"Golfer's Vasculitis" is more than just annoying - Dermatology

Florag

Feb 15, 2010

To: Everyone

I was so pleased to find this website as it has been so difficult to get a diagnosis for this condition. However, a visit to a dermatologist today confirmed Golfer's Vasculitis. I am a 68 year old female and had the first of my 2 episodes of this rash 2 years ago when I was on a cruise ship in the Baltic. It occurred on the second day when I had not done much walking but had sat in a train and a bus for several hours. However, I had stood for several hours on the previous day in the ship's laundromat.What is odd is that my second episode also occurred on a cruise ship last April when I walked in Dubai ( we were lost!!) for around 4.5 hours on a very hot day. Interestingly the ship's doctor diagnosed it as Schamberg's Disease and said he had seen about 12 cases of it in the past. If you read the info. online about Schamberg's the description is the same.
We have very hot, and often humid summers here in Melbourne, Australia and I walk for about 5kms almost every day though I avoid the hot part of the day and I have never had an episode here. I am a Scottish dancer and have danced when the temp. has been 40 on many occasions though not for such an extended period of time, so,for me, heat is definitely a trigger but the time factor seems to be vital. Weight is not an issue as I am slightly less than average weight for my height.
I am a fair skinned Scot and so many people have commented that they are of a similar background that there is obviously a link here. What I would really like to know is if there is a link with this condition and DVT as I have reservations now about the long haul 24 hr. flights to Europe from Australia.

janieann

Feb 16, 2010

To: Florag

Hello Florag,

Based on my readings, there has been no correlation found between Golfer's Vasculitis and DVT, but I seriously doubt enough research has been done on it to actually find a correlation.

I can tell you that the Full Genome Sequence DNA testing I had done revealed that I have genetic mutations giving me two and half times the likelihood of having a Venous Thromboembolism (VTE) in my lifetime versus other women of European ancestry. So I have something going in this area, but whether or not is has anything to do with my Golfer's Vasculitis, I have no clue.

I keep hoping someone else who suffers from GV will be tested so we can compare our results in this area to see if there's any commonality. I think because GV is a rather benign condition, no one else is going to do the research besides us.

Jane
Maryland, USA

grannanaof2

Jul 01, 2010

To: florag

I have had these symptoms on my legs for about 15 years. The symptoms began after I was diagnosed with lupus (SLE). The most recent occurance was when we were hiking in Utah and then walking all day in Las Vegas. My legs had the ugly red rash below the knees until Vegas, and after a day of walking there, the rash spread for the first time above the knees. The sypmtoms mostly occur after I have been standing for a long period of time in hot temperatures. The raised red rash goes away after a week or so. It feels like my skin is burning but isn't a sunburn. I have fair skin. The only thing I have found to relieve the burning is to use cool compresses on the area.

Sherry
Alabama, USA

terryw1

Aug 14, 2010

To: Everyone

I have read through the many comments and whilst there are many interesting comments I will consider only what is common to be part of the condition as it is likely that uncommon conditions have other causes which may be overlapping with this condition.

The Golfers Vasculitis is a purpuric rash caused by the breaking of the capillary cell walls under the skin due to heat and pressure.   It is associated with a slight swelling of the rash and pain from the pooling of blood/fluids in the legs, particularly above the ankles.   It is not itchy.  It is not life threatening.

Causes:
Lengthy walking in hot and humid weather. It happens when walking and not running.  Why?   Probably the higher blood flow through the legs caused running action prevents the blood pooling effect.

Whilst not exclusive, there does seem to be a genetic element as many sufferers are from fair skinned with British/northern European ancestry.

Treatments:
So far no preventative treatments have been found by the forum participants.  Relief and reduction in the symptoms is possible with applying cool water/fluid/packs applied to the areas with the rash and possibly drinking cold water frequently during the exercise.

Clearly, once the rash has occurred it will recur more quickly if similar exercise before the area is fully healed.

Read the reference http://dare.ubn.kun.nl/bitstream/2066/24245/1/24245.PDF for a better medical explanation of what is going on.

If anyone finds any successful treatments please post them as they will benefit a lot of people worried and inconvenienced by this condition.

philk

Aug 16, 2010

To: general

I have been playing golf and have had four incidents of this. I walk the golf course and I am 64 and mostly Irish and German heritage. It is in a hot humid climate in the midwest so the reasons for the disease seem similar to what I have read. My PA in the dermatology office today without seeing it diagnosed the problem and said I should look up golfer's vasculitis. He said there is no cure but I am posting what has helped rid it for me without quitting the golf. The last two times I got it I immediately took 800 mgs of ibuprofen after golf and 400 at bedtime. (I am male 170 lbs). I also, wore long pants for one day the first time when it was more widespread in the calf area only. The entire redness went away within two days. The second time I did the second treatment and it was almost gone in the morning and I took more ibuprofen in the morning and played golf without wearing the long pants. It was gone that evening on the second day. I do cover my calf heavily with sunblock spf 60.

If this thing has any element of inflamation (inflammation) in it, the ibuprofen is helping that part of it. Remember ibuprofen is not for people with bad stomachs and the dosage I mention 800 is prescription strength Motrin and is over the recommended single dosage of 400 in the over the counter dosage sold in 200 mg tablets. Recommended daily maximum is 1200 but prescription strength dosages exceed this and obviously if you have not taken ibuprofen, you need to consult your doctor. If you are older, you are probably taking aspirin too so you are adding to the thinning of your blood with the ibuprofen, I think, so again dont mess with this unless you discuss it with your doctor or know your tolerance for ibuprofen. I can only take it a couple of days because my stomach is too sensitive.

Obviously, this is anecdotal and needs some other comments if someone tries it. The PA didnt think what I had done mattered by the way.

marich540

Oct 02, 2010

I got the same Golfer's Vasculitis rash a couple of times. The last time was in Vegas after walking in the heat for about 1 hour. One thing I noticed is that the rash was above and below the elastic band (3/4" wide) of the white socks. This would indicate that maybe snugging the ankle with some kind of breathable band might help.

Snukes

Oct 09, 2010

To: Everyone

I too have golfers vasculitis but I am only 38 years old. I notice it most when walking in the heat for long periods of time. The first time was after walking in Vegas all day as well. I also was recently diagnosed with MS. Do you think this is common for MS patients?

golferwood

Oct 11, 2010

To: Everyone with golfer's vasculitis

Snukes, I also have MS and have been bothered by this condition off and on for year's thinking it was a sunburn, but woke up with it a couple days ago without any sun exposure recently... Believe it's because I wore socks to bed and my feet and legs became overheated, but I couldn't feel it because of my MS... very annoying, as other's, I'm using cold compresses and hydrocortisone cream, as well as Celebrex that I take for arthritis anyway.. I am 54, fair skinned.. MS patient for over 20 years. Like we need another "condition" to deal with.. :-( good luck to all,..,

Dee1956

Feb 05, 2011

To: All

Hello, I have had a similar rash which started in 2006,, it would start at my ankles, not go above the knee, sometimes there would be fluid retention and skin would feel very hot, felt as if ankles were being crushed. After 3 years and 5 doctors I have just been diagnosed with Mixed Cyroglobulinemia
I was told by 3 of the doctors that it was no big deal, then one said it was vasculitis then another mentioned this cyroglobulin in the blood. I was tested 3 times however the test is very specific and you have to treat the blood sample with care. I finally went to a hospital where my blood was tested and I was found to be positive. I am not suggesting this is anyone else's problem just thought I would mention in case it might help someone else. I felt very alone when it was happening to me and it took years to figure it out. Standing too long seems to bring it on for me. Flying also aggravates it
Good luck to all of you
D

ambler1

Mar 07, 2011

To: Everyone

I have read through most of this long forum and some of you have been following it since its heyday in 2008.  Like most others here, I get this form of vasculitis, in my case from long walks 30km+ in a hot climate.  There are two lines of potential enquiry that don't seem to have been followed so far.  One concerns the locality of the purpuric rash relative to compressive clothing - eg socks.  The other concerns the occurence of this condition when walking but not running.  My questions for the forum:

Has anyone explored whether this arises in barefoot exercise?  In other words, is the compressive effect of the shoes a cause?  In my case the purpura starts immediately above the hiking boot, but is worst underneath the socks.  On bad days it occurs in other places adjacent to pressure points; even on the shoulders next to the back pack straps.

Has anyone explored whether there is a periodic exercise regime that could be followed during a long walk, that would support the venous pump action effect of the calf muscle that seems to be present when running but not when walking?  For example - jog on the spot for 1 minute every 15 minutes during a long walk; or even lie on the back with legs in the air periodically!

It would be nice to find an answer.  I am planning a 100km non stop charity walk in June and I fear I will be bright red by the end of it.

janieann

Mar 12, 2011

To: ambler1

Welcome to the forum.

I can tell you that I get this condition when I wear golf sandals (i.e. no socks at all). As a matter of fact, I started wearing them more so I could more readily put cold water on my lower legs without having to walk around in wet socks.

The cold water is the only thing I've found that seems to help.

ambler1

Apr 06, 2011

To: janieann

Thanks for feedback.

I have found that spending 30 minutes in a cool bath after the walk reduces the extent of the rash and depth of colour that finally develops, but doesn't reverse the damage done on the walk.

I have been experimenting with trying to walk on the balls of my feet - to make my calf muscles work harder.  It seemed to make a difference on a 2 hour walk, but I haven't managed to keep it up for 30km!

For the 100km walk, I will plan on using ice water at the checkpoints every 2-3 hours, but the interval may be too long.  Here's hoping.

vanas

Apr 08, 2011

I happened upon this exercise-induced purpura forum after my son (13 years old) became affliicted with it after strenous work-outs in gym class - like the mile run outside (early spring weather), sit-ups, push-ups, pull-ups, etc... It is worse on his legs but is also on his arms and belly now too. The markings are like the spots of a leopard except reddish purple in color and fad to brownish if he has days of resting. Today - they are intense and have increased in number from playing a Wii sports type game. The doctor ran blood tests and ANA testing - and everything is normal and negative. My son feels no different and the "rash" does not itch or hurt in any way. His diet is not very good and we suspected it may be because of that. I have tried to read the posts here from the beginning - and wonder if anything was found to help? Will he have it the rest of his life and no one really knows what it is or what will help?

WalktheWalker

Apr 26, 2011

To: general

I am about to walk a 26.2 mile marathon for Breast Cancer and in training, I too have found this rash around my ankles, patches on my shins and calves. They are very red, a little hot and I have noticed that they seem to be getting worse after each training session. This does not happen when I train in the gym or in my aerobics or step classes which I find strange. I have tried to find a cure - calamine lotion, antihistermines, aloe vera gel etc. The rash does fade after a couple of days, but reoccurs with each of my training session, I am worried that after 26.2 miles the damage may be permanent...can anyone else help?

Al1948

Apr 28, 2011

To: Walkthewalker

I don't think this rash is dangerous at all.It is blood vessels reacting to walking in high heat and humidity and fades away after a few days.It is ugly and annoying the first couple of days because it is bright red,but I don't think it's life threatening!

Aussietraveller65

May 01, 2011

I did a google search and found this website after experiencing a red rash above the ankles up to my knees (and even a few splotches above, one day) during a recent trip to Hong Kong and China. I walked for hours at trade fairs and that is when it occurred. I was wearing jeans one time and pants another. I tried different types of socks to no avail. Guangzhou and Hong Kong are both quite humid but the cause,for me,seems to be just walking too much on any given day. I have had this problem off and on at Hong Kong and China trade fairs for up to 10 years that i can recall. This trip the rash was worse than the others so perhaps as i get older the problem is getting worse. It is splotchy and does burn at first when i take the weight off my legs or have a shower.I am healthy,not overweight,don't smoke and do a lot of walking in Australia where i live to keep fit. I have never had the problem in our humidity or heat that i can recall. The only solution for me is to walk for shorter periods (up to 1 hour max) and sit down and rest more at regular intervals during the day. My rash does go away after 3 days or so by itself. Sounds like i get golfers vasculitis but as i took a lot of pictures i am going to visit my local GP for his advice. I was glad too see so many other people have a similar problem, as i was quite concerned about it this time. I am 46 of Anglo-European origin for the record

janieann

May 08, 2011

To: vanas and all

Vanas,

Based on everything I've read, true "exercise induced vasculitis" as best they've defined it is limited to the lower extremeties.  If your son has it on his torso and arms, I would guess it's something else.

Here's an interesting recent article citing its presence in a 16 year old swimmer.   The interesting thing here for me is two things.

1.  Being in water (theoretically cool water) didn't prevent the outbreak

2.  The photos of her rash don't look anything like my rashes.

http://www.omicsonline.org/2155-9554/2155-9554-2-119.php

My rash covers an area, usually my entire calf, is not spotty at all.   It looks like a sunburn, although it is slightly raised.   When I got it on inside of my upper ankle one time, though, it was blood read with no texture to it.   That was hideously ugly.

Jane

janieann

May 09, 2011

To: All

I just realized that MedHelp has a Photos Upload capability. Here is a link to the two photos I've uploaded that show my rash in its forms. The second photo shows its normal manifestation in me.

http://www.medhelp.org/user_photos/list/565199

Al1948

May 10, 2011

To: janieann

Your rash is cute compared to mine!I don't want to scare you with my pictures!
Be happy!!!!

janieann

Jun 10, 2011

To: All

Got a horrible case of this today, but I think I learned something.

I played 27 holes of golf today in temps that were well into the 90s.   I played the first 18 in the morning in a tournament, and rode in a cart.    I really didn't notice anything after that round, and gave no thought to trying to play a little more after a quick lunch.   I drove to my course and played another nine holes...this time walking.   Within just a few holes, the rash was in full bloom and fierce.   On normal days when I get it walking 18 holes, I notice it only well into the round.

I think what happened today is that my core body temperature was never able to return to normal after the first round (even though I wasn't walking), and when I tried to walk after that, it came on immediately.

I'm also noticing right now that my skin where the rash is is hot to the touch.

jayhawk_1

Jun 26, 2011

To: All

So glad to have found this forum. Was just in Chicago, walked several hours with long cotton loose slack, sneakers and short socks. It was a very warm afternoon. Although I have had small outbreaks on inner ankles in the past, this was the first time this summer and it was half way up by inner legs and alarmingly red. We had driven to Chicago, so maybe sitting for extended time entered in also- at any rate, it prompted me to do an internet search. I am a 62 year old fair skinned female of Swedish descent, for the record. I would be interested in knowing if the compression socks have been of benefit to anyone. It seems counter-intuitive as they would make the legs hotter, I would think. Please post any remedies you might suggest. I appreciate those that have been posted and will give them a try. Many thanks.

ambler1

Jul 10, 2011

To: janieann

Three weeks ago I completed a 100km non stop charity walk for Oxfam, and was pleased to finish in 25 hours along with my 3 team mates.  Unfortunately and predicatably I had the worst case of golfer's vasculitis yet. It was bad after 40km and just got worse.

However, I have been experimenting since then with compression sportswear as a possible solution, and it may be an answer, for me anyway.

Today, I did my first good walk since the Oxfam walk - 30km, largely uphill, in about 5 hours - the sort of walk which would usually be sure to trigger vasculities.

The good news is I had no vasculitis, after wearing a pair of "compression race socks".  These are tight - hard to put on - come to just below the knee, and are widely used by marathon / ultra-marathon runners.  I wore them throughout the walk and for about an hour afterwards until I cooled down.

I wear them under long hiking trousers, but you can wear them exposed - they are not unsightly.  The particular type is a company called 2XU, but there are others (eg Skins).  See  http://www.2xu.com/product/258/Compression-Race-Sock/12

I will continue to experiment and post another comment after a few more walks.  I would like to test them in hotter weather - today was cold by Brisbane standards at 5-15 deg C.

meep277

Jul 16, 2011

I am a 30something female,caucasian family history of heart problems including hypertension on both sides.
I had this as an adolescent starting at 9 years, I got heat rash in childhood but this was different, very dramatic sudden and painful. I had it mostly on the backs of my thighs , after sitting for extended periods at night, like falling asleep in a chair.The first time it happened we took me to the ER. They gave me ( calodryl or "something-or-other ") and sent me home. When it kept happening I was tested for Kawasaki Syndrome.I did not have KS.
Doctors were intrigued but also shrugging it off as unsolvable. It got worse over the next few years to the point that if I leaned on my elbow or chest it would happen those places also.At 13 my hands and face were red and bumpy and painfully tight then peeled at the slightest rub as well for 3+ months.
No peeling but the hives/rash have/s continued occasionally over the years.
The past 5 or so years I have noticedd no signs of it...I have stopped eating processed foods, started commiting to water drinking only and eating salads everyday and at least 1 hr exerecise every day, usually in the morning.
These past few months however I have been harried and have broken some of my rules. This past month I have been on the US West coast walking a lot and drinking lots of coffee, eating lots of carbs and The Rash Is Back ! from photos and descriptions I now believe it to be GV.
I am releived to finally have a closer step to undestanding this.

Gothiccat

Jul 25, 2011

I got this same rash the last three weekends when I was working at our local renaissance faire. I went to the first aid station and was told they see it a lot. It's a reaction to something that is put down on the ground (cant remember if it's fertiziler or something to keep dust down since we don't have concrete. Just dirt and gravel paths). Not everyone gets it and they suggested using Gold Bond on the area beforehand to prevent it and afterwards if you have already gotten it.

Hope that helps :)

janieann

Jul 26, 2011

To: ambler1

Ambler1,

Glad to hear the compression socks seem to be helping you.   It makes sense that they would help by perhaps keeping the inflammation at bay in the first place.

Meep277, it does not sound like you suffer from GV to me.   Getting it after sitting in a chair is not what most of us here experience.   We get it after walking, running, hiking etc..., and I think most of us just get it on our lower legs, although I'm sure it can vary.  It's also not dramatic, sudden and painful as you described.   Mine's slightly uncomfortable when it's bad and maybe  a little sore to the touch, but that's it, and it comes on rather slowly.   I can now tell when it's going to start, because I start feeling a little tingling sensation which I assume is the inflammation starting.  If I can get cold water on it quickly, that will help keep it from getting too bad.

I'm sitting here with a not too severe case of it right now, and it doesn't hurt at all.

Gothiccat, it's not fertilizer.  It's a reaction to heat.

http://walking.about.com/od/medhot/a/legrash.htm

walkies

Jul 30, 2011

It does seem to me like GV happens in the seasonal transition from spring to summer. And, after I moved from Arizona to Georgia (20-30 degree temp. difference), I was fine for a year, and then acclimated to the lower Georgia temps. and started getting GV again, even in the 80s. Again, happens while walking in the heat. Ice water applied to the back of my lower legs helps, and I've also had decent results with those small alcohol wipes like you get at BBQ restaurants! I wonder if this sort of product would help: http://climbnorthtexas.blogspot.com/2011/07/coming-soon-cooling-foam-wipes-spray.html ?

janieann

Jul 31, 2011

To: walkies

The Ice Spark Freezing Gel looks helpful!   Thanks for posting about it.

I learned something today...exactly what it means I'm not sure, but I definitely noticed something new.

I have the worst case of GV I've ever had right now.    I'm actually seeing splotches on my upper leg which is a first.     I'm trying to gather my thoughts on what was different or contributed to this bad outbreak today.

First, while it was in the low 90s and hot, it wasn't nearly as hot as it's been, and definitely not in the high 90s like it was when I walked the course last Sunday.   While I got the rash last Sunday, it was anywhere near as bad as it is today.   So what was the difference?   Here's what I'm thinking...

For a variety of reasons, not the least of which is that I ate a lot of salty food last night at a party, I'm retaining water like crazy.     Usually when it's hot and I walk the golf course, I sweat profusely for about 6 holes until all the excess water is out of me, and then I just sweat normally.   Today that did not happen.  I was sweating, but it wasn't pouring out of me on those first holes.    In other words, I don't think my normal "cooling system" was functioning right because I was retaining water.

Even though I know salt intake is important when you're out in hot weather and sweating, I think I really overdid it last night and contributed to my problems today.   From now on, if I know I'm going to be walking the next day, I'm going to make sure I don't go overboard on salt the night before.

sklgs

Aug 02, 2011

To: ambler1

Have been reading all these posts trying to figure out what is really causing the rash and how to avoid it or at best, make it go away quickly. So far, no luck. I can say that I have been getting it more often than I used to but that could be related to the training I am doing. I am preparing for a 60 mile charity walk and unfortunately every time I walk I get the rash. What I have found interesting though, is the location where most people get it - mine is varied a bit. I usually just get it on my inner calves right above the ankles and it is red and splotchy with bright red dots. However, I completed a 10 mile walk yesterday and when the socks and shoes came off, the rash started to come out. Within the hour I had the same rash on the inner calves but also the tops of the feet, on the ankles and below. I had on socks and shoes. Here is the puzzling thing - I don't just get it in hot weather and it doesn't matter if I have on socks and shoes. I have gotten it when I have had flip flops on - if I am on my feet and walking a long time. I am a crew coach and I get it every May when I am at the Championship regatta with my kids - it can be hot, it can be cold and rainy - I still get it. I am on my feet all day long, walking non stop so it must be attributed to the walking/standing rather than the temperature. I used to think it was heat related until I got it in colder, wet weather. Unfortunately, every time I get it, it is a little bit worse, and it comes a little more often. At this rate I will eventually have this annoying rash (which this time is a bit painful as it has a slight sting/irritation to it) all the time. Doesn't seem there is any sort of cure or way to avoid it based on the posts and Drs comments from those I have talked to.

janieann

Aug 03, 2011

To: ambler1

Here's what I'm thinking, but of course I'm no doctor or physiologist...

For whatever reason, some of us are prone to getting this rash.   The number one factor seems to be prolonged standing/walking/running which causes less efficient circulation in our lower extremities.

I'm guessing the second factor is an increase in core body temperature.    I would assume all of us have a trigger point with our body temp that sets us up for this rash.   Some of us have a higher threshold than others maybe.  I only seem to get it on really hot days, but maybe your temp threshold is lower.

This may sound crazy, but I think I'm going to take a digital thermometer out on the golf course with me and see what my temperature does on different days and whether or not I can correlate it to the severity of the rash.

Here's some info on body temp and exercise..

http://www.livestrong.com/article/361702-why-does-body-temperature-increase-during-exercise/

Overview

The hypothalamus, an area of the brain that functions as the body's thermostat, plays an important role during exercise. Normally, your body stays at a core temperature between 97.7 and 99.5 degrees Fahrenheit, but during exercise, your temperature can go even higher --- up to 104 degrees if you don't cool off properly. Your hypothalamus helps with thermoregulation, or adapting to changing temperatures.

How Does the Body Cool Down?

As the temperature in your blood rises, it triggers the hypothalamus to try to cool your body. The hypothalamus, in turn, sends signals to increase blood flow to the skin, where the heat can activate your sweat glands. As the sweat evaporates, your body cools.

SarahLou903

Aug 04, 2011

To: janieann

You bring up a good question and at this point.... why not?

How many of you out there are considered 'hot blooded'? I'm always the one in two or three less layers than everyone else, wearing short sleeves in the winter and always shedding clothes at the first opportunity (ok that's another story). Although I've never taken my core temperature on a regular basis, I'd be interested to know whether this affects those of us generally warmer than the rest of the population or if there are those of you out there who are always cold yet get GV?

walkies

Aug 05, 2011

To: SarahLou903

Hot-blooded? Nope, I'm always the cold one. Cold feet, cold hands, cold extremities in general.

austin7875978759

Aug 11, 2011

To: janieann

I have been reading this blog - After dealing with this problem for over 25 years and many doctors who just threw up their hands, I gave up. It ruled my life, especailly when it got over 80 degrees. Today in Texas it was 104. I have found what I consider to be a miracle - I got the information on Dr Weils site about inflammation - it is an herbal pill called Zyflamend. It is unreal, I went shopping today, in 104 temperature - no support hose that I usually have to wear - just flip flops - no rash.

sunnysd

Aug 16, 2011

To: sunnysd

wow its good to know I am not alone!
I first developed this rash when i was 20 and slightly overweigt about 180lbs. It developed in the evening after spending all day walking and waiting in long lines at Disneyland (first time i was there as an adult). I went to the first aid station and they say it was possible allergic reaction to dust perhaps when i was on thunder mountain they said. The pain was intolerable I cried. It was extremely HOT and painful. Red inflamed skin from what appeared to be a rash from above my ankles to just below the knee on both my calfs. i put cold wash clothes all night to try to keep pain at bay. In hindsight I should have taken ibuprofen to atleast dull the pain. Anyway it did not reoccur until years later when i started going to Sea World more often. Same symptons as described in the forum after several hours of walking 6+. Now it can occur as little as 4 hrs of continuous walking/standing. I've tried wearing shorts, sandals, going on cool days, going in the evening, still same after a few hours of standing/walking. I even can feel the onset of it and try to immediately leave for home when i start feeling it appear. If i notice it quick enough and go home to elevate legs and ice it down the duration is minimal and a lot less painful. Days when i go to disneyland and cannot just return home the pain can last up to 2 days and the redness takes about 3-4 days to dissappear. I had not tried the ibuprofen but now after reading this forum I will definetly give that a try before and after such an outing. Sometimes you cannot just do anything about it such as disneyland trips which usually require an all day outing. I hope some doctor can become interested in this enough to lead a research. The only reason I even looked up my symptons is because my daughter who is 11 years old but severly overweight has now developed this same rash. She went to Disneyland with a friend it was a very hot day and she was wearing long pants. She was in so much pain. When she come home I iced it down but she had never gotten that before. I did not imagine someone like her could get this same irratation after prolonged activity. I took her to doctor and they blamed allergy irritation. She is 11 but she weighs as much as I did when i was 20 yrs old so i thought it might be related to weight as also now i am 33 yrs old and overweight. But after reading these post it does not seem to be age or weight related. As active even underweight adults can develop it. I like janieann's post I think there may be association with our body temp as it appears it does not matter wheather the weather outside is cool or hot. If we are doing activity that is raising our internal temp and we have some genetic proneness to it that other people do not that is why only some people and not others experience it.

My plan of attack will be
1. Take 1 dosage of Ibuprofen before start of activty.
2. Drink lots of water throughout activity
3. Stay cool as much as possible. Fan/spray water on head and legs (arms too no? might as well lol)
4. Get off my feet. SIT/elevate legs as often as possible and cool backs of legs with cool water or water soaked cloth.
5. If irration becomes visible its too late.immediately take iboprofen and head home :((
6. Ice down and sit/lie down until it resides :((

I will try this next time Im due for an 6+ hour outing with the kids. hope it helps someone that enjoys golf more frequently but maybe they should rename this to some other name as it could be very difficult to get the word out that it happens to people who do not golf and not elderly. I was 20 at the onset and my daughter 11. I liked Disney's Rash lol or how about walkers rash? amuzement park rash? travelors leg rash? sorry for the long post.

Shodges

Aug 16, 2011

To: All

My best friend thought she had that. Turns out it was a symptom of Hep C. Check it out.

newcanuck

Aug 17, 2011

To: All

I'm having those lower leg red rash this summer. It is all about walking a lot, hot weather and the red rashes appear on the inner side of my lower legs. Left leg has more rashes than right leg, don't know why. it is getting annoying. Doctors don't know what it is. I guess I have to put some cold water down and keep my legs up for a day or two. It happened to me 5 or 6 times, and the red spots fade in 3/4 days, become light brown but don't go away. See pics:

newcanuck

Aug 17, 2011

To: All

I'm having those lower leg red rash this summer. It is all about walking a lot, hot weather and the red rashes appear on the inner side of my lower legs. Left leg has more rashes than right leg, don't know why. it is getting annoying. Doctors don't know what it is. I guess I have to put some cold water down and keep my legs up for a day or two. It happened to me 5 or 6 times, and the red spots fade in 3/4 days, become light brown but don't go away. See pics:

http://www.medhelp.org/user_photos/list/1766013

austin7875978759

Aug 17, 2011

To: all

Read my post about an herbal supplement Zyflamend that fights inflammation, and that is what causes Golfers Vasculitis. Ice helps, and not eating any salt, but Zyflamend is a miracle for me - after 15 years of dealing with this and many, many doctors who had no idea what was wrong with me.

janieann

Aug 18, 2011

To: newcanuck

Definitely looks like GV to me. Mine usually doesn't get that red, but it has once, and that's exactly what it looks like when my friend gets it.

Austin, I've ordered the Zyflamend and am expecting it any day now. I also have a horrible case of tendonitis right now, and can't take NSAIDs anymore, so I'm giving it shot for that too.

sunnysd

Aug 18, 2011

To: newcanuck

yes thats exactly how mine get when i walk for long periods of time over 6-8 hrs. the longer i walk the more red, hot and spread out it gets(within calf area). Although i wanted to ask the group before the onset of this do the bottoms of your feet hurt? Just yesterday I took a 2 hr zumba class and never had any problems with 1hr zumba. But i recently washed and dried my old shoes and they are now become very uncomfortable and painful after a short period of walking. When i went to bed i noticed the feeling as if I was about to develop the rash. I looked and could faintly see just a little area of pigmentated dots pink in color not yet red but not nearly as severe as when i normally feel them. Anyway perhaps does it have anything to do with pain associated with the bottom of your feet. Maybe our body reaction to pain in the soles of our feet? Just a thought. and austin i think i will try that as i will making a trip to India this year and will be doing lots of walking I would hate to be in pain while exploring the country.

walkies

Aug 18, 2011

To: all

With just 2 posts, I'm wondering if austin7875978759 is a Zyflamend salesperson? :D It's not clinically tested safe, of course, because it's not technically a drug. See http://www.drweil.com/drw/u/id/QAA354210, where Dr. Weil says, "...keep in mind that extracts of plants are still not as safe as the plants themselves. Use caution whenever you take any herbal product, especially a concentrated one. As with any product, report any unusual symptoms to your health professional and get checked after a month or two of use to make sure you are getting the desired effect."

austin7875978759

Aug 18, 2011

To: all

Hello Walkies - I probably should have told the story of how I found out about Zyflamend. I am actually a Realtor in Austin, Tx and Zyflamend is sold at health food stores like Sprouts, Whole Foods, etc. After finding this forum totally by accident one night about a month ago, I read every single post and figured out I had Golfers Vasculitis, even though no doctor EVER had a diagmosis for me at all. After reading that Golfer Vasculitis was caused by "inflammation" , that was a defining moment. I spent the next 2 days reading everything I could about inflamation (inflammation) and how to stop it. That is when I read the article on Dr Weils website about Zyflamend. I went to Sprouts the next day and bought some. I could tell a MAJOR difference in 3 days - it was unbelievable. It has been about a month now. It is 105 degrees here every single day. I am a Realtor and have to be outside a lot. Prior to Zyflamend I had to wear Support hose anytime it got over 80 degrees. My legs burned, tingled, and the rash got worse and worse each time over the years. Ice and elevation was they only thing that helped. I am fine now - for me Zyflamend was the key to getting my life back. I am sure everyone is different, but for me it is a miracle.

newcanuck

Aug 19, 2011

To: All

went to the Doctor yesterday and she referred me to Dermatologist (???), now have to wait until they find me a day/time for my appointment. thanks austin for the recommendation. I will keep everyone posted.

austin7875978759

Aug 19, 2011

To: all

Newcanuck - I have seen MANY dermatologists over the last 20 something years - none had ANY idea what my problem was. I would suggest printing out something on Golfers Vasculitis and ask them if they have ever heard of it. When I discovered all this, I spent days reading articles on the internet and there are some really good ones. If you like I could possibly tell you some good medical websites that talk about it. I know everyones problem is different, what works for me may not work for some one else. And also some folks may have other medical problems or take medications. A friend of mine is now taking it, but I suggested to print out the information from the Zyflamend website and show it to her pharmacisit to make sure she could take it.

De707

Aug 19, 2011

To: All

Thank you all for your posts. I don't feel so alone since I am the only one in my family that seems to be having this problem. I first experienced this about a month ago on the inside of one leg when I went on a hike. I thought maybe I was developing an allergy to the wool in my socks so I bought new socks without wool. Then, I went hiking with my son two days ago and got this very same "rash" on the inside of my lower legs, both above and below the sock line and very bright red. It does not itch however it is sensitive to the touch. I'm considering the compression socks since my skin under the top of the sock appears normal. It's also nice to know that there is a name for it.

janieann

Aug 20, 2011

To: all

I started taking the zyflamend yesterday, austin. I'm hoping it might help with the tendonitis because right now that's sidelining me from going out on the golf course and seeing if it helps with the GV! Hopefully next week I'll make it out. I gave myself a horrible case of gastritis with all the ibuprofen I was taking, so in my mind, all remedies, drugs, plant-based products, prescription, OTC, etc... should be taken with due care.

Newcanuck, a dermatologist is not who confirmed my self-diagnose of GV....a vascular specialist did. When I described my symptoms and when I got them, he said that's exactly what it is. I have other issues with leg circulation so they did a complete vascular work-up on my legs. I do indeed have venous insufficiency in my left leg, but GV is an equal opportunity affliction and hits both legs, so the venous insufficiency apparently isn't related.

austin7875978759

Aug 20, 2011

To: janieann

Hope the Zyflamend works as good for you as it did for me. I have been taking it for a month. I could tell a major difference in just a few days. Of course I thought I was imagining it.
Be sure and read the instructions on the insert and always take "with" a meal. They also make a PM version of the Zyflamend that my friend has been taking about 3 weeks to help him sleep better. It has a few different herbs in it. He did a test last night and did not take it, and he didn't sleep at all, so I thought that was interesting. I will think positive thouhts for you -

walkies

Aug 20, 2011

To: austin7875978759

Austin ~ thanks for telling us your story! It is much more powerful now that you tell us about how you found Zyflamend, "for healthy inflammation response." I am still a bit nervous about some of the herbs that I may (?) have never had before (Baikal Skullcap, Chinese Goldthread), but the ingredient list (http://bit.ly/q0jrnH) is interesting. It makes me wonder if sometimes when I *should* have gotten the rash and mysteriously *didn't*, perhaps I had dosed myself with some of these other more common herbs beforehand (Ginger, Rosemary, Turmeric, Green Tea, Oregano)? Whatever the case may be, this is a good find that hopefully will help our community of "inflammatory" people. :D

katashmart

Aug 24, 2011

I have a question, ever since I was younger my legs would get blotches of redness on them whenever I took hot shower, walk around for too long or stood for a long period of time, when I'm in the sun, basically anything even under my pants it comes on my legs. Its my knees down to ankles not swollen not itchey not painful just feel warm and get red.
I have tried to hide this condition and I am only 19! Any ideas of what it could be I'm tired of not know I need to see a dermotologist soon.
My mother told me when she was younger she would get purple blotches but they went away when she got older. Mine don't seem like they will go away

janieann

Aug 24, 2011

To: katashmart

Hi katashmart,

Sorry to hear about your problem.  If what you have is GV, it's one of the most extreme cases I've read about on this thread.    No one else to date has reported getting GV after taking a hot shower, but since it raises your internal core body temperature too, it makes sense.  You might just be extra sensitive.

"Its my knees down to ankles not swollen not itchey not painful just feel warm and get red."

This describes my GV to a T, although when mine is bad, it can be a little sore to the touch.

From a doctor standpoint, this is a vascular condition not a skin condition.   If you want a confirmed diagnosis, I'd suggest going to vascular specialist rather than a dermatologist.  Or maybe go to your regular doctor, but go armed with something printed off the Internet like what you see at the link below since a lot of doctors haven't heard of GV.

http://www.ncbi.nlm.nih.gov/pubmed/15670170

Unfortunately if what you have is GV, there isn't much you can do about it except try to avoid the conditions that cause it for you.

Jane

saffer

Aug 26, 2011

Well, I am glad to have found so much info on the 'net. The first time it happened to me (same symptoms-above ankle line, to just below knee) was after a five-day walking hike in Scottish Highlands. Since then, it appears sometimes, and other times not, but when it appears, it will be after a long walking episode. I do lots of other exercise - jogging, walking up the stairs, stand all day with my job - but it is only when walking for a longer-than-usual while that it occurs. I am glad to hear it is not life-threatening and hope that someone finds a cure soon, as it is so unsightly for the 2 or 3 days after before it disapaears.

gingerjob

Sep 08, 2011

To: all

I think I may be experiencing something like Golfer's Vasculitis when I ride my horse in the summer. I get an itchy raised red ring of broken capillaries under the skin around each leg, above my sock. It is worse on the part of my leg that sits closest to my horse's side - he kicks out a lot of heat. It is less likely to happen if I don't wear chaps - they must keep a lot of heat in. It happened while walking for the first time last week - a nine mile strenuous hike in about 20 degrees. It was far worse than anything I’ve experienced after riding. I still have the marks, 7 days later. Annoying...

MARK1678

Sep 20, 2011

How marvellous to find others experiencing the same problem. I've just returned from a day walking in the country, to find the usual red blotches above and below my socks. The drawback with me, is that it will take over a week to disappear, and when it does, it will leave brown blotches on the skin surface. I have so many blotches, it looks as if my feet and ankles are dirty, and I have to wear long socks if I wear shorts. My doctor is quite dismissive of it, and says that the brown blotches are the iron in the blood left under the surface. He has given me a moisturiser to rub in my legs every morning, and after a bath. I'm not sure if I can get the Zyflamend in England, but will give it a cautious try. Any suggestions for fading the blotches, as the 'whitening' creams I've used so far have been useless.

austin78759

Sep 20, 2011

To: mark1678

You can order Zyflamend on the internet. FYI - for me, eating high sodium foods makes my rash even worse.
I am curious if anyone has even seen a Naturopathic doctor about this, since regualr MD's know nothing at all about it.

danid310

Oct 06, 2011

I am a 37-year-old woman who has gotten the Golfers Vasulitis since I was a little girl: summer trips to Disney, walking all day in the heat, into adulthood. Does anyone know if becoming pregnant will make the situation worse or be potentially unhealthy for me and my circulation? Also, what kind of specialist do I see about Golfers Vasculitis to ask this question? Cardiologist because it's circulatory?

austin78759

Oct 06, 2011

To: danid310

Read Janieann's post from Aug 24. She talks about the kind of doctor. If you have the time - read every post on this blog - you will learn A LOT ! Good luck

Jane007

Oct 08, 2011

Now for my story: I first developed this rash--above both ankles--when I was 48. I was on an art history(class) tour of France and Italy in June. It was very warm, and I had walked for days and for many miles when I noticed the rash in Rome. The Instructor and other adults in the group were concerned enough that I finally went to the emergency room of a Florence hospital. The doctor immediately diagnosed the rash as "too much comitari" in the heat. He gave me two prescriptions, one oral and one ointment. Since they were both in Italian I couldn't read the ingredients, but the ointment did have the word for phlebitis (spelled with an "f") among it's written instructions. I took the tube to my doctor when I returned to the States and he had never heard of it--neither the condition or the medicine. I have had the condition many times since, always after lots of walking (and now that I think about it, lots of walking after long train or plane rides), and most recently in Italy.

At any rate, I have searched for years in medical books (I'm a retired librarian) and on the web, and find there is almost no information or research on the condition, except anecdotal. Some years ago, I did read a reasonable explanation, which I can no longer find. It was that the condition is caused by the valves in the leg veins not closing properly, somewhat like varicose veins, so that blood pools in the capillaries when we (with bad valves) are on our feet for extended periods of time.

BTW, my symptoms are pretty much likes others: a little initial itching, the "rash" (not raised but appears as tiny dots of blood under the skin) develops, skin feels tight and warm, but otherwise causes no problems--just looks awful. Also, the Italian doctor did say to rest and keep my feet elevated. The rash disappears in a few days. Next time I will try Aspercreme to sooth and possibly dissolve the pooled blood.

Proofing this comment is almost impossible--just hope the makes some sense.

austin78759

Oct 09, 2011

To: Jane007

Your rash sounds like mine - walking, or even standing for hours. We need to put pictures of our legs so others can compare. I have sadly had this for 35 years -and it has gotten worse with age. What helps me is : restrict foods with sodium, and taking an anti-inflammatory that I found by accident called Zyflamend ( Whole Foods or Sprouts or on the internet) It has helped me enormously in the Texas heat. I am a Realtor and showed homes one day when it was 112 degrees and after 5 hours I had no rash - hard to believe. I also REALLY watch what I eat. Good luck - too bad all the many, many different types of doctors I went to were of no help to me so I gave up going a few years ago.

Jane007

Oct 09, 2011

To: austin78759

Thanks for the information about Zyflamend. I will try it.

I am now 71, so you can see how long I have been having this problem. I just had an episode when I was in Italy in September. It is most unattractive and alarms others when they see my legs.

Thanks again.

austin78759

Oct 09, 2011

To: jane007

I am 67 and have dealt with this since my 30's - it actually tends to rule ones life sometimes and has prevented my from doing many things I would have like to. What led me to Zyflamend was reading artcicles about "Golfers Vasculitis" and Inflammation. I have been taking one in the am with food and one at dinner for about 4 months, and it has been an amazing difference for me. I know different people have different situations though. I also limit my sodium intake to about 1,00 to 1,500 mg a day which is low. If you ever want me to tell you about articles I found on the internet that I learned from, I will be happy to do that. Since doctors have no interest in helping us we have to help each other. I have been to every different kind of doctor imaginable to no avail. This is my "one and only" life and I want to enjoy it like a normal person ! Take Care-

Al1948

Oct 10, 2011

Hi everybody.I have not contributed for some time as I have been analysing my condition after every game of golf and in different conditions.Here is what I have concluded:The two major factors are humidity and distance walked.I have played 18 holes two or three times a week over the last year and my rash is much worse after walking a long undulating course as opposed to a shorter,flatter course and much worse when humidity is 80% +.I used to think that fertiliser on the course was a factor as some courses gave me a more pronounced rash than others but after sifting through the data it is very definitely the length and terrain of the course(not to mention extra distance covered due to a few wild shots!)and the heat and humidity here in Thailand.How do I control it?Check the humidity index and choose shorter courses if possible!Cheers.

austin78759

Nov 08, 2011

To: janeann

Where did all our bloggers go ????? Austin 78759

Asmardina

Nov 28, 2011

Hi
I am 47 and noticed this same pin ***** red rash above my ankles and below my knees on both legs when I had walked all day in Barcelona this summer. Temperature was very hot and humid. The second time i had this was a couple of days ago after I had Been walking in a v warm shopping mall for four hours and I was wearing jeans tucked into boots.
I don't think it's just a hit weather thing once you get it. If where you are has a warm temperature it cam contribute.

countrycraft

Jan 02, 2012

To: Florag

Hi all, I'm a 44 year old female from Melbourne Australia. First diagnosed with vasculitis during my 1st pregnancy, have had 2 more beautiful babies since. I suffer from my knee all the way down. On the very worst it has gone all the way up my leg and up to my bikini line, which scared me a lot. I was diagnosed with Sjogrens Syndrome first, also the vasculitis (inflammation of the small blood vessels) confined to the lower legs. I'm very lucky because some people have inflammation of the large blood vessels which can be fatal. I also now suffer from rheumatoid arthritis. :-( Have googled many times to try and find information on how to stop it etc. I have never heard of GV before I just googled and found this forum. It sounds more like vasculitis, there are various types of vasculitis, but sounds like you all have what I have. You may want to try Pycnogenol - an extract of french maritime pinebark, fish oil and Vitamin E supplements. All help with inflammation which is what is occuring in your legs, if you can stop the inflammation then you wont suffer with the rash/spots pain. Just found the Pycnogenol so havent tried that yet. I find during winter I dont suffer as much, so yes I think its a heat thing which sets it off. If my body temperature increases during the day by 6pm my legs are so painful with a sort of itchy stinking burning I cant stand up. Have to elevate my legs. I have experimented with a lot of foods, kept a diary and a few things I need to avoid are any sort of artificial preservatives, alcohol - bugger, tomato, oranges. Exercise is a must, drink lots of water, dont under any circumstances take fluid retention tablets, that's not what is happening its the inflammation which is making your legs swell, (which what happens to mine) eat lots of blueberries. Anything which is full of antioxidants which helps reduce inflammation.
I'll be following this forum for now on, so glad I found it, I dont feel so alone anymore. The thing that really upsets me most is the rash, which always occurs in the hotter months when you want to wear a skirt or shorts, but find my wardrobe mainly now consists of dresses and skirts all the way to the ground. And forget about swimming in public :-( I've had this for nearly 13 years now, I'm slowly getting use to it, but it is really embarrasing at times. Good luck all, hope I've helped a little.

austin78759

Jan 07, 2012

To: countrycraft

Your legs sound like mine. When I get hot they get itchy, burn, and have a terrible rash that only elevating them and putting ice on helps, but it still takes several days for them to look normal again. I find eating salt makes mine worse. I have had this "undiagnosed" problem for over 20 years - finally gave up on going to doctors. Found my answer right here - Inflammation !!!! So I went on a quest to find how to help inflammation and I found an herbal supplement I bought at Whole Foods - they also sell it online. I used to take Pycnogencol years ago but it did not halp as much as Zyflamend does. When it is hot I have also had to wear support hose (Leggs Active support) which really helped. But now that I take Zyflamend I haven't had to wear the hose and I am glad about that. We should post pictures of our legs and I bet they are the same. Mine always started on the inside of my leg down by my ankles.

countrycraft

Jan 10, 2012

To: austin78759

I've tried to find Zyflamend in Australia, but had no luck yet, so will keep looking. I'll post a photo next time, its summer her in Australia so no doubt I'll have a few doozies to show lol. Made my husband buy a dishwasher a couple of months ago, I found myself sitting on a chair washing the dishes at night, my legs were so painful. And there was no way he or the kids were going to wash them. I never thought of salt, I never cook with it, so I'll keep a note of that as well.

:-)

janieann

Jan 11, 2012

To: all

In lieu of Zyflamend, you might want to try the less expensive and widely available Tumeric as an anti-inflammatory. There's a lot of hype out there about it right now, but based on what I've read, there is some actual medical research going on right now to see how effective it is.

Not that if you don't buy a tumeric/curcumin supplement with bioperine included in it, you'll need to buy the bioperine separately. Tumeric is apparently difficult for the body to absorb in quantity, and bioperine aids that process. It might be cheaper to buy them separately which is what I've done, but I haven't investigated that thoroughly yet. My very unscientific findings are that I think it does help with inflammation I have from tendonitis, but it's not the time of year to try it for GV.

http://lpi.oregonstate.edu/infocenter/phytochemicals/curcumin/

Kristyboof

Jan 13, 2012

After having very puffy swollen ankles
Due to fluid retention I have been left with a freckle like rash on my ankles. It is quite a large area and I am curious to what it may be. Any ideas?

gracekelly112

Mar 15, 2012

Well it sounds like I have the same condition - starting researching my rash this morning and very glad I found this forum - definitely believe I have GV - was around 39degrees (C) in Adelaide yesterday and also humid - played 18 holes and ended up with the rash condition later in the evening - doesn't hurt or itch just feels "tight". but at least I don't need to go see the doctor now that I have had all your advice.- happy golfing !!!!

nicnac55

Mar 20, 2012

To: austin78759

Hi Austin every one
I am another sufferer from GV. Like you, English and now based in Philippines, you would think after 69 years one would have found the cause and solution. I played last weekend in 30 deg C in hot and humid Manilla and came off with probably the worse case of GV for some years. Ankle to knee quite severe. After 2 days red blotches are starting to go pink and on "mend" until tomorrow when I play again. Its strange as I do not get it every time I play. I put this down to:
a) probably walking the course and not using a buggy ?
b) perhaps using tight sports socks ?
c) having a couple of "drams" (alcohol) before we went out. DEFINITELY A NO in future as I feel this did not help ?
All the forgoing posts with advice and experiences is most welcome and reassuring. I am glad I found the site now and will certainly pass it on to fellow "senior" golfers.

Workngirl

May 27, 2012

Last week I got this rash just above the sock line on the inside of my left leg. Iots super bright red and you can see tiny vessels under skin. I work on my feet for 11 hrs a day and just last week the temp was 90 and I was sweating all over all day. I figured it was heat related, took a few days to go away. This week it's back and bigger & a little patch on right leg now. I wore socks the were not tight and lower hoping it would help but it didnt. I suppose I'll have to deal with this until summer is over.

jbullock0902

Jun 13, 2012

To: Group

Dermatologist recommended: Try compression socks, knee highs of 20-30 mmHg. You can get them on the net for $15-$25 a pair on sale. Anti-oxidents are also recommended, and a small study has concluded that Vitamin C (500 mg) taken with Rutin or Rutoside (50mg) twice daily, helps.

kt467fg

Jun 24, 2012

I suffer from gv each time I go to an Asian country with high levels of humidity - it may not just be Asia, I just travel there alot and it is the only place I have been to with high humidity. This is what helps for me - eating only fruit and I mean only fruit. I am not sure if it is because this clears me of toxins or because it keeps me cool but it seems to work. It is really difficult to stick to however, it is absolutely better than spending my holidays in my hotel with my legs elevated. Give it a go, I really hope this help others.

b12551

Jun 24, 2012

To: Group

Just like everyone, I too have this condition (I hesitate to call it a disease).
My first episode was in 1986 (45 years old), walking around Expo86 in Vancouver one weekday evening after work (we live in the area). The area affected me above the ankles, around the lower legs, AND on the upper legs too. It is not itchy, but the skin is very red, and hot to the touch.

However, like no-one else has reported, this condition also causes me to get quite ill (feverish). When I go to bed I sweat buckets of water (due to the fever). The next morning, I am better, but not 100%. Usually it takes 2-3 days to finally subside.

I get this condition a few times each year, but no doctor has been able to diagnose or suggest anything.

Usually it occurs when standing/walking for a considerable length of time (4 hours or more). And usually if I am wearing shorts... but not ALWAYS. Just last summer it occurred when I was working inside an air-conditioned building, and was wearing long pants.

So my situation is similar, but not identical.

I am not a medicine-taker, if I can help it.
I see the possibility of reducing salt intake... that I can try.

Thanks for all the input.

cynthiam0917

Jun 26, 2012

To: Dr_Aparna

Hello I am 26 years old and I have had this condition since I was little. My mom told me she took me to the doctors and they couldn't explain it. When I was 17, I was diagnosis with poor circulation. I work in a nursing home as a nursing assistance, so I am always on my feet a lot and long peroid of time. My legs always hurt but hurt worst when the red rash is there. I was wondering if me having poor circulation would be the cause of this.

phi789

Jul 02, 2012

Hi all. I have just returned from walking along Hadrian's Wall and have suffered from the same type of rash. The weather there was awful last week - rain, storms and flooding and my rash appeared after spending a day walking in the rain wearing walking boots, waterproof trousers and gaiters. I believe that humidity is the main factor above anything else. The symptoms I got (again) were red raised dots which spread to join up and become one large patch on the inside of the ankle and just below the knee (where I was wearing a knee support). The whole area was tender to touch and pretty swollen. The following day was very painful to put weight on the leg particularly when first getting out of bed. It cleared up in a couple of days (one resting and one only walking a few miles) but I am left with a purplish patch where the redness was. I have had this many times before. At it's worse causing blisters the size of half a golf ball to appear. As a mid thirties hiking lover I am not willing to give up my walking boots just yet so any advice I can get is great.
1. I am interested to know if anyone else has tried compression socks as the rash appears above my boots but below the knee support.
2. Someone mentioned eating natural things like ginger. Has this helped anyone?
3. I rarely cook with salt but does anyone else know of other things to cut out?

phi789

Jul 02, 2012

Hi all. I have just returned from walking along Hadrian's Wall and have suffered from the same type of rash. The weather there was awful last week - rain, storms and flooding and my rash appeared after spending a day walking in the rain wearing walking boots, waterproof trousers and gaiters. I believe that humidity is the main factor above anything else. The symptoms I got (again) were red raised dots which spread to join up and become one large patch on the inside of the ankle and just below the knee (where I was wearing a knee support). The whole area was tender to touch and pretty swollen. The following day was very painful to put weight on the leg particularly when first getting out of bed. It cleared up in a couple of days (one resting and one only walking a few miles) but I am left with a purplish patch where the redness was. I have had this many times before. At it's worse causing blisters the size of half a golf ball to appear. As a mid thirties hiking lover I am not willing to give up my walking boots just yet so any advice I can get is great.
1. I am interested to know if anyone else has tried compression socks as the rash appears above my boots but below the knee support.
2. Someone mentioned eating natural things like ginger. Has this helped anyone?
3. I rarely cook with salt but does anyone else know of other things to cut out?

phi789

Jul 02, 2012

I also meant to mention that I get extremely hot feet at night. Does anyone else get this? I am wondering if this may be a factor and something to do with my internal cooling system not working properly.

Kaishort

Jul 11, 2012

Hi everyone, I have been living in France for the last two months, I'm 25 and that's when I got my first rash from the angles up to below the knee. It was very red/purple little swollen but no bumps and no itches. Just very sensitive like I got a sunburnt... So anyways it always happened on the days I am traveling and walking around a bunch on hot days. I came across this web site and desided I have golfer's vasculitis.
I mentioned it to my mother-in-law and she said her best friend gets this and to try Anti Monkey Butt powder or they have them in wipes. ( sweat absorber and friction fighter). I know it sounds pretty ridiculous but my mother in law told me it works and her friend doesn't get nearly as often or as bad. So she sent some to me here in France and I put it on right before I know I am going to be walking a bunch and It really does help! I haven't gotten it for a month now....so I hope this helps someone!
Go to www.antimonkeybutt.com and check it out.

lindaroberts

Jul 11, 2012

I was diagnosed with GV today. I like a few of you also have MS. Normally I am fairly active but have been grounded for the past 3 weeks with a urine infection.Yesterday i noticed this rash and my 1st thought was the numerous antibiotics I have been on recently. This morning my GP said it was GV
As to the cause I am unsure as I have been housebound and have had no exercise in 3 weeks. But my feet where very cold yesterday so I sat with my feet on a hot water bottle and wore a pair of thick woollen socks
I am heartened to know this will clear up fairly quickly

spudjim

Jul 14, 2012

To: phi789

Hi
I have had vasculitis for a number of years. It seems to me that there are a number of triggers for the condition and a range of "treatments" that may work on some individuals but not others. I have been interested to read about some of these and will give some a try. The main trigger for my condition is prolonged standing or sitting without exercise when I get blotching generally below the knees. Initially it was just a rash with no sensations at all but now I get itchy and a sunburn sensation. It disappears after two or three days but has left some permanent staining on my ankles. I first noticed it after long haul flights and after being tested it was confirmed as vasculitis. The condition appears to be worsening with age. Whenever I fly now I wear compression socks and attempt to exercise as much as I can during the flight. I also leave the pressure stockings on for a couple of hours after I land. This has had a dramaitic impact on the amount of rash I get. The stockings I use are special compression stockings and I had to be measured and fitted. Mine are knee high only but you can get thigh or waste high ones as well if the problem exists higher up. Hope this info is of use.

nicehike

Jul 24, 2012

I use "Smart Wool Progressive Compression Socks" during sumer time hikes in San Diego. After months of trying all the posted cures nothing worked at prevention until I tried these socks. I also leave them on for a couple of hours after a hike.

b12551

Jul 30, 2012

To: Group

I have been researching a little more with some thoughts on what might be causing/contributing to MY situation. Yes, like most of you, it seems to manifest when standing/walking for long periods of time.

But, in conjunction with this, I also now think I do not HYDRATE enough.
I never have been much of a water/liquid drinker, and I have occasionally been dehydrated... slightly sick and weak feeling. After drinking a glass of water this feeling goes away.

So after doing some investigation, I think it is possible that my body, if I start to get into a dehydrated state, compensates by storing body fluids in my legs, causing this condition we are all talking about.

I have begun to make sure I am hydrated enough, by remembering to drink adequate amounts of water each day. Since I have started to do this (6 weeks ago), I have not encountered an episode of the GV.

Maybe ??????

Winfred0000

Aug 09, 2012

To: Everyone

Hi!
I first had this condition, similar to others, of a skin rash above the sock line and on the inside or even the front (shin) of my calves after doing significant walking.  It doesn't happen in winter, only when it is warmer.  I hiked last weekend for four hours, slowly, and in a temp of about 77 degrees Fahrenheit, which wasn't really hot, and humidity was comfortable, yet I still contracted the rash.  I also get the rash over the top of my feet mainly along the long bone rise (metatarsal?) from my low ankle toward my big toe. For this reason I think I might be acquiring two different types of rashes, but not sure because with pressure my blood flow is inhibited just as the pressure applied by the sock, thus the vascular inflammation causing the redness.  I'm just curious if others have the hand swelling symptoms as well with this.  It all might be interrelated.  Maybe it also somehow relates to the whole complex dynamic between our vascular and lymphatic systems.  I don't know what I'm talking about from my lay perspective ha, yet I wonder.  Our lymphatic system transports fluids, the watery part of our blood called plasma, as well as fats and white blood cells etc.  I'm going way beyond myself here; but wonder if other commentors might have that same experience of hands swelling.  I think that it's the same with the feet and lower extremities and that maybe Golfer's Vasculitis is the manifestation of a "domino effect" of sorts and the result of people who have inflammatory issues, or maybe early phase of other issues with processing fats or lipids and related organs like the spleen... etc.

This rash first occurred when I was 45 and walking all day in Manhattan in 90 degree or higher heat (starving writer along "publishers row" ha).  I thought it was from latex socks at first and all too readily donated my socks to GoodWill and tossed some of my older socks and bought cotton socks that kept falling apart and leaving lint stuck to my skin and blisters....  I mixed Neosporin first aid ointment with Hydrocortisone creme and that made it disappear much more quickly.  I went to a drug store when I ran out of creme.  I showed my rash to the pharmacist.  He said; "I must inform you that it wasn't the Neosporin that got rid of your rash.  I'd be willing to bet it was the hydrocortisone creme as it looks like an allergic reaction."  That's what led to me donating most of my socks....  I then tried just the hydrocortisone creme only and he was right, it disappeared.

I silently disagreed about it being allergy related.  Why was so much of it occurring above the sock line if it was a contact allergy?  I looked closely and could see the small blood vessels.  Using the cortisone creme, just a thin layer is necessary, and it vanishes much more quickly.  It leaves a brownish hue in a way a bruise does that for me takes about a week or more for that to disappear.  I discovered by blogs and pictures from volunteers on the internet that at least it looks exactly like "Golfer's Vasculitis".  I can even at a certain stage take my legs from being elevated, turn on my davenport and put my feet on the floor and in minutes see the rash triple in its degree of redness.  I rotate, elevate my legs again and the redness diminishes far less in intensity which really seems to indicate its vascular relatedness.  The "rash" does not itch and it is not painful.  Also it occurring above and along the sock line seems to me to be circulatory in nature, and the large bone rise on my foot part of it might be the same condition as that is a major pressure point from tying my hiking boots.

Also, does anyone else also have the symptom I have with long walking and that is one's hands and wrists swelling?  After about 45 minutes of hiking my hands swell.  If I make a fist I can really feel the effect of the swelling.  Sometimes the palms of my hands will have an odd mottled look of red and white patterns around what I think might be the subcutaneous fat globules (my lay terminology ha).  I know of the white fat globules or whatever as I cut the palm of my hand badly once, right through the skin, and could see it, a sublayer of fat, and it's very white just as animal fat seen on steak or whatever.  The other problem is... why does it occur on the inside and above the ankle.  If it's vascular then why wouldn't it occur all the way around the whole leg rather than just the inner side of it.  I think maybe there are two different types of skin tissue and related to sweat glands etc. too as I think the inside of the ankle sweats more than the outer side... just another consideration.  Hope I've helped in some small way or another.

HikerLady

Aug 16, 2012

Hello Everyone, I just found this community because I had the worst case of GV I've had since it started about 5 years ago.  So I did a search and now at least I have a name for it.  I coach people to do endurance hikes and my first season I got a few splotches on the back of my calves.  I though it was heat and allergy related from hiking on hot, dusty trails used by horseback riders (I'm allergic to horses).  Then it happened again on another warm hike, no horses.  I started wearing lighter socks to keep my feet and legs cooler and that seemed to help a little, but didn't prevent it.  If I wear thicker socks that get bunched up around my ankles, I will get the rash under the socks as well as above.  With cooler, shorter socks, the rash is only above the socks. Blotchy rash on my calves from ankles to knees. Over time it has gotten worse and definitely occurs more when the weather is hot.  The worst was after my most recent hike just this past weekend.  I've been thinking about why this time was so bad and after reading all the posts here, I think there are a few things that made it worse.  1) I hiked two days during a camping trip in very hot weather, but only had a mild GV reaction, which I cooled off in a cold creek.  2) Drove home from that camping trip 6 hours riding in the car with air conditioner going and experienced a little bit of swelling in my legs. 3) Some level of dehydration from hiking and camping in hot, dry weather at elevation, along with air conditioning drying me out. 4) I may have eaten more salty foods than normal while camping leading to fluid retention. 5) Hiked for 6 hours the next day in warm, humid weather.
By the time I got home after that hike, my lower legs were swollen and blotchy red toward the bottom half of my calves (only in back) and bright red (like a sunburn although I wore pants all day) on the upper part of my calves (only in back). I got one small blotch on the front of my thigh...first time this has happened.  My skin gets hot to the touch where the rash is and it usually stings when hot shower water runs over it, really feels very much like a sunburn.  I iced my legs and elevated them this time, but normally I don't have to do that.  As always, the redness and blotchiness disappeared after a few days, but this time my legs have the discoloration that so many of you have mentioned. They also feel dry and itchy now. I definitely think the swelling I had made the GV worse and I think too much sodium contributed to that, along with wearing underwear that was a little tighter than normal around my legs...constricting some circulation.  I've had hikers, that I am training, get similar rashes and have always told them it seems to be a type of heat rash...now I can give them better information.
I would like to hear more about the success of using compression socks and I will see if I can get the Zyflamend at my local health food store.  I'm certainly going to watch my salt intake before and during hikes.  I hike almost every weekend, anywhere from 2 to 8 hours, so I really want to find ways to prevent this uncomfortable (and yes, ugly) condition.  And, finally...I am 46 years old and of English/Irish/Scottish decent, since this seems to be a somewhat common factor.

gmb2000

Aug 31, 2012

To: Everyone

I have also suffered from Golfers Vasculitis for the past ten years, and until finding this site found it almost impossible to get decent information about it. I had cause to visit a dermatologist a couple of weeks ago and mentioned my (annoying) problem when out walking in the heat and she recommended wearing flight socks which give a medium compression to the area. I am going on a Holy Land cruise in two weeks time and will be giving them a try under my cotton trousers (i only hope no-one sees them) and will let the Forum know how i get on. I am also of English/Scots decent with the classic white skin and red hair and am 63.

Jennie_West

Sep 13, 2012

To: Fellow sufferers

Yestersay was my 3rd outbreak and it was so severe I completely freaked out and am reading everything I can find online. As nice as it is to know I'm not alone, it's disheartening to know there's nearly nothing to be done. After consulting Dr Google, I'm 90% positive I have GV.  All 3 episodes have been after a day at WDW or Disneyland....not such the happiest place on Earth right now for me. First time was last Feb, second time was last week and neither one was very bad, just odd & took a week to clear up. Yesterday I spent all day at DL walking and standing and the rash was shockingly horrible, angry, red after 8 hours.  It's warm, but not itchy.  I'm not even sure it's better at all yet, but I've put Tea Tree oil on it and been elevating them today. I have a good friend who's an endocrinologist and I'm going to try the Zyflamend if she gives it an ok. It's so ugly and I have a big trip to WDW for my husbands 50th bday next month with a week of walking amd tours so I'm looking for any and all suggestions.

I did the DL Half marathon 10 days ago and didn't get any rash so it's really just the walking for me and the heat/humidity.

I had planned to wear shorts & dresses for my trip, but no way can I do that if I look like someone just threw acid on my legs.

For those using Zyflamend, do you have to take it everyday or can you just use it before you're going to have a big walking day?  I wasn't sure if it needs to build up in your system to work. I'm a horrid pill taker, but I'll do anything that might work.

Jennie

rmf691

Oct 01, 2012

To: everyone

I too am just back from a cruise round The Baltic Sea. We did a lot of standing when visiting sites and it was hot and fairly humid. After a few days I got this very red rash from above my ankles and up my calves. It was fairly solid. On the front of my legs it was more spotty. It was not raised or itchy. I mainly wore long trousers and cut-off trousers and did not sun bathe. I have rheumatoid arthritis and take a mild dose of Methotrexate. I am also on blood pressure pills and statins. My doctor thought it might be due to the methotrexate. The rash has gradually started to fade during the few days since I have been back. I am nearly 70 have fair skin and am half Scottish, quarter Irish and quarter English. Other peoples comments have been very helpful.

rmf691

Oct 01, 2012

To: rmf691

Sorry, I am rmf691 and have just posted a comment and I meant The Black Sea dn not The Baltic!

gmb2000

Oct 04, 2012

To: To All

Well folks, i lasted for 7 days before my legs flared up. I didn't use the flight socks until the 8th day and they were of no use at all. I think it took longer because we were at sea for 3 of those days, so there was not so much constant walking. I had been using something called Chillicious from Templespa to rub on my legs when they got a little tight, and this seemed to ease the heat a little.

HisPeacePhil413

Oct 29, 2012

To: ambler1

Hi Ambler1

I am so glad my husband found what I have. Anyway, I usually get this when we go to Disneyland when it is warm. I just went today and wore shoes and socks and my inner calves above the ankle are beet red. We went about 2 weeks ago in similar weather and I was wearing flip flops with a thick sole. I did have a very slight rash and my legs hurt but it was not as bad. So, I believe that socks make a big difference in this. My lower legs were REALLY warm today.

Blessings to all

HisPeacePhil413

Oct 29, 2012

Hi Ambler1

I am so glad my husband found what I have. Anyway, I usually get this when we go to Disneyland when it is warm. I just went today and wore shoes and socks and my inner calves above the ankle are beet red. We went about 2 weeks ago in similar weather and I was wearing flip flops with a thick sole. I did have a very slight rash and my legs hurt but it was not as bad. So, I believe that socks make a big difference in this. My lower legs were REALLY warm today.

Blessings to all

b12551

Apr 29, 2013

To: All

After some time, my Dermatologist has suggested that I might have "Wells Syndrome". After doing some research, I suppose it is quite possible.
Symptoms seem to be much the same as mine.

You all might want to check this out for your specific situation.

janieann

Apr 30, 2013

To: b12551

Thanks, b12551.

I did some Googling and found the description below on the NIH website. I can say some immediate differences with my symptoms are that the red blotches are not itchy or particularly painful. When I first get them, it may be uncomfortable to rub them, but quickly they just become an aesthetic issue with no discomfort all. They also just fade away without turning different colors.

Wells Syndrome

Wells syndrome is a rare eosinophilic disorder characterized by itchy, burning, red, and inflamed areas on the skin often on the lower arm or leg. The lesions may be single or multiple. They are usually red at first (looking like cellulitis) then change to brown red, to blue gray, then greenish gray. The lesions are usually painful and are sometimes associated with a fever. They typically heal without scarring within weeks to months; however they often recur. The cause of Wells syndrome is unknown; but some researchers think that Wells syndrome is an autoimmune reaction.

Megabye

May 14, 2013

To: anyone

I've read about 100 of these posts - my word they are numerous! I haven't read anything about preventing the condition. I have tried coating the legs with Vaseline BEFORE the walk. Twice, I have not had the rash. Is this circumstantial? Have I missed a post about prevention (without pills)?
BTW, I get the condition in the dead of winter.