I forgot about 'itchy'. I can be itchy in many places but on Sunday night it was bad. Especially my back, where the itching was intense. It was associated with my back feeling too hot. It's winter here now and I was sitting on the couch very lightly dresses in very old soft summer pj's and my back was driving me
nuts. I didn't have any heating on yet felt hot and insanely itchy. I got up and turned on bright over head light and pulled up my pj top to expose my back and asked my husband what could he see. I thought that I had to have had a rash there. He said he couldn't see anything. That was probably the itchicest I have ever been. Of course later all the itchy places, back included, started to burn. no wonder it can be easy 4 people to think this is in our heads.
Nel's post reminded me of the itching.
silver, i can't imagine living in a Las Vegas summer with EM.
Blue.....posted from my tablet so please excuse typos etc..
Blue I have done the same so often. âThere must be something thereâ Iâve pleaded! I read on some forum, canât remember which, a suggestion that Curel Itch Defense works so in desperation I ordered some and it really does work for me to my great surprise. It comes from the US. I donât think I would like to use it every day but when my back is itching so badly that I can think of nothing else I put Curel on.
I am borderline Raynaud's in my hands and have EM in my hands, legs feet and elsewhere. By keeping my hands cold, keeping fan on them, never wearing gloves etc, I self inflicted causing chilblains, autoimmune blisters and lesions, with big cracks in my skin and lumps/blisters on every single knuckle.
Funny thing is, that apart from having to put nappy-rash and heal balm creams on my feet and that my toe nails are dying and calcifying, I have never had such troubles with my feet...and I have not worn socks for >1 year, walk in the rain, walk when it is near freezing and keep bed clothes off them.
Nifedipine has definitely helped with the circulation in my hands,albeit also has made my EM worse in my legs, feet and other areas.
It's a never-ending juggling balance, isn't it!
May you juggle well!
Kind regards,
Dkel
Dkel, your experience is a lot like mine. My nails are done, terrible. And same experience with Nifedipine. I can't use it at all in the warm climate. I'll see if I can use it this winter--it did help my raynaud's.
Even the name sounds good . curel itch defense. I am going to search 4 it now. Itching hasnât been so intense since Sunday night but it sure was mean while it lasted. Not looking forward to my next bout of itching. Sometimes it feels like my skin is too dry but at other times I feel like itâs a painful âwetâ itch only Iâm not perspiring or anything.
Blue
Nel said:
Blue I have done the same so often. 'There must be something there' I've pleaded! I read on some forum, can't remember which, a suggestion that Curel Itch Defense works so in desperation I ordered some and it really does work for me to my great surprise. It comes from the US. I don't think I would like to use it every day but when my back is itching so badly that I can think of nothing else I put Curel on.
I hope you find it and it helps. I never expect anything to work, indeed usually fear making it worse. I use E45 Itch Relief for everyday moisurising (the doctor prescribes it for me) but when the itch is frantic even that only helps for a matter of minutes. Curel does the trick for me and no I am not an agent or importer or shareholder:). By the way that is really weird that we both had a period of intense itching for the same few days on opposite sides of the globe. It is random and I can never pinpoint it to the temperature or activity though it is most likely to happen when the central heating is on but we are still in Summer - just.
a bit perplexing, i think. Sydney weather can get cold but my legs don't ever feel too cold
( not including my feet) I can go out bare legged, and do, in winter and I'm feeling Fine. Pre EM pretty much the same thing. I used to walk and jog through the winter - hiked for hours in bare legs. I dressed this way because I knew I would get hot from exercise. I'd wear a sweater over a t shirt that I could take off. Just like everyone else exercising hard. I just can't see that our temps get that low. Or maybe it's colder in S.A.? My grandma lived in the country where they would get cold winter frosts and her winter gear used to consist of stockings, shoes and warm woolen skirt but that meant from her knees to her shoes only stockings were keeping her warm. It seems normal to dress this way in winter here. I can't see how compression stockings would be less some warm than trousers or jeans.
I'm not questioning your doctor or I'm not meaning to, but most aussie don't live where the have to really rug up their whole bodies. Or have we been dressing inappropriately for our weather all Along?
That thrombophlebitis could be complication of lupus which I know you have too. Sounds horrible telling someone they self inflicted. If you had done that much 'damage' via cooling wouldnt you have noticable nerve damage/necrosis too? Without being critical..... like you I am just pondering ;).We know its usually due to circulatory problems - in our case I would think being mostly bed ridden with chronic edema hasnt helped.You have also had lots of IV, hickman lines which can all contribute to clotting. I have thrombophlebitis both legs due to EM. Have they given you anything to help? . Hope they are keeping good check on that my friend. R u on anticoagulants or heparinoid?
Temperature change massive issue!. Thinking of going to live in a hyperbaric oxygen tank somewhere ;)
I know from speaking with many members that many of us are frozen solid (actually arthritic), yet burning with terrible flaring. Time to revisit this topic!
How to ease frozen digits and not trigger a massive flare fest. Tips anyone?
Yea, here comes winter. It's not even cold here, but the temperature moves around a lot from morning to night. This is when things get so complicated for me. It's all behavioral management for me. I'm going to a pot luck tonight in sandals and I'll take some socks. The flare seems worse than the cold, until I get an ulcer. If I can go a year without one of those...well, that's the goal.
I donât think the Rwynauds/EM combo is manageable at this time of year. With a small baby in the house I have to heat it to some degree and am having heat flares as well as cold flares (the flare which results from getting too cold). I see-saw all day with footwear being the major problem, bare feet too cold, flipflops often too warm. I have taken to wearing socks just over my toes which is Ok when I am still but dangerous to walk about like that. I havenât worked out a way of getting the cut off toe of a sock to stay on. My hands are more controllable but my face does its own merry thing and I just have to put up with it with the help of a fan. I am just setting my sights on Springtime now.
I had a strange night last night with painfully frozen feet ALL night long to wake this morning with terrible EM.It almost always goes the other way around! Is it a fair assumption that most have Raynaud's more in the AM and EM more so in the PM? Does anyone else go through periods that can last as long as a couple months with cold ,white ,numb feet? After a few weeks sores start to form? At this same time I will still get EM flare just on other parts of my body. Only my feet have ever stayed in a Raynaud's state for so long. The fingers always come and go lasting at the longest a few hours. Thank you for your input.
Raynauds is my default position now. It has become worse over the years. But I am walking around on cold floor and if I attempt to warm them or over exert myself they will flare. When I go to bed I try not to have them too cold and then when lying down I warm up pretty quickly usually and a flare ensues. To sum up, if I am lying down my feet will heat up and it isnât only at night. So not help sorry Alina. How are they today?
Thatâs what is so strange. Itâs 6 am and they ate on fire! They are usually pretty good or Raynsudâs when I first wake. And they usually burn at night till 2-4am when they get better before waking in the morning. They are just doing what they always do but opposite for some reason.
When I wake my feet are cool so long as I get out of bed and stay out! I have a bad habit though of trying to answer emails before I leave the comfort of bed and can manage ten minutes sitting in bed before they flare. About 3 am is when I am safe to cover myself with a sheet but I wait until 3.30 to be sure they wonât instantly flare. First thing I do when I wake at night is check the time in hopes it is after 3.30.
What kind of sores Alina? On your toes or elsewhere on your feet? Itâs all so confusing.
Has anybody got any views on the thermography tests they do to gauge the extent of Raynauds? My daughter and I both had the freezing water test and I was told that my hands returned to warmth in a reasonably short space of time whereas my daughterâs hands took far longer than was normal. Only she has never shown any signs of Raynauds - no blanching of fingers nor numbness nor chillblains nor cold hands and feet while I have had all those since my early 20s and nose and ears as well as hands and feet. They said they detected vasospasms.
My fingers go white numb at the hint of a draught and can take ages to return to red. They are more often than not a dusky grey pink when not too cold and brilliant red when flaring. When required to stand in a playground in Winter my fingers have remained dead white for 25 minutes until I feared gangrene:). Now of course I have EM as well and an EM flare will follow the Raynauds. My daughter however does have symptoms of EM with red swollen soles of her feet and red tingling hands when near a heat source. They were worse before her pregnancy and the baby is coming up to 9 months old.
When I returned to the hospital,the purpose of the appointment at their suggestion to discuss infusion possibilities, the nurse told me that based on the thermography test results my Raynauds was not severe enough to warrant infusions. I am thoroughly confused.
Sorry it had taken so long to answer your question Nel. I just now saw you asked me one. Regarding these particular kind of flares. If I get pernio/RAYNAUDS in my feet for too longâŚsay non stop for the most part for a couple of weeks or more I get these blister like sores on my feet where the skin is that has had limited or no circulation for a while. They are like blisters but deeper if that makes sense. It is all but impossible to walk on that foot if these sores are on the bottom of your feet because they are so painful. unless on say your big toe where you can lift it up and limp along. I have only gotten these type sores on my feet but my Raynauds in my hands have never lasted more than a few hours at a time where the feet can last weekâs to a couple of months where I flare all morning and day ( unless Iâm walking then I still burn ) then every night I burn for a few hours. I probably have no circulation from the top arch of my foot throughout the ball of the feet and toes for 15-20 hours a day for up to a couple of months straight. So I only get these type in my feet.
I hope that clarifies it a bit more for you Nel. I promise to check back on this post if you have any more questions.