for over the last week or so my symptoms have become a lot worse? I can’t seem to regulate my body temp, it’s from one extreme to the other. My hands look actually a normal colour but are icy cold, finger tips freezing Ice blocks, my hole body shivers up and down entire body. I even chatter teeth. Then need to get warm I add layers of clothing only then to start burning tops of arms and thighs and of cause hands and feet on fire. Why can’t my body become a even balanced temp. I am getting dry patches of skin on shins calfs. And also when I heating up, my chest mainly I get so itchy. Red lumps/spots appear they actually rather painful. Has anyone else got cold&hot symptoms
Hello to all livingwitherythromelalgia and thanks to those who put so much into the sight. I also have trouble regulating my whole of body temperature. Sometimes my torso is freezing while my arms and legs are red hot. Alternativly I can be red hot all over. The worst situation for me is when I am really cold but sweat profusely from my upper body. Similar to a fever and very uncomfortable. I wonder if irregular body temp or the inability to control temp is related to the drugs many of us take. I have not been able to nail any particular drug although I think my fever type episodes were worse when I was taking quite a lot of oxycondone.
I am exactly the same this last couple of weeks and am blaming it on the weather. Hard to believe it is June now and we are freezing in the nights and mornings. I get the same itchy painful spots and am for ever dressing my baby grandson in too many or too few clothes because it is impossible for me to gauge how warm it is because my hands are cold as ice. I got to sleep last night some time after 3 after a severe feet flare while the rest of me shook with cold. Just hang in there for more settled weather. Blowing a gale today:(
Hi im that way majority of the day but if i go in anywhere that has heating on I end up looking like a kettle of boiling water been poured all over my body along with it being painful it’s embarrassing. Iv been told reason I either ice cold or burning is the nerves supplying the blood vessels are damaged plus I also have MS type so that contributes as well. I hope you get some relief soon take care x
Thank you all. I feel like a walking unregulated zombie from having such little sleep. I feel scared to move from this position as moving into room to room is causing skin to tingle and goose bumps to appear. I do remember Dr Wong vein specialist saying something about the autonomatic nerve in my body was irratic. This nerve also controls body temp. I was given choice of gapapentlin or pre-gab to try and slow it down? Guess that drug hasn’t affected me. Only thing I noticed was brain fog tiredness and I got fat and couldn’t be bothered. I have weaned off the pre-Gab just to see if or what changes I get and the only thing I get is electric shocks or a pins & needles stabbing pain. May only be once a day like other day I couldn’t put big toe on ground. I said to my GP. I not taking them if not needed or doing anything for me. I only take them as a pain killer. If and when needed. Coz that is what my rheumatologist said they were, they do nothing to slow EM down. They just pain relief. I was like you Nel, freezing cold with hot feet. It’s driving me insane. I need to move but scared as the temp in this house is so different in every room
Will say more at the weekend but I'm really struggling at the mo (these days) too. You are not alone. I'm struggling to keep my head above water, emotionally exhausted and fed up. Temperature regulation is really tough when you have to do it by hand rather than it being done automatically. For me, it just gets more complicated and exhausting. I spend my time tiptoeing past the elephants of pain, overheating and cold damage :). Apart from emergency and very reluctant use of a beta blocker I steer clear of the makeshift drugs given to people with EM - I've tried enough. They just give rise to a different cluster of settings to adjust to.
The drugs that help me are ones that were started a LONG time ago so they were not prescribed for EM - diazepam and temazepam. These dampen the body's metabolic rate. Sadly, they have a terrible press, and it is very unlikely they would be prescribed these days, so it seems.
It could have been me writing any one of these comments, except that I could not bear the beta blocker which made me unbearably cold while still allowing flares. Like you Toad I have dropped EM medication except for the Clonazepam which last night didn’t work its magic and I only slept from 3.30 to 7. 7am is classed as a ‘lie-in’ for me as I usually have to be up at 6.15 to take over baby care when my daughter leaves for work. I am truly zombie-like by evening but can’t attempt sleeping until the evening flare subsides. I try hard not to let it get me down but it is not easy.
My daughter, referring to the Leisure Park crash in the UK, said ‘at least you haven’t lost a leg like that poor girl’, and she’s right; it could be worse…
I often wake up in the middle of the night with my teeth chattering and shaking chills and at the same time my feet are so hot I have them out of the covers. During the day I am often hot. My office mates are complaining that they are freezing and I am ripping off layers of clothes. I Haven’t found anything that helps with this. I dress in layers so I can be prepared for either situation.
We are all a sorry lot and there is no doubt EM is a terrible thing to have. I am new to discussing my health on a web site such as this and for some reason find it difficult but then again my motivation for anything is very low. I have tried many drugs and actually gave myself a heart attack resulting in open heart surgery experimenting with supplements. I do have a story to tell and I will tell it. At the moment I think controlling whole body temperature mechanically, that is with special clothing with refrigerated or heated sections will be the answer. I have tried iced water cool suits. I damaged my feet further when they became too cold combined with the pressure required to move the water through the suit so my thinking now is that the equipment will need to be a precisly temp controlled set up that can work on very low pressure.
Nel said:
It could have been me writing any one of these comments, except that I could not bear the beta blocker which made me unbearably cold while still allowing flares. Like you Toad I have dropped EM medication except for the Clonazepam which last night didn’t work its magic and I only slept from 3.30 to 7. 7am is classed as a ‘lie-in’ for me as I usually have to be up at 6.15 to take over baby care when my daughter leaves for work. I am truly zombie-like by evening but can’t attempt sleeping until the evening flare subsides. I try hard not to let it get me down but it is not easy.
My daughter, referring to the Leisure Park crash in the UK, said ‘at least you haven’t lost a leg like that poor girl’, and she’s right; it could be worse…
I do have a similar thing where my upper body is cold but my feet and legs are roasting. However, the shivering is something I don't normally have. However, a few times recently this happened to me. One minute I was hot and the next freezing and shivering. I found out the answer, I have some ulcers on my feet and they had got infected so what I had was a fever. When I got antibiotics all the shivering and going from hot to cold stopped. I still get my upper body (except my hands I forgot to say) that is cold, whereas my feet and legs are really hot. What I didn't get was the shivering. You say that you have dry patches of skin on your shins calves, are you sure you haven't got an infection? Just a thought, it might not be that, but better to be safe and make sure that isn't the reason.
hi everyone, this all sounds so familiar to me. My neurologist said because I get cold as well as hot I cannot have EM and must have Raynaud's instead? Had anyone else heard this from their doc? He prescribed me a heart med to help and honestly the cold is a nuisance but the burning is so painful...
It is generally very hot where I live, it has been about 107 but oddly for us very humid. I am freezing in the AM and sweat so much yet clammy to the touch. I go between freezing when I wake up but will burn later. I have an a/c window unit in my room but I can't get it cold enough to cool me down, but I will feel my burning body and my legs will be cold while say my head and hands will be burning? When I do finally cool off the real pain/redness begins.
The top of my body is always cold and I feel good if warm. I recently increased my gabapentin to 600 mg twice a day. And I am tolerating temperatures of 75 degrees until I go to bed. Then I have to have the a/c blowing on my feet and legs at 60 degrees to cool down my feet. I have to have a blanket over my feet for a while then take it off at the exact right moment. Even then my feet still flare a lot. I can NEVER do things right. I hurt when too cold and my feet feel hot when they’re really too cold. But they are painful inside.I have several layers of thin blankets on the top of my body that I have to put on one at a time after I go to bed otherwise my whole body gets too hot.
Everybody’s story is different and painful.
painful inside is a great description. I gave up today and have the a/c at 75 but I have to bump it way down at night to fall asleep. Yes, I guess everyone's story is different and is painful.
red toes said:
The top of my body is always cold and I feel good if warm. I recently increased my gabapentin to 600 mg twice a day. And I am tolerating temperatures of 75 degrees until I go to bed. Then I have to have the a/c blowing on my feet and legs at 60 degrees to cool down my feet. I have to have a blanket over my feet for a while then take it off at the exact right moment. Even then my feet still flare a lot. I can NEVER do things right. I hurt when too cold and my feet feel hot when they're really too cold. But they are painful inside.I have several layers of thin blankets on the top of my body that I have to put on one at a time after I go to bed otherwise my whole body gets too hot.
Everybody's story is different and painful.
Hello everyone.
Thank you for sharing your experiences. I, too, have problems with being so cold (especially in evenings/ night) that I am shuddering, but my are feet feel scalding hot. Before I started on small dose of Lyrica, I would be shivering and shuddering so hard every day that I would eventually go into a shock-like state and I'd have cardiac issues (arrhythmia).
I am a researcher as well and I am very interested in finding out more about these general temperature regulation problems people have along with their EM symptoms. This is not covered in the EM literature, but is one of the hardest aspects of this disease for me. Clearly,many people with more severe forms of EM have serious issues with their parasympathetic nervous system and temperature control mechanisms at the level of the brain's hypothalamus.
I hope to do a study soon (I will donate my time/resources) that will hopefully help us understand more about these temperature regulation problems and how we might be able to use that info to design devices that can help fool our brains so that our EM parts do not overreact to temperature variations.The field of neuroplasticity may have many answers for us in the future--I recommend Norman Doidge's new book, The Brain's Way of Healing.
Wishing the best to you all, Dragica
Hello again
Dear Sheltielife. You may be spot on with infection being the cause of high body temp and chills. I have often suspected that I have had some sort of infection however tests have shown nothing until recently when I spent a week on antibiotic drip while having a ketamine infusion. I had infected splits on my my feet. My body temp was more normal or at least I did not have the shivering sweats for a couple of months after this treatment. I am a 62 year old man and have had issues with my prostate and am waiting for test results re urinary tract infection. I suspect that EM is effecting my peeing ability and vice versa. There seems to be some correlation between how well I pee and how severe the inflammations are. Is there anyone else out there with these theory’s.
Hi COG
Well I hope I am right as if they find you have an infection of your urinary tract then you will get some antibiotics and hopefully a lot of your symptoms will go away again! As you know you won't be normal but all that shivering etc. should go.
COG said:
Hello again
Dear Sheltielife. You may be spot on with infection being the cause of high body temp and chills. I have often suspected that I have had some sort of infection however tests have shown nothing until recently when I spent a week on antibiotic drip while having a ketamine infusion. I had infected splits on my my feet. My body temp was more normal or at least I did not have the shivering sweats for a couple of months after this treatment. I am a 62 year old man and have had issues with my prostate and am waiting for test results re urinary tract infection. I suspect that EM is effecting my peeing ability and vice versa. There seems to be some correlation between how well I pee and how severe the inflammations are. Is there anyone else out there with these theory's.
More on the subject:
My position is to keep systemic treatments to a bare minimum and focus on localised areas.
Systemic: I use the diazepam & temazepam that were presecribed to me at very early stages when the only tangible symptoms of EM I was experiencing were anxiety and sleep problems. I am very lucky that my GP at the time (20 years ago) trusted me enough to prescribe them. There are also very rare times when using a beta blocker (propranolol) in varying doses (multiples of 10mg) is the only way of getting a chance of getting to sleep – when a/c, fans, all my other adaptations, sleeping pills and diazepam are just not enough to allow me to sleep. Using them is risky – more pain in my joints and the indiscriminate nature of their action. My circulation is not good so my healing is poor. I flirt with chilblains on my toes every year and have had dry gangrene once. So the cooling from a beta blocker is risky and brings its own complications.
Localised: Epaderm cream (prescribed) is excellent to prevent cracking of skin. Biofreeze – is brilliant at night for hands and the balls of my feet when used in conjunction with fans and/or air con. Most of (all I can remember right now and not including the many, many past creations) the other localised efforts I use are in the photos I include, but CRITICAL is the adaptation of lifestyle – I am adapted to living a basically sedentary life-style. Exercise is through swimming 3x a week, occasional cycling (very limited conditions), more regular use of an exercise bike, and everyday yoga.
I need people, of course, and over a period of around 15 years have managed to get as much as/more than enough social presence than I can cope with – a little through the swimming, a lot through 2x a week playing bridge, and 1-2 times a week playing snooker. I have a ‘Personal Assistant’ come in 5 days a week and she is wonderful. I live alone, but in the home I grew up in. I see my sister once a fortnight and am in regular contact with my brother. I have good neighbours. I’m very lucky to have done family history with my mother over the last year of her life, and this has given me a connectedness that is hard to articulate. I have friends that stretch back to before I was a teenager.
Please see my album Localised adaptations.
Hope this and the photos give some ideas and stimulate some sharing of others’ strategies. My latest efforts have been focussed on attaining sufficient comfort to be able to meditate - I learned Transcendental Meditation in the 70s. I am very glad to say that through the adapted seating I am managing to get 20 minutes of TM every day. This is GREAT progress for me - gives a deep rest that is very different from sleep. I hope my BP levels will improve.
I do have both extremes - cold and hot - in my feet and hands. Hardly ever temperature between, just normal... And yes, having feet and hands in a fire I often feel shivering at the same time... Is it tipical for erythromelalgia going together with Raynaud's syndrome?
...but I haven't any other symptoms you have mentioned. So your case seems to be more complicated but don't give up)) x