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

@kg7382 @gardeningjunkie - Thank you so much! I thought I would receive notifications when I get posts but didn't. I am so happy that I checked back today. Now, I feel more "normal" ---:) as throughout my reading, I keep finding that this is related middle-aged men! The next important symptom that you mention which many articles do not and had me a bit scared is: pain! It seemed after this little red blotch appeared under my breast, I felt pain under the skin, almost like how shingles must feel and around (rib cage). Mine was located in the fold under my breast and almost more so upper abdomen (as the derm cited). I couldn't understand why this pain was there and of course, with the recent tiny calcifications in the ducts on my mammo, was beyond scared. When I visited the breast specialist this week, she assured me that they were not related. I am happy to know that the pain may have been associated with this little spot. It seems the punch biopsy (I have two sutures right now) removed the lesion. Of course, now I am a bit sore and pinchy in another way due to the biopsy! I hope it does not return but glad I can visit here to gain insight. One additional note: I recall late May, early June when this first appeared. I had performed some heavy duty gardening and became very hot. The fact this is located under my breast, even though I am not busty) makes sense that it would retain heat and sweat. Thank you all so much. I was filled with anxiety and I am sure that stress does not help anything.

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One quick note, all. I have worn underwire bras for years. I recently read of women who experienced a weird rash from Victoria's Secret bras. I stopped wearing their bras, mainly because of the strong odor that arrives with their material but also worried the underwire would aggravate the condition. Have any women here changed their bras? Sorry for the double post; I should have edited which I will do in the future.

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Normally Grover's doesn't manifest on legs. It is normally limited to torso but some cases have it extend to neck and down the upper arm. I looked at your profile and didn't learn if you have other forms of eczema. I have 3 different forms of eczema, Grover's is just one form. Have you been tested for Allergic Contact Dermatitis, ACD? Forgive me if I have already asked this. Your leg papules may be a form different than Grover's. ACD is related to allergic contacts like metals, dyes, preservatives, rubber elements and so on. Yet, your water filled blisters have me baffled, but for sure there is a reason. Could be related to none of the above. I did see on your profile an interest in blood cancers. I have or hopefully had leukemia, my chronic form, Adult Leukemia, CLL, after watching blood counts for 15 years it just started disappearing on it's own about 3-4 years ago. One of the 5 or 6 commonalities in Grover's is blood cancer like leukemia or lymphoma. I am wondering if your doctors want you to wear white cotton because it is dye free? The Cottonique clothing is not white, but the natural color, an off white, never dyed. The White Cotton Gown is bleached, but has never bothered my skin. I think they sell pj's, but I don't like the feel of anything around my waist when I sleep. A white t-shirt is a great substitute as a nightgown just make sure it is 100% cotton. I think Stafford from JC Penny's makes the softest and strongest.

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@gardeningjunkie ...haven't been tested for specific allergies, just prick test for environment, but previous biopsies showed hypersensitivity and a mix of cells that come with inflammation. This last bout of rashes has been the most severe along with feeling ill. Comes and goes on its own. Now this recent biopsy shows Grovers, with an already fading rash, but dr still wants a fresh biopsy of active rash. Dilemma to get me in on time. As for the suggestion on white cotton, that's only for times when I need a wet wrap. The garments get soaked in water, then rung out till damp. I apply steroid cream, then put the damp garments on. Of course they get cool, and its kinda icky, but I then put on my husband's big Terry robe over so I can at least sit on the couch, and stay comfortable . I'll say the coolness of the wet teeshirt actually felt relieving on the severe rash on my abdomen and back. Dr wanted me to do this 3x daily for 60 minutes. But, I only did it a couple of times since it was already on it's way out. About my blood condition...its a low grade MGUS. Very strange because I noticed a fatigue and body aches, hoarseness of my voice a couple months before, (happened many times over last 2years) and now my #'s on blood test have creeped up a bit. Nothing alarming, just needs monitoring. I dont think drs agree there's a connection to how I feel, but possibly, maybe can cause this rash.?? Yet, I know for a fact, those physical feelings that come over me, are NOT my normal. Even when I don't have the rash, I'm experiencing these symptoms. I'll go about my usual busy day, and then it just hits...I cant go anymore, start feeling real achy and super tired, my voice even gets weak. When I'm in this mode, could come and go over several months, I actually worry about entertaining and going out with friends...just not sure if I'll hold up. I know I covered alot here...hope I'm not getting confusing
Thanks so much for your informative replies!!

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@gteach I did read on a few sites that sports bras can trigger the problem, so I am careful to wear them when I work out and then swap to something else. Mine seems to be related to the heat, sweat and moisture. So keeping things dry helps. I’ve been trying to read up more on diet but haven’t found any solid information yet. My family all did Whole30 earlier this year and seemed to help other inflammatory health symptoms for my husband but not sure there would be a link to Grover’s. Hope you are feeling better soon! Also for me the pain went away shortly after my treatment from the dermatologist.

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You do have an abundance of overlapping issues, quite a puzzle. 1. Not sure why the doc wants a second biopsy. My biopsy came back negative for GD, but the symptoms were abating. Still 100% certain I have it, as I am a classic case, even doctor agreed another biopsy with active breakout is unnecessary and we both figured it served no purpose. 2. MGUS, that's a new one for me but looked it up. It is interesting that some patients that develop MGUS later develop lymphoma. That is a tie in to GD, as lymphoma and leukemia are common indicators GD. 3. I can't wright strongly enough that you get the 5 Day Extended Patch Test. Do that first before you get a second GD biopsy. Is your doctor licensed to perform this test. I went to derms that were not licensed to perform this test and they never recommended it!!!! Still angry. I had to learn about this test on my own, like you and others desperately seeking answers for problems no doctor was able to help me with. Allergies could be the cause of skin sensitivities, this test literally saved my life. What have you got to loose? It is not comfortable for 5 days, but not painful except where you might have a severe reaction to a chemical of element activated on patch. For me multiple sites were at a plus 3 (highest reaction) and those were exceeding itchy, yet I gladly toughed it out desperate to get a name for my tormentors. It is absolutely impossible to guess what these may be as many chemical and even natural elements are added here and there into our daily contacts. However I don't believe it would be possible if you had a back torso rash GD breakout. 4. Fatigue- I felt fatigued from lack of sleep based on painful or itchy symptoms. Yet right now am symptoms free for all my forms of eczema and have not noticed any fatigue, but I get a good nights sleep. I will be turning 70 soon and must admit my normally hyper nature has slowed especially in the last few years. Getting projects finished takes longer and I need to get off my feet by 8 pm once dinner dishes are done, because my legs start aching, but I realistically think that is a part of getting old. I am not sure of your age.

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I am female and was diagnosed eight years ago when I was 40. I tried cortisone, but the spots never ever went away. Last year I had 120 spots on my upper body and they started appearing on my legs as well. After reading online about a person who cut out alcohol, sugar, wheat and milk and thereby cured himself I decided to try. First I stopped consuming dairy, and after a month 25% of my spots had disappeared, and the improvement plateaued. I then also stopped eating wheat (gluten) and after three months ALL my spots were gone! I still eat red meat maybe once a week and drink wine two days a week, so it seems like it was the dairy and wheat free diet that did the trick. After eight years of nonstop Groves disease it is now completely gone. I have removed 95% of all wheat and dairy and that seems to be enough to get rid of the spots. I have not taken any medicines or used cortocone creams at all, it was diet alone that made the difference.

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I am so happy for you to have found relief and what seems to be the cause. I am a very allergic person and now have 3 forms of eczema, Grover's being one. My first outbreak of Grover's started about 3 years ago and only lasted a year and after that would have about 3 months off and then the next break outs were about 6 months apiece. I can't imagine your suffering for eight years. Right now I am Grover's free which surprises me as it went away this time in August and heat for me is a trigger. However that said, I reduced my gluten by 90% about 8 months ago, then 3 weeks ago cut it out totally along with other carbsl. I did this because of yeast issues after reading several books on diet and leaky gut. I quit drinking alcohol 3 years ago thinking it would help multiple other issues and can't say it made any difference, but won't start back up. I know I eat too much fruit. Once I quit the alcohol I developed a sweet tooth. I consumed at least 5-6 pieces of fruit a day, gluten free but full of sugar. After more reading decided my yeast issues could very much be tied into sugar- both natural and processed. I've gone cold turkey cutting out all carbs, not just gluten free as they have natural sugar in them as well as all processed sugar and of course all fruit for 3 weeks now. I've never had a weight issue, but one can't help but loose weight and I do consume meat daily with tons of veggies (one has to eat something). I also have not cut back on dairy- yet anyway. I eat my probiotic yogurt and consume kefir with probiotics. The only cheese is not aged for long, so string cheese which is mozzarella I eat. Yet I know dairy has sugar in it so we will see.
Turning 70 in a few weeks I can say I have never felt better. Although I am normally energetic unless I've lost sleep due to eczema pain and itching, I am amazed at my even more abundant energy level. I feel great. All 3 forms of eczema are in remission right now. I am motivated to keep going, not only for the eczema but for my yeast issues which are 90% better. According to my reading if I can purge myself of all sugar for 2 months it can stop the fermentation in my digestive tract- stomach and intestines and slowly add back a moderate amount of "safe" fruits. Like you I am very motivated to keep up this way of eating. For some of us with food allergies or leaky gut these foods increase the inflammation in our bodies. The histamines which raise of inflammation are actually trying to fight off foods they consider poison and they sent out battalions of histamine warriors. Therefore if we cut back on the offending foods the histamine army won't' be raised.
You helped motivate me to stay on this diet. Thanks.

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