I was asking on another EM Group that I belong too about these tiny pinpoint red dots that have been appearing on my legs, mostly in the areas where I get flares. Interesting enough, I have found out that there are other EM sufferers who get this as well.
Has anyone found out why this happens? I will definitely be asking the dermatologist when I am there for my initial visit.
I am wondering if this will be a new ongoing thing that I should be concerned about! : (
Do they itch jen? I have such a rash on my lower legs which get terribly hot. But the rash itches like crazy and since only steroid creams help I just have to put up with it. When I strap on iced packs at night the itch goes away. Just one more weird thing.
Hi Nel....No no itching. They are in small clusters scattered where I get some of my flares on my legs. They look literally like tiny red pin points. And it's funny you mention rash because on my legs where I flare I have a very pinkish colored scattered looking rash that is patchy. I can't even distinguish if that is a rash or consistent flare. My legs always turning colors!
I get those tiny red dots that stay on my skin long after my flare subsides. They will go away after a long enough time without flaring in that area. If I flare over and over in the same area without a long enough time in between then they seem to be there all of the time.
I have learned a lesson lately about controlling my EM. I always knew if I flared around the clock I would get the raised almost like patchy areas of welts that itch like crazy especially at night. If you try to scratch them it feels as if your fingernails are made of razor blades. Any way I have stopped this from happening to me through lifestyle change. I stay in my extra cool home limit my activity and don't stand or sit with my legs down for any significant length of time. I sit in my recliner and I do things in my home in 5 to 10 minute increments or until flares begin then I rest in my recliner . For the couple of years I have lived lie this My flares have been so much easier unless I push myself of course. I haven't pushed myself over and over for a couple of weeks straight since I still tried to work. I was making a cake for some friends who were moving away and instead of stopping to rest when my flares began I would stop and rest when I just couldn't take the horrible pain anymore. In the evenings for the first time since I left my job I started burning with this crazy itch again keeping me up most of the night. This finally stopped happening the last few days ( about a week after I finished the cake). Even when I stopped working so hard I would still flare so much quicker and worse and the nights were a nightmare of intense burning and itching.
Long story long.....If I don't push myself too much I don't get that crazy itch with my burning and the consequences of pushing myself too hard last long after I have stopped pushing myself.
I have no idea what these little red dots are. Could you please let us know Jen what your Doctor says regarding them?
I itch just about all over though the places which actually flare, feet hands and nose mostly, tingle and prick but don’t itch. I have more or less given up trying to work out ‘why’ any of this.
jenl20102010 said:
Hi Nel....No no itching. They are in small clusters scattered where I get some of my flares on my legs. They look literally like tiny red pin points. And it's funny you mention rash because on my legs where I flare I have a very pinkish colored scattered looking rash that is patchy. I can't even distinguish if that is a rash or consistent flare. My legs always turning colors!
I, too, began getting these dots when my flares started getting worse. Initially, they were not present--it took about 3 months of consistent flaring. I have them worst in flare areas, but they have also extended up my legs in areas where I do not get flares. Where I have had severe flares for the past 2 years, they can also be raised. Fortunately, they do not itch. My dermatologist says they are "purpura" (http://en.wikipedia.org/wiki/Purpura ). Dots that are less than 3mm-1cm are purpura--less than 3mm are petechiae.
Oh my goodness, I get these too!
And I’ve been blown off multiple times when I would show them to my dermatologist AND EM doctors, arrrrg! They told me it was ‘skin breakdown’ since my EM is the worst case any doctor or specialist has seen. I love to excel in life, but certainly not in this area
I’m so happy to know I am not he only one who gets these. Do you use Anyang that has helped the tiny bumps? I’ve tried all sorts of stuff, no luck.
Be safe and stay cool!
Nice to meet you too BTW : )
Pesto
For me--nothing reduces the purpura except fewer and less severe flares. Sometimes the spots will lighten and turn a light brown. As soon as the flares worsen, the spots become purple. Good skin care helps--Lipikar Baume-AP applied at least 2x/day.
I am going tomorrow to dermatologist for my initial visit and I will definitely post what he says about these dots. I also have this very light rash, but no itching, almost like a lite constant flare. My body is so many different colors...from pink, to red, to tomato red, blue, white, purple...its exhausting...hopefully I get some kind of RX for this! I have started a journal and am trying to narrow down what makes flares worse, but honestly the second I am out of bed my legs turn colors.
Alina Delp said:
I get those tiny red dots that stay on my skin long after my flare subsides. They will go away after a long enough time without flaring in that area. If I flare over and over in the same area without a long enough time in between then they seem to be there all of the time.
I have learned a lesson lately about controlling my EM. I always knew if I flared around the clock I would get the raised almost like patchy areas of welts that itch like crazy especially at night. If you try to scratch them it feels as if your fingernails are made of razor blades. Any way I have stopped this from happening to me through lifestyle change. I stay in my extra cool home limit my activity and don't stand or sit with my legs down for any significant length of time. I sit in my recliner and I do things in my home in 5 to 10 minute increments or until flares begin then I rest in my recliner . For the couple of years I have lived lie this My flares have been so much easier unless I push myself of course. I haven't pushed myself over and over for a couple of weeks straight since I still tried to work. I was making a cake for some friends who were moving away and instead of stopping to rest when my flares began I would stop and rest when I just couldn't take the horrible pain anymore. In the evenings for the first time since I left my job I started burning with this crazy itch again keeping me up most of the night. This finally stopped happening the last few days ( about a week after I finished the cake). Even when I stopped working so hard I would still flare so much quicker and worse and the nights were a nightmare of intense burning and itching.
Long story long.....If I don't push myself too much I don't get that crazy itch with my burning and the consequences of pushing myself too hard last long after I have stopped pushing myself.
I have no idea what these little red dots are. Could you please let us know Jen what your Doctor says regarding them?
I am going to ask Dermatologist tomorrow about what exactly these are from and what can I put on my skin. All I know is I use Eucerin Cream everyday and that eases some of the burn on my skin. Obviously it does not help with these tiny dots.
Pesto said:
Oh my goodness, I get these too! And I've been blown off multiple times when I would show them to my dermatologist AND EM doctors, arrrrg! They told me it was 'skin breakdown' since my EM is the worst case any doctor or specialist has seen. I love to excel in life, but certainly not in this area :P
I'm so happy to know I am not he only one who gets these. Do you use Anyang that has helped the tiny bumps? I've tried all sorts of stuff, no luck.
Be safe and stay cool! Nice to meet you too BTW : ) Pesto
Did the dots eventually become larger into purpura?
Dragica said:
Hi Folks.
I, too, began getting these dots when my flares started getting worse. Initially, they were not present--it took about 3 months of consistent flaring. I have them worst in flare areas, but they have also extended up my legs in areas where I do not get flares. Where I have had severe flares for the past 2 years, they can also be raised. Fortunately, they do not itch. My dermatologist says they are "purpura" (http://en.wikipedia.org/wiki/Purpura ). Dots that are less than 3mm-1cm are purpura--less than 3mm are petechiae.
I have suffered with Petechiae and purpura for 7 years now off and on, at least 3-5 outbreaks a year. I actually had it before I was dx with EM. I have been to dermatologist, hematologists, rheumatologists, allergists, and finally an immunologist. The immunologist was the only one with answers and seemed to think it was an immune response (an over reaction) to whatever my body was reacting to, stress, something viral, chemicals in our food, etc. Since I have been on an Auto-immune diet for 6 months now I have only had 1 EM flare in the very beginning and zero petechiae. I’m getting ready to go off my whole aspirin that was prescribed for my EM. Yay!
Your comments are very interesting. I have wondered about EM and immune and histamine system involvement. How long have you had EM? And how frequent and severe are your flares?
I've had severe allergies and sensitivities all of my life and have noticed that after taking an antihistamine at night for nasal allergies, my EM is also better.
Could you tell us a bit more about what your immunologist said and share any written info provided to you about the autoimmune diet?
Went to dermatologist today and all he said regarding the red dots were, they are benign and nothing to worry about. He was more into observing the flushing and flaring that I was getting in his office. Probably cause I was stressed.
I’m So happy for you MtnGypsyGirl! That’s such good news! I love hearing about those that get better. It keeps my hopes up it can one day happen to me too! Thank you for being an inspiration to us!
Dragica, unfortunately I don’t have much more than that from the doctor because I ditched doctors a long time ago. The last time I saw him, which btw he is 1.5 hrs away…he said my tests weren’t definitive, but that he supected an immune issue. I have had rashes and cholinergic urticaria since 1993. Chronic sinus infections, petechae and fevers 2006-2009. I went gluten free as a last resort from 2009-2011, most of my symptoms cleared up but not all. When I got off GF they all came back and the the EM started in 2011…a new symptom. More doctors, more testing. I only show high on immune tests, nothing definitive. So I read Dr Amy Myers Autoimmune Solution and started the food protocol and I haven’t had the EM in 6months, or the petechae. I cannot get a doctor to understand that just because my immune tests are not definitive doesn’t mean that I don’t fall somewhere on the spectrum or have some sort of precursor immune issue. That book talks about this idea of a spectrum as well.
FYI, I just added some Petechiae pictures to my profile. Also, I don't have pictures but sometimes the petechiae can cause purpura or in my cause ecchymosis. Large patches of brown pigment that are drawn up to the surface of the skin during a petechiae flare. I went thru a few of these one year. The petechiae is reabsorbed, yet the ecchymosis or brown patches stay on the skin for sometimes up to 18 months. In my case they were all over the back of my calves, I couldn't wear skirts that summer, people would say oh you have some dirt on your legs, then I would have to explain...embarrassing. It took 13 months for the pigment to reabsorb. I had another episode with the ecchymosis right after the other one absorbed, this one took only 8 months to reabsorb and was a winter episode. I haven't had one of these since. I hope my experiences help others, I never shared about the petechiae before, because the doctors told me that it had nothing to do with EM, but what do they know? Again, I think my EM, petechiae etc is all immune related and the diet mentioned above has really helped me!
Hi ,I would also like to share that I also have a rash on both legs between my ankles and knees. It’s composed of tiny little red “blood clots”. Those areas burn and go red when I am experiencing flares from EM.i have only had this rash since developing EM 3 years ago. I recently saw a dermatologist and he diagnosed them as " Pigmented Purpuriz Dermatitis" He alluded to the fact that a lot of healthy people such as athletes get them, unfortunately I don’t fall into that category as I have numerous health issues! I am also interested in finding out about the Autoimmune Diet that MtnGypsyGirl has mentioned. I am currently on a diet for my blood type (A) and it’s has helped to relieve my EM symptons. I only experience mild flaring now of an evening and am able to tolerate slightly higher temps before I start to flare.
