I was just wondering if anybody else suffers from severe itching. I have noticed that when I get slightly warm I have been getting horrendous itching on my neck and chest area. It is so bad that i end up clawing at it. Cooling it with cold water helps but it soon starts up again if i go from one temperature to another. Even when the weather was really cold I would get it when going from cold environment to a warmer one. I have noticed that it’s usually at a time when my feet and hands are flaring but not always. I can’t find any information that makes me think it’s an EM related symptom tho. I thought I would ask the experts in our condition… You… Do any of you get this and is it a separate condition…?
Hi, I am new to this site .....& new to the EM diagnosis after months of agonizing foot pain with severe discoloration that nearly keeps me house bound. My new Rheumy finally diagnosed. I told her just the other day about my horrible itching & she didn't say anything in regards to it being related or not. She is testing my cortisol level to see if I may also have Addisons. I get really itchy if I get warm, mostly around chest and neck. I also will sometimes just start itching really bad if I have clothing too snug, like jeans or even a bra. I have gone from being an active, half decent dressed person to someone who is usually found at home, in sweats & no shoes!
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Hi, thanks for the response, I find wearing shoes difficult and choose comfy clothes too, I tend to wear dresses and leggings in the winter with a cotton cardi on, can still look smartish with comfort. It's so sad that EM takes away so much of peoples lives.
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Hi, its Paula...(Sweetpea)
We ar heading into a heatwave and my left leg is all red and shiny and swollen and itching like crazy. I have to stay inside in the dark with no shoes and nothing touching it. Noise and commotion seem to reaaly aggravate it, and temperature changes.
Does anybody else have muscle weakness and wasting in their legs?
Yes, my abdomen gets very itchy when warm. I know it’s a symptom of POlycythemia Vera which can alSo cause EM, but that is the only link that I know of.
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Is polycythemia a blood disorder.? I got a letter from Dr Bennett today with info about my last appoiontment and he mentioned he thinks my secondary EM is caused by blood dycrasia which after googling it have found it means abnormality of the blood. He took loads of bloods and I'm awaiting the results.
Tullilou said:
Yes, my abdomen gets very itchy when warm. I know it's a symptom of POlycythemia Vera which can alSo cause EM, but that is the only link that I know of.
Yes, Polycythemia (PV) is a blood disorder. It is where the bone marrow makes too many red blood cells, and the hallmark is a high hemoglobin and hematocrit. The excess red blood cells make the blood thicker.
My first blood test after my feet began to have problems (before we knew it was EM) indicated that my hematocrit and hemoglobin were elevated. I was sent to a hematologist, but she was not convinced that it was PV. On last check, my hematocrit and hemoglobin were on the very high end of normal, but my primary care doctor thinks even that is too high considering that I am still menstruating, very heavily in fact.
It will be interesting to know what your blood work reveals!
I get itching spells on my hands bad I take atarax for it does wonders
It is blissfully cool today and the itching has subsided but this last few days it was so bad on my chest, back and lower legs that I couldn’t concentrate on anything. Today is perfect; any colder and I wilL be shivering and having constant Raynauds attacks unless I wear more clothes or turn on a heater and then the itching will go mad again. Oh no, the sun’s come out. Time to pull down the blinds and hide!
I know how you feel Nel, I find the winter horrendous because if I don't wrap up I get Raynauds type attacks then as soon as I start to warm I end up itching all over and having EM flare... I find the summer easier to deal with because it's one less pain to cope with.!
I found that if I put ice packs on my groin...at the top of each leg...it cools my legs down all the way to my feet and helps the itching and burning. Also the dark and cool helps .
lauraflora1 said:
I know how you feel Nel, I find the winter horrendous because if I don't wrap up I get Raynauds type attacks then as soon as I start to warm I end up itching all over and having EM flare... I find the summer easier to deal with because it's one less pain to cope with.!
I'm still waiting for my blood results, Kings haven't been too great at sending me the results and because I only see my pain specialist (who referred me) every 6 months it's going to be a while before I get them.
Tullilou said:
Yes, Polycythemia (PV) is a blood disorder. It is where the bone marrow makes too many red blood cells, and the hallmark is a high hemoglobin and hematocrit. The excess red blood cells make the blood thicker.
My first blood test after my feet began to have problems (before we knew it was EM) indicated that my hematocrit and hemoglobin were elevated. I was sent to a hematologist, but she was not convinced that it was PV. On last check, my hematocrit and hemoglobin were on the very high end of normal, but my primary care doctor thinks even that is too high considering that I am still menstruating, very heavily in fact.
It will be interesting to know what your blood work reveals!
I find that the itching I get on my chest/neck can be eased with an ice pack wrapped in paper towel or just a cold wet paper towel. It does have an impact on my work tho because I have to keep going off to cool the area.
Sweetpea said:
I found that if I put ice packs on my groin...at the top of each leg...it cools my legs down all the way to my feet and helps the itching and burning. Also the dark and cool helps .
lauraflora1 said:I know how you feel Nel, I find the winter horrendous because if I don't wrap up I get Raynauds type attacks then as soon as I start to warm I end up itching all over and having EM flare... I find the summer easier to deal with because it's one less pain to cope with.!
My feet started out with a rash and severe itching when I first was diagnosed, but mainly it acted up when they were very hot. I looked it up and this disorder was the first thing that I found. I asked my doctor about it and at first he didn't think this was what I had, but my biopsy confirmed it. He had not known too much about this disease, but has learned what he can to treat me for it and also sent me to a local neurologist who really didn't have much to add to what he was already doing. He did tell me that the rash I had associated with it was not a common characteristic, but did appear to be related in his opinion. I have continued to get blistery rashes on my feet at times when my feet flare up a lot. I generally wear sandals- I'm not sure though how I'm going to manage this winter- likely with the ketoprofen/amitriptyline/tetracaine gel with socks and my usual sandals.
Hi, I am newly diagnosed (in the last month). I just jumped onto the Support Group website to see if anyone else gets itching with flares. I guess I have my answer! I just now began having a very bad facial flare and started itching on my cheeks and chin. My face feels like heat is coming off of it and it makes my eyes burn. Although I have suffered with facial flares for quite sometime, the itching is new for me. Going to take Benadryl because this is really starting to scare me! Glad to know that it seems to be linked in someway to EM. The thought that it could result from PV however is very concerning. My last blood tests (tons of them before EM diagnosis) were fine. Seeing my Pain Dr next week so I will mention it to him. Have any of you ever seen Drs at Rush or Nothwestern in Chicago? Or maybe at Cleveland Clinic in Ohio? I’m still looking for a Dr that knows a thing or two about EM, in the Chicago area.
I was also wondering if any of you get nausea, dizziness, vision problems and/or chills with your EM. If any of you get these things please let me know. I’m so scared by all of this! It’s so overwhelming!
Looking forward to your replies because you are the only people who TRUELY can understand what I’m going through.
Thanks to all of you!
Just realized that this is a really old thread! I’m hoping that some of you see it as I don’t have time to retype it elsewhere…
Withpaincomesstrength
I get brief dizzy spells & nausea daily, usually late afternoon from May onwards untill about October when the weather cools down again. Also lots of chills, My feet itch also with flares
Marti
Withpaincomesstrength said:
Hi, I am newly diagnosed (in the last month). I just jumped onto the Support Group website to see if anyone else gets itching with flares. I guess I have my answer! I just now began having a very bad facial flare and started itching on my cheeks and chin. My face feels like heat is coming off of it and it makes my eyes burn. Although I have suffered with facial flares for quite sometime, the itching is new for me. Going to take Benadryl because this is really starting to scare me! Glad to know that it seems to be linked in someway to EM. The thought that it could result from PV however is very concerning. My last blood tests (tons of them before EM diagnosis) were fine. Seeing my Pain Dr next week so I will mention it to him. Have any of you ever seen Drs at Rush or Nothwestern in Chicago? Or maybe at Cleveland Clinic in Ohio? I’m still looking for a Dr that knows a thing or two about EM, in the Chicago area.
I was also wondering if any of you get nausea, dizziness, vision problems and/or chills with your EM. If any of you get these things please let me know. I’m so scared by all of this! It’s so overwhelming!
Looking forward to your replies because you are the only people who TRUELY can understand what I’m going through.
Thanks to all of you!
Just realized that this is a really old thread! I’m hoping that some of you see it as I don’t have time to retype it elsewhere…
No itching
Hi no have not seen this but have got numbness in feet and hands
Hi yes I get chills was not sure if related but I think it could be
marti said:
Withpaincomesstrength
I get brief dizzy spells & nausea daily, usually late afternoon from May onwards untill about October when the weather cools down again. Also lots of chills, My feet itch also with flares
Marti
Withpaincomesstrength said:Hi, I am newly diagnosed (in the last month). I just jumped onto the Support Group website to see if anyone else gets itching with flares. I guess I have my answer! I just now began having a very bad facial flare and started itching on my cheeks and chin. My face feels like heat is coming off of it and it makes my eyes burn. Although I have suffered with facial flares for quite sometime, the itching is new for me. Going to take Benadryl because this is really starting to scare me! Glad to know that it seems to be linked in someway to EM. The thought that it could result from PV however is very concerning. My last blood tests (tons of them before EM diagnosis) were fine. Seeing my Pain Dr next week so I will mention it to him. Have any of you ever seen Drs at Rush or Nothwestern in Chicago? Or maybe at Cleveland Clinic in Ohio? I’m still looking for a Dr that knows a thing or two about EM, in the Chicago area. I was also wondering if any of you get nausea, dizziness, vision problems and/or chills with your EM. If any of you get these things please let me know. I’m so scared by all of this! It’s so overwhelming!
Looking forward to your replies because you are the only people who TRUELY can understand what I’m going through.
Thanks to all of you!
Just realized that this is a really old thread! I’m hoping that some of you see it as I don’t have time to retype it elsewhere…
I do get dizziness, nausea and vision problems but have since been dx with ms as well and those symptoms are down to the ms and lesions on specific part of brain!