I'd like to know anyone who's had this hideous and annoying condition anywhere on their bodies other than ankles and lower legs - have you had it start on your ankles and then over the years progress to other parts of your body? Any remedy to reduce redness besides not exercising or walking outside?
I moved from the dry climate of the Southwest and Southern Cal to hot and humid New England four years ago - nevr, ever had this until the first summer I arrived and then BAM! A weird, nasty rash that scares even me - I'm extremely active (walk every where and run 6+ daily) so suffice it to say being covered with this is not good for the image!
Seriously though I'd like to know if there's a way to treat and how to keep it from spreading.
Hi...I started getting this rash when I was about forty, just at my ankles but over the last 4 yeasrs has got worse, especially in hot countries, it has spread up to cover my entire legs, it feels like my legs are on fire, they go very taut, it is very painful. I get it all year long, but worse in summer. I use an antihistamine cream which really helps, takes a few hours to work but has a got effect, just left with a staining on your leg where the rash was, try it for yourself I hope it helps you.
Golfer's vasculitis is a form of vasculitis (swelling of the blood vessels) experienced in the lower legs caused by excessive exercise in hotter temperatures. It is more common among older people.
It is called 'Golfer's' due to the large amount of walking done in golf, as well as it being a sport more popular among older people, resulting in greater incidence of the condition.
The rash is more common in people over 50. Most walkers can't pinpoint anything new they have used that may be causing a reaction. And since so many walkers have it, they couldn't all have contacted the same irritant. The source is simply heat and age--your leg blood vessels getting irritated from the heat.
It seems to occur in healthy, active people. The researchers suggest it should not be a health concern and recommend not getting allergy testing, etc.
Pampering yourself after a good long walk by taking a cool bath, sitting with your feet up, or applying cool wet towels to the rash may help relieve discomfort.
Thank you Dr. Aparna for your time replying. This is all good information and details I've discovered on the Internet in doing my research on this odd condition. I've learn to deal with it, know that if I an walking a bunch in the hot, humid weather to take it easy, but only want to somehow know if it will continue to spread over the years as it appears to be doing each summer season. I'd also like to know if I relocate to a much, much drier climate if it might go away (lived in Arizona and California and never had the problem but also never walked 8+ miles daily either).
I'm only in my mid-40's; why do you think I contracted this?
Since you have been noticing that it does seem to be spreading then in all likelihood this trend will continue.
This is very commonly seen in allergic conditions, but it has not yet been proven that allergy is the basis for this condition.
Moving to a drier climate may help in removing the external factors that contributes to the condition but whether it actually brings about a remission is not known.
The reason for this is not known.
I got a very bad case this weekend after a strenuous 10 mile hike. I've had other cases in the past, but it seems to be getting worse. (I just turned 50) I even put a picture of how bad it looks online at:
I'm suppose to do a grueling climb of Mt. Adams in Washington State this weekend. I wonder if repeated "re-injury" would make it worse or be detrimental in other ways?
I'm amazed at how little (seems to be a big zero) doctors know about this condition; with SO many people getting it in one degree or another you'd think there would have been some sort of research conducted - I'm assuming because no one has died from it or that there isn't excruciating pain that accompanies the "rash" then there hasn't been the need? All I know is you can ask and ask and the same reply comes from everyone in the medical field - "uh... I don't know what that is, hmmm" Seriously. I have found that once its happened, doing a strenuous workout doesn't necessarily make it worse, it just doesn't start to go away until you've stopped the activity for a few days. I can be out walking for 8-10 miles (I live in Boston and we can walk everywhere) and if its hot and super humid, I'm guaranteed a nasty bout of it, but I can go run for 8 miles in the evening and it won't get worse.
I never get this from a run or a bike ride regardless of how hot or how far I go; only when I walk a lot in the heat and humidity.
I've been getting this rash since I've been in my early 20s - my mom and sister and niece all get it too so I assume there's a genetic component to it. The first time I noticed the rash, I had spent the entire hot, summer day at an amusement park. Then it occurred on my calves only. Since then, it's gotten worse with age: after walking around in Puerto Rico a year ago, it appears on my calves, thighs, belly and chest. Last week when I was walking around Manhattan, it crept up to my belly and ankles swelled up. It stings - especially when it first comes in contact with water. I can still see the marks - but only barely - but it itches like hell.
Well, I have a lovely case of this right now. It's been over 90 and humid here the past two days, and I walked 18 holes in the heat of the day both days. (No comments on the state of my gray matter, please.) The rash started yesterday and of course got worse today.
I'm 46 years old and have been having this problem since I started playing golf about 15 years ago. Like everyone else I know who gets this, it's always been limited to golf, so we blamed chemicals on the golf course.
I thought I'd post a picture of mine since it's not nearly as red as the other picture posted. It's a little hard to see on my photo because the entire back of my calf is covered. If you look down towards the ankle, though, you'll see it's a little splotchy there and you can see my normal skin color.
Yep, that's what it looks like, except mine is so angry red at the oneset - fads to a brown/purple shade but hangs around for days.... here in the Northeast its been 90+ with high, high humidity so I've had it for the past two weeks. I cannot, given how many people suffer with this, figure out why no one in the medical professional has sought the answers to why it occurs? To term it the "golfer's rash" isn't doing the condition justice nor do I think lending that name has doctor's taking it seriously either. I'm thinking abotu starting a blog dedicated just to this condition!
If you start a blog, I'll be happy to join you there. A couple of my fellow golfing friends have been suffering from this for so long, and I'm THRILLED to finally know what it is. I've never bothered going to a doctor because it always resolves itself without incident.
I found that it's also known as "exercise induced vasculitis" or EIV, and Disney World at one time called it "Disney Rash."
See what I mean? "Disney Rash? Who on earth would take anything seriously named "Disney Rash?" I'd like to devote some time to actually interviewing researchers and doctors to discover how it is no one "knows" about the condition - there as to be a connection to the blood, the heart, internal body temperature, whatever and to let it go as "oh well I get this now" to me is just absurd.
I'll post a blog address just as soon as I've started one!
Well the temperature controlled stockings is a great idea, but for someone like myself, there's no way you get me into a pair of those - cramps my fashion style if you know what I mean. If there can find the money to research "restless leg syndrome" which to me translates to "get off your duff and exercise that arse of yours" then researchers can find out what this gastly condition is.
I have had Tinea Versicolor for years, the humidity brings it out, it is a type of yeast infection. I have very fair skin which is very sensitive. If it is this, it can be treated by over the counter 1/2 % Selinium Sulfite in SELSUN BLue Shampoo, the prescription strength is 1%. Talk to a Pharmacist, they can be very helpful and very knowledgable.
I also live in the NE humidity outside Boston and before I moved here I have lived in the drier climates of CA, NM and Texas with no similar skin problem as I will describe;. Living in the north east humidity, I have noticed a stange heat rash around the sock line that can move up my calves. This does not itch and comes out on days I am active, even though I am very conscious to hydrate. I have begun to use the internet to help me understand what may be wrong as my recent trip to the Doctor resulted in a fourteen day prescription for Doxycycline/a Tetracycline antibiotic. She was concerned I may have Lyme Disease. Well the blood tests show this to be negative and I have been on the medicine for seven days now. I went out today in a 90+ degree July day and after one week of mild and subltle changes in the degree of my rash disappearing - it has suddenly reappeared. I would be interested in a blog to share this with others and find support from those who can relate. I also can not understand why more clinical test have determined a more defined diagnosis and treatment. I have seen information from Austrailia about this calling it "Golfer's Vasculitis" and have read that GENERIC NAME: mometasone/ a steroid can be helpful, but there can be side effects.
Excellent info - thanks so much! I'm discovering that there seems to be a unanimous similarity to everyone that is affected with this skin "condition;" of the people I have spoken to, each has or has relatives with pronounced vericose vein and/or spider viens in the legs, are fair-skinned and are of anglo-euro origin (English, Irish, Dutch, Swedes). This isn't science but at least something for me to start working with on the 'ol blog idea... there needs to be some sort of tally or research poll done so I have data to go on beyond the posts here and the vague "medical community" hypotheses that float around the web.
I ultimately want to know how or why the body's temperature rises to such a degree to cause a surface "rash," swelling and breaking of small blood vessels that "leak" due to this rise in body temp only in humid climates - that and how to prevent or at least lessen the recovery time - I refuse to wear pants all summer!
Mine has never gone beyond my knees, and is primarily on my calves extending slightly around the sides of my legs. It takes a day or two to go away. It's not itchy at all, and just slightly uncomfortable.
My mom had horrible varicose veins, but I don't. Still, I suspect I have circulation problems that are undiagnosed. Twice in the past year when traveling to tropical places, my legs have swelled unexplainedly. This last time, it was after a grueling 6 hour hike and took a couple of days to come back down to normal. I didn't get the rash, though.
I'd whole-heartedly support a blog or website where we could compile data. I started a YahooGroup for a disorder my sister had at one point, and it gives sufferers a means of exchanging information. One of the nicest things about it is the ability to create polls easily so data can be collected and trends observed.
I too have been baffled by the rash that I get on walking holidays and was pleased to read about 'golfers' vasculitis' and to know that I'm not alone. I'm thin, fit and run regularly but hiking in hot weather my legs get this dreadful red rash which I find stings and is hot and horrible. I stick my legs as high as possible in the evenings and try to cool with lotion but haven't found any miracle cream or anything. I got a bad attack of it when I got a high temperature last year - I started to worry then that I was going to have chronic red swollen legs like some fat old woman - but luckily they did return to normal after a week or so. If anyone has a miracle spray or advice as how to relieve it, I'd be grateful. This year not going on walking holiday until end October in hope of avoiding it!... and yes, I'm over 50 although don't like to admit it!!
OK, so this is what we know thus far; 1) this condition doesn't affect any particular age group (the idea that its "over 50" is only because the spattering of medical doctors tht have seen it have come from individuals in the age bracket who happen to be more proactive about their health concerns that people younger) 2) absolutely NO topical cream for itchiness, or swelling (cortizone for instance) reduces the redness, swelling or discomfort) 3) weight plays no role in the cause of the condition (I'm 5'8" 120lbs and end up covered with it) 4) no specific outdoor activity brings it on HOWEVER it does seem to be more frequent during long term walking not hiking or running which suggests something to do with blood flow (long walking can have blood "pool" over that time period while the running and hikes have you pumping blood/oxygen at a faster rate) and finally, no ingested medication remedies the condition either so while I'm not a doctor by any means, I wouldn't suggest to anyone to take a medication even if prescribed because your doctor is 100% guessing - I don't appreciate being anyone's lab rat as I've discovered more about myself and my health and healing on my own than any licensed doctor has done so far. The phrase "practicing medicine" didn't just pop up ages ago for no reason!
Occurring more often in females is only a result of the basic reality that women post and participate 70-30 to men in online discussions and message boards - men for the most part do not share their "stuff" with strangers.
This were abstracts from scientific studies however - although the abstracts don't discuss how they chose the subjects for the studies. It's possible that this is because women will seek out medical attention more than men - since in general that seems to be the case for men.
So I got it again today after walking 18 holes in 93 degree heat. It did not happen last week when it was in the mid-80s. There is definitely a temperature trigger point with me somewhere between those numbers.
So I spent the day walking and pounding the New York pavements yesterday (10Am to about 8PM) and of course my legs by the end of the day were covered in the pink/red welts - it was above 90 degrees and humid as hell so... I'm genuinely at the point of no fussing over the condition, just eager to find a fool-proof way of remedying it.
I golf with a woman who's a nurse at an outpatient surgery unit. She talked to the vascular guys about this. They confirmed what we pretty much already know about it, and said cold compresses are really the only thing that will help. They also suggested we might want to consider a vascular consult especially if there's every any swelling that goes along with it. I'm probably going to do that given that I've had two cases of my legs swelling up while traveling in the past year.
I say go for a vascular consult if for no other reason than you'll feel like you're doing something; I can tell you from my own experience, I've been poked, photographed and biopsied and "duh I don't know" is always the answer... what I'm considering is researching grants that might be available to pursue a study on this condition; I'm going to compose a nice, tight proposal and submit to the various medical institutions here in Boston (we're blessed to have Harvard, MIT and many independent research facilities based here) and just see if anyone bites on this... I might have to conduct my own small scale survey but that wouldn't be too tricky or costly I don't think.
If anyone here posting knows of an investment resource for this let me know!
I'm probably going to get the consult. It certainly can't hurt.
I went golfing again yesterday, and like clockwork, I got it again. The interesting thing about yesterday, though, is the humidity wasn't nearly as bad as it's been. Now that's all relative given that I live in Maryland and what's not humid to me would probably be like a sauna to others, but I'm getting the feeling it's just a temperature thing with me.
The other interesting thing is that it's completely gone today. Usually I have some remnants the next day, but I don't see anything today. I slept almost 8 hours last night, though, so maybe that helped.
We do know that with this condition, once the vessels in the legs and whereever else one gets it have opened or "bled through," they don't recede 100% ever - that's how we "get it" over and over again, in the same place but covering larger surface each time (at times). The disappearing act the "rash" does from time to time seems in part to the person's internal body temperature, recovery time and so forth. I have tested a few things and salt/sodium reduction can and does seem to lessen the swelling and speed up the recovery time - any degree of water retention, for someone affected by a condition that's in turn affected by heat and humidity, is going to fair better with a low salt, low sodium diet.
Not sure how sleep affects the condition other than you awake for less time to be bothered by the sight of the splotches!
Out of curiousity - when you rash fades away have you noticed white spots left behind - like they don't have pigment maybe? I still have some white splotches from the bought I had 3 years ago, and I've noticed that I'm getting them again from the patches I had 2 weeks ago. Also - for the first time, only one leg was affected with the rash.
I work in a factory and am quite active walking while on the job for 8 hours. I also get this rash (which starts above the ankle and has yet to move past my knees). I have the swelling in the rash area, which makes my legs look lumpy. It burns when it is "breaking out", then itches. Very uncomfortable.
My doctors (I've seen 2) have no idea, either. I'm female, aged 54, very fair skin, and of Irish descent.
I'd be willing to join any group, because I'm so glad (in a crazy way) that I'm not alone.
The blog will be posted and active by September 1st (have too much work-related stuff going on before) and there you'll be able to volunteer for an international survey; basic stuff, nothing personal, just who you are, where you live, daily life and when you get the rash and how it reacts for you. I'll post as much research as I can find, solicit support from recognized doctors and naturopaths and editorial... you'll be able to come here regular to post, complain, offer insight and maybe, just maybe we'll figure this annoying, affecting condition together!
The blog will be http://www.mysteryrash.blogspot.com
I have consulted the Travel Clinic at Johns Hopkins and was told by one of their doctors that she has never heard of a "Traveler's Rash" which is the name that was given to me by a cruise ship doctor. The cruise doc gave me a long name for it which I do not remember. He said it was very common among cruise passengers. That was back in 2006 and I was on a Baltic cruise. My rash had actually begun to break out after a air flight from Baltimore to Copenhagen and an evening of walking around Copenhagen. It continued to get worse on the cruise but then started to recede & was gone by the time the vacation was over - 14 days. That doctor attributed a change in diet as a major component of the rash. He said there was not any really effective medicine for it, it is not an allergic reaction to anything, to sleep with a pilow under my mattress, keep my feet up when possible, try to eat low salt - esp stay away from the ship's soup, & not to worry about it unless the rash spread above my legs (which it didn't). My rash has gotten progressively uglier each time I get it - although still below my knees. Also on my last trip overseas (July/August 2008) I became quite frightened because for the first time I developed considerable swelling in my ankles about 24 hours after the rash first appeared. I put on department style support hose for the rest of the vacation and the major swelling receded rather quickly but was the last symptom to totally disappear. I was in France and England but the weather was very hot & I was on my feet a lot.
My rheumatologist is looking into it because I am quite worried about an upcoming 2 week trip to South Africa which includes a 16 hour flight with a return18 hour flight. I'll post again if my doctoe is able to get any good info on this condition. I wasn't pleased with my dermatologist's lack of knowledge on this subject.
Great info Ava. I've been traveling SO much with work-related things that I have yet to get the blog up and running, however once I return from Hawaii on the 2nd tht's my first order of business.
At this writing I can tell you I experienced THE worst bout of the "condition" to-date yesterday; covers my entire legs, splotchy all over, angry, red, rash-like mess. It seriously looks like I should be quarantined! Thing is, your doctors can attribute it to all sorts of things, but the truth of the matter is they have NO idea what it is... I would advise against taking any sort of medication because I am strongly against the "lets try this" method of medicine.
Your leg swelling can in fact be reduced by eliminating you salt intake (keep in mind this condition is greatly affected by the heat & humidity combo) so less salt is always better. I swim an hour a day, either run 6-7 miles or bike 12-20 daily, so I can attest to the fact that lack of activity or weight as anything to do with this (by the way), and I also don't smoke, drink alcohol or caffeine, and have cut all daily from my diet - they mystery rash is definitely a genuine mystery.
I am looking into the relationship to vascular conditions and hormones; maybe there's something there? What about connections to hereditary conditions like diabetes, gout, leukemia...? I'll keep searching until we all know just what the heck we've been stuck with.
Do write and let us know what your rheumatologist has to say - always interesting to get the next "answer!"
I have a vascular consult on Tuesday. As coincidence would have it, I golf with a women who is an nurse at an outpatient surgery center. One of the outfits that uses the surgery center is a vasuclar speciality office. She asked one of the docs about what I was experiencing, and they told her to tell me to come in for a consult. They basically confirmed to her that what I read on the Internet about there not being much I could do about it besides cold compresses was right, but said it's good to get a consult to rule other possible contributing problems like a blockage of some sort.
The thing that really concerns me more than the "golfer's rash," is the unexplained swelling in my feet/ankles I've had twice in the past year. In both cases, it happened while traveling, but towards the end of the week and not immediately after the flight. In both cases I was in tropical areas, but it certainly wasn't any hotter than what I deal with on a annual basis here on the east coast during the summer.
I have this as well and would be happy to join in on any research. Like another person, I got this the first time 10 years ago at Disney World. I was only 35 then, although I was having very early signs of menopause (I am fully meopausal now at 45) if that could be a factor. I have had it almost every summer when we do vacation; we always walk extensively on vacation. I have also noticed it seems to be related to heat and to standing around in addition to walking. It starts out as covering the back side of my calves and looks red all over, but then settles in to what looks like an extensive case of broken capillaries. I have the worst case ever right now. It is very dark red and around on the sides of my calves. It appeared in the 90 degree heat when I was moving my daughter in at college and walking the campus. It itched initially and then burned some, especially in hot water as mentioned. Elevation of the legs definitely helps me. It is unsightly and being forced to wear pants in the summer is very frustrating. I am also an active, working, fit woman. I also do not get it from working out or biking....just distance walking and standing around.
The first time I got this highly annoying condition I was playing tennis (I was about 40), it was 90 degrees plus, California dry heat. I do not sweat and never have, so I became overheated and the red started around the sock line and continued part way up the calves here and there. It cleared up in a few days but was miserably unsightly and somewhat uncomfortable. I have gotten it since maybe a dozen times (I am 60), always when I am dehydrated and my body temperature is too high. I have started having water with me whenever possible and if I feel myself getting overheated, I immediately drink water. It seems to help. I got it a couple of weeks ago at an outside mall, hot dry 95 degree weather. My legs began to itch and before I could drink water the rash had appeared. It lasted a few days and has sort of hung around slightly with another bout a couple of days ago when I became overheated working around my home. I am convinced mine is related to not sweating and my body temperature. I have gotten it wearing jeans shopping in the cool weather as well, but not as much. I would love to get some answers or help to eliminate this condition. I am not a hiker or runner. I have fair skin.
Sorry to lag in my posts rash-gang, but I have been traveling so much with work I honestly didn't know which city I was in when I changed planes last week! Anyhoo, the issue of raised body temperature is a biggie with the condition; I've received a mass of wonderful email responses from medical writers and authorities and this deal, this rash of sorts, isn't limited to humid regions, nor is it just a summer fling - a person "who gets it" can be walking through the tundra of Antarctica and still get it - there is a definitive correlation to the amount of physical activity and a person's ability to coll down internally... it is not related to blood pressure nor is it a PAD condition either - so, now you know what it isn't so we're still on the hunt for what it IS.
If you would like to write to me directly with your condition history (you can leave your name and identity absent if you wish) I'm compiling data to submit to a research team here in Boston in hopes that they can apply for grants funds to find out just what the heck we've got. You can email me at;
Just fantastic to find this site. I have suffered from this condition for about 15 years and I fit the profile exactly. I am female, caucasion, fair-skinned, active and my mother had the same condition. I am a teacher and on my feet a lot but the rash only occurs when I am walking in very hot and humid weather. At the moment I am in Beijing and yesterday got the worst rash I have had, all up my legs and even a little on one arm! I had an ultrasound of my veins not long ago and the results showed no problem. It's very mystifying and it's great that you are going to try and push for more research. My mum suffered from a terrible case of leg ulcers in her later years because of diminished blood flow to her lower legs so I wonder if there is a connection there.
Glad to have found this site. I am female, 60 and from the UK. I have suffered from this rash for about 10 years. I am active, walk etc. Went through the whole thought that it was sun associated but ruled that out when I covered up and still got it, thought it was normal heat rash or maybe sweat rash but ruled those out too as the symptoms do not quite fit. Golfers vasculitis does, however, fit my symptoms. Unfortunately, it does not need to be either extremely hot or excessiovely humid for me to get it. A warmish day in a normal British summer and a long walk will do it. It usually appears in patches on the top of the calf and in an area above the socks. However in the past two years there has been a tendency for it to appear in small blotches on the tops of the legs too. It is sore at first and gets itchy as it fades in about 5 days. I tried cool baths to relieve the soreness but to no effect and counter intuitively I tried a hot bath. Strangely this, for me, is far more effective. It hurts like hell briefly and then the worst of the soreness and discomfort seems to abate. It still looks horrible though.
This year I went to Beijing then to Malaysia and back to Beijing.Thought I had cracked it as I wore a longish skirt as this was not a normal walking holiday. However, I survived in Beijing and Malaysia and then on return to Beijing developed it one evening after travelling around on the subway in a crowd and then sitting watching the athletics! For the first time in his life my husband 62, developed it as well! We are both quite fair skinned,although not the variety that burns easily and my husband tans very easily. The first time I had the rash was in Italy and it was hot and dry. I have never consulted a doctor as it cleared up on its own and
if I'd made an appointment it would probably have faded by the time I got to the surgery!
In keeping with not being able to find much of a pattern, I do sweat a lot and drink a ton on the golf course to stay hydrated. The bottom line is that there seems to be nothing I can do to prevent this condition if I walk 18 holes in high heat.
At my vascular consult, the PA suggested support socks. When he saw my reaction, he said, "Don't give me that look" and laughed. He wasn't suggesting I wear them on the golf course with shorts on.
I'll have the ultrasound on my legs in a couple weeks. My mom had horrible circulation problems and varicose veins, so it will be interesting if they find anything.
I, too, was in Beijing until yesterday. Walking all over the Paralympic venues on hot days brought on an ugly case of this condition...the worst I have ever had. My family members were concerned about me, but now that I am back home in airconditioning, my legs are almost back to normal. I wore trousers in that hot weather to prevent people staring at my ugly legs.
Any doctor who attempts a claim at knowing what it is we have is just fishing for an answer for you so take it for what its worth, save your money and insurance co-pay's and know that they just don't know yet - wearing support hose can really be a no-no especially if you're getting over heated for any reason or if you've been diagnosed with PAD (its what I've found but I'm not a doctor however). Janieann was great to email directly and give me all her stats; this is really a project of mine and with survey information like this we'll be able to get grant funding sometime in this decade hopefully. In the meantime, know that if you keep your internal body temperature as cool as possible (drink cold beverages while on the course or on long walks/hikes no just liquids) and take breaks if and when you can, this definitely helps. It also helps to soak your legs (or in my case, my entire body) in a cool bath, again, bringing your body temperature down to reduce the reddness and that angry, puffy rash like appearance.
Further thoughts about this. My mother had varicose veins. I have thread veins in the upper legs and on the backs of the knees.
I wondered whether there could be a medication taken in the past which has triggered a sensitivity. I had Septrin in my early twenties, to which I developed an allergy. I have heard that Septrin can trigger sun sensitivity, so who knows what other long term side effects there could be from some of the stuff we have taken over the years. Any research would have to look into that as well I suppose.
Strange to think that other people were wandering around Beijing as well as me with gross looking legs and all desperately hiding them under trousers or long skirts! I remarked to my husband that I never see any one else with legs like mine, it is clearly more of a problem than I realised.
I always wear long skirts or cropped pants in the summer to keep my legs cooler if possible. Sometimes is works and sometimes is does not. I still can only pin it down to the elevated body temperature. I think because I don't sweat maybe I don't realize how warm I am getting until the rash has appeared. It is a mystery, very aggrivating and ugly. I have gotten a patch on my thigh and forearm. When it appears on the arm, it us above my watch band, just like the sock line. It is so strange. I do not have veins, nor did my parents. I do not have poor circulation, nor did my parents. My family has quite fair skin. Does anyone have this that has darker/olive skin? I hate getting this ugly rash very much and know when I get it I will not be showing my legs for a few days. It is very inconvenient and annoying. I was just on the East Coast (90 degrees w/humidity) and went to several tourist attractions and did not have any rash. Help
I have been trying to determine what I have and how to avoid another episode before leaving on a 16 hour trip to South Africa tomorrrow. (See my post of August 22 - Ava).
I have not had much luck. I did have tests & see a vascular surgeon yesterday for varicose veins I have developed on my legs. For the vein problem she prescribed 20-30 knee high, toeless support hose to wear on the plane, whenever I am sitting for long periods unless the temperature is very high. (also as soon as any swelling develops). She is not sure whether the rash problem is a related issue but has asked me (along with other doctors) to fax her a picture the next time it happens. I am actually taking her fax number with me on vacation just in case! Ava
Sorry Ava that you're as distressed as you are about your upcoming travels, but if you're able to during your long flight, just be sure to get up and walk around a bit (everyone should do that anyway regardless of the rashy thing we have) and if it calms your mind to wear the support stockings than by all means give it a whirl. Some people have edema in their lower extremities more than other (its definitely not a weight issue either because I'm 5'8" and weigh 128 and get it all the time). Definitely take photos - do you have a camera in your cell phone? I took pics not too long ago and when I finally happened to be with my doctor she took a peak - hysterical her reaction! I still had it on my legs at the time but its was already fading and she was SO taken aback and this is a Harvard Med school grad - they just don't know what it is, they don't. You'll be fine I'm sure on your journey and just sort of let yourself be OK with the condition for now so that you don't add unneeded stress to you plans - its not life-threaten, just weird, ugly and annoying - we'll figure it out!
Have been getting this ugly rash off & on for 20 yrs. No MD could give me an answer. Finally found this site, so happy to put a name to my rash! As I get older, I am a 46 yr old mom of 3, the burn of the rash is becoming more painful. First starts out with a burning/tingling sensation, then red hive like rash appears, changes a deeper red, & spreads more over the calf area, never below the ankle area, then turns a blood red w/ broken capillary look to it. The rash area itself burns like He-- & leaves my legs feeling so tight & hard as if the skin could split opened. My feet now swell a little & feel so very tired & throb . The feet have good pulses & are not discolored in any way. What really concerns me now it that I get a fever at night on the 2nd day of having the rash. It lasts one night & is gone in the morning. Does anyone else get a fever from it? This rash ruins at least one entire day & night of every vacation!I have a twin sister who also gets "the Rash" & fever from it. I usually get a real bad case on vacation every year when we do a lot of walking & standing. Always in the warmer weather this happens .But as the years go on I find it pops out even if I am standing around/walking a short period of time in the heat. It also has spread up to my hips & my twin got it up onto her chest after a walking tour vacation over in Spain 3 yrs ago.It is extremely fustrating since I love to be walking & I love the warm/hot weather. It is becoming so painful that I have severly limited my summer activities & thus gained weight over the years because of it. I have tried ASA as well as benadryl, zyrtec before activities to no avail. It happens with pants or shorts on, lotion or none, socks or no socks, a recent leg shave or not so recent..... I hope some day soon some MD will find a reason & a preventitive treatment for this annoying ugly rash. Thank you all for the info posted. I am estatic I finally found a site such as this. Thoughts on if it could be possibly harmful to continue to walk for consecutive days with this? It is also now leaving a discoloration around my ankle area. Had it very badly exactly one month ago & my lower extremities still feel a bit tired & tight. I am healthy w no significant medical history. Does anyone else get a fever from this?
I too have this rash which recently climbed up over my knees after a 15-mile hike. I am an active 65 yr old, hike, climb etc. Always get the rash a little. Epson salts, cortisone creme very helpful. Skin is discoloring over time. Aging is a real pain "in the a.....". If anyone finds a solution, please post it. The men in my hiking club think I have a disease on my legs. Too funny!
No fever here, KG. But vasculitis is supposedly an immune response, so a fever doesn't surprise me.
I go in for my post-testing consult with the doctor on Tuesday. They did a pelvic unltrasound, leg ultrasound and checked out my aorta and iliac arteries looking for anything that might cause the unexplained swelling I've had in legs on two occasions in the past year.
I went to Disneyland in the evening, walked 3 miles in a charity event the next morning and then walked around a mall. I kept myself hydrated with water in hand, did not become overheated and escaped any sign of rash - I do not sweat - for me the key seems to be my body temperature.
I have experienced this problem for 10 years (male, 49) and nice to know many other people have the same problem and it is not symptomatic of a more serious problem.
I live in Thailand and it comes near the end of a golf round in hot weather.
It takes two weeks to heal properly so will recur more severly if I play golf within two weeks after the last case.
I believe it is somewhat genetic as I am also fair skinned and do not sweat much.
I also noticed that when it happens the skin in that area is hot to touch. Therefore I believe it is realted to poor sweat gland function in the area concerned. ie. a lack of sweat in that area increases the skin termperature.
For mew it first started around the ankles and now rarely happens there but mostly on my thighs. However, I did wear a new pair of tight fitting socks last week and it did happen after golf that day above the sock line. So probably, some sort of support would help alleviate the problem in the specific area.
I also noticed a number of years ago taking antihistamine pills before golf made it worse. It may have been related to the type of pill, but I avoid taking antihistamines within 6 hours of playing golf.
I will try a few different tratments and advise if I have any success.
I'm having right now the worse episode ever of this rash. I was so glad to read all your experiences. I'm 56, have a normal skin, not too fair, live six month a year in Thailand and the rest in Europe, and have this rash every time a walk an 18 hole golf course. It doesn't happen if, for any reasons, I walk only 9 holes. It first appeared in the '90s when I leaved in Jamaica, but it was very light and in four years I had it only once so I thought it was an allergic reaction to the grass o some insects peculiar to the place. I had it again now that I started to play golf and I joined my husband who's working here in Thailand. The weather is hot and very humid all the time, but I don't feel particularly hot when I walk on the course. As a matter of fact, the other day I felt it was pleasant and actually for half my walk I didn't have any problem. Then, all of a sudden, I felt the familiar feeling of swelling, hitching and compression and sure enough when I looked under my pants the rash was there.
It usually take 4 to 5 days to get rid of it, but this time I also had a little fever on the first night and I experienced and extreme and unusual fatigue. I was thinking if the thikness of the blood matters: I mean if the blood is thinner will flow more easily and then not produce the swelling that causes the rash, or I'm saying something totally nuts?
Certainly find a "something" that will if not prevent at least get rid quickly of the horrible redness, will be a real blessing.
I think it's safe to say it has nothing to do with sweat glands not working well...at least not in my case. I sweat a lot, including on my legs. The women I golf with who also have this problem don't sweat much at all.
For what it's worth, I was diagnosed with vascular insufficiency in my left leg. It was readily seen during the testing they did. The doctor said I could quite likely have it in my right leg too, but not to the same degree as in my left. He would not say, however, that this was the cause of the golfer's vasculitis. They just don't know.
As for the fevers some people have been having with it, after doing some reading it seems fevers aren't uncommon with other types of vasculitis. The explanations I read indicated that vasculitis is an autoimmune response...hence the fever in some cases.
On that note, if there are any doctors out there monitoring this board, I've recently learned that I have the PTPN22 gene which makes me susceptible to rheumatoid arthritis and apparently other autoimmune disorders. Perhaps there's a correlation with the golfer's vasculitis. Or maybe not.
Common comments from the blogs on golfer's vasculitis:
Common symptoms: the small capillaries break in patches in the skin and that the legs ache when or after it has happened.
It mainly appears on the skin near the muscles on the legs and is related to upright exercise in hot and particularly humid weather – and so being ‘christened’ as golfer’s vasculitis.
If you have fit socks it appears above the sock line but not below the sock line.
We also know that it does not seem to be related to other conditions as we have not heard consistently of our fellow suffers all saying that they have one particular other condition.
It could be that the capillaries which exchange fluids between the blood and the skin are not functioning well (for us) when this system is under pressure (from gravity and muscle use) and heat (from the outside temperature and muscle use).
(It does also seem to be affected by humidity. (When the air is humid the body’s cooling system from sweating is less efficient than in dry weather)).
It may be just that we have weak vein muscles which are used to push the blood back to the heart. As we get older all muscles become less efficient so it makes sense.
(However, it does not appear to be related to other conditions from weak vein muscles like DVT).
It is also possible that the blood or some other fluid under the skin is thickening during the hot weather upright prolonged exercise and I don’t know if this is normal during exercise. I do feel that my blood is thickening as after a golf round as I often get a a bit of a headache that evening. (However, it is not related to insufficient fluid intake).
I will try some ibuprofen, as it is does thin the blood, before or during the golf round and see if that helps. Thinning the blood may reduce the stress on those vein muscles and the function of the capillaries under the skin.
It may take a few months to test a few times to see if it really helps. (It is getting to the cool season in Thailand and I still have to recover from the current case of golfer’s vasculitis before I can start the test). If anyone else tries ibuprofen please advise the results.
Also as a note vasculitis is a general term for something affecting the blood vessels. As such, vasculitis covers multiple conditions all with differing causes so the reasons for golfer’s vasculitis maybe totally different from other forms of vasculitis. The symptoms may not be completely the same for everyone, but it does seem from the blogs that a large number of people have a number of identical symptoms.
So far the main benefit from some Aussies giving it a name is that we can find forums like this on the internet. It is already a great help to know that we are not alone and together we may find a solution.
Hi, yesterday I went for a round of golf (I'm in Thailand at the moment), and having just recovered from the previous week case of vasculitis, I thought of trying a new way of remedy: as often as I could (on every drinking stand) I bought those refreshing towels that here they keep in the refrigerator and put them on my lower legs for few minutes, just the time of a quick drink. Normally there are two stands every 9 holes, so I applyed the fresh towel four times in five hours and a half.
Apparently it worked: it helped to cool down the legs and it took me through the whole round without problem.
Now it will only be a matters of keep doing this and see if it still woks
You've successfully noted just about every mention and similarity with this condition here in your posts and that's greatly appreciated. I have been traveling for the past eight weeks or so, in hot and humid and now colder and drier climates - my results are interesting in that the "rash" stopped appearing, even after 8+ hours of either walking or a run completely until this week... I have found that even in cold weather (its 32 degrees today in Boston) with my jeans tucked into my boots all day, by evening, I actually have a touch of the "rash" at the ankles, which tells me its a temperature/circulatory thing for sure. Obviously my lower legs are much warmer and compressed than the rest of my body so those veins and capillaries are being affected... it is however important to me to note that living in a region of the country that experiences long periods of hot, ultra humid temperatures is reason enough to relocate before next summer - if I can heed off this condition by living in a drier climate I definitely will.
It is interesting that your experience in the last few weeks has in regards to the effects with temperature variations been the opposite than expected.
As I read your post, you mentioned that during your travels in a hot and humid climate you did not experience the rash even when walking/running for 8 hours.
Is that correct? As that is somewhat the opposite than expected. What were the temperatures in those areas. It does seem that a drop in temperatures below a certain high level e.g. 90F seems to alleviate the problem. I expect there is likely to be a line (combination) of temperature and humidity above which the rash is experienced in most sufferers of this condition. (More food for research)
So far from what most people have said particularly, you and Laura and from my own experience it does seem to be related to poor functioning of the bodies cooling system in the areas concerned which is exacerbated by heat and pressure.
Exactly, how that is happening, e.g. poor sweat gland operation of capillary operation (in exchanging nutrients and waste) in those areas is a challenge for the medical profession to resolve.
It would also be interesting hear more about your experiences and others in hot dry climates.
So far from what most people have said particularly, you and Laura and from my own experience it does seem to be related to poor functioning of the bodies cooling system in the areas concerned which is exacerbated by heat and pressure.
Exactly, how that is happening, e.g. poor sweat gland operation of capillary operation (in exchanging nutrients and waste) in those areas is a challenge for the medical profession to resolve.
It would also be interesting hear more about your experiences and others in hot dry climates.
I am pretty convinced as well it is related to body temperature. At least for me, since I do not sweat, I become overheated. I have been testing drinking cold water whenever walking and I am warm. I try to make sure my body temperature does not elevate and so far so good.
I have had this condition since I was 17 years old (I am now 54). No doctor has ever been able to do more than scratch their head or suggest and allergy.
I live in Southern CA. where I usually only have trouble when I do a long hike in warm weather, but I have biked from San Francisco to L.A. with no problems. When I have spent extended periods of time in Cuba, Atlanta, or New Orleans in the summer the problems NEVER subsided! I have also had problems skiing in cold weather but where my feet and legs were quite warm. It seems to have more to do with how hot my body gets than the air temperature.
My mother and grandmother have both had problems on warm weather cruises.
My "rash" always starts on the inside of my left calf, moves to my right calf and, in extreme cases (the month in Cuba where I was on my feet non-stop), has moved onto the tops of my thighs. Aspirin, if taken at the first sign, seems to help a bit. No matter how bad it gets, it always goes away even though I have sometimes felt that my leg would split open!
I have been swallowed by the work monster for so many months that I'm only now able to stop by, apologize for my absence and weigh in on the recent messages;
Its January in New England, presently being pelted with snow and ice, so for me, my daily six miles and once weekly 14 miler hasn't produced a "rash one. In October, November and December I was traveling in the mid West and Southwest and in those warmer climates got the condition ever so, so slightly that I wasn't even affected - it really only happened in Kansas City where the humidity was higher than usual.
I'm very happy to say by the time the hot and humid weather will be back in full force here in Boston I will have relocated to Southern California whereby I'll at least have drier temps to test the rash out on. As I've written in earlier posts, I lived in Arizona and California for years and never had a "rash" until coming to Boston five years ago.
As far as what temps the rash kicks in; for me, it seems to not be that so much, as the high temp coupled with humidity and long, long hours of walking or standing. Seems to be that with most people here too.
One more quick note I forgot to mention; I'm going off sugar this week as an attempt to strengthen my immune system which is destroyed by sugar consumption (my sugar intake is absurd really, and I've gotten away with it this long because I don't eat much of anything else except greens and fish). I did extensive research on my own about the immune system which when depleted causes a whole host of problems, one very well being the blasted "rash."
I'll let you know how it goes; I'm in for some serious withdrawal stuff (severe headaches, vomiting, depression, vertigo, fatigue) but after a week or so I should be 'clean" of my sugar addiction and maybe better my chances for no rash.
I had posted back on July 8, when this thread got started, and now found it again -- and wanted to thank everyone for their input and ideas.
Back then, I had a really bad case after a strenuous hot 10 mile hike as evidenced by my photo (http://picasaweb.google.com/gbfowler/TableMountain2008#5220348216808197730)
Since then, and it seems supported by reading some of the other comments, I'm more convinced that it is heat related and can be exacerbated by what happens to many of us as we age, our bodies are less able to control body temperature.
(I moved from SC to Oregon 10 years ago, one reason being I became less heat tolerant.)
Someone had mentioned that the felt it to be primarily from walking and not heart pumping exercises such as hiking and climbing -- which is not the case with me, and it is most likely to occur during a strenuous 10+ mile hike in hot weather. I had since climbed Mt. Adams (12,200 feet), and took a 50 mile hike/climb n the Olympic mountains, which are very strenuous. The rash occurred on to a small degree on Mt. Adams, but because I was on a glacier most of the time, I didn't over heat. On the first 10 mile hot hike of the Mt. Olympic climb, I began to overheat, but was able to stick my feet in the cold Hoh River to avoid a full outbreak.
I found that it helps to be more aware of overheating and to take precautions.
Also, I found the auto-immune question interesting (since I've been HIV+ for over 20 years), and this may also be a component which may factor in body temperature control).
I forgot to mention,
last August I convinced my Doc, her spouse (also a Doc), and a RN to take a strenuous 10 mile, 5000 foot climb of South Sister in Oregon. They were able to see first hand my "golfer's" vasculitis. (somehow I have trouble with that name).
Somehow, after 11 hours of huffing and puffing up a mountain, they weren't too impressed with my splotches. I guess, despite the horrible red splotches and pain, it's all relative ....
I am very convinced this annoying condition is related to body temperature and walking, not necessarily long or fast walking. I have also noticed tight fitting jeans, socks, etc. make it worse. I have tried a cold compress around my neck to cool my body down when I feel I am getting overheated and dehydrated. This has been successful. I do not sweat one drop ever. That is not a good thing I have discovered and I think it contributes to this condition. I try not to put myself in situations where I will become overheated. I have gotten it in the cool weather as well, but not as much or as severe. I'm sorry to tell some of you I live in California and have experienced it in all types of weather and we usually do not have humidity. I just had a physical (I am 60) and my legs checked out normal.
Well, I do agree with, and have stated a few times, I and researchers to believe this rash is directly related to the individuals ability to regulate theri own body temperature. I'm super active in all seasons (12 miles plus 6 days at least) and seem to only get this condition in the warmer, humid times of the year. Now that said, if I walk all over town like I will do in a couple of weeks in LA, I'll get the rash I'm sure of it. Not because its humid, but because I will have been walking for a number of hours and my body core temp will go up. Now, I'll also bike and do about 30 miles and I can promise you I won't get the rash - its also definitely a circulatory condition as well - when I run or bike, even in the hottest temps for very long distances, I won't get the rash because my blood is circulating better and there isn't any constant pressure on my lower extremities like there is with walking for long hours.
I haven't noticed tight clothing being an issue for me, I've gotten a raging case of the rash wearing sundresses.
Another point to think about; the immune system and our collective issues with this rash condition; I realized recently I have three of my brothers (and my late father as well) all with a history of gout (the fact that a person can still get gout in this society is astounding to me but that's for another post) and their doctors told them its due to a host of dietary problems but the #1 thing that resonated with me is that the doctors also said they each have "a weakened auto immune system" and that amplifies the symptoms of gout and other vascular and circulatory illnesses and conditions....
As I mentioned previously, I tested positive for the PTPN22 gene which apparently makes me susceptible to autoimmune disorders by negatively affecting T-cell activation. My sister came down with an autoimmune disorder in her 40s that usually strikes people in their 60s and 70s, so my family may have already seen gene's effect manifest itself.
To clarify something, though, this gene I have may only have impact in my specific ethnic group...Northern European. I'm 100% European based on DNA testing, and my genealogy research has shown nothing to contradict this. I'm probably 50% German, 49% English, and 1% European Mongrel.
Really interesting about the genealogy and the condition... I'm Irish, German and English as well - maybe I ought to request a test for the PTPN22 gene to see what's what... I have a PCP that just look sat me like I continue to lose my mind whenever I ask her to do something out of her day-to-day write scripts and be done with it mode.
Finally! I'm not a freak!
Sorry you're all experiencing this too but boy am I ever glad it's not just me!
It started as a very small patch of red just above my ankle socks at the back of my calves after golfing on a very hot day about 4 years ago. I was 50. Thought it was from chemicals on the grass. Then three years ago, after walking all day in Las Vegas... this same rash appeared but this time half way up my shins and calves. Burning and itching! That same summer it happened again but it was after laying out poolside... extremely bad after two days I kept my appt to have my legs waxed. Warning... DO NOT get your legs waxed when this condition appears! I know... DUH??!! Ended up going to emerg because they were neon and really on fire! Same reaction from the doctors...they didn't know what it was. Heat rash, maybe.
The only thing I could do was rub ice cubes on my legs. Well, after reading all this, I can relax a bit if it happens again, I won't be so freaked out. Thanks for sharing.
Spent a week in LA on business and in keeping with my usual fashion I chose to walk as much as possible and take the Gold Line railway (Pasadena to downtown). The weather was fantastic (80 degrees compared to Boston's 15) but I discovered something of interest; I wasn't worn out, was pounding the pavement a bunch, and it wasn't at all humid but... I got the "rash" alittle and I realize it was because my jeans were tucked into my boots the whole time - I created my own poor circulatory system hot house... there's something supremely important about blood circulation and this wacky condition.
Having had all the testing, I know I have venous insufficiency in the left leg. The doctor said it wasn't detected in the right, but it may just not be bad enough to detect.
There's really nothing to be done as long as it isn't too severe (which it's not), but I was told I should wear support socks. (Like I'm going to to do THAT when the weather is hot and I'm in shorts!) I have been wearing them during the winter while hiking and what-not, and I have to admit, my legs feel better.
So bottom line, I have two known medical things going on that could be contributing....venous insufficiency and that auto-immune gene.
Just returned from a trip to Key West and did lots of walking. I didn't notice the rash while I was there but I sure saw it when I got home. I was covered from ankle to knee on both legs. I thought at first it was from the sun but as it was really cool down there I only had my legs exposed to the sun for part of one day. I was glad to find this forum as I was really perplexed. My rash didn't seem to itch or burn. Just looked bad. But now that its fading I have a different problem. I would like to know if anyone else has experienced this. My legs look like plastic. The skin is very smooth and tight and shiny. I don't think they are swollen. I have pressed on them and I don't see an indentation but the skin does feel tight. Any ideas?
The tight, "plastic looking" appearance of your skin is just the affect of the teeny blood vessels being expanded and the swelling from this condition; nothing to worry about, its just one of the many aspects of this perplexing and super annoying thing we all get. You can always lay really cool (not ice because sometimes that can sting) towel on the rash, keep your feet up, take some Advil and wait for it to recede - it will recede so don't stress about it. It is some type of auto immune, vascular condition that researchers and doctors don't know enough about yet, but so far don't seem to be painful (some people experience burning but its not all that common) - you must have, at some point, either walked a great deal, we on your feet for a long time, or had your feet/ankles/legs bound (as in socks and boots or tights).
Like I say, read all the posts here because there is alot of info, but you'll find we are still looking for a research trail that will take the condition seriously and until people start to die from it, researchers don't have a great of motivation to find out more (sorry, but true).
The Advil works wonders and you'll see the rash recede in as little as three or four days.
I am a 51 year old male of Dutch/Irish/German descent. My job as a Control-System Software Maintenance Engineer of large Meshwelding machines takes me on long flights all over the world to steel factories where the heat & humidity are more suited to Lucifer and his minions than us mere mortals! There's nothing quite like an 18-hour plane-ride followed by 8 hours of standing and working on a meshwelder in a steel factory to bring on the Rash! - No Exercise Necessary!
I believe a long period of sitting in a cool high-altitude low-pressure environment followed by another long period standing/walking in a hot-humid environment creates the best possible trigger-conditions for this disease. - hence the large number of people suffering after flying - The "Disney-Rash" Effect!
I did some deep data-mining of the medical journals to see if I could find the earliest reference to this condition and was surprised to find the following research published in the British Journal of Dermatology:-
What amazes me is that this condition was well known, and was being researched and documented (in Europe anyway) way back in 1995!
This study was undertaken in the Netherlands on a sample of 58 volunteers who had just completed an 80km walk - and 41 of them were found to have it! - a good case for a genetic link to those parts, or what?
I do agree that names like "Disney-Rash" and "Golfer's Vasculitis" are probably helping to prevent this condition getting the research-attention is deserves, so let's all practise saying "Exercise Induced Leucocytoclastic Vasculitis" and lay it on any professional who starts hemming and hawing!
Cheers to the suggestion of dropping the Disney and Golfer's reference to the rashing out condition; I agree it trivializes the situation and has US researchers scoffing at the idea that being covered in a bright red, purple blood-filled rash all over ones legs, cheat and for some face, is just "the heat getting to you" and doesn't demand medical community attention. The stinging and tightness some feel is quite uncomfortable of course, and the rash itself absolutely unsightly, but for me, I'd like to know someone appreciates the condition as a legitimate, vascular disorder and is willing to invest in its causes and remedies.
Your references to your work conditions and the long flight times is humorously written, but also a concern I would think... anyway to cut down on the flying time or at least give yourself a day in ahead so you can get your core temperature back to a normal point therefore maybe reducing the rash a bit? I think if you're having to stand for long periods in hot, humid environments you are going to be bothered with this rash for the duration of your employment poor Sir!
I appreciate the UK link and I think if we could tie in current European research with all our own blogging and personal accounts, the health writers at the NYTimes would be quite interested in this as a piece - especially with summer not far away.
Thanks for that reference http://dare.ubn.kun.nl/bitstream/2066/24245/1/24245.PDF. The conclusions of what may be happening at the capillary level do fit with my expectations (as per my post of Nov 12 above).
It does appear to be genetic and I expect that a geneticist would same we all have a common ancestor which had this mutation of a particular gene.
Anyway, the cause is one thing of interest but more useful is what to do to:
(1) Avoid the condition, and
(2) To recover from it and minimise the after effects, and
(3) What not to do to aggravate the condition.
In regards to (1), avoiding the condition occurring; from reading all the posts, I can identify a number of ways that may avoid the condition but there does not appear to be any one treatment that can be used in all activities and environments.
(1a) Using cold towels to reduce the heat on the areas of the skin known to be susceptible to the rash.
(1b) Taking a low dose of ibuprofen or aspirin to thin the blood.
(1c) Wearing support socks.
(1d) Avoid tucking your pants into your shoes or wearing tight short socks.
More testing needs to be done by the blog participants so that we can understand more about each of the above. E.g. if ibuprofen or aspirin is taken - how much, how often and what time in relation to the exercise which brings on the condition.
One thing each of us does know is during what activities and daily temperatures we are pretty sure to come home with this rash, so working out a testing regime should not be difficult.
In regards to (2): CC points out that taking some ibuprofen and putting you legs up helps to recover. Possibly, applying some steroid cream to the affected areas may also help.
In regards to (3): Don’t have a hot shower. That makes it worse. Try to avoid similar exercise until the areas of skin affected are fully healed. Oh yeah, also don’t get ur legs waxed! How could I forget dear Pinky?
Hopefully, some participants can add to or improve on the list.
I am 45 years old and have been dealing with this for at least 20 years. I went to a different dermatologist about 5 years ago and he put me on the generic version of Plaquenil which I take for about 6 months out of the year. It really seems to lessen the frequency and severity of the problem. He has retired and I just saw his son who took over his business and gave him the new info about "Golfer's Vasculitis" He said he had never heard of it, and doubted that Plaquenil would work, but I took him his father had prescribed it for me and I swear it makes a difference, so he wrote me up a new prescription. Has anyone else had any luck with Plaquenil (or the generic)? Like everyone else, I am so happy to have found I am not the only one with this!!
Welcome to the board. I had to look up Plaquenil as I'd never heard of it.
"Plaquenil is considered an older disease-modifying anti-rheumatic drug or DMARD. Plaquenil is actually in a class of medications called anti-malarials but it is also used to treat rheumatic and autoimmune conditions which are unrelated to malaria."
I guess if our condition is a form a vasculitis and vasculitis is an auto-immune response, then it would make sense that it might help.
I get this rash on my lower legs ONLY when I play on one particular golf course in Bangkok and it appears when I'm on the 14th hole. It is very hot and humid but I play at other courses in the same conditions with no rash. I also play 6 sets of tennis in this weather with no repercussions. If I cover the rash right after playing with Betadine and antibiotic cream it is gone by the next day. Today I showered afterward and applied nothing and in 6 hours it was purple red so I just bathed in Betadine again. For me it HAS to be chemically related. The caddies at the course say that it is due to fertilizer and they have seen it often. I'm 60, female, in excellent health. No one in my family has this happen. And it only happens at this one course!
I've already gotten the rash twice this golf season both times on days when the temperature was only in the 70s. The difference being on both these days I played more than 18 holes. The first time, I walked 36 holes and ended up with the "normal" rash that went away in a couple of days, and then yesterday things took another turn. I walked 27 holes and then rode the last nine. I not only got the "normal" sunburn-looking rash I usually get, but I also got this time and for the first time, the horrid blood-red rash some of you have reported. It's only on my right leg and is on the front of the leg. It's really hideous looking. : (
So now I know this just isn't a high temperature thing with me. If I walk enough in lower temperatures, I'll also get it.
I was just researching this topic for a friend and came across your site. I also have experienced this, but only once. I was in the Czech Republic and went on a 7 mile hike down a mountain in hot weather. (I was 50 years old at the time). Five days later, the rash was fading on one leg, but not so much on the other. I went for a massage. The massage therapist indicated he had seen this before (however, he spoke Czech and German and minimal English, and I spoke English and some German). However, the day after the massage, the rash was virtually gone in both legs. I have often wondered if anyone else has tried massage for this. Anyone know of any medical contraindication?
I have always suspected that this MYSTERY RASH is caused more by the SUN than by the heat, because I only get it on the parts of my legs that are exposed to the sun, i.e., from the top of the sock line up to the bottom of my shorts. Any comments?________
Also, I have noticed in recent years that, once I get a suntan on my legs, that the rash does not appear any longer for the rest of the summer. Has anyone else had this experience?____________
I am thrilled to find this site! I have had this rash pop up around my ankles every time I go for a long walk/hike for the past two years. It doesn't matter if it's hot or cold out. First I thought it was because of wearing wool blend socks, but today, after a 13 miler with a full backpack on, not only was it around my ankles, it showed up on the tops of my feet, and on my back and hips. The temperature was 50 degrees. It usually takes days for the rash on my ankles to go away. I am going to try the antihistamin cream and cool compresses and see if they help. I have been having a ton of night sweats (I'm 50) so I am wondering if hormones is also playing a part in it. I'm training to hike the Oregon section of the Pacific Crest Trail in August and I'm dreading having to deal with this rash on the trail and hiking 15 mile days for three weeks. Based on the comments above, it sounds like keeping the body temperature down may help. I'm usually the one who heats up quickly, has warm hands, and changes into shorts and t-shirt quicker than my hiking buddies. I don't get this rash when I mtn bike or ski, so it must have something to do with the blood pooling while hiking (I'm guessing here).
Not having posted in quite sometime, I interested to see that this condition is still being referred to as the "Golfer's Rash" - infuriates me! There is no way we can get researchers to consider this a legitimate medical issue if sufferers trivialize the condition in this fashion - let's all coin the phrase "vascular rash" if you please, so that we can make some sort of serious headway in approaching the medical profession for attention to the matter (I write this because I had a research contact me directly after reading all the posts here).
For anyone fairly new here, take the time to read all the comments from the past year; there is a TON of information from a number of contributors and I'm certain these comments will answer the majority of your questions. If you'd like to reach me directly for specifics regarding the research, successful treatments, etc., please feel free to do so.
"Exercise-induced purpura (EIP) occurs on the lower legs after unusual or major muscular activity, as in marathon runners or as after long walks, especially in the mountains in hot weather. In leisure walkers, patients are otherwise healthy females. There is no relation with chronic venous disorder. Erythematous, urticarial or purpuric plaques arise on the lower leg, usually sparing the skin compressed by socks. Symptoms include itch, pain and a burning sensation. Histopathology demonstrates leukocytoclastic vasculitis. The lesions fade after some days, with frequent relapses at further muscular exercises and may be prevented in some cases by compression, intake of venoactive drugs and local application of steroids. EIP is not uncommon, even if very few descriptions have yet been published. It appears to be consecutive to venous stasis induced by an acute failure of the muscle pump of the calf and thermoregulation decompensation, after a prolonged and unusual exercise, such as running or walking in hot weather."
Background Usually misdiagnosed and ignored in the literature, exercise-induced vasculitis (EIV) is not uncommon, occurring mostly in long-distance runners and in females after long walks, especially in hot weather. Observations I report 23 otherwise healthy patients (22 females, 1 male) who developed EIV after walking or hiking in hot weather. Erythematous, urticarial or purpuric plaques arose on the lower legs, not involving skin compressed by socks. Symptoms included itch, pain, and burning sensation. Lesions resolved after some days. Relapses were frequent at further muscular exercise, and could be prevented in some cases by compression hosiery, manual lymphatic drainage, intake of oedema protective agents, or steroids (local or systemic). Investigations Histopathology demonstrated leucocytoclastic vasculitis in five biopsies, and urticarial vasculitis in one. Extensive blood investigations have been performed in six patients and were negative. No clear relation with chronic venous disease (duplex or Doppler) had been established in 12 patients. Conclusions I suggest denominating this condition exercise-induced vasculitis. This clinical entity is well defined, but poorly recognized. The presentation of 23 original cases demonstrates its reality.
Thank you for the research postings. Your second reference lists manual lymphatic drainage. A quick google reveals this is apparently a specialized therapeutic massage technique. You have answered my question, and I thank you.
Thank you both, janieann & cc101, and everyone else, for your research and input.
I am new to this group. My first post was yesterday. FYI, I am a 62 yr old male golfer / backpacker from Memphis, TN who has this condition. I just thought I would mention that I am male, for what it's worth, since it seems to affect mostly females. Also, for what it's worth, I am rather fair-complected.
Question (for anyone who might have an opinion): once the rash appears on my legs, is it advisable to stay out of the sun until it disappears? I would think that maybe it would be advisable to stay out of the sun, since it is so red, and looks so vulnerable, but there are times when I just can't do that! For example, I am going on a 10 day golf vacation to Hot Springs Village, Arkansas in June / July. If I play while the rash is active, do you think I would I be putting myself at a higher risk for some kind of severe sun burn, or sun poisoning, or something? But I can't just not play. I mean, come on, we are not just talking life or death here, we are talking golf!!!
To dustydeva, I wish you well on your PCT hike. I have climbed Mt Hood, Mt Adams, and Mt Rainier, all three. Of all the mountains from New York to California, Mt Rainier is King! I love it out there.
The only ill effects I've experienced from ongoing exposure is that the rash hangs around longer. I've never stopped golfing because of it, although I do try to be more vigilant about putting sunblock on it. I don't know that sun exposure would make it any worse since I don't think it's a root cause, but I sure wouldn't want a sunburn on top of it!
I'll tell you what I would do if I had the option at my course...I'd go soak my legs in a pool as soon as I was done just to cool them down. As it is, my new course has no pool, so I just make do letting some cold water run over them in the shower. That is something I've not been doing in the past couple weeks, and I need to start again. I'm just shocked I'm having this problem in 70 degree weather now. However, I have been walking 18 holes at least four to five times a week, so maybe the higher frequency is causing issues.
Thanks for the suggestions, Jane. Maybe on hot days I'll try putting ice water on a towel, and rubbing my legs from time to time during the round. Hey, you know, that is do-able! I have a 3 wheel push cart, and a large golf bag, so I can carry 2 insulated jugs, or more, of ice water with no problem. I'll report back.
Also, I am picking up a prescription today for some kind of compound ointment / lotion. It includes cortizone. I do not have a lot of confidence that it will do much good, but I guess it won't hurt to try it. The next time I play golf, and the rash reappears, I will try it, and let you know the results. It may be a while--the forecast is for rather cool, cloudy, rainy weather for the next 10 days here in Memphis.
Thanks. I'll be very interested to hear how it goes. I have the same configuration as you do, but unfortunately rarely would get a chance at all to sit down and apply ice during a round. I should start doing it the end of the round, though.
I have also had this problem. The last time I had it was like a year and a half ago when I had just arrived in Auckland, the next day after a 14 hour flight I walked during hours around the city.
My legs even got swollen that time. It took about a week for the redness to go away completely.
What I found that works for me using sandals when going for my walks instead of trainers (I have to use specially comfortable ones) and not wearing pants, but skirts or shorts. Anything that covers my legs or makes my feet very hot, will trigger the redness when walking for a long time.
Don´t know if it will work for anyone else, but you may want to give it a try! Let me know if "my discovery" helps someone out there.
Seems the condition can and does worsen over time; with the leaking of the blood so close to the skin surface (that the blotchy red/purple mess we all get) that with time (i.e., age) the vessels do not reduce (lack of elasticity in the skin) so with each bout, the condition can "spread" for lack of a better term. This season so far I now have the dreaded condition on my upper thighs, lower belly and cheat too - the cortizone cream, cool bath or shower and liquid Advil helps a great deal to reduce and feel better.
Moving to the dry Tucson desert in three weeks so I'm hopeful leaving the New England humidity will be a big stride in the reduction of the purple splotch!
For what it is worth, I read an article today about the problems that can result from lack of sufficient amounts of Vitamin B12, one of which is vascular problems.
I also learned over the weekend that, as we get older, our bodies tend to not absorb Vitamin B12 as well, which can cause a whole host of problems. So, just taking a B12 supplement may not work for some people. Some people have to take B12 shots in order to get it properly into their systems.
The above may or may not help us with our rashes, but just thought I would pass it along for everyone's consideration.
Also, I took Jane's advice after I played golf last Friday, and got the rash--same as always, starting just below the sock line, and creeping up to the knee--and I put ice water on a towel and rubbed my legs with it to cool them down after the round, and it did seem to help somewhat. The rash was pretty much gone in 24 hours.
Since it would be too time consuming to constantly be stopping and rubbing my legs down with a cold towel during the round, I was thinking I might try carring a little spray bottle with ice water in it, inside a cooler to keep it cold, and just pull it out between holes on hot days and give my legs a little squirt. I don't know if it will work or not--it might get my shoes and socks all wet. I don't want to be walking all day in wet shoes and socks. I will report back.
I keep reading all of the new entries and remain convinced that what triggers this ugliness is becoming overheated/body temperature. It doesn't seem to matter how hot or cold, how humid or dry, it can develop walking, shopping, standing, etc. The person who suggested spritzing her legs with ice water would be just as well off to spritz the back of her neck, arms or whatever will cool her body temperature. It seems to come out on the legs far worse than anywhere, but the core problem seems to be heat, at least for me. Someone mentioned wearing pants and sneakers made it worse - I agree. The heat seems to get trapped inside and the body temperature rises.
The spritzing is a great idea, Pilgrim! I'm going to try to find what will be the perfect spray bottle to carry in my bag. It has to be not too big, but with a wide enough opening to get ice in it on the turn. Thanks for the suggestion.
Yeah, Jane, Rockstarjill seems to think it is a waste of time, but I figure since nothing else works, what the heck, it is worth a try.
I have a "cool pack" that attaches to my golf cart. You can probably get one for yours. It is insulated and comes with one of those small "blue ice" packets. So a small spray bottle will fit in it easily. Then too, also, I have 2 insulated water jugs, filled with ice and water, that fit in my golf bag. So, when the spray bottle is empty, I can just fill it up with ice water from one of the jugs.
But then again, Rockstarjill could be right. It may all be a waste of time. We'll see.
I think the cold water is the key - It just seems for me I can cool down my neck with more success and then your socks wouldn't be wet...try whatever works...I think the cold water is a great idea wherever you spray it!!! Not a waste of time at all...good luck.
I'm happy to report that putting cold water on my legs during the round of golf really appears to be helping! I've been walking all week with minimal problems. We have iced water coolers every few holes, and just letting some pour down my legs seems to be doing the trick. I wear golf sandals, so getting my socks wet isn't an issue, but I think a spray/spritzing bottle with ice water would be a little neater.
Yeah, Janieann, I was just about to post a comment that I think the ice water may be helping me too! I hope we are on to something here, but not for sure yet, as it has not gotten really hot yet here in Memphis--just warm. Also, I put some prescription cortizone cream on my legs yesterday before I played, so, that may have helped too. I will try it with and without the cortizone cream and report back.
By the way, I tried the spray bottle, but the water does not seem to be cold enough. I think it needs ice in it. So I am abandoning that idea. As I was saying earlier, I carry 2 one-quart insulated Igloo water jugs. In between holes, I can sit down, stretch my legs out, and slowly pour, so that it does not all run into my golf shoes. But I do want it to run down into my socks a little to keep my socks cold, as the rash always starts just below the sock line.
For anyone who wants to try it, and does not have a really good insulated water jug, you can go to www.igloo-store.com. Click on the "Beverage" tab. At the "Personal Beverage" section, click "View All." Scroll down to the one that is black and white. It is called the "Igloo 1 Quart Fusion MaxCold." The item number is Fusion MC 1 Qt. The cost is $7.99 each. If it does not help your rash, you are not out much money, and besides, you will still have a really nice water jug for drinking.
I read and read and read and the posts about doing anything topical just don't make any sense (albeit I agree it can at least make the sufferer feel like they are doing something) however all reports and what marginal data there is, points specifically to INTERNAL BODY CORE TEMP being the reason for the "rash." If icing down helps, try icing down your internal system versus the location of the rash itself... liquid Advil will help drop your temp and cold compresses to the back of the neck and belly (doctor taught me this while I'm training for marathon) works amazingly well.
Also, most individuals with this condition also have edema (whether they know it or now) which can aggravate the problem too.
Putting cold water towels on my neck is something I've done in the past just for general cooling purposes on the course, and it's not helped prevent the rash. Maybe it will help others, but it seems applying ice cold water right to the lower legs is the trick for me. Since this condition is essentially just inflammation of the blood vessels, it would make sense that would help.
Thanks for the tip on the cooler, Pilgrim. I see that True Value carries them online for only $5.49, so I'm going to see if they might have them stocked in the local store.
i have had this for years seen docs several times a dermatoligist told me i must of cut my self while shaving i have givin up on the quacks lol i am a maillady in wis i m still recovering from this weeks bout of this its horrible i could feel my legs break out as i was walking did i mention i do it for a living walk just my luck i hope we come up with something to cure this problem
I've had this condition for over 5 years now (long distance walking in SW summers, temps. over 100) and it took me that long to find this site! I love the new article on Golfer's Vasculitis ~ even if it is a stupid name! Has anyone tried to reduce internal body core temp. by using products such as cooling bandannas? http://www.bodycooler.com/cooling-golf-products.htm ... One thing I have tried is carrying around those little foil-sealed wipes and wiping down my calves about once every 45 minutes or so... I'm not sure if it's helping or not. Just got a really bad case last night, but I didn't use the wipes until it was too late! I have also found that zinc cream seems to help healing after an incident. I would love to hear more about tricks for preventing this! I think keeping the skin cool is very important. For me, it seems that I'm not sweating enough in the areas affected (calves). If anyone knows a good blog/discussion forum for this topic, please post! BTW, German heritage, very pale, history of vein issues in family...
I am cautiously optimistic that I may have found the secret. I say cautiously, because it was only about 87 degrees yesterday. Will see what happens when it gets really hot.
I applied Mometasone / Cetaphil Cream right before going to the golf course yesterday. My dermatologist prescribed it over a month ago, but I have only used it after golf, not before. It is a compound that the pharmacist mixes up. My copay was $50.00.
I did not fool with pouring ice water on the legs. It appears that cc101 and rockstarjill may be right about the ice water on the legs not helping that much. I think it may have helped somewhat, but still no cure, but...
...but no rash at all yesterday after using the Cream! We'll see if it continues to work when it gets really hot.
To get more info on this Cream, I tried a search at WebMD for mometasone, but they only show it in an inhaler form as a treatment for asthma type conditions. There was also the risk of various side effects with use of the inhaler. But I wanted info on the cream. I called my pharmacist, and found that the name brand is "Elocon cream." I did a Google search for "Elocon cream." The first website that came up was www.netdoctor.com. It is in the United Kingdom. The website has some helpful info. The active ingredient is mometazone furoate. I quote: "Mometazone is a corticosteroid--used for reducing inflammation. Inflammation of the skin happens due to irritation of the skin, and is caused by the release of various substances that are important in the immune system. These substances cause blood vessels to widen, resulting in the irritated area becomming red, swollen, itchy, and painful! (Sound familiar? I got excited when I read this!) When mometazone is applied to the skin it works by acting inside the skin cells to decrease the release of these inflammatory substances. This reduces swelling, redness, and itch." I also found on another website--www.drugs.com--that little, if any, is absorbed into the blood stream. That was good to know, as I don't want a bunch of steroids in my blood. There was also at drugs.com a list of possible side effects, but the risk looked remote to me.
Here is some additional info on mometasone / cetaphil cream. "The active ingredient (mometasone) is formulated in a moisturising base that provides a layer of oil on the surface of the skin, helping to prevent water from evaporating from the skin surface. This helps to reduce the dryness, scaling, and itching of these skin conditions."
Perhaps this would go along with what we have been saying for quite some time about overheating. If the rash is the result of overheating, then preventing water from evaporating from the skin might be helping to keep the skin cooler. I am just guessing.
Also, I found a WARNING! "If Corticosteroids are used long-term, on large areas of skin,...they are absorbed into the body more. This increases the risk of local side effects...For this reason, continuous, long-term use of this medicine should be avoided wherever possible, particularly in children and on large areas of skin." Maybe we would be okay here, as none of us are children, and applying it only to the ankles, or possibly the calves, may not qualify as "large areas of skin." At any rate, it sounds like it should be used as sparingly as possible.
Hi folks ~ I just sent a note to one of the authors of the 2005 journal article that coined the phrase "Golfer's Vasculitis (http://www.find-health-articles.com/rec_pub_15670170-golfer-s-vasculitis.htm) asking him if there were any follow-up studies being done that could help us. : ) Worth a shot!