bear to be touched by another person because their warm skin feels super hot to me. Sometimes my whole body looks flushed. My face is also always burning, even my mouth. I spend hot day drinking iced beverages or sucking on popsicles. What helps my hot extremities is rest and elevation, draping cool wet cloths over them and laying in front of a fan. I sometimes cool my feet in a cool water bath when I'm desperate.I had a skin sensation test at Mayo where they put a metal disk against my foot and make it cold and have me rate the coolness. Then they moved it up my leg to see if I had the same sensations everywhere. Then they put the disk back on my foot and made it mildly warm and increased the temp. Every warm sensation felt hot and painful to me, and in between bursts of warmth the disk would cool back to room temp but my skin still felt like it was being burned. I couldn't tell even when the disk was removed. I looked down at my leg expecting to see a big blistered area but my skin was normal. It's just my nerves that are messed up!My mom also has small fiber neuropathy with no known cause (although she also has carcinoid syndrome) and a tremor that her mom has. She came down with these things in her 50's, but my case seems to be much worse and I don't know if the tremor is related or not but I've had shaky hands since my 20's. I'm now 35. The Mayo doc says that my POTS is secondary to the small fiber neuropathy and that it's the small nerves that regulate the diameter of our smallest blood vessels, which is why my feet and hands turn funny colors. I've been diagnosed with perniosis, raynauds, erythromelalgia, purple toe syndrome (loved that one!), but small fiber neuropathy seems to be the cause of all these problems. This is probably more than you wanted to know, and my symptoms seem to be somewhat on the worse side, but small fiber neuropathy can either be a cause or a result of dysautonomia. It might be what's going on with you. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 18, 2009 Report Share Posted March 18, 2009 Hi Rene,I can comment on the discolored and fluctuating temperatures in the hands and feet. I have the same thing, and I believe that in my case it is due to abnormal autonomic regulation of the capillaries because the peripheral vasculature is very sensitive to "autonomic" neurotransmitters and hormones. My hands and feet are usually cold and purple, but if it gets a little bit warmer in temperature or I shower, they turn bright red, and I often times hold ice packs on them to get the vessels to constrict because when they are dilated and pooling blood I feel more lightheaded and woozy. On the other hand, when I am having a lot of other autonomic symptoms, especially GI disregulation, then my hands and feet can turn so discolored, cold, and mottled that I put a microwave heat pack on them. I also wake up at night with one foot freezing cold and painful while the other is a normal temperature. I have an extreme intolerance/sensitivity to changes in temperature, especially heat, but the temperature and color changes in my hands and feet happen spontaneously too, not just in relation to the temperature, activity, or blood pressure. The ironic thing is that almost every doctor that I have seen (and that is a lot) comments on the color and temperature of my hands within minutes of meeting me, but no one seems too sure what to say about it. I have been told that it is not Raynaud's because it does not only happen in response to temperature. I hope that helps! Best Wishes, Broken_Shell Quote Link to comment Share on other sites More sharing options...
Tammy Posted March 18, 2009 Report Share Posted March 18, 2009 My GP thinks I have something called Raynaud's Syndrome as my fingers and toes get so cold they hurt. He wanted to start me on Norvasc as he said calcium channel blockers help this, however I'm on other meds that I just figure this is one thing I don't care to medicate on top of everything else as I can live with it. My right hand and foot typically are even colder than the otherside, which no doctor can seem to explain. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 18, 2009 Report Share Posted March 18, 2009 I saw a vascular doc who wanted to put me on a calcium channel blocker for what he thought was Raynauds. Then my EP cardio said that the calcium channel blocker would exacerbate my venous pooling. My left side is more prone to cold problems, while my right side is more prone to pooling and redness. Quote Link to comment Share on other sites More sharing options...
summer Posted March 18, 2009 Report Share Posted March 18, 2009 I also have been diagnosed with Raynaud's this winter. My doctor considered taking me off my beta blocker as he wondered if starting the BB over this past year may have worsened or triggered the Raynaud's. We talked about it and I feel I can live with the Raynaud's (it's more of a nusance than anything), but I'm not sure I can live without the BB! It has really helped me. For now I'm just trying to keep my hands from getting cold (not easy here in Canada!).Summer Quote Link to comment Share on other sites More sharing options...
Csmith3 Posted March 18, 2009 Report Share Posted March 18, 2009 I think there are a number of things going on here. You can get blood pooling in your hands in the same way as you get blood pooling in your feet and lower legs. Does it tend to happen when you stand? An easy way to see if that is the cause is to lift your arms up and see if the colour changes (assuming lifting your arms doesn't make you too ill).If I'm having a bad day and BP is low, I tend to be very cold. Unsurprisingly, tachycardia tends to make me hot. My normal state is for the core of my body to be too hot, but most of me is too cold so I have lots of clothes on. Thankful - I smiled when I read your post. At any time I have 3 pairs of socks by my bed. One normal pair, one compression and one pair of super warm walking socks and I change between these as my feet alternate between ice cold and very hot! I think part of dysautonomia can be poor temperature control and I can empathize with going from one extreme to another. I have felt rough the last couple of weeks and needed to put more clothes on when I've gone to bed as I'm too cold to sleep. Sometimes I can sleep through the night like this, other times I wake up at about 3am absolutely boiling and feeling a bit delerious!I don't know why, but I gather a lot of people with POTS also have Reynaulds, but I don't think this explains all the symptoms above, it just relates to an overreaction to change in external temperature. Quote Link to comment Share on other sites More sharing options...
calypso Posted March 20, 2009 Report Share Posted March 20, 2009 I have noticed that I go to bed feeling really cold, but in the morning, I now wake up all hot -- not sweating, but just really warm. I never used to be this way; it just started in the last few months. I seem to have trouble regulating my temperature and will be cold when I shouldn't and hot when I should be cold. Quote Link to comment Share on other sites More sharing options...
gertie Posted March 20, 2009 Report Share Posted March 20, 2009 I feel cold all day especially my hands & feet then at night I sweat. Sometimes in the day I will suddenly feel temporarily hot all over for a few min then back to cold. I've had no heat in my bedroom all winter. I'm never comfortable get very little sleep. Quote Link to comment Share on other sites More sharing options...
Rene S. Posted March 20, 2009 Author Report Share Posted March 20, 2009 Thank you all for sharing your experiences. This is some weird illness that's all I can say. This morning, I could not get my b/p down below 150/90 then today I felt weird, and I took it (I was laying down at the time), and it was 88/56! Go figure.One day someone will figure this thing out.Rene Quote Link to comment Share on other sites More sharing options...
all4family Posted March 20, 2009 Report Share Posted March 20, 2009 Hi Rene,I get icey hands. It feels like there is icey water on them, and it stings and burns at the same time, especially if someone touches them. I also get hot and cold all the time, feet included. But my worse is the cough. I cough all the time, and it gives me a headache. I do notice it more if I am standing up, or active. But when I am laying down the cough calms down. Which isn't it supposed to be harder to breath when you are laying down?! Once in the hospital I was sitting up, and my oxygen was at 90% they laid my bed down, and it went up to 100% Go figure. Suzy Quote Link to comment Share on other sites More sharing options...
jump Posted March 21, 2009 Report Share Posted March 21, 2009 Goodness, I could have written your first post myself!I am often very cold, and my hands and feet turn blue regularly. Sometimes I'll feel normal (like the rest of my body is a normal temperature) but my hands will be icy to the touch. Then all of a sudden they might get hot. I now have several pairs of fingerless gloves, and I take them off and put them on again all day long. It helps, though, to keep my hands from getting so painfully cold.I also get really cold right before I go to sleep, and pile on the blankets -- then I usually wake up in the night drenched in sweat. Then in the morning I wake up and I'm freezing again. My doctor was actually alarmed by the night-sweating thing, but so far we haven't figured anything out. The weird thing is I seem to sweat profusely from my chest, neck, and back when this happens, but from nowhere else -- my face, armpits, etc. don't sweat at all, even though when I exercise in the day I sweat all over like a normal person.In the morning, all my symptoms (esp. the tachycardia) are particularly bad. In fact, when I first started having problems, I ONLY had symptoms in the morning. Now they last all day, but they're much worse in the morning.I do have a dry cough - usually just one at a time - when my pressure pulse is up. Usually, my heart kind of feels like it's flopping around, and I'll have "skipped beats" and then a really strong, forceful beat or two after the skip. The forceful one causes me to cough. Quote Link to comment Share on other sites More sharing options...
Rene S. Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Rene,I get icey hands. It feels like there is icey water on them, and it stings and burns at the same time, especially if someone touches them. I also get hot and cold all the time, feet included. But my worse is the cough. I cough all the time, and it gives me a headache. I do notice it more if I am standing up, or active. But when I am laying down the cough calms down. Which isn't it supposed to be harder to breath when you are laying down?! Once in the hospital I was sitting up, and my oxygen was at 90% they laid my bed down, and it went up to 100% Go figure. SuzyHi Suzy,Wow I can't believe we all have so many of the same symptoms. And the cough! Grrr. I haven't noticed if it'smore pronounced standing or sitting or moving around. I'm just tired of the whole thing!Rene Quote Link to comment Share on other sites More sharing options...
Rene S. Posted March 21, 2009 Author Report Share Posted March 21, 2009 Goodness, I could have written your first post myself!I am often very cold, and my hands and feet turn blue regularly. Sometimes I'll feel normal (like the rest of my body is a normal temperature) but my hands will be icy to the touch. Then all of a sudden they might get hot. I now have several pairs of fingerless gloves, and I take them off and put them on again all day long. It helps, though, to keep my hands from getting so painfully cold.I also get really cold right before I go to sleep, and pile on the blankets -- then I usually wake up in the night drenched in sweat. Then in the morning I wake up and I'm freezing again. My doctor was actually alarmed by the night-sweating thing, but so far we haven't figured anything out. The weird thing is I seem to sweat profusely from my chest, neck, and back when this happens, but from nowhere else -- my face, armpits, etc. don't sweat at all, even though when I exercise in the day I sweat all over like a normal person.In the morning, all my symptoms (esp. the tachycardia) are particularly bad. In fact, when I first started having problems, I ONLY had symptoms in the morning. Now they last all day, but they're much worse in the morning.I do have a dry cough - usually just one at a time - when my pressure pulse is up. Usually, my heart kind of feels like it's flopping around, and I'll have "skipped beats" and then a really strong, forceful beat or two after the skip. The forceful one causes me to cough.I'm the same with the blankets. I set the heat low, and pile them on in addition to two cats! By 2am, I'm up soaked chest, neck and back , never my armpits or face! And the tach. is bad in the morning. I awake with a jolt. I keep thinking it's anxiety, but it's not. Oh gosh the flip/flop heart! And the cough.This morning I decided to just walk around the house for 5 mins to get my body moving and the cough started. I cleaned the toilets and shower and now my heart is doing butterflies and I'm exhausted. This is so frustrating. I thought having just the fibro/cfs was bad! Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Report Share Posted March 21, 2009 Hi Rene,I get icey hands. It feels like there is icey water on them, and it stings and burns at the same time, especially if someone touches them. I also get hot and cold all the time, feet included. But my worse is the cough. I cough all the time, and it gives me a headache. I do notice it more if I am standing up, or active. But when I am laying down the cough calms down. Which isn't it supposed to be harder to breath when you are laying down?! Once in the hospital I was sitting up, and my oxygen was at 90% they laid my bed down, and it went up to 100% Go figure. SuzyHi Suzy,Wow I can't believe we all have so many of the same symptoms. And the cough! Grrr. I haven't noticed if it'smore pronounced standing or sitting or moving around. I'm just tired of the whole thing!ReneI second that one! TIRED of it!Suzy Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 22, 2009 Report Share Posted March 22, 2009 I saw a doctor that thinks I have something called (hopefully can spell it) erythromelalgia. That's wrong, but if you google, it should crrect it. The capillaries constrict inappropriately and then suddenly relax and you get a rush of core blood so it feels very hot. I have it in my palms and the soles of my feet. it's miserable. I also have raynaud's. The best they can offer is keep your hands and feet at a fairly constant temp (uh huh) and never put them in hot water to try and warm them up, as it causes even more damage. morgan Quote Link to comment Share on other sites More sharing options...
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