So, let me give you the run down because I haven’t posted in quite a while. I’m 32, I have type 1 (juvenile diabetes), fibro, and sle. I have a new symptom they call petechiae. It’s where blood comes to the surface of the skin, looking for oxygen. It happens around people’s eyes when they’ve been choked. Anyway, it’s not on my eyes, it’s on my lower legs, ankles, and feet. I’m really fair skinned and it’s basically just pink dots everywhere. And it itches like crazy but doesn’t spread, doesn’t get worse, and doesn’t get better. I’ve had it for about a year, but my gma just diagnosed with a rare blood disease called mda which can lead to leukemia. And one of her biggest symptoms was this petechiae on her legs. And being tired, which of course I always am.
So. . . Anybody have any input for me? Anything would be greatly appreciated!
Robin Roberts of ABC TV Good Morning America had MAD as a result of chemotherapy for breast cancer. She received a bone marrow transplant from her sister to cure it.
kaycie francis, I had petechiae --- took about a year to go away. I think it was from shaving my lower legs once without using any crème or lotion and the skin got irritated. I am a fair skinned LupanGeezer (62) and my rheumatologist told me, "Only girls shave their legs." I quit shaving my legs and it started to go away but took forever. Needless to say, I didn't appreciate my female rheumy's comment! All the best...
I had the same thing when I was about 35. It was crazy itchy, on my lower legs (mostly on my shins). It went away on its own first and I thought it was an allergic reaction to something.
It came back every few months or so. Then after about a year or so, it got a lot worse. My lower legs turned completely red from the blood and it would take weeks for it to go away. After a while, the bleeding was so bad that it left a permanent bruise looking thing on my lower legs. That bruise never goes away. I am 42 now and I have it every single day. The bleeding starts sometime mid-afternoon. My legs swell up by evening and those muscles get incredibly sore (like after a hard workout). The bleeding is moving up higher as well. It gets as high as my waist. Once I lay down, I feel much better and the bleeding stops. The usual bruise is there in the morning and the blood from the day before is faded. The swelling is gone.
I've noticed that when I sit all day (in the office), the bleeding is worse. Also, if I wear compression socks, it helps a TON. I had a biopsy on it last year and it confirmed that it was lupus related (the lupus is attacking the lining of the small blood vessels). Prednisone doesn't help. I've been taking anti-malarial for years now and it's not helping things either.
Also, I get fevers when my legs are bleeding badly.
I hope you will not go down this route. I would definitely make sure your doctor explores every option. My rheumatologist worked with my dermatologist when they diagnosed the lupus related vasculitis.
It is lupus vasculitis. I used to get it all the time. My triggers were the sun, alcohol, and being on my feet too long. Took a vacation in Hawaii and ended up purple from my ribcage down. It was the combo of sunburn, drinking, and smoking (I quit 21 years ago) that did me in. I get it very rarely on my legs now. Primarily because it has moved to my abdominal wall. Feels like a metal millipede with hooks on each segment and pincher feet is moving around in my abdomen. If you are worried you can have it biopsied but it left me with a perfectly round scar from where they did the punch. From what most people have said it is the sun and alcohol that seem to trigger it the worst although I started getting it at 12 so it was definitely not alcohol related then…lol I hardly ever wore shorts in high school and college because I hated what it looked like. Drink lots of water and massage your lower legs in an upward motion to get the fluid moving towards your heart. I hope this helps : )
I too get these spots around my feet, legs, well pretty much everywhere. If I am on my feet for to long, wear something a bit snugged or something that is rubbing against my skin like sanddles, i break out with these red spots.
I too was told that it was petechia at first but then it spread through my eyes, face and head. Went to ER n they determined it to be Vasculitis. They said its inflamed blood vessels, common in Lupus patients but can get dangerous especially around the head n chest.
Seeing a hemotologist (i think i spelled it right, blood dr.) this month in Stanfford to get this check out. It’s a constant thing with me. When I have a bad outbreak they put me on 20mg of prednisone. Really, that I have heard, thier is no other med to control it.
Hope u don’t get it as bad as I do. I know when it comes because it hurts like pins n needles. I don’t itch I am in pain.
Take care
So do you still get it frequently but instead of your legs, it's on your abdomen? I have been trying to figure what to do about my legs. I don't drink or smoke. Never have. I do like the sun but I don't lay out and I definitely don't get sunburns. I do get a rash (not sunburn) on the areas of my skin that have been exposed to sunlight for a longer period. I haven't noticed that it was the sun-exposure that triggers the vasculitis as I get it as often in the winter as in the summer. I would love to wear knee-length (or shorter) dresses, skirts and shorts but I can't - my legs look awful. I am a size 0 and still have cankles by late afternoon. This disease is really taking so much out of me. I'm always tired and during flares I get this explainable depression. It's not like feeling sad or sorry for myself; it's more like being in a black hole, hopeless and not being able to get out. I want to have a full life again and enjoy spending time with my kids after I get home from work. I hate being tired and having to lay down early.I just want to kick lupus in the a$$!!!
Sorry for the vent. Reading how many people struggle with lupus makes me angry.
Annemarie said:
It is lupus vasculitis. I used to get it all the time. My triggers were the sun, alcohol, and being on my feet too long. Took a vacation in Hawaii and ended up purple from my ribcage down. It was the combo of sunburn, drinking, and smoking (I quit 21 years ago) that did me in. I get it very rarely on my legs now. Primarily because it has moved to my abdominal wall. Feels like a metal millipede with hooks on each segment and pincher feet is moving around in my abdomen. If you are worried you can have it biopsied but it left me with a perfectly round scar from where they did the punch. From what most people have said it is the sun and alcohol that seem to trigger it the worst although I started getting it at 12 so it was definitely not alcohol related then...lol I hardly ever wore shorts in high school and college because I hated what it looked like. Drink lots of water and massage your lower legs in an upward motion to get the fluid moving towards your heart. I hope this helps : )
please stay on top of the vasculitis. It may not be as serious as MDS but it can turn into something life-threatening as well. The vasculitis can attack organs and the brain as well. I don't mean to scare you. I didn't pay much attention to lupus for a long time. I was diagnosed when I was around 12 and was mostly in remission. Had very little problems until I started to get older. When I got into my thirties, I developed Sjogren's and it came with a vengeance. Eating a cracker could choke me to death. My Raynaud's got very bad - my feet and hands are purple even in the summer. It seems like my body just can't fight the disease as it used to. I'm trying to live as healthily as I can. I've been strict Paleo for about 8 years now and I think I would be much worse off had I stayed on SAD (standard american diet). Not eating sugar and refined foods seems to help my energy levels and my immune system.
I wish you all the best :)
kaycie francis said:
Andi, I also get the swelling and a low grade fever. The fever comes a few times a week and I feel some flu symptoms until I rest. After half an hour to an hour, I'm feeling better. I never put that together with the petechiae. I'm ok with it being related to lupus as long as its not MDS since MDS can be more life threatening.
This discussion is very interesting From my knees down I have red patches that burn and the soles of my feet burn... it feels like a bad sunburn .This has just happened in the last year and it never go away ... but is getting worse . Does anybody have problems with their legs and feet burning ? I have had lupus and Fibro. plus other things for about 30 years or so. Would this be what I have (( vasculitis )) ?
My son gets it all over his body when he is sick and his blood platelets are low. It can also be a symptom of meningitis. Make sure your doctor knows...it can be serious... Take care...
Now you've got my curiosity up. I'll have to do some research. I have had petechiae on my legs for years. I also have diabetes. I want to look up this blood disorder your grandma had. Thanks for the correction, saying it is called MDS. I was told my petechiae are due to weakened and inflammed veins and blood vessels that often happens with autoimmune diseases, called vasculitis and arteritis (artery inflammation, not arthritis). I'll be watching your discussion to see if anyone else knows much about it. You can also Google "petechiae and fatigue as symptoms" and see what comes up. I will do the same.
Ok I found something. One site says that Lupus is a common cause for petechiae and that it is harmless if that's the cause. There are 2 types of causes. Infectious and non infectious, and Lupus and even some meds can be the cause. Here is everything you ever wanted (or didn't want) to know about petechiae http://healthfixit.com/petechiae-petechia-pictures-causes-diagnosis-treatment/
Petechia is what peaked the curiosity that something was wrong with my husband. He had hundreds of tiny, red/purple, flat to the skin spots. We learned that stress is a HUUUUGE factor for his flares. Of course, there are a million reasons you would be having a flare but that's we what have learned. Also… they have him on Plaquinel, Prednizone (which mostly controls the petechiae), Citrizine (allergy meds - helps to control the hives that come with those lovely purple spots) and Celcept. After about 2 months of all the meds and more on a schedule of diet, exercise and rest… he hasn't had petechiae or very little. One thing I CAN give advice on… pay attention to what you eat… it might not agree with you anymore. Take notes of what you eat and did that day and eventually it will help you learn what is causing the flare. Also, ANTI ITCH cream!!!! We have gone through sooo many tubes of "Itch X" and that's the only stuff we found to take the itch away. I really hope this helps. I know it's miserable.
Shiela and Laci are correct about the Petechia. I would seriously doubt it is anything more than just good ol’ Lupus. Petecia are not from lack of oxygen. When on tv they talk about petechia indicating strangulation it is do to the extreme pressure on the blood vessels. Petechia can becaused around the eyes when someone sttains to lift something heavy, has extremely “satisfying sex”, heavy coughing, basically anything that puts pressure on the circulatory system in the upper body and muscles around chest and neck. They, petechiae, often show up in the tissues around the eyes because the skin is thinner there.
I’m so glad you posted this. For the last month I’ve had these red patches just appear out of no where and they itch like crazy. I didn’t think it was anything. Just figured I was out in the sun too long. When it got really bad on my back I went into the pc doc (had to see someone else in his office because he didn’t have any appointments available. She said it was just an allergic reaction to something and to take some benadryl. I of course didn’t because I don’t want another thing to ingest into my body. It eventually went away on the bavk but now they are on my arms and legs. It just comes out of nowhere. Guess another trip to the doctor is in order
because he didn’t have any appointments available. She said it was just an allergic reaction to something and to take some benadryl. I of course didn’t because I don’t want another thing to ingest into my body. It eventually went away on the bavk but now they are on my arms and legs. It just comes out of nowhere. Guess another trip to the doctor is in order