I've been walking in the UK, perhaps excessively, and have developed this again even though the temps have been under 70F. It seems worse on one leg, and I wonder if it occurs more frequently after an initial outbreak. I wish I could do something more to prevent it. Ideas other than not walking so much?
I am a 50-year-old female with an autoimmune disorder called Sjogren's Syndrome. I have had vasculitis on my (mostly lower, sometimes upper) legs for 30 years. It started gradually, but when I was about 30 years old with two young boys, I couldn't make it through a single day without an outbreak. I was put on Prednisone and that helped tremendously, but I didn't want to stay on it forever. Instead, just by chance, I found that wearing compression stocking knee highs (20-30mm) works great. I wear them every day, all day until I go to bed, and I rarely have an outbreak. It has really been life changing for me. By the way, I am not and never have been overweight.
I think some of the people writing in this forum have an allergy to the sun, which looks like sunburn but doesn't hurt (I have that too), whereas vasculitis causes some pain or tenderness. I hope I can help some of you. It's wonderful to have a solution that doesn't involve drugs.
SO CONFUSING! first got this rash in Long Beach California after walking in sandals on cement in summer temps.
I thought it had to be from either sun or sunscreen because it started directly above my ankle sock line. I was 48 years old (female), healthy weight, very thin calves, overall good health, not at all prone to any kind of rashes...EVER!
it progressed from non-raised little specs that were bright red at first, then turned brownish....(almost like little blood drops)....to a raised and itchy burn-looking rash....dropping down to the area around my side ankle bones all the way up to right below my knee caps....mostly on the front of my shins. I have tried every lotion, ointment, advil, ace-bandages, oatmeal baths, etc. it seemed to be gone over the winter.
the first time I wore shorts last month I was sitting under an umbrella and the sun hit a certain spot on each shin....and that night I had a red burn-looking rash in only those exact spots. so it seems like, no matter what caused the rash initially last year, the sun triggers a new rash. I have been wearing sunscreen on my legs since then and the rash has been contained to those 2 areas....but they won't go away. some days they barely show. other days they look horrible.
I have same problem and I find that wearing flip flops works for me even in warm weather. I find that any constriction of blood flow from the feet cause a rash even in warm weather. I walked around in 100 degree weather in flip flops and no rash !!! Just give it a try. For me keeping any kind of constriction off my feet works. Good luck !!!
I'm so glad I found this community! I am a 54 year old golfer in Georgia of English/Scottish descent and I have suffered from this horrible condition for the past 3 years. The weird thing is that I play golf all over the place with women of all ages and I seem to be the only one with this condition! My first episode looked like someone had spray painted the inside of both my ankles with bright red dots. As the years progress, each outbreak gets bigger & bigger, migrating upwards, and always worse on the left leg. I am on a daily diuretic for blood pressure control, I am trying to break an addiction to Diet Coke, and I am trying to make myself drink water (uphill battle that I'm losing!). After reading all the comments, I plan to buy Zyflamend, take Vitamin C, drink sports drinks throughout my round, and after I play golf, I will elevate my legs and apply ice.
I will report back after I've spent some time on this new regimen. Thanks to all for your helpful comments, I'm so glad that I'm not alone!
You might also try spritzing ice cold water on your legs every so often. This used to help when I was in the Arizona heat. Now that I'm in Georgia, I have not encountered the condition in years, but I haven't tried playing golf either!
However, I wonder whether the *DIURETIC* is the key. I used to be on a medication with that effect, but I switched off of it. I thought that moving to a cooler climate was the reason why I never get this condition anymore. I wonder if it is the lack of the diuretic???
I am a 61 yo female, from Israel but have been living in California for the past 30 years, therefore the climate I am in is very pleasant, not hot.
My symptoms are different than the rest of you: I don't have any red rash, but I feel pins and needles all over my body, sometimes more in the face than elsewhere.
I started keeping a journal of what I eat and what meds and vitamins I take.
The common denominator is that I get these feelings after I walk and sweat profusely.
Two days ago I stopped taking my medications and vitamins, thinking maybe those have something to do with it. But the symptoms continue to appear, specially in the early evenings......after taking the dogs for a walk.
So again, I think that it has something to do with the "thermoregulation" of my body.
I will try to drink water more frequently and not eat salty stuff.
I was wondering if anyone here has similar symptom (feeling only the pins and needles without the rash).
It seems most of you never have any residual pigmentation.
I play alot of golf and I get this around my ankles and on my shins.
But i never get the angry red rash, I just get red/purple/brown spots and patches. These fade during winter but never goes away completely.
At first I just thought that my tan never went away.
It would be interesting to hear if anyone else get this residual pigmentation
I thought I replied to this, but it seems to have disappeared into the either.
I do have some discolored areas on my lower legs, but if I look really closely, what I see are very small surface blood vessels. They lighten during the winter, but never completely go away, These areas are also the first ones to get red when GV sets in.
I can also say that this condition is getting worse as I age. I can't help but wonder if the repeated and near constant inflammation during the summer has actual damaged the blood vessels making them even more visible.
Thanks for answering.
I can't really see tiny blood vessels in my discolored areas.
They look more consistent with red blood cells leaking into the skin. Brownred spots.
I have found that keeping pressure off the feet and letting blood flow freely works for me. I wear flip flops as much as possible and I do not get a rash when I do. Sandals that have any kind of restriction on the blood flow in the feet will still cause a rash. The flips flops may work for you so please try it.
Thank goodness I found this site. I have had the non-itchy, red broken capillaries problem for about 5 years on the inside of my calves and the occasions when it has developed are unbelievably similar to so many of your stories. I am English, fair skinned, very slightly overweight, 59 years old, have a minor auto-immune condition and have had the problem on a Baltic cruise (unseasonably hot and humid), walking in Sri Lanka, Costa Rica, Thailand, Spain and Morocco and last weekend, a very long 'shop til you drop' day in a nearby city to where I live where it was very hot and thundery.
I have shown photos of the rash to my doctor, nurses at my surgery and even pharmacists telling them that I have never considered my rash to be an allergy but they have always drawn a blank, mainly because the rash it not itchy. I have always known that long periods of walking have always been a contributing factor as I never get it in my normal life. I have a fairly sedentary job and rarely do exercise and so I knew the appearance of the rash on my walking holidays in hot climates must be THE issue. Now I know that the more recent shopping trip in England ( the first time I got it at home) was probably due to the length of time I was walking and the heat and more particularly the humidity which I had not linked before. I also got very thirsty shopping and, although I bought water, for some reason I didn' t drink much of it.
Therefore I will definitely try to drink more water whilst walking in heat and humidity in the future and hopefully reduce the likelihood of it developing at all. I will reduce my salt levels too if the drinking-more-water solution (ha) doesn't work.
Thanks to everyone for your contributions -they have helped me a lot
Hi, I'm new, but my vasculitis is not. Certainly heat, humiditiy and physical activity make it much, much worse, but I do have some small spots at any given time of the year. ( I live in Michigan)
It seems like there are two camps, golfer's vasculitis who get it only above a sock line and those whose socks make it worse. Having just returned from being outdoors at a drag race all weekend (80 degrees) and doing some walking, I had a bad breakout below the sock line. I do get some above the sock line, but never have I had an instance where it totally stopped below the sock line like some others and pictures I have googled. In fact, my one inch above the ankle bone socks make it worse and it is not so bad above the sock line.
I am interested in hearing from those whose socks make it worse. For me, sandals do help in releasing the heat and it would seem that compression socks that are helpful to some would be counterproductive to those whose socks assist in holding the heat in. Agree?
I also will try to limit the salt along with keeping hydrated. I did use Claritin, but will add Ibuprofen at my next outdoor event here in July which actually happens to be a golf outing. I will let you know how it goes. I do have golf sandals, but typically have to switch to shoes at some point during the round.
Full disclosure, I have been to Cleveland Clinic (wonderful) and have had two biopsies confirming hypersensitivity or leucocytoclasitc vasculitis. I have stomach issues and have been on stomach meds for years (Aciphex is wonderful), however the last biopsy concluded that the vasculitis origin was from the gastro tract. I also was vitamin D deficient at my last general physical.
I am male age 50 and was first diagnosed with vasculitis 5 years ago.
I too have a rash in the heat on my ankles and lower legs. I find that wearing flip flops when even warm weather my legs will not break out. It takes the pressure off your feet so blood can flow freely. Try it as it may work for you also !! Good Luck...
Just today I was diagnosed with golfers vaculitis I am 57 and an avid walker.
During my 30's I had 3 children, each time I was told to wear support stockings to avoid varicose veins. Sometimes when I didn't wear stockings I would get odd leg rashes. I attributed the rashes to pregnancy.
Over the years , I volunteer at a festival standing for long hours in the heat and I would get the rashes. Now at 57, I have the summer off from school & I would with my girlfriends and see the sights of N.YC. We ve been having a ball, but each week, I would develope a rash. A internist gave me a prescription of predizone creme to put on the rash and it disappeared.
A vascular doctor was a little baffled saying it was a skin condition and sent me back to my dermatologist. The one thing that is consistent, is if I stand or walk for 4 to 6 hours in warm weather the rash appears. An allergist finally diagnosed it. I am having a sonogram done Wednesday just to make sure, there are no clots or other problems. I feel this is definitely a vascular problem. Even though they claim there is no cure and there is no problem having this, I find it hard to believe. I ve been dealing with this since my 30's
And when I wear light support panty hose, like sheer energy by Hanes when I know it s gonna be a long day on my feet( as I did when I was pregnant) the rashes do not appear.
I have developed vasculitus a few years ago. I woke up with it one day all over my feet and legs. It began to c limb up my body and a few spots on my face. I went to several doctors before a biopsy was done. They said it was chemically induced. Turns out a blood pressure medicine caused it. Stopped the meds and the spots went away. We have since found that I have an allergy to blood thinners, water pills and certain antibiotics. I haven't had a flare u p in awhile. Also I found out that alcohol and sugar alcohols in d diet food also brings them on. So my limit is 2 drinks on the weekend. But no known cure. Check the side effects of any meds you take.
Early this summer I decided to get in better shape and start walking the golf course. I'm 57 and walked 18 holes on a hot day. The result was that red rash on my lower legs that took three or four days to go away. I got it again the following week after walking the golf course, which sent me running to the internet and this site. With no real cure for it, I decided to experiment. My next time out I got rid of the high socks that went above my ankle. I replaced them with short socks that barely come up out of my golf shoes. I have since walked the course at least a dozen times in high heat without any outbreak of golfer's vasculitis.
Apparently the higher socks either hindered my circulation, increased the heat in my legs, or both. I don't expect this simple change to be a cure all, but it worked for me. Thought I would post it in the event it is helpful to anyone else… Perhaps I am just lucky, but give it a try.
update from ontheh2o - 9-1-14 - Went to another three day drag race. Changed a few things this time. No salty snacks, no socks, no shoes this time. Added better hydration, claritin, ibuprofen, sandals and icing my ankles down immediately after walking for any duration. Wow, did this improve things! I made it through the whole weekend with just a few tolerable vasculitis spots on my feet, nothing on my ankles (where it gets painful) and just a few spots on my calves.
My first case of a rash around the sock line happened when I was around 52 years old. It would come and go with most outbreaks in the warmer weather. I initially would find some relief using sun screen lotions and wearing long pants. I tried different types of socks and found no relief. My Doctor had no effective treatment as well. I had gone the last 3-4 years with no symptoms, but then it hit me while I was in Hawaii and 60 yrs. old. Nothing I tried seemed to help. After I returned home to Arizona I started searching the internet. One comment said they tried an over the counter steroid cream and they had found some relief. I tried Benadryl and it only gave me slight relief. I decided to try and exercise my lower legs to increase circulation and I started to use an over the counter cortisone cream. This has given me a dramatic improvement. It worked for me, so I hope it works for you as I know how aggravating this condition can be for people.