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

I wondered about why more women post here and decided women are more into blogging- sharing what we have learned and also needing to off load when miserable.

Jump to this post

I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked for me. It’s a cream called Miracle Oil - Tea Tree Creme. I used it twice a day for two weeks on my stomach and then once in the morning thereafter. The red itchy bumps are 90% gone. The key ingredients are the tea tree oil and hemp seed oil, I believe they kill the demodex mites which is linked to Grover’s. The cream is available without a prescription. It’s a great moisturizer too. Give it a try, my GD started getting better almost immediately.

Jump to this post

You got my attention when you mentioned fiberglass-like pain. All your issues- burning, itching and fiberglass pain pretty much sums it up for me too. My first outbreak lasted a year, how long was yours? I too hope you are at the end of this breakout, sadly for most of us it comes and goes. For me steroids never helped with GD.
I have resumed my normal outdoor activities as I am in remission, but I have avoided taking hot baths in my bubble tub out of fear. Because I also have another form of eczema avoid all treated water like pools or hot tubs. Hot water when GD is active for me hurts along with heat, sweat and friction
Have you read this entire blog. Really crucial information was shared around Feb of 2019, read all our posts as finally I found something that has helped me.

Jump to this post

What most Grover's ladies do is remove the bra as soon as possible at home and some just go braless in public if they can get away with it. I have found 100% cotton without the wrinkle free chemical process or stainguard chemicals or 100% polyester camp style shirts which are safe for me, those with 2 pockets over the breast do a fine job of covering the bralessness, but I am small busted. Also with Grover's either find some soft cotton loose fitting Hawaiian style Mu Mu's, grandma style housedresses. They are simple to sew your own as I first tried to order online the fabric was too coarse for my sensitive skin. The gathering of this style house dress allows me to go bra free without anyone noticing. The looser your clothing is the better. My image will become secondary to desire to live pain free. . Grover's is triggered by heat, sweat and friction/pressure. For a light cotton which is safe for me I order from The White Cotton Gown my nighties. 100% cotton, well made and airy, but they hold up for years. I'd had mine for 3 years and still no sign of wear. At the end of the day I love to put this nighty on even the lace is 100% cotton. I also have Allergic Contact Dermatitis and am allergic to elastics, spandex and blended fibers. Even my bras are 100% cotton with drawstring closures. If you are large busted this would be a problem. There are also 100% cotton panties sold at Cottonique, on line, with the drawstring closure. The main thing is now no pressure, so no tight elastic around your waist, torso and definitely no underwires. Grover's normally is located in front and back torso and has gotten as low as my waist in the back. This may sound shocking, but my gynecologist told me years ago to give up all panties as they trap heat and will breed yeast, an ongoing issue I have for a decade. I often wear a 100% cotton long slip under the mu mu's at home without the panties and yes my yeast issues have been minimal if at all. Yet I have also eliminated my diet which was rich in the fruit that breed yeast, so sad, but now eat safe fruit only. Also you mentioned Victoria Secret. First none of their fibers are safe for me, let alone the chemicals they add to their clothing. Also the underwire pressure will trigger your Grover's. Hang loose sister! I know Facebook has a Grover's site, but I don't have time for Facebook, but you would learn more from others.

Jump to this post

Thank you for your post. Its so good to know that It gets better! I had my first episode in the fall. That’s when I was diagnosed. It improved after 2 weeks of the triamcinolone. Then just about 2 weeks ago it started up again. I have been reading more about it and am avoiding triggers but just couldn’t take it anymore so I broke down and started the steroid again about 3 days ago. I have improved some so I would like to discontinue it. I’d prefer to avoid it as much as possible due to potential side effects. But I am afraid if I stop too soon symptoms will return. I understand the issue with heat, sweat, and the friction. I could hardly stand to have any clothing touch my back! I made a loose halter top out of a cut up and safety pinned beach towel to wear around the house! I have had to use cold packs to cool off just laying in bed! I am so grateful to have found this site! I will look up the posts you referred to. Thank you for the advice. In the meantime, if you are open to sharing what worked for you I would love to know. How long did it take for symptoms to resolve completely? When did you resume your outdoor activities? Thank you again for sharing.

Jump to this post

You are lucky the steroid is helping you as I found nothing really made any noticeable difference until I tried drinking a daily cilantro smoothie. That subject is covered in the posts I mentioned. From all I have read it helps about 50% of us. Cilantro is a heavy metal detox and heavy metals are tied to Grover's and Parkinson's (my brother has Parkinson's). They say GD is not heredity or contagious but one of my sisters also has GD.
I am obsessive about being outdoors and never totally gave going outside even in summer when my breakouts were bad. What I did was try to get outside by 6:00 am and in by 10:00 am. I did find I would need to give myself a day off and stay inside every few days. Heat, sweat and friction are triggers for most but I have also started a breakout in January so for me the rules often don't apply.
Once inside the bra comes off in fact all underwear does(can't stand anything around the waist) and I wear old lady 100% cotton house dresses inside. Never ever thought I would dress like this, yet when symptomatic like you mentioned our skin hurts all the time and tight clothing really hurts.
My symptoms never totally go away. Our skin is permanently changed, our collagen has separated and our cellular structure is not tight anymore. I always have a few scabs or small bumps especially along my lower spine. I got excited thinking they had all fallen off the other day but they had just sloughed off and are back in the same places. Maybe only 10. When broken out I can have hundreds and maybe a thousand. If I press my skin on my upper back I can feel little bumps under the skin. I know they are just waiting, even though they don't itch now. Although I have had this now for at least 5 years be hopeful in that the 1st breakout is usually the longest and more excruciating. My subsequent breakouts normally lasted about 5- 6 months until I started with the cilantro.
Because of cilantro I have broken my re-occurrence cycle and been clear for 1 year now, except for a rash mistakenly assumed to be GD as it was on my lower back torso and my derm said it was 100% related to the adult shingles vaccine I had gotten earlier in the week. The rash was more plaque like in appearance and not my usually hundreds of little bumps. It went away after 2 months. It felt very similar, yet not as bad as GD, but shingles is reported to feel much like GD.
I do wonder about those that have success with steroids. Often when they stop them the GD comes back with a vengeance. It seems it needs to run it's course and it can be delayed or stalled but then catches up when off steroids.
Keep searching the internet, have heard Facebook has a good site, but this site has been helpful for me. If it hadn't been this site I would have never learned about cilantro.

Jump to this post

@gardeningjunkie-you say(said)"Because of this site we have read that cilantro works as a heavy metal detox ". I have posted on this blog but my posts didn't appear until much later. Here's my point, big or nothing at all: Everyone here in the 'Cilantro Club' has been experiencing results, mostly good, or even mildly good, which as a sufferer from GD is a god send. I'm one too. I'm writing this during the CoVid-19 Lockdown so access to fruits, Veg's etc. is not always easy. On to my query: Has anyone here ever thought that maybe, just maybe, the 'cause' of their GD could be related to a heavy metal presence in their body/blood? And maybe, just maybe since Cilantro is known to help remove toxic heavy metals, that is the reason for the vast improvements people are experiencing? I had a Total Knee Replacement done in 2018, and in 2019 I developed a rash at the site of the operated knee. Recently I opted to have a metal sensitivity test done and found that my Aluminum level was way high, over the High level even. To-date there is no explanation as to how and why. BUT in Jan. 2020 I started a new rash, thinking it was related to the other, but it turned out to be (via Biopsy) Grover's. I still don't know how my Alum. level came to be so high so I am about to 'gasp' try the Cilantro route and if it works and IF my Alum. levels also decline, then there could be a definite co-relation between GD & Heavy Metals. Just sayin'. My GD is restrictive, and intereferes with my daily life and activities, sleep especially as I now am lucky to get 3-4 hours of sleep a night. Itch/Scratch etc.

Jump to this post

I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked for me. It’s a cream called Miracle Oil - Tea Tree Creme. I used it twice a day for two weeks on my stomach and then once in the morning thereafter. The red itchy bumps are 90% gone. The key ingredients are the tea tree oil and hemp seed oil, I believe they kill the demodex mites which is linked to Grover’s. The cream is available without a prescription. It’s a great moisturizer too. Give it a try, my GD started getting better almost immediately.

Jump to this post

Thank you for that. I had never heard of these mites. One more avenue of investigation. While tea tree oil may be helpful, one study looked at peppermint oil and salvia oil applied at 100% strength. These essential oils killed mites within 10-15 minutes. Oils feed the mites. The recommended essential oils are applied after alcohol is topically applied. I’m going to try these oils. I am grateful for this new (to me) information.

Jump to this post

Lots of info about GD tied to heavy metals, Google it. You have limited options because of implant but it sure couldn't hurt you to try the cilantro. My only negative side effect after consuming 1/2 large bunch daily for 9 months was some darkening of pigment spots on my cheeks. Reading on the internet this can happen when consuming too much cilantro. I gave it up at that time because I thought I was getting another GD recurrence so why take it , but turned out my rash was a reaction to the Shingrex vaccine. Once this reaction cleared up in about 2 months I didn't go back on cilantro. Still in remission and am gardening about 5 hours a day right now, but temps have been comfortable so not sweating yet. I'm realistic, I know it will return someday but it's been a year now.

Jump to this post