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

Sometimes doctors are simply grasping because in truth they know nothing that can help with GD. I wrote up our successes with cilantro and gave it to 2 derms. One was completely uninterested and the other said he would pass it along to other GD patients. I have a friend who goes to the derm who said he would pass it along and he never suggested it to her. If they don't read about it in a medical journal it's simply hearsay to them. Both doctors could see my results but probably figured I was in a dormant period.
You have a common reaction to like most of us with GD. I could even feel my collagen impared skin on my upper back start to raise up bumps when I got hot. It's like our skin is just waiting to explode and on the already errupted areas sweat would cause stinging. I was prescribed ever product mentioned in our blog: Clobetasol, Calcipotriene, steroid shots, steroid topicals, px anti-bacterial washes and had all sorts of OTC anti-itch creams or lotions like Sarna recommended and nothing helped. I do correct that, one derm told me to try Flanax (capsacian- hot chili extract) which I would apply at bedtime, avoiding facial contact to help with itching. After my shower I would use a disposable vinyl glove to apply and remove from the bottle with a Q-tip. If you inadvertently touch your eyes it would burn them. It would burn fiercely on the rash areas for 30 sec, surprisingly the burn was a relief from the itching and pain and then the burn would leave I would get about 30 minutes of itch/pain reduction which gave me time to settle in bed and fall asleep. I think it confused our nerves. I trained myself to sleep only on my side and never move in my sleep. My sides were always clear (no sun exposure?). Moving around in bed would set off the itching and pain to higher levels.
I've never read that not washing with soap helps GD. However what soap you use is important for many reasons. I have 2 other forms of eczema, besides GD. Many of my ACD issues were related to ingredients in most soaps and detergents. All 3 of my forms are in remission right now.
Never assume you only have GD. You could also have Allergic Contact Dermatitis, ACD. Many with eczema have multiple types. I've learned a lot about what we commonly put on our bodies not knowing how toxic the ingredients are and how over time our bodies loose their ability to tolerate them and thus raise up our histamine armies in the attempt to rid ourselves of what they believe is poison. Just like GD is tied to heavy metal poisoning or overloading. That is why the cilantro is helping some of this. Do a GD and heavy metal search. Heavy metals are being tied to Parkinson's and also Alzheimer's. With eczema histamines raise our inflammation levels. Just because a bar soap says it is safe or for sensitive skin means nothing- read all the the ingredients, active and inactive.
You should wash with soap like our ancestors did hundreds of years ago before we started contaminating our grooming products to lather more and smell better. Get a soap made from natural ingredients which are moisturizing. The fewer the ingredients the better. Many use Dove for sensitive skin, I used that for years and was allergic to it! Get a pure soap made the old fashioned way. I can buy a locally made soap which is simply lard and glycerin and is inexpensive. A commercially available one sold on Amazon and a Mayo Skin Safe approved product is Grandma's, a bar soap which is made from lard and lye. The soap building process turns the lye into glycerin. Both lard and glycerin are moisturizing. Until I found shampoos safe for me I even used Grandma's to wash my hair. It does leave the hair heavy feeling, but at least it was clean and it stopped the itching. Also Kiss My Face unscented olive oil soap is wonderful, simply olive oil and salt. It lathers better then Grandma's. It may be unscented but it does have an olive oil scent which when first removed from the wrapper is strong, but fades in time so I leave it unwrapped for a a week or more before use. It is extremely good at both cleaning and moisturizing. Today some liquid hand and body soaps are free of the preservatives that trigger my eczema, that said, most contain preservatives so based on my past experiences I avoid them.
I'm glad to see new members following this blog. We are real people, many of us blogging on this site seeking answers since our doctors weren't any help then we learned about cilantro from Kimass1 so we followed each others progress in experimenting with cilantro. I only do this now to encourage other's to try it, the results for me were amazing. Hope is all we have at times.

What does the doctor do to diagnose you. I believe I have Grovers.

What does the doctor do to diagnose you. I believe I have Grovers.

Biopsy's aren't accurate if you are in remission or if your symptom's are going dormant, My biopsy was negative and my symptom's were classic GD.
I believe much of the information about GD is outdated. I know of 2 other women with GD personally and no men that have it. Women from my area are outdoors and in the sun from an early age and I do believe sun exposure can be a cause. I also find it hard to believe that GD is rare. There are certainly lots of folks blogging about it on this site and others.
I think many are undiagnosed and live with it for years like I did. For 4 years I was told I had heat rash or it was a different form of eczema. I went to 3 different derms before one took one look and identified it immediately.
Glad your are at this site. If your symptom's worsen or return (most of us go through cycles) read this blog from mid Feb 2019 and pay attention to the Kimass1 posting. Because of her research many, like myself, are free of GD today. So little is know about GD no doctor was able to prescribe any treatment to help. I've been clear for almost 2 years now.

Biopsy's aren't accurate if you are in remission or if your symptom's are going dormant, My biopsy was negative and my symptom's were classic GD.
I believe much of the information about GD is outdated. I know of 2 other women with GD personally and no men that have it. Women from my area are outdoors and in the sun from an early age and I do believe sun exposure can be a cause. I also find it hard to believe that GD is rare. There are certainly lots of folks blogging about it on this site and others.
I think many are undiagnosed and live with it for years like I did. For 4 years I was told I had heat rash or it was a different form of eczema. I went to 3 different derms before one took one look and identified it immediately.
Glad your are at this site. If your symptom's worsen or return (most of us go through cycles) read this blog from mid Feb 2019 and pay attention to the Kimass1 posting. Because of her research many, like myself, are free of GD today. So little is know about GD no doctor was able to prescribe any treatment to help. I've been clear for almost 2 years now.

Spot on. (No pun intended, Lol).
Fortunately my GP who recognised the symptoms early and followed up with a biopsy to confirm, also believes that GD is not as rare as is generally mentioned in some quarters.
The Dermatologist I was referred to had, in my opinion, very little understanding of GD and I left with the usual prescription for Corticosteroid cream and a bunch of antihistamines which my Pharmacist could have prescribed.

Biopsy's aren't accurate if you are in remission or if your symptom's are going dormant, My biopsy was negative and my symptom's were classic GD.
I believe much of the information about GD is outdated. I know of 2 other women with GD personally and no men that have it. Women from my area are outdoors and in the sun from an early age and I do believe sun exposure can be a cause. I also find it hard to believe that GD is rare. There are certainly lots of folks blogging about it on this site and others.
I think many are undiagnosed and live with it for years like I did. For 4 years I was told I had heat rash or it was a different form of eczema. I went to 3 different derms before one took one look and identified it immediately.
Glad your are at this site. If your symptom's worsen or return (most of us go through cycles) read this blog from mid Feb 2019 and pay attention to the Kimass1 posting. Because of her research many, like myself, are free of GD today. So little is know about GD no doctor was able to prescribe any treatment to help. I've been clear for almost 2 years now.