1) Most of the time I feel like I'm hot internally. This is more constant than my skin burning. I get both each day but the overheated feeling stays with me most of the time. Cool showers and sitting in front of the fan in my underwear will stop this feeling just as it cools my skin but the internal heat feeling comes back quicker. I always wake with it each night. It means I have to get up.
2)Now, each night I also wake with this buzzy, nervy sensation that lasts for a minute or two. Getting moving will stop this weird inner tremble buzzy feeling (having real trouble describing it) but it's not nice to wake up to.
Does anyone else get this stuff happening to them also.
Did the lyrica cause constipation for you? I tried it briefly and didn't stay on it for long because my constipation is pretty severe anyway, - a symptom of POTS -- it's difficult to treat and I did not want to make it worse. But as my pain progresses I'm rethinking this.
the buzzy tingly thing is not restless legs. I've experienced that with other meds I've tried for migraine before. You are right about moving around for restless legs. I used to 'walk' the restlessness off. This is more a full body thing -- like an internal energy source (my descriptions are getting weirder, LOL). getting up and moving seems to use up the 'energy.' It just feels a bad way to wake up but luckily, unlike the heat stuff, it goes away very quickly. Only to return when I fall next fall asleep and wake.
I know what you mean by not trialling a medication for long enough. I've done this in the past. At least it means I have some things to try again that still might help. It's good advice -- to know that it might take a few things and not just the meds but a combination of things to make the body feel better and not to expect 100% cure. Although it would be nice.....
I try to think like this now. I get migraines and it's hard to believe that in this 'day and age' they still can't help me keep them ALL at bay. But that's the way it is. We all have had to learn the hard way how complex the body is. Eventually everyone just through the aging process faces health challenges. It's about trying to work out how well I can be and accepting that and also accepting that sometimes it's gonna be tough.
Lyrica made my feet swell even more than they do naturally. Taking good old lysine helps with my tingles. Unfortunately it does nothing for the heat & throbbing which is inescapable in Texas from now until October.
My very first EM symptoms were the internal heat. Of course I had no idea why I felt like my body was wrapped in a heating pad in the late evenings.I never ask a doc about it and it took about one year for my hands and then my feet to start getting red and burning and I immediately found out about EM. At first I didn't connect the dots - but now I am sure that the inside heat is part of EM. It has increased from feeling it just around my waist to my my whole body from the neck to my feet. I bought some cooling pads to use under my sheets on the couch and in bed and I also need smaller ones during the day just for sitting somewhere - 10-15 minutes and my derriere starts to heat up. I do not take any meds - the possible side effects scare me too much. I think I may get the same *buzzy* , nervous feeling - like an extreme tension inside my body. But only once in a while and only when waking up from a 30 minute nap in the afternoon. There is nothing else to do then but to get up. Good luck to you.
For me It is usually heat only on the skin. It can be internal now and then but usually I feel like I am not warm enough yet I am still burning! It is a razor thin line of comfort. I often dream about being warmer internally. You know a comfy cozy warmth? I can never have that feeling any more now because that equates to terrible burning and my only relief comes from always being a little too cold to be comfortable.
Your experiences are very similar to mine. Thank you for your imput. I'm so glad I finally joined this site.
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Domina said:
My very first EM symptoms were the internal heat. Of course I had no idea why I felt like my body was wrapped in a heating pad in the late evenings.I never ask a doc about it and it took about one year for my hands and then my feet to start getting red and burning and I immediately found out about EM. At first I didn't connect the dots - but now I am sure that the inside heat is part of EM. It has increased from feeling it just around my waist to my my whole body from the neck to my feet. I bought some cooling pads to use under my sheets on the couch and in bed and I also need smaller ones during the day just for sitting somewhere - 10-15 minutes and my derriere starts to heat up. I do not take any meds - the possible side effects scare me too much. I think I may get the same *buzzy* , nervous feeling - like an extreme tension inside my body. But only once in a while and only when waking up from a 30 minute nap in the afternoon. There is nothing else to do then but to get up. Good luck to you.
I know what you mean about trying to get comfortable. it's coming up for winter here in Australia, it's starting to get colder where I live. I'm sitting on the lounge -- early morning -- and I'm putting up with feeling a bit too warm internally but not taking off any clothes because I don't want to feel chilled. I'll take the 'bit too warm' instead of getting chilled. But my feet are burning up to mid calves and uncovered -- although they aren't red. And just to make it more complicated I can feel areas of my feet that are cold enough that 'normal' people would put some socks on or something. My face and neck are hot, dry and and flushed red.
I've got a whole bunch of socks that I never wear anymore. And the thought of putting on tights as we come into winter is just a NO! I'm off to try and buy some winter skirts this weekend because I can't see me getting through winter going out in even the softest jeans or trousers. The heat my body gives off gets 'locked in' between my legs and the jeans leg and I feel lie there's a heater there. I imagine it would feel similar to wearing a wet suit out in the surf. My son wears one to surf in winter and his body warms up the water inside the wetsuit. I've never worn a wetsuit but I imagine that it would be similar to how I feel.
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Alina Delp said:
For me It is usually heat only on the skin. It can be internal now and then but usually I feel like I am not warm enough yet I am still burning! It is a razor thin line of comfort. I often dream about being warmer internally. You know a comfy cozy warmth? I can never have that feeling any more now because that equates to terrible burning and my only relief comes from always being a little too cold to be comfortable.
If that happens to me when I do try it again I'll know someone has experienced it before me.
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erin79 said:
Lyrica made my feet swell even more than they do naturally. Taking good old lysine helps with my tingles. Unfortunately it does nothing for the heat & throbbing which is inescapable in Texas from now until October.
Oh my goodness. I can totally relate to the "internal heat" & buzzing feeling. I sleep with air conditioning on, fan blowing right on me & every night/morning I wake up early just feeling hot. And they are not hot flashes!! And I def have that buzzing internal sensation. I feel literally like my entire body is buzzing. One night my husband asked me to stop shaking the bed & I was not moving!! When we go to sleep if I'm laying with/near him, he has actually said he can feel me "vibrating".....
I tried Lyrica & loved it but can't afford it. Of course I was taking it in addition to 3200mg of gabapentin (big no-no!). I told my dr this & he said you can't take both--only one or the other. And I told him but the combo of those two meds together is one of the only things that helps!! Oh well.....
Your cooling methods to get some sleep sound just like mine. And you are right they are not hot flushes. I've been through menopause and I can tell the difference. Hot flushes start, reach a peak and then recede. This internal heat feeling is much much much longer lasting. And you have internal buzzing too. Good to know. You explained it better than I. :)
I get a hot sensation similar to a hot flush and this makes the feet a lot worse. With me I feel there is a connection between the menopause and EM. I didn’t take HRT because my hot flushes were the only symptom and not too bad. I’m convinced there is a breakdown somewhere in how the body regulates heat, although the cause may be quite different for different folks! When I eventually see a consultant rheumatologist I will ask about HRT. I took Lyrica max dose for 9 months with no improvement when my orthopaedic consultant thought I had tarsal tunnel, he only believed otherwise when the operation didn’t work! In the end I got blurred vision and as it didn’t seem to help much I gave it up. I know I could ask my GP for HRT but they have been so useless at diagnosing my problem after 2 years that I’m reluctant to take any drugs till I see a doctor who has at least heard of EM and can evaluate my condition properly! I guess fellow sufferers understand this only too well!
Early in menopause I tried hrt and it did help with the hot flushes (rush of heat, reaching a peak, then resolving within minutes accompanied by a lot of sweating) but with one type of hrt I put on an enormous amount of weight in 5 months that I still haven't lost and the second type of hrt made migraines worse. So I had to go off it. Menopause was tough only because of the hot flushes and it's impact on EM and POTS. I often wonder if it was a coincidence that EM was tiggered at age 47 when I would have been peri-menopausal but not having any symptoms of menopause that came later at about age of 52.
I stopped having periods in May 2009 and EM symptoms started in May 2012 when my oestrogen levels must have reached their lowest point so for me it seems too much of a coincidence and I’m convinced there’s a link. GP says hormones are ‘normal’ for post menopause but perhaps low oestrogen was a trigger for some underlying condition, it’s well known that female hormones protect us from all sorts of health problems! Anyway when I feel hot it’s very similar to a hot flush, it just lasts longer and my feet burn really badly.
I understand where you're coming from on this: It's like you're heating from the inside out, and it causes me to break out in a sweat.. My husband says, "your face is cool, but I see the rash on your face, and you're sweating!" It's almost like a hot flash, but not..
As I type this, it's 3:30 am, I have the window open and ceiling fan on all in an attempt to stay cool.. Feet are tingling and pulsing, what I would call pre-spasming; I see the veins rising in my feet again.. Uncomfortable, but not intolerable.. If it heads that way, I'm taking another pain pill!
My feet always burn at night, but it is much worse in a warm room. If I’m out I take my shoes off and let the air help cool my feet, if there is a cool floor that’s even better!
Went through this just last night: it was about 60 degrees outside, so not too warm, but I felt like someone dropped me into a deep fryer.. I had the ceiling fan on; didn't help, so I begged my husband to help me put in the window fan, which started an argument as to "why do you need that" and me saying, "get me the fan please or I'm going to be sick!" And definitely, it's worse at night..
Took about 15 to 20 minutes of having the ceiling AND window fans going before my head stopped pounding from the heat, and the total body sweating to stop. This is ridiculous! What will I do this summer when it's REALLY hot if I can't handle 50 or 60 degree temps NOW?
We are going into winter here in Sydney, Australia. My sense of relief is enormous. I used to love summer but not anymore.....I won't say I know exactly what you are feeling because we are all different but I have some idea, that's for sure.
You said your head pounds with the heat. I get chronic migraine and am medicated for it but I also get breakthrough migraines which I just have to live through. But I have noticed that in the mornings, when I wake up and I'm hot that when I have that buzzy, electrical internal feeling I've mentioned elsewhere, my head is also sometimes pulsating with heat. Not always but sometimes.
I hope you found your cool relief. Hubby and I have to sleep in separate rooms. He feels the cold. Most of the time he's accommodating about the windows being open in our lounge room in the depths of winter as we watch tv but sometimes he gets a bit short tempered about it. This thing makes for frayed tempers on both sides.
Our apartment block doesn't have airconditioning. It's an old one. I have a portable airconditioning unit that although cumbersome I can move from room to room. It has a hose that shunts the hot air out of the room. I can never find the right level. It's either too cold or too warm so I use the too cold level. It helps and on really hot days/nights it makes a big difference --it's incredibly noisy though. Luckily for me frequent coolish showers and elevating feet and fans usually work pretty well, also in summer it's shower, elevate, fan, repeat.
I have mentioned chillows on some other posts - they really help my fee. They might be worth a try. They also still ahve a "2 for 1" deal on in Australia, which is how I bought mine (2 are more useful than 1)! I haveno association with chillows :-)