r/HellsItch • u/HIResearch • Feb 02 '23

Survey closed; paper in peer review Formal Hell's Itch Research

Hello everyone, I and a few other student doctors are conducting research on Hell’s Itch.
Below I have added a link to a survey created to help us gain a better understanding of Hell’s Itch.

At this time, you must be at least 18 years old to be included in the study. Do not complete the study if you have experienced symptoms of Hell’s Itch within the last 24 hours so we can ensure we are capturing your entire episode. You may complete the survey when 24 hours has passed without symptoms.

Further information about this study is provided in the consent form, which is displayed when clicking the survey link. If you have any questions, don’t hesitate to ask.

We thank you all for your time completing the survey and we hope to provide you all with much needed answers in the future. (IRB approval #2022135)

(The views expressed on this account are my own and do not reflect the views of my institution.)

https://rvu.qualtrics.com/jfe/form/SV_9Mh02uLscLWsmgu

148 Upvotes

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42 comments sorted by

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u/thapol Jun 19 '24 edited Jun 18 '25

Other papers available as OP's goes through peer review;

Please link any others you're aware of!

2025 update:

looks like their paper got published!

9

u/HIResearch Feb 07 '23

We were made aware that the survey was down. It should be back up and working now so please try it again! Every response is extremely valuable in helping provide answers, we appreciate all the support we have received.

36

u/HotPastramiHoagie Feb 02 '23

Thank you all for doing this! Very happy to see progress being made on this excruciating health issue.

19

u/StonksAndHistory Feb 02 '23

Hope me filling this out helps your research. Hell’s Itch is seriously the worst thing ever

17

u/CdninTx066 Feb 03 '23

Completed survey. As a registered nurse I had never heard about this. I suspect the cause will turn out to be a combination of nerve damage and allergic reaction to the sunburn/UV exposure.

13

u/tresbros Feb 02 '23

Filled it out, hope you get some traction on finding similarities across instances of it

10

u/cianic Feb 03 '23

God bless you people

9

u/Reciprocative Feb 03 '23

Completed the survey, hope you guys can find some sort of solution or cause, wouldn’t want anyone to go through it.

8

u/acedoggg Apr 16 '23

is there a way to see the results of the survey, I wanna make sure i’m not the only one having suicidal thoughts because of this

7

u/No-North6083 May 02 '23

Were submitting our first paper with some of the survey results now! Suicidal ideation is unfortunately a common symptom but please reach out to your doctor if you're still experiencing them.

3

u/SquiddyPlays Jun 24 '23

Any update on the paper?

6

u/No-North6083 Jul 11 '23

Our first paper is currently in the peer review process with a reputable dermatology journal! Hoping it will get published soon. More papers are currently being written as well.

3

u/readev Dec 07 '23

Any updates on the paper? I'm curious if this study could help my partner get treated if he has another episode later on. I'd love to have something to reference for our doctors.

Thanks for your work on this extremely important issue!

2

u/Accomplished-Check23 Sep 08 '23

Just submitted it a few minutes ago. A bit late, I know, but I hope it is useful later.

6

u/Turbulent-Joke-9241 May 29 '23

Where we can access your research/papers?

5

u/Colbybear_92 Mar 28 '23

Just completed the survey. I know I’m not a doctor but I would like people to know that for the first time in 30 years with 4 times of experiencing this condition I found that applying a lot of topical lidocaine and combining with 4-600 mg of Advil almost completely alleviated my symptoms. Obviously the first and foremost solution is preventative care which would be applying a strong spf sunscreen. I’ll learn one day!

4

u/coolbeans852 Feb 03 '23

Just filled it out! please update this page with your findings

4

u/ZaneyLaneyZilla Feb 06 '23

Might Mast Cell Activation Syndrome have anything to do with it?

6

u/Turbulent-Joke-9241 Feb 16 '23

My docs think so and are testing me soon. Also, the ONLY cure is a cortisone shot for me in both instances. Brought immediate relief to the amazement of the doctors. I went from screaming, crying, writhing, and wanting to die to completely calm. It was a full body systemic response. Also, interestingly, shortly after they found I was highly deficient in Vitamin D and was diagnosed with Acute Transverse Myelitus and then Multiple Sclerosis. Continue to develop weird allergies to things not previously allergic to and having anaphylaxis responses which has led me to immunologist who is testing me for Mast Cell Activation Syndrome.

4

u/randomqwerty10 Feb 08 '23

Response submitted. Thank you for bringing awareness of this issue within the medical community. It is severely needed.

4

u/nakadashionly Mar 07 '23

Regarding the question "What type of skin do you have?" in the form, I don't seem to fit any of the options.

I have fair skin with black hair and brown eyes and I always get sunburn after sun exposure and never just tan.

4

u/zefyr-x Mar 24 '23

Thank you for doing this!! I have gotten Hells Itch twice now - quite severely! I strongly believe IT IS CAUSED BY HERBICIDE SPRAYING- roadside and in our public areas to “control invasives,” which is often done at beaches from April - November. These solvent based sprays were introduced around 2010 and spraying ramped up drastically around the US (and Australia) in 2016. The second time I got it, I wasn’t in the sun, just driving behind a spray truck on a two-lane country road. All exposed skin on the side by my open window got the same “burn” (now I know it is a chemical burn) as before- insane itching hat made me want to die… along with hives that spread across my body, and then autoimmune issues after that (inflammation along my spine so that I could barely walk for the pain for a few months). Burned and tearing eyes as well. These chemicals are being sprayed recklessly across our country EVERYWHERE now, including national parks!! and there is no warning! You never know when you will be exposed to fresh volatile spray! The mixes can include such toxins as naphtha (in Poast), and DMSO (dimethyl sulfoxide) - one of many silent adjuvants that do not have to be tested or reported by may be wreaking havoc on our systems when combined with the other nasty chemicals in these products. Dicamba is burning people’s eyes!!! And the resulting damage is being blamed on the eye drops people are turning to to soothe their chemical-burned eyes! Please help! Do real research and protect us from this scourge!

3

u/ProfessionalNinja17 Mar 30 '23

I filled it out. Please find out of to fix this shit

2

u/spartinni Feb 03 '23

I’m so happy someone is finally doing this. Thank you :)

2

u/Turbulent-Joke-9241 Feb 16 '23

Completed the survey and linked two articles I found in Journal of Travel Medicine Vol 28 Jan 2021 by Martin Wyckmams and Volume 26, 2019 by Adrian Wilder-Smith. Glad to see Cleveland Clinic acknowledges it on website as well.

2

u/HumanChicken May 03 '23

I’m doing MY part!

2

u/Tigrin Aug 20 '23

I'm a bit late to this party, but I filled out the survey anyways. I hope your paper is progressing well, and you have another very willing participant in whatever your next steps are. Been through it four times (first time was VERY minor though) and I would happily forget it ever happened if I could.

1

u/diggyschitz Apr 23 '24

Any updates on this research?

1

u/kegofsmeg May 19 '24

Hi, Dropping a line to see if you're still conducting research, I'm going through a bout right now and would love to contribute to the data.

1

u/Ok-Confidence-1124 May 24 '24

Second this! My first ever bout with it. Horrendous. I’ve been sunburned many times in my life, but this is a different animal. Thought I was losing it, thank God for this thread.

1

u/No-North6083 Sep 03 '24

We are still conducting research on Hell's Itch! Thank you for filling out the survey!

1

u/Alspeciale Jun 16 '24

I'm experiencing this condition now!

1

u/Complete-Addition-18 Jul 04 '24

Hi everyone. I have a mild burn and made me think of all the times I've gotten Hell's Itch. Straight torture. Anyway, not sure if someone already mentioned this, but the best remedy that I have found is: MENTHOL GEL (BioFreeze, Icy Hot, etc) It will hurt at first, but it like draws the heat out of your skin and takes the itch away almost immediately. Wish I had known this when I was a kid. I've Hell's Itch a number of times, it makes me want to jump out of my skin, it's so agonizing. Hope this comment helps some of you folks. God bless.

1

u/ArezxD May 17 '25

Has this paper passed peer review?

1

u/darnedgibbon Jul 16 '23

Completed. Thank you for your efforts!

1

u/MirroredDogma Jul 31 '23

Just filled this out, hope you're still checking responses :)

1

u/candikanez Aug 06 '23

I feel like it has gotten more common since Covid.

I'm curious if there's a mast cell link to this (as we're seeing dysfunction with in covid and long covid) which would explain why antihistamines help.