I have been doing weekly injections since October and will most likely be doing them twice a week as soon as I see my neurologist. My neuropathy is so much better but just can’t quite get it out of my feet.
My question is this…do you experience worsening neuropathy with big weather changes? Usually when I inject on Saturday I’m pretty good until Tuesday/Wednesday but I’ve noticed that when the temperature drops drastically or we have a storm front moving through my neuropathy seems to kick up a bit extra. Yesterday it was 70 (Fahrenheit) and today it is 40 and boys have my feet been painful!
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lambuth_eagle
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Yes, absolutely. I can usually tell when we are going to get a change, like windy weather or low pressure as I start to get increased pain and then as the weather front hits I get dizzy, nausea, poorer digestion, less steady on feet, brain fog, headache, joint pain etc. If it continues for long, palpitations, sometimes swelling esp fingers, then itching and dry skin on the swollen bits and worse joint pain, plus more obviously high histamine like running nose, sneezing, burning mouth, food and smell reactions, rashes. I'm fairly sure that for me it is some kind of mast cell dysregulation, which would make sense with PA as it affects gut which has a lot of mast cells. And it is common with autoimmune conditions to have some level of dysfunction, even if it is not full blown MCAS. A few doctors say that the nerve and mast cell are so closely interlinked that they should be considered as one unit, but of course they don't all agree. I don't (I think) have PA, but am the 5th of 6 known generations of either PA or B12D and also have small fibre neuropathy, vitiligo, thyroid dyfunction, Raynaud's. This is a useful mast cell site but there are lots mastattack.org/2014/10/mcas... I use vitamin C, zinc and foods like parsley, watercress, EV olive oil, plus magnesium spray on skin and quercetin (which is also in watercress, onions, apples, berries). I try to eat low histamine too if I know it is coming, so I go easy on the meat/fish/walnuts/bananas/spinach etc. Just a thought. (And it isn't just weather - vibration, MRIs, stress of any kind can all do it for me. tmsforacure.org/symptoms/sy... Best wishes
Yes, I’m susceptible too. Cold weather plays havoc with me. I’m always in a few layers of thermals from October until March.
Now that I can, I will ‘stagger’ into the gym. My body temp rises, I’ve got about 20 mins (depending on the setting of their air con) of normal movement.
I’ve explained to the staff because they are amazed when they see me on the running machine, walking normally. Then when I overheat, I might feel faint, get air hungry, I’ll sit down, then ‘stagger’ out.
Vibrations - whenever I brush my teeth with an electric tooth brush, I need to pass water.
I’m similar to bookish, Raynaurd’s, coeliac (lactose), vitiligo, histamine issues. No idea of family history though.
How interesting about the toothbrush. I tried an electric years ago when I started having hand and arm problems but it just made it worse, so I stopped. And me too re gluten - grain free and dairy free, at least gluten intolerant, likely since childhood, found by chance in my 50s, so too late to do a proper Coeliac check and can't afford genetic x
So, I am a self-confessed geek and wanted to know a bit more. So, from our bodies there is a special pathway to a particular region of the brain that carries information of pain, temperature and touch (there’s two types of touch apparently, crude - meaning non distinguishable in this pathway).
This pathway is called the spinothalamic tract. Spino - obviously spine, thalamic to the thalamus - particular region of the fore brain.
There’s another pathway called the dorsal column–medial lemniscus pathway or DCML
Dorsal, think dolphin, so back,
column (of the spine)
medial (middle)
lemniscus - bundle of fibres in the brain stem. The fibres have protective covering of myelin, B12 is important for myelin.
The DCML is the pathway for vibration, fine touch and where our bodies are in time and space (Proprioception) and a bit more.
Hope that’s of some use to anyone. Bookish, I am sorry to hear about electric toothbrush exacerbating symptoms but look how susceptible we can be to minute environmental changes.
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