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Posted 5/26/2022 12:50 PM (GMT -5)
Lately, tiny spots that cause the skin to sting around it have be hitting in different areas. Had one on my foot, one on my chest and one on leg. To add to the confusion, made myself mow the yard yesterday felt two painful, stinging spots that turned to welts. They weren't yellow jackets but felt similar to their sting. Odd part was one was on my ankle under the sock like. The other was on left side of chest under shirt.

My ankle became swollen and my chest area just a little. But those were different than the stinging spots I first mentioned. In addition, my feet have been hurting underneath when I walk. That is a classic Bart symptom, I think, but I've also been diagnosed with large fiber (and I assume small fiber) neuropathy.

Could Bart cause the stinging, or what could? The large-fiber neuropathy creates questions with the Bart, which causes small fiber.
Posted 5/26/2022 1:25 PM (GMT -5)
RW i wouldn't rule out the large fibre neuropathy from bart

i know small fibre neuropathy is more common - but we do not yet know the mechanism by which it causes small fibre neuropathy - so there is no reason it cant cause large fibre neuropathy also

not sure what the stinging sensations could be due to specifically - could be lyme or bart

my partner had all sorts of burning, stinging, and hypersensitive skin patches from lyme/bart

i have also woken in the night thinking for sure something is biting me - only to find no sign at all

if there is no mark on the skin it could just be very localised attack of some sort on the tiny ending of the nerve itself - causing it to fire and send the sensations of bite/sting - pin prick etc to the brain
Posted 5/26/2022 3:56 PM (GMT -5)
When I went to the neurologist, she only checked for large fiber neuropathy. Not sure why she didn't go ahead and do a biopsy for small fiber, too. She also had me buy $150.00 worth of a "special" B vitamin mix. Not sure why as my B-12 was at 680 the week before going to her. Or why we simply didn't test levels of other B vitamins. Obviously, she is thinking a B vitamin deficiency is causing the neuropathy, but simply checking the Bs would have been a quick and easy way to verify that? It's been three months now taking them.

Garzie - It's gotten where all that is going on is becoming overwhelming trying to dig out of this. Just saw the rheumy I go to, and he suggested Methotrexate for the Sjogrens Syndrome. He is a good guy trying to find solutions since insurance denied best chance with IVIG. But Methotrexate is not only a concern for Lyme/Bart, but also kidneys. Seems every turn has a stop sign waiting.

I had the stinging bumps a long time ago, and it seems to come with other symptoms, like the afternoon fevers, fatigue, etc... No doubt it is something flaring up. No one knows what it is, though There are now other "bumps" coming up that do not itch. That is new today.

If I can get my stomach back under control, will go back to Hydroxychloroquine, doxycycline and houttuynia.
Posted 5/26/2022 5:07 PM (GMT -5)
Sorry to be a broken record, RW, but I get those stinging sensations and other neuropathy symptoms (plus flushing, fatigue, headaches, brain fog, etc.) from flares of mast cell activation syndrome. Just throwing that out there, since I don't get them anymore, and never had IVIG.
Posted 5/26/2022 5:46 PM (GMT -5)
Sorry you’re not feeling well RW. You should see Dr Younger for the IVIg.

Also, did you see my post on ARA-290? It works really well for SFN and quickly
Posted 5/26/2022 5:58 PM (GMT -5)
RW in regards to the vitamin B mix, are you sure this isn't a niacin flush? I've had a few after taking B vitamins and it makes me tingle under my skin. It's a very strange sensation.

Not saying it can't be the other things people mentioned, but just throwing this out there.
Posted 5/26/2022 10:45 PM (GMT -5)
I have been getting whelps from insect bites, too. I think it’s from mosquitoes, but I am not positive. I have seen horse flies around. I didn’t get bothered much by mosquitoes for a few years and then I started getting big whelps around the time I got sicker.. Then when I lived with the relative, I stopped getting whelps. I wondered if it was different breeds of mosquitos. Anyway, now I am getting whelps again. They hurt at first but fade away in a reasonably short time.

The no-see um bites are much worse. They leave tiny dots that hurt and itch for days to weeks. Those little demons will bite repeatedly and are nearly impossible to kill. If they get in your house or car, it can get brutal.

Do the stings leave tiny bumps that go away? That could be hives. I had that a lot during the onset of my symptoms.
Posted 5/27/2022 5:35 AM (GMT -5)

running wild said...


Garzie - It's gotten where all that is going on is becoming overwhelming trying to dig out of this. Just saw the rheumy I go to, and he suggested Methotrexate for the Sjogrens Syndrome. He is a good guy trying to find solutions since insurance denied best chance with IVIG. But Methotrexate is not only a concern for Lyme/Bart, but also kidneys. Seems every turn has a stop sign waiting.

RW - i think its important to manage the mental and psychological components of such a stressful and demanding process as being chronically ill - or things can spiral in our minds

i also have lots of skin issues, which are disfiguring in places, and if i focus on them its rather depressing - so i know how distressing they can be and i do not wish to minimise them - but then again, in the scheme of things its relatively small beer - and other things like:
whether i can do work and earn a living,
whether i can pursue any interests or social life,
whether i can do anything to make a contribution to others
Are more important to my overall wellbeing, and are not dependent on my skin (or some of the other symptoms for that matter) - so that kind of perspective can help keep things in proportion

i also find i have to work at keeping focus on the things that i can do something about - rather than the unknowns, the things that i cannot control or the things that may or may not happen etc.

this takes effort and is really about forming and strengthening that habit over time - a bit like training a muscle or honing ones physical skills - we have to walk before we can run - and it takes time - but i find it really helps me to stay focussed and put my efforts into the things that are likely to move me forward - and loose less time to worry or burnout from feelings of hopelessness, which i'm sure we all experience from time to time

hope something here is of at least a little help
Posted 5/27/2022 8:58 AM (GMT -5)
Good call on the niacin flush possibility, Rainy. I got my first niacin flush a few months ago, and it was so bizarre! Strangely I had been taking that form of niacin for a long time without issue, but apparently an empty stomach can make it more likely? I got lots of pins-and-needles sensations, plus headache, flushing, feeling tired, etc. Ugh. Worth considering with new B vitamins (forms, dosages, etc.), for sure.
Posted 5/27/2022 2:45 PM (GMT -5)
saraeli - I thought of you with the skin symptoms and itching/stinging because of mast cell activation. The only symptom I am experiencing now is the skin stuff. Headaches have been much better over last week or so. But there are odd bumps and skin sensations. with stinging. The stinging is mostly in my feet.

dcd - I saw the post and will go back again to it. When I first looked at it, was very dizzy feeling and stopped using eyes on anything. Will look immediately after this.

WBF - "The no-see um bites are much worse. They leave tiny dots that hurt and itch for days to weeks."
That is a perfect way you described it. I was mowing the yard when it started, but never felt a sting moment. Just started hurting on chest and ankle. The ankle became swollen, and chest just was painful from sting. Both are much better, but lingering pain.

Before that, I had a tiny spot (bump) on my foot that would sting at night. That would fit hives, but there have only been a couple. I don't know what is neuropathy and what is something else.

Garzie - Your thoughts are spot on. Before I was worried now things looked. Now it's just working to get rid of neuropathy, or at least make it better. While the one doctor did try to get IVIG (it is known to help Sjogrens), most of the doctors only talk about lowering symptoms. I want to try and treat the cause and see if it works. It is the adding of, yet, another problem (neuropathy) that has me torqued more. Your points are well taken.

Rainiy - You taught me a new term with "niacin flush." Is it B vitamins that cause that or other Bs as well. The mix does not have B3 in it. The ingredients are 2.8mgs of Folic Acid, 25mgs of B6 and 2mgs of B12. I take only half of that because of kidneys. It is supposed to be for diabetic neuropathy, which I don't have. That I don't understand. In the three months of having it, things have only gotten worse.

Sorry so long.
Posted 5/29/2022 4:31 AM (GMT -5)
Thanks saraeli! 🙂 Yes I got the pins and needles too, it was very strange and uncomfortable.

Hey running wild!,

I have not heard of other B vitamins causing a niacin flush or similar. However, it would not surprise me if they are causing similar issues. I always feel a bit off after taking B vitamins and for some reason my vitamin B12 was pretty high even though I hadn't supplemented it in a long time. I do recall that sometimes B vitamins can be high for other reasons but I forgot what they were. Makes me wonder if you're overdoing it with the mix? I would personally stop for a while and see how it makes you feel. Hope you'll feel better soon.
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