#erythromelalgia — Public Fediverse posts

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 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 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 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