I should probably mention that like the woman in 1st case report, I also have MCAS symptoms, as well as other pain and paresthesia in my hands and elsewhere. I had a colonoscopy a few months after this started and for the prep I ate mostly just white rice and tapioca - no fruit or veg. I felt much, much better on the colonoscopy prep diet. Since then my diet has become quite restricted as I noticed more pain when I ate cruciferous veg, alliums, legumes - lots of stuff.

So it is possible some of my erythromelalgia symptom improvement is due to having a limited diet - which is probably not so great for long term health overall.

I have wondered if there is TRP channel involvement since isothiocyanates and other food components can activate TRP channels, as can heat exposure.

Then there is the possibility of a connection to mast cells to consider.

#TRPchannels #MCAS #erythromelalgia

I finally took a picture of my hand after washing in warm water. The turning-red thing has been going on for a couple of years and it was much worse when it first started - but I could never remember to take a picture back then. I get a bit more brain-foggy than usual when it happens. I think it's erythromelalgia. It used to burn and hurt, but not much, if at all, these days. My feet used to do it, too - either triggered by taking a hot shower or when working in the heat outdoors. That doesn't happen anymore. Maybe the low dose naltrexone helped, or maybe it was just time.

I got the LDN Rx online after reading this case report. The patient had worse symptoms than me (1). I asked for the LDN based on other chronic pain and eczema, since I had diagnoses for those and they are recognized indications for LDN.

I noticed her 2nd and 3rd toes are a bit fused, like mine. Not quite syndactyly. There's another case report on a baby boy with an SCN9A/Nav1.7 mutation who had 2nd and 3rd toe syndactyly along with pain insensitivity. His mother also had the mutation and
2nd and 3rd toe syndactyly, but she had pain hypersensitivity. I have wondered about the difference in phenotype being due to sex differences.

Under 'Treatment' in the 2nd case report, naloxone is discussed as a possibility, but no information is given as to whether the patient was given naloxone or his response.

1 - https://doi.org/10.25251/skin.4.3.15

2 - CW: there are disturbing pictures in this article of injuries to the baby boy's hands caused by him chewing on them.
https://pubmed.ncbi.nlm.nih.gov/30834170/

#erythromelalgia #pain #LowDoseNaltrexone #SCN9A #nociception #SodiumChannels

SKIN The Journal of Cutaneous Medicine

Erythromelalgia is a rare condition that may be associated with a variety of underlying conditions and can be refractory to therapy. We report a case of a patient with mast cell activation syndrome (MCAS) who developed erythromelalgia and responded to low dose naltrexone (LDN).

Animalogic put out an interesting Floralogic episode on the extreme, long-lasting pain caused by gympie gympie - a plant in the same family as stinging nettle -

Gympie Gympie Is Doing Everything It Can To Ruin Your Life
https://youtu.be/kIGQYE8pH_Y?si=4QN-DzBHdRg3OEen

It's an Australian plant, of course.

"Altering the activation threshold, combined with effects upon inactivation, likely leads to nociceptor activation and the sensation of pain, akin to biophysical changes observed in painful conditions associated with NaV1.7 [SCN9A] gain-of-function mutations such as inherited erythromelalgia (IEM) and paroxysmal extreme pain disorder (PEPD), respectively ... As the gympietides bear little similarity to any other known NaV modulators and display unusual effects particularly on NaV inactivation, it is difficult to predict possible binding sites at this point. However, based on activity of animal venom–derived toxins and the biophysics of NaV gating, the extracellular loops of the domain IV voltage sensor could be a possible binding site."
https://doi.org/10.1126/sciadv.abb8828

#Pain #nociception #NaturalProducts #erythromelalgia #gympietides #SodiumChannels #SCN9A

Gympie Gympie Is Doing Everything It Can To Ruin Your Life

YouTube
@Moonbeam I’m also in the #EDS camp with #reynaudssyndrome and #Erythromelalgia.
Erythromelalgia

Find out about erythromelalgia, which is a rare condition that causes episodes of burning pain and redness in the hands and feet, and sometimes the arms, legs, ears and face.

nhs.uk

#Intro (Part 2). I'm #autistic and hard of hearing. I battle #trigeminalneuralgia, #HidradenitisSuppurativa, #MénièresDisease, #rheumatoidarthritis, #CPTSD, #EDS, and #erythromelalgia. I'm a multiple #TBI and #sepsis Survivor. Despite my agony, my urge to photograph, study, and narrate the world around me continues to be my driving force.

I love #StarTrek, #Physics, #Botany, #Cosmology, #astrophysics, #Reading, and hot baths.

Here's where I sell my fine art:
www.hannahcrazyhawk.com

This is interesting! I had been wondering about B5 from a #LongCovid angle, specifically wrt "Covid toes"

I found some WWII-era and earlier studies linking B5 deficiency with similar symptoms to COVID toes. (NB research methodology is... lacking)

Using names such as:
#Erythromelalgia tropicans
Hot foot and hand disease
Nutritional melalgia

I'm wondering if perhaps COVID or Long COVID affect how the body processes B5 🤔

#NEISvoid

https://openbiblio.social/@HWiesenmueller/109369732888823734

Heidrun Wiesenmüller (@[email protected])

Study on #Covid and #VitaminB (accepted paper) Darand, M., Hassanizadeh, S., Martami, F., Shams-rad, S., Mirzaei, M., & Hosseinzadeh, M. (2022). The association between B vitamins and the risk of #COVID-19. British Journal of Nutrition, 1-26. https://doi.org/10.1017/S0007114522003075 "A higher intake of vitamin #B5 could reduce the odds of COVID-19 by 47%, and a moderate intake of vitamin #B12 had a protective effect on COVID-19. Although our study has promising results, stronger clinical studies are needed."

OpenBiblio.Social

@HWiesenmueller

This is interesting! I had been wondering about B5 from a #LongCovid angle, specifically wrt "Covid toes"

I found some WWII-era and earlier studies linking B5 deficiency with similar symptoms to COVID toes

Using names such as:
#Erythromelalgia tropicans
Ignipedites
Causalgesie/causalgia
Hot foot and hand disease
Nutritional melalgia

I'm wondering if perhaps Long COVID causes excess utilization of B5 🤔

https://pubmed.ncbi.nlm.nih.gov/20253668/

The syndrome of burning feet (nutritional melalgia) as a manifestation of nutritional deficiency - PubMed

The syndrome of burning feet (nutritional melalgia) as a manifestation of nutritional deficiency

PubMed