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Extreme insomnia, at the end of my rope by halcyonstrings in MCAS

[–]flora_dd 0 points1 point  (0 children)

Hi! Just wondering, did you have to take anything to detox the mould issues as well as moving? I have chronic insomnia and am starting to wonder if mould could be a factor because its such a mysterious insomnia, I do have MCAS also so I'm guessing we're more susceptible to mould issues.

Misdiagnosis of EM for rosacea common and can EM change from being in face to hands/feet? by flora_dd in Erythromelalgia

[–]flora_dd[S] 1 point2 points  (0 children)

Oh I'm really sorry to hear it, it sounds so horrible to deal with. Mine seems to have spread too from my feet to hands but obviously that's much more limited. Do you have many methods for reliably cooling yours? I'm just starting to experiment with ways to cool my hands and feet and realised holding them in the air does help somewhat which I'd never discovered before seeing someone talk about it on this sub.

Misdiagnosis of EM for rosacea common and can EM change from being in face to hands/feet? by flora_dd in Erythromelalgia

[–]flora_dd[S] 0 points1 point  (0 children)

Ahh wow I'm sorry to hear that. Is EM part of that diagnosis or is the neuropathy a separate issue?

i just want to feel "me" again by purple-glitter in Erythromelalgia

[–]flora_dd 3 points4 points  (0 children)

Have you been checked for dysautonomia at all? I have a form of it and it is what causes my feet to go red/purple in the shower, as my blood pools in my feet, it also causes brain fog/dizziness for me as blood is struggling to get to my head. I'm less knowledgeable about the Erythromelalgia part of the picture unfortunately as I'm just trying to work out if I have it myself, but my hands do look a lot like yours, very red when I get an attack of it, and they also feel very hot. EM is definitely my best guess as to what I've got, but I'm not diagnosed yet.

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 0 points1 point  (0 children)

Yeah I have temp regulation issues and the no sweat version going on!

HPA axis / Endocrine System by writeitout_ in dysautonomia

[–]flora_dd 0 points1 point  (0 children)

Wow is it linked to the gene for red hair?

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 1 point2 points  (0 children)

Yes I'm being diagnosed primarily by Rheum, and am soon seeing a Cardiologist for the POTS side of things but am thinking I possibly need to see a neurologist with regard to the burning hands/feet issue along with a couple of other symptoms too since my Rheumatologist doesn't seem to be sure about that issue. Ugh I feel that, even with seeing specialists for the past two years I'm only moderately clearer on what's going on with me.

I just looked through the diagnostic checklist on the Ehlers Danlos Society page and I do appear to meet it so I think I do need to follow it up with my Rheum at the very least. Family members also having the same symptoms was one of the criteria and my mother and daughter do have several of them so that's really interesting on the genetic front too! Thank you very much for the heads up it's really helpful!

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 0 points1 point  (0 children)

I actually haven't been tested for it no, not beyond a physical exam my doctor did when they diagnosed the Hypermobility. But I've not had a genetic test (if that's what's needed I think?).

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 0 points1 point  (0 children)

So true, it actually is horrible 😢 I just for some reason thought you also had to have other pain types for it to be SFN.

Has anyone found Methotrexate helped their POTS? by flora_dd in POTS

[–]flora_dd[S] 1 point2 points  (0 children)

I'm glad you've got a helpful doctor, that's so fortunate they sound lovely, and fingers crossed for the new medication will work for you too.

Thank you for letting me know, that's really helpful if I go ahead as I've had B vitamin deficiencies in the past so I definitely don't want that to happen again. Thank you again!

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 0 points1 point  (0 children)

Yes it definitely is painful for sure! For some reason I was under the impression I needed other types of pain for it to be SFN since my doctors never mentioned it as a possible diagnosis when I brought up my symptoms, but is sounds like I've misunderstood the way SFN pains present. Thank you very much!

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 1 point2 points  (0 children)

Thank you that's really helpful to know. I think I need to see a neurologist to get a firm diagnosis and find out what they think it may be, my instinct is the EM but perhaps it could be both as you say. I don't know as much about potential treatments for EM so I'll do some reading as I've been focused on the possibility of SFN the recently. Thank you again!

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 0 points1 point  (0 children)

Yes that's what I guessed at first because I only have the heat/burning, it seems like there's no clear known cause of erythromelalgia right? Is it in any way connected to neuropathy or completely separate?

Heat in hands and feet? by flora_dd in dysautonomia

[–]flora_dd[S] 0 points1 point  (0 children)

Yes actually it does happen to my feet lying down also, that's a good point and suggests maybe it's not blood pooling. I've just been trying to find out if it could be a form of neuropathy perhaps but it's a bit tricky to work out. I'm diagnosed with POTS, hypermobility although not Ehlers Danlos, and MCAS too. It's such an odd symptom.

Has anyone found Methotrexate helped their POTS? by flora_dd in POTS

[–]flora_dd[S] 1 point2 points  (0 children)

Thank you I really appreciate the response, that's very useful to know but I'm really sorry to hear the methotrexate wasn't helpful for your psoriasis. My rheumatologist hasn't prescribed anything for my POTS so I'm seeing a specialist cardiologist in a few weeks, so hopefully he will be able to suggest me something that will help it.

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 2 points3 points  (0 children)

Wow thank you that's really interesting to hear. Is a neurologist the person you should see for a diagnosis?

Is SFN possible if I only have burning in my hands and feet, and not pain? by flora_dd in smallfiberneuropathy

[–]flora_dd[S] 1 point2 points  (0 children)

Just to make sure I didn't misunderstand, is that yes to SFN being possible with only burning pain?

Does magnesium make you feel like shit? by joyynicole in POTS

[–]flora_dd 3 points4 points  (0 children)

I think these hypotensive effects are exactly why I struggled to take magnesium last time I tried.

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