Sometimes my EM can get so bad that it actually hurts to wear clothes. I have a few old silk things I can put on that are soft against the skin and don't hurt nearly as much as the normal day to day soft clothes I wear on better days. Since my first episode of EM I have had to choose clothes I buy by their 'soft to my cheek' test. And many of those clothes can be impossible to wear on bad days. Or hours. I can put on soft pj pants and tolerate them, only to find that I have to strip them off to get cool and to stop them hurting my skin -- it's sort of like clothing lightly sandpapers my skin. That's how it feels. It doesn't ACTUALLY sandpaper my skin.
I also sleep on the oldest, softest cotton sheets I've got. But when my skin is hurting in response to clothing I have to sleep sort of wrapped in a very old worn out sheet that is very smooth to the touch. I'm actually thinking of purchasing a silk sheet for this purpose.
Even when I use the softest clothing, sheets I can still feel like my skin is being sandpapered.
I get EM flares on my face and neck and when my skin is ultrasensitive like I've described my hair can feel like it's almost cutting my chest when it brushes against it.
Hi Blue. I am so sad that you have this miserable condition. I have not been able to wear clothes for nearly 2 years so understand what you are going through. All i can suggest is to do what you are already doing - soft cotton, cool silky fabrics and nakedness as much as possible.I am finding that the package of medications and minimising of triggers is helping make life more bearable. What medications are you on - if any? Do you try to avoid triggers - heat, stress, fatigue, exertion?
I do avoid triggers of heat and exertion. But I am a highly stressed and I know this doesn't help. I do meditate which mitigates the stress somewhat but my living situation isn't the best and I have an adult son -- my youngest -- who is not managing his life very well and I worry about him. I wake most nights about 2 or 3 am -- so not getting enough sleep and I can no longer get back to sleep. Sleep used to be like a medicine for me. I also have sleep apnnea but I can't use my cpap machine because it makes me more red and hot. I use the 'poor mans' method of treating positional sleep apnea -- tennis balls in a sock sewn to the back of a pj top. Works when I keep keep the pj top on. I definitely do a bit better when I get decent sleep but it's been a long time since I've managed that. I wake up and start worrying about being hot etc. about money, home situation, worry over my son. I just can't seem to turn that stuff off even though I recognise it's probably making the symptoms worse. I just don't know how not to worry. LOL. While I'm writing this it has occured to me it is possibly an OCD behaviour -- intrusive and obsessive worrying about things. Something I should bring up with my psychiatrist who I see occasionally.
I take low dosage of opiates daily for chronic daily migraine. And I also take Xanax -- am on a 'big dose' but was on an even bigger one before -- I've cut my dosage by half over two years and intend to get it slowly down to a tiny dose. I'm sure cutting down is probably contributing to not sleeping and increased skin problems -- I'm not as calm. And I'm more aware of my skin symptoms . I have POTS and the Xanax does calm my dysfunctional autonomic system. I also take acetaminophen (panadol in Australia, Tylenol -- I think -- in America. Today I've added zrytrec and zantac back into my daily regime. I'm allergic to a lot of things. Have experienced anaphylaxis twice. Do carry an epi-pen now but have not needed to use it. Besides having POTS and EM I probably have overactive mast cells -- this explains all my allergies and food/chemical intolerances. All three disorders cause heat and flushing. What joy!
But at least I am able to wear clothes most days, or for some of the day - I'm lucky there. On days when I can't wear anything but underpants (I never have had a problem in that area -- it's like EM is an underpants area free zone LOL) I obviously don't go out. Those are the days when even my hair can hurt brushing on my skin.
Do you have any times that you are able to wear clothes pain free, mads ?Do your sheets hurt your skin, too what meds do you take for EM?
I'm going back to the doc that diagnosed my EM 8 years ago -- I've seem him since quite a few times of course -- and am going to explore what meds I could try. We made the decision not to take meds for EM as I'm so med sensitive and chemically intolerant -- even to a number of natural chemicals found in many food sources -- hence adding back the zyrtec and zantac today, in an effort to help with reactions to chemicals in foods, meds etc.
I’m know this is a small piece of info about clothing but maybe it will help. I have to wear underpants seam side out. If the seam is pressing into my skin it really hurts. My skin is super sensitive. Who is going to know your knickers are inside out?
I’m so sorry that you suffer so much! I do hope you can get some helpful feedback from people on here.
Thanks for your response. My underwear has to go on inside out too. Iv'e worn t'shirts inside out when going out. LOL. People think I don't realize my t-shirt is inside out. Sometimes I turn my pj's inside out so I don't have to cope with seam
s. It's great to hear that people do the things I do to minimize pain and discomfort. I was feeling that I seemed extreme -- and guess I do to family and people that don't have this health problem. But I feel quite 'normal' here. It's a sort of validation.
Dear Blue, you are very normal, just struggling with this stupid condition!
I can’t bear to wear anything at night except a very soft tee shirt and no bedcovers. But if I get very cold I will have reactive flaring so I sleep under a homemade cage, heavily padded in Winter with duvets, lighter padding in the Summer and no need for the cage at all if we have a heatwave but hey this is London, so not that likely to happen. Thank goodness we don’t have earthquakes so I’m not going to have to flee the house or get dragged out in that state.
During the day pants always inside out or if at home no pants at all and preferably a skirt, cooler than trousers. Silky things are my favourite clothes. I need a benzodiazepine to sleep and it works well enough if I don’t have a flare. I add antihistamines and a little tot of whisky to the mix (I know, I know) but I can’t bear to go back to spending half the night walking on the kitchen tiles.
Worrying about the offspring is the worst isn’t it. But the chances are that they will get their lives back together and it shouldn’t have to be at the expense of yours. I can worry all day about a situation only to find they have sorted it out and never even thought to tell me.
Compared to you my EM symptoms are between zero and one. My bed has silk sheets and comforters , always cool to the touch and of course absolutely smooth. When at home or going out in the summer I wear a necklace with matching earrings and a silky Kaftan - nothing else. At night I slip into a silky long gown - long sleeves in the winter, short sleeves in the summer. The winter is a different story for going outside - I have these wide flowing pants, I think they are called culottes - you know they actually look like skirts and light ponchos for tops. To stay warm I have long cape. That's how I get by because I can't really stand anything touching me that is tight or not smooth.
I can't wear any clothes that restrict, such as narrow elastic waistbands, blue jeans, tight underwear, anything like this as it intensifies my pain, but mine doesn't quite sound the same as yours. My issue is that it feels as if I am being strangulated in that region and anything below it doubles in pain. Now I have on a few occasions felt the same things like all cloth is sandpaper and it makes my skin feel like it is on fire, but these usually are short lived episodes. I don't know if that makes you feel any better, but I hope it helps a little.
Does anyone else have this problem but intermittently?
The first time this happened to me it was in the evening at home after a few hours in the ER and having a CAT scan with IV.
I woke in the night with so much pain just from my sheets. My husband couldn't gently touch me without pain any of the lightest touch would be excruciating! I chalked it up to a bad relation to my injection at the hospital. It lasted a few weeks then it just got better. It has happened a few more times and every time only lasting a few weeks at a time. I had to have another CT with contrast some time later and I asked them if that could of caused my reaction and they said it couldn't and If I were to have a reaction at all it would of been immediate.
I am so sorry for those of you that go through this everyday. After experiencing this for a short period of time I couldn't imagine it being here all of the time.
When I go to the hospital which is all too often since my accident I always feel I must wear knickers (right side out too), trousers, and shoes (because of the crutches) and it is one of the great pleasures in life to get home, whip them all off and get into a nice cool silky dressing gown. Almost as good as a glass of wine used to be.
Hi Me again - I can sympathise eight your anxiety as I have always been a rather nervy person,and after a very stressful house build and my son being quite ill,my health was down and guess what , I developed Em. I am sure I shredded my nerves with worry-the wisdom of hindsight. Blue you have a chance to help both - a good antidepressant that works on anxiety could help both that and your Em pain and a psych could help you choose one .I use Effexor which is also good for anxiety.I wonder if you should leave your Xanax dose alone until you start something else as I can see by your post you are really beside yourself you poor darling. You sound like a very caring mother. The best advice I was given when I was very worried and trying to help my son was that I could not help if I took off my lifejacket and drowned with him. This is so true ,you need to keep yourself together in order to be of any use. As to sleep ,boy I agree it is healing and thats another reason to maybe keep meds the same for now. So I suppose in one way it is good news as the same medication can help anxiety and EM . Now be kind to yourself and know there is a way forward. Tizzy
I'm just learning how to use this site. I was replying to you and realized I'd somehow mixed up your response into my reply so I started again.
Oh Nel, I can see how sleeping under a cage would help. Maybe no more waking up so many times during the night to put on or take off bed covers. Although I'm not sure I can take anymore things to bed with me. LOL. My bed gets like a floating island that I sometimes feel like I'm living on. Everything I'm doing gets moved to my bed at times. The one thing I'd like in my bed is my hubby but we are now in separate beds in separate rooms because of this thing. I can't stand his body heat most of the time and he can't stand my restless waking up during the night. I've been told by docs this doesn't hurt a marriage but really, I find when on the few occasions I am able to sleep next to hubby for at least part of the night I often feel comforted by him just being there. Some nights just feel long, lonely and painful. EM or migraine or pains in my gut. Does sleeping with a cage over you cause you to feel a bit isolated or are you just able to accept it and take it in your stride? I do know what you mean, by emergencies. I keep a kaftan on a hook near my front door in case someone knocks unexpectedly and I'm stripped down. Or in case of fire and I have to get out quick. LOL.
no judgement here about antihistamines and a tot of whisky. Anything that makes our lives better is a good thing.
Worrying about kids is the worst, I think. I'll get a phone call from my youngest and I have to calm myself. Sometimes he seems good, sometimes bad. Sometimes he sounds good even when he's not doing well. Same with his visits. I wish he could sort stuff out. He's a very empathetic person. Whenever he visits me I get a big gentle hug at some point. Even if I'm feeling my hottest I won't knock it back. I think he needs it as much as me. It's an exchange of feelings he won't talk about.
Nel said:
Dear Blue, you are very normal, just struggling with this stupid condition!
I can't bear to wear anything at night except a very soft tee shirt and no bedcovers. But if I get very cold I will have reactive flaring so I sleep under a homemade cage, heavily padded in Winter with duvets, lighter padding in the Summer and no need for the cage at all if we have a heatwave but hey this is London, so not that likely to happen. Thank goodness we don't have earthquakes so I'm not going to have to flee the house or get dragged out in that state.
During the day pants always inside out or if at home no pants at all and preferably a skirt, cooler than trousers. Silky things are my favourite clothes. I need a benzodiazepine to sleep and it works well enough if I don't have a flare. I add antihistamines and a little tot of whisky to the mix (I know, I know) but I can't bear to go back to spending half the night walking on the kitchen tiles.
Worrying about the offspring is the worst isn't it. But the chances are that they will get their lives back together and it shouldn't have to be at the expense of yours. I can worry all day about a situation only to find they have sorted it out and never even thought to tell me.
Some great tips on dressing. I appreciate it. It sounds stylish too. It does sound like you've managed to stay very stylish despite this EM. I do have a couple of kaftans. I was thinking of buying some of those silky look kimonos from china town and wearing them as long jackets/coat. Another thing I lost with this EM is any sense of style but you've given me some great ideas.
blue
Domina said:
Compared to you my EM symptoms are between zero and one. My bed has silk sheets and comforters , always cool to the touch and of course absolutely smooth. When at home or going out in the summer I wear a necklace with matching earrings and a silky Kaftan - nothing else. At night I slip into a silky long gown - long sleeves in the winter, short sleeves in the summer. The winter is a different story for going outside - I have these wide flowing pants, I think they are called culottes - you know they actually look like skirts and light ponchos for tops. To stay warm I have long cape. That's how I get by because I can't really stand anything touching me that is tight or not smooth.
I think maybe it can be that I've got it worse than you, but there is also the very real possibility that because of having EM, and lots of migraine pain and other types of pain that my experience of pain has become a bit warped. 'where once I would have thought oh, that feels uncomfortable, or a bit painful but not enough to distract me really, now I am more concentrated on the pain and if i feel every little or big thing it's going to all feel bigger than it should. Maybe. It's a theory of mine. There are times when I get distracted or I'm living life and it's only when sensations of pain intrude that I realize I've gone hours feeling none or not noticing some. I don't know. Maybe the pain is just gone for that time. Sometimes I do get pain that is very intense and there is no denying it. But other times I might be amplifying the pain in my mind. Not sure. It's why I'm trying to discipline myself to do mediation again. It's a good way to dial down many things for me: pain, stress, anxiety. I just have to make myself do it. It's not a cure. This stuff is not all in the mind as we all know and I hate it when I hear people express that opinion but I do know that by meditating I can dial down the amplitude of stress and pain etc at least for some of the time.
blue
Domina said:
Compared to you my EM symptoms are between zero and one. My bed has silk sheets and comforters , always cool to the touch and of course absolutely smooth. When at home or going out in the summer I wear a necklace with matching earrings and a silky Kaftan - nothing else. At night I slip into a silky long gown - long sleeves in the winter, short sleeves in the summer. The winter is a different story for going outside - I have these wide flowing pants, I think they are called culottes - you know they actually look like skirts and light ponchos for tops. To stay warm I have long cape. That's how I get by because I can't really stand anything touching me that is tight or not smooth.
It does help me gtrembly. I appreciate the willingness to share. I don't wear tight things either, things have to be very loose. But I don't get that strangulated feeling you are talking about - that sounds pretty painful. Your response helps more than a little.
gtrembley said:
I can't wear any clothes that restrict, such as narrow elastic waistbands, blue jeans, tight underwear, anything like this as it intensifies my pain, but mine doesn't quite sound the same as yours. My issue is that it feels as if I am being strangulated in that region and anything below it doubles in pain. Now I have on a few occasions felt the same things like all cloth is sandpaper and it makes my skin feel like it is on fire, but these usually are short lived episodes. I don't know if that makes you feel any better, but I hope it helps a little.
I replied to you but seem to have 'lost' it so am trying again.
Yes, yes, and yes. Contrast dye does this to me. So does local anaesthesia. And IV (twilight sedation). I've had no problem with general anaesthesia. Last December I had to refill my Xanax script and found out that they'd taken the name brand off the market. I didn't really think anything of it but twenty four hours later I was responding in exactly that way to something in the generic brand that had different excipient ingredients to the original Xanax, I found out. With the help of my allergist I was able to find another generic form which calmed my skin down. But it took quite a few days. I not 'allergic' to these things but they do set off erythromelalgia. Epsom salts can do it to me. As can chemicals in foods, and some other meds. The reactions to some foods is not as extreme but it's not nice. When I have to take a new med I get nervous. With most of them I don't respond like this but sometimes I do. Antibiotics have been a real pain 4 out of the 4 different ones I've tried in the past 12 years. Not life threatening but certainly painful and anxiety and misery inducing for a while.
Seeking the help of an immunologist/allergist was the best thing I could do. Virtually I was reassured that it wasn't life threatening. That it wasn't a serious allergic response. Only a doc can tell you this - sometimes it's hard to know the difference. So I would urge to you see a doctor about it. I don't want to assume we are having the exact sort of reaction.
I've had life threatening allergic responses twice in my life and now carry an epi-pen but have not needed to use it yet, knock on wood. Most of my allergies are milder. It's good to know what is an allergic response and what is an adverse reaction. To understand the difference. Only a doc is qualified. With an extreme allergic response it's imperative it's treated immediately followed up by a trip to the hospital. I would advise you again to see an allergist/immunologist or even GP to just talk about your reaction because I don't want you to assume it's the same as my painful, scarey but not lifethreatening reactions I have had twice. I know the difference now. Although I have been to emergency a couple of times to make sure.
BTW, this extreme sensation (or what I think of as extreme) is not with me all the time. Far from it. When it happens there is usually something I've done differently that has caused it and I can often pinpoint the cause. And new things (meds) don't always cause it. Trying new meds is scarey but mostly I don't get this response.
Alina, please talk to a doc about it. I don't want to scare you. But I don't want to assume your reaction is the same as mine and occurs for the same reason. I'm not a doctor. I'm an historian. I couldn't even pass science at school so please don't assume it's okay because I said I get it and 've learnt the best way of handling it for myself. You might not have the same thing happening as I do. And if you are a person who has allergies treating it as something that will pass could be dangerous.
blue
Alina Delp said:
Does anyone else have this problem but intermittently?
The first time this happened to me it was in the evening at home after a few hours in the ER and having a CAT scan with IV.
I woke in the night with so much pain just from my sheets. My husband couldn't gently touch me without pain any of the lightest touch would be excruciating! I chalked it up to a bad relation to my injection at the hospital. It lasted a few weeks then it just got better. It has happened a few more times and every time only lasting a few weeks at a time. I had to have another CT with contrast some time later and I asked them if that could of caused my reaction and they said it couldn't and If I were to have a reaction at all it would of been immediate.
I am so sorry for those of you that go through this everyday. After experiencing this for a short period of time I couldn't imagine it being here all of the time.
I can so relate. I might only go out for an hour or two but as I walk in the door first thing I do is kick off shoes and then go get into my comfort clothes. such a relief!
blue
Nel said:
When I go to the hospital which is all too often since my accident I always feel I must wear knickers (right side out too), trousers, and shoes (because of the crutches) and it is one of the great pleasures in life to get home, whip them all off and get into a nice cool silky dressing gown. Almost as good as a glass of wine used to be.
Extreme skin sensitivity I think is very common among us. I have it sometimes as well, but I was told it's more likely due to the small fiber neuropathy, which most of us EM-ers have anyway. The small fiber nerves are the ones closest to the top of the skin, as opposed to the large nerve fibers which are deep down. So when they are flared, as in EM, it can def cause that extreme sensitivity, Have you poss been worked up for SFN or dx'd?? If not, I would poss look into it.
I got to thinking after reading all of your posts, I have fibromyalgia and they blame a lot of these symptoms on it. I don't know if EM and Fibro. are interconnected or if they are totally separate conditions. I talked to my doctor about the swelling and burning with my feet and she is sending me to a Neurologist. I am also diabetic so on my summary she put down diabetes with neuropathy. She also told me if I want to improve my overall oh what do they call it, uh living conditions anyway, then I need to go back on some of my meds., the Cymbalta, Nortriptylene, and back on Lisinopril for the edema. I wanted to scream because I don't want to have to rely on drugs so much, but I have been in so much pain I need to do it. Anyway, I apologize, here I am rambling, the thing I was trying to talk about here is how much the three conditions I have and so many of us have, seem to all be so intertwined. When you have fibro, you can develop sensitivity to chemicals, to the air pressure, to the heat and cold, you may have depression, sleep apnea, tingling in hands and feet, fibro. fog, etc., and almost all of these can happen with diabetes, and sounds like with EM. So my question is are they all just one condition and they haven't linked them together yet? I have a feeling that there is something out there that covers all these symptoms as one condition and the researchers or doctors or whomever just haven't told us about it yet. They just go by the presenting symptoms at that time. Maybe I am crazy, it wouldn't be the first time somebody told me I was, but this just doesn't settle with me as being so many different diseases or conditions and having all the similarities that it does. I know the medical field has to have things broke down into smaller bites in order to treat it, they can't treat the whole body symptoms overall. Comments, please don't be afraid to leave some.
I take your point and I think most of us have a degree of neuropathy though in my case quite mild. I have no fibro or diabetes. I do however have, and have had most of my life, Raynauds and for nearly 30 years have been hypothyroidal and those two along with EM are another triangle. People with MS get EM and people with platelet disorders too. You can find quite a list of possible culprits. That’s one of the reasons why we are so different in how EM affects us and what medications can help.
Just my thinking.
Nel
gtrembley said:
I got to thinking after reading all of your posts, I have fibromyalgia and they blame a lot of these symptoms on it. I don't know if EM and Fibro. are interconnected or if they are totally separate conditions. I talked to my doctor about the swelling and burning with my feet and she is sending me to a Neurologist. I am also diabetic so on my summary she put down diabetes with neuropathy. She also told me if I want to improve my overall oh what do they call it, uh living conditions anyway, then I need to go back on some of my meds., the Cymbalta, Nortriptylene, and back on Lisinopril for the edema. I wanted to scream because I don't want to have to rely on drugs so much, but I have been in so much pain I need to do it. Anyway, I apologize, here I am rambling, the thing I was trying to talk about here is how much the three conditions I have and so many of us have, seem to all be so intertwined. When you have fibro, you can develop sensitivity to chemicals, to the air pressure, to the heat and cold, you may have depression, sleep apnea, tingling in hands and feet, fibro. fog, etc., and almost all of these can happen with diabetes, and sounds like with EM. So my question is are they all just one condition and they haven't linked them together yet? I have a feeling that there is something out there that covers all these symptoms as one condition and the researchers or doctors or whomever just haven't told us about it yet. They just go by the presenting symptoms at that time. Maybe I am crazy, it wouldn't be the first time somebody told me I was, but this just doesn't settle with me as being so many different diseases or conditions and having all the similarities that it does. I know the medical field has to have things broke down into smaller bites in order to treat it, they can't treat the whole body symptoms overall. Comments, please don't be afraid to leave some.