Grover's Disease: What works to help find relief?

In the internet research I've done, sweating IS the worst trigger for a flare up of Grover's Disease, which I've had since the 90's. I've started taking much cooler showers, which seems to be helping somewhat. The internet suggested bathing LESS. GD used to be a minor annoyance but these days, it's been really bad and topical steroid creams that used to work are not working any longer. The creams control the itching but not the outbreaks. My dermatologist suggested I try UVA treatment. Don't do it! It made it worse. I now have GD on my legs, which I didn't have before. It was limited to my torso. It's really bad under my breasts now, too and I think my bra is aggrevating it (as it promotes sweating). None of the internet info ties outbreaks to stress--but I'm convinced there is a link. I'm under a huge amount of stress now and the GD has never been this bad before. I don't know what to try and my dermatologist reminds me GD is a "rare disease" and no one is really doing any research or studies on it now. It's ugly and I hate it. I'm shocked I found people discussing it here. I'm happy to hear what anyone has to suggest.

In reply to @bburg, your comments are really interesting. I've never heard of an ice vest but will check it out. Your description of your GD is a ditto for me. It's a miserable disease and mine was tolerable for many years and has just gotten in the past year where I'm finding myself really upset with it. It's spreading, the itching makes me want to tear my skin off at times and I'm trying anything and everything out there to get it under control. I mentioned in another post I don't recommend the UVA treatments. My GD got worse and now I have it on my legs, which I didn't have before. You're very educated about skin but I'm still relying on the steroid cream and Eucrissa (sp?) right now, alternating every other day as an experiment under my dermatologist's care. I also believe stress is a trigger, since I am in a highly-stressful situation now facing total spine reconstruction surgery. It's too much of a coincidence to not be related. My GD came and went for years without driving me crazy and now it's horrible. I'm going to check out the FlexiFreeze; but living in South Florida, I just stay out of the sun--period. It and sweat are the worst triggers.

Not much is known about Grovers Disease, but what IS known is that it expresses itself on the sweat ducts. The skin tissue in the sweat duct area just sort of falls apart (sorry, didn't intend to get technical...joke). I'm sure the ice treatments don't address the root cause of the disease, but they have mediated the effects for me. Cold treatments in general!

I also have a evaporative-cooled mattress pad under my sheet (air passed through water cools the water and it is pumped through tubes in the pad). It works well to keep me from sweating at night, though you have to experiment with it to get that cool but not cold setting.

Start your showers just warm water (it won't bother the condition if it is only warm), then turn the temp down in steps until it's too cold to tolerate. Like boiling a lobster in reverse, you don't notice the temperature change and find yourself standing in water that would make you scream if you just stepped into it.

They make evaporative vests, but in my experience these are not effective. The ice vest is.

I would not dismiss possible a relationship of GD to drugs and I wouldn't leap to make correlations either, but I doubt it. I had a shingles vaccine probably 15 years ago, but just got Grovers in the last 2 or 3. I'm sure many people who have Grovers did not get the vaccine. And, I'd hate to have shingles and Grovers at the same time, so weigh this in when you decide for yourself.

We get Grovers at a time in our lives when things are happening to us. I mean, since I turned 50 I've had intestinal, colon, prostate and skin cancers, a heart attack and valve replacement, and more. Now Grovers. Things happen as we get older. Sucks to get old, but I wouldn't have it any other way.

I agree sweating is the worse for flare ups...and bright sun, which living in Texas it's a challenge... I believe years of sailing 30 yrs as my late husband and I had a sailboat here did sun damage...even though I did use sunscreen, and then running 4 /5 miles every am in this heat just triggered it exponentially ....I am now running inside on my treadmill and avoiding our pool until it is shaded....I have been drinking dandelion tea with drops of cilantro oil each am which I think has calmed it somewhat...also when I do get a bad flare up on my hands and fingers I wash them in a 10% benzoyl peroxide which drys the irritation in a few minutes, leaving your skin dry but not itching...after an hour or so I apply CeraVe hydrating Hyaluronic Acid Serum for moisture...it's definitely not a cure but does alleviate some of the discomfort...I have stopped the steroid creams my dr has RX...just didn't work...I keep going back to my dr but frankly I don't think they know how to treat this....

to @cindytxrunner - how did you come up with the various ways you treat your GD? I'm going to keep them in mind, since I'm getting little help from the steroid creams, either. I've lived in Florida 50 years, where I used to be in the sun all weekend--with suntan lotion and sunblock--but I seriously damaged my skin from sweating it off. I've had 9 skin cancers, too. That's why I've sworn off the sun but I really miss the beach and ocean. As for the doctors, they really don't know what to do for us. There are some trials, I believe, but my doctor didn't encourage me to look for one. I read a brief article on the net and saw a pic of one woman who was covered with GD and after a new drug (maybe from a trial?) was CLEAR of GD. So maybe there's hope.

Cilantro smoothies and lysine. Read the past posts on this site.

my dr suggested benzoyl peroxide and it works temporarily

I am taking cilantro by concentrated drops which are made from organically grown cilantro and sold by a company called Herb Pharm. I bought them on Amazon.com. Since I started my regimen of 5 drops twice per day, my Grover's sores have faded in color and most of them are bothering me far less than before. I am hoping for continued improvement over time. However, I can't be sure that the drops are the reason for my improvement since it is also possible that it is just coincidence. Would you mind telling us which cilantro oil you are taking? Also, I echo what someone else just mentioned about going back and reading posts on this forum from the past starting in late February of 2019. I think this link will take you there: https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/?pg=11#comment-114878
Pay particular attention to @kimass1 and @gardeningjunkie , but there are several other great contributors as well. They have all used fresh cilantro and have made smoothies using it. The details on how to do that are back there if you continue reading the posts going forward. Eventually, the Grover's of @gardeningjunkie went into complete remission, and she has estimated that the cilantro smoothies have helped about 50% of those who have tried them.
This may be a better way to go for you if you are willing to go to a little extra trouble of going through this process.
Obviously, the drops are far easier, but I seem to be the only one trying this experiment, at least at the moment. I seem to recall one other mention of them in these past posts and the person said they didn't work in his/her case, but
they didn't say exactly which drops they were taking, so I concluded nothing from that. I'm glad to have you running this experiment with me and I hope you have continued success, but please let us know exactly what you are taking.
By the way, you are right about your doctor not knowing what to do. They can try to treat the symptoms, but that's it.
It is up to us to try to find solutions. Good luck!

im using same drops as you...but I need to increase mine....I'm also making cilantro pesto, easy and good

Thanks, good to know & will help in drawing any conclusions from our experiment. I started out with just two drops twice per day because if you read the reviews of these drops on Amazon, some people had severe detox reactions from taking the number of drops recommended on the product label. I've gone as high as 7 drops twice/day but had to back off back to 5. Seems to be the right number for me for now, but it's just a feeling, not scientific. Please keep us updated on how things are going for you, which is hopefully, continued improvement!