Read some posts (thanks everyone! - this forum is so helpful) on sweating and this:
healthline.com/health/auton...
so I guess my Rheumie will be jumping out his chair again when I suggest autonomic neuropathy and how I've started needing to pee in the night, very unusual for me since I sweat out most of my fluid intake! LOL 😓 mo xxx
I will be interested in hearing what your doctor says about the possibility of autonomic dysfunction. It is an area that is getting a lot more attention recently. It can be hard to diagnose but there are tests that help. Do you have other symptoms? Do you feel dizzy when you stand up? Good you are pursuing this. Please keep us posted.
Thanks for that...I'm compiling a list of things going wrong - some have become my 'normal' over the years - for doctors to look at. Ones that might be autonomic are digestive problems, choking when eating, non-reactive pupils, muscle weakness in my arms, on top of the aforementioned sweating and peeing. I've only been dizzy standing up a couple of times. Might be six months before I see my Rheumie again! 🙄xxx
My doctors were able to link my IBS to the automotic dysfunction. It has helped me to have refined the diagnosis. The nerves can become damaged slowly in autoimmune diseases and more research being done. If you are interested, I would share with you what has helped with the g.i. issues. Do you have trouble tolerating heat and humidity? I hope you get some answers. The autonomic system controls a lot and dysfunction is hard to live with.
Thanks very much, yes some help with the GI would be GREAT! My gut is the first to react when I flare and long before diagnosis I had times of dramatic swelling (waistline growing 25% bigger than usual over the course of a couple of days !!) which I know now is inflammation, plus Candida overgrowth causing fermentation and accompanying explosive wind. Now when I feel I'm blowing up, I stop eating (except sauerkraut and kefir) and chew on raw garlic to kill the yeast. And people wonder why I'm single...🤪 Great to have your support xxx
What helped me were the recommendations from the HeatherIBS site. I bought the Acia fibre because I never could tolerate the other brands and started very slowly as Heather suggests. I also cut out all raw fruits and vegetables. When I went for the consultation with the gastroenterologist I was already feeling more normal than I had in years. She validated for me that, indeed, raw fruits and vegetables are hard to digest and said the Acia fibre, although she was not familiar with that type, is very important. She suspected my problems were connected to the orthostatic hypotension. In recent years I have become heat intolerant and have a bizarre itching along with facial flushing. These were all eventually tied to autonomic dysfunction from nerve damage from autoimmune disease. I am on a high salt diet, which has helped a lot. If you feeling light-headed, having trouble lifting heavy objects or experiencing heat intolerance, this may be autonomic-related. Autonomic dysfunction is really tricky and hard to diagnose sometimes. Good you are alerting your doctor. Just be patient with your doctors and know they have means of diagnosing this issue. Hope this helps. Write any time.
Thanks very much! The HeatherIBS site has LOADS of useful info. I'm going to give Acia fibre a go...and remember not to eat aubergine (forgot it's a nightshade...was reminded the next morning 😖). My teeth won't allow raw veg...
I do suffer in heat and humidity (seem to be 10 degrees warmer than everyone else), and sometime feel light-headed - and/or vacant, hey-ho - and lifting or even raising my arms is hard but that might be my squinty skeleton. Lovely to have you to help me along, great you've reached a decent 'normal' (disautomonia-wise at least), stay well mo xxx
I just sent a response but lost WiFi connection 🙄
Will he be jumping out of chair in surprise or interest?!
I was recently sent to an autonomic dysfunction specialist who noted my ‘increased sudomotor reflex’ (had to google - he was kindly saying I’m sweaty! 😂) I’ve had loads of autonomic issues, seems to come with a general nervous system attack. Same as you with pupils not reacting, digestion, swallowing, choking and eating difficulties but the worst by far was the heart rate increase on standing - sometimes to 180 bpm. I was hospitalised in the end because I just kept blacking out and landing straight on my face - I was not a pretty sight!
If it’s any comfort, after rituximab, methotrexate and constant steroids the ‘normal’ lupus is in remission and the autonomic side of things has followed it which was such a relief because I was worried that the damage would be permanent.
Do you have any brain fog, weakness/ pins and needles in limbs, coordination difficulties, headaches etc?
Definitely good to keep a list for your rheumy. Is he good and will listen?
X
My Rheumy is of nervous disposition - he jumped out his chair last week when I suggested vasculitis as the possible cause of my nose/sinus problems, then found the unread ENT letters at the back of his folder...oh my word, the black-outs must have been very frightening but very glad to hear the dysautomonia has subsided with the lupus. Hope you have no permanent damage from falling 🤕 XOX.
Yes, I forgot about my brain fog 🤔...and I've always been clumsy, though this could have several causes.
I have a small-town Rheumy who isn't much interested unless there's a chance of him being sued..
May your flares stay away and be mild if they must be! xxx
Wow very scary sounds like diary .xx
I'm working up to a spreadsheet.. 😵 xxx
Yeah. It stinks. I was told I have hyper hyperhydrosis*, due to Vasculitis, due to Lupus.. Neverends for us sometimes.The Systemic Vasculitis is a nightmare imo. 🤔🙏😘💓😜Ali
Thanks for the that No-longer-lonelyone, a fanTASTic prompt as I'm off to talk about possible vasculitis in the form of a deformed nose with ENT tomorrow! I will add it to my list! xxx
Yw! Odd, we have some same issues, I just also had back to back 2different sinus surgerys? Due to problems? 🤔 Interesting? 😘🤪🤯🙊🤐🧐🧐😳😁💓Ali
EEK! I thought I had a unicorn nose!! Someone similar! 🙌🙌🙌🙌🙌
I've been anxiously relating my nose story here!
healthunlocked.com/lupusuk/...
I've go to go just now, but it would be just fabulous to hear more of your issues! 😁 😚😍 mo xxx
💓👍🤪🤗
Hi! 👋 I'd love 😍 to hear more about your vasculitis journey....did it start with sinuses? was the surgery to remove inflammation? do you have nasal cartilage damage? have you had biopsies? 🎢🛫🏍
The calcified inflammation in my nasal cavity is perfectly oval and would seem to be very close to one of the arteries...uh-o, sounds like granulamatosis ☹️ but that was on an x-ray from 2007. It might have grown into something else now..
Tomorrow I'm going to ask the kind ENT consultant to hold on nasal/septal biopsies, confer with rhinoplasty surgeon on timescale for a decision (if it went ahead, biopsies could be done then), order another x-ray and/or other imaging....and - the hard bit - get a referral to a vasculitis specialist (it would be a different NHS Board, always tricky)
That wouldn't be unreasonable? Given I first went to my GP 🤡 about my nose in 2004? 🤨😪😉
I'm SO HAPPY I'm more of a zebra 🦓 than I thought!.. and so glad you started posting!!! 🌟🌻💎☯️💖 mo xxx
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