So I don’t have a cold, but my nostrils are so painful. They feel extremely dry and each time I move them the pain gets worse, almost like they are really scabby and the movement is pulling on the scabby bits. One side also feels bruised. I can’t see anything noticeable but am wondering if anyone knows why this happens?
I’ve previously had ulcers up the nose and sores outside the nostrils but nothing is obvious at this time apart from the pain and overally dry sensation 😏
I have dry nostrils with Scleroderma and I have no feeling in my nose so difficult to blow my nose. After a shower the steam seem to make my nose start streaming. I use Vaseline up my nose to lubricate it using a cotton bud very carefully, it stops the inside from getting overdry.
I’ve no idea why this happens maybe it’s to do with lack of blood flow.
Hi lisalou , i have found that saline nasal spray helps , the one i use is Sterimar. It cleans the nose and helps to keep the nasal tissue moist . I use it at least twice a day , my nose used to get very sore and feel burnt this spray has really helped.
Burnt is exactly the feeling I get. I have dry eyes, ears and mouth too!!!!
I will get some of that today thank you.
X
Hi Lisalou, sorry to hear of your suffering...have you had an ENT referral? What you describe could be 'crusting', a sign of vasculitis (had a peek at your profile and see you've not gotten anywhere with that).
Here's a typical GP guideline:
ncuh.nhs.uk/for-gps/referra...
Page 3 says 'crusting' is an immediate ENT referral. My ENT's know more about vasculitis than the Rheumies or GPs, and a nasal biopsy is planned. Be well xxx
I am just waiting on a referral to guys and st Thomas to see a lupus/vasculitis specialist. All the doctors I’ve seen so far are only looking at my bloods which are negative . My dad is also negative in his bloods and he has rheumatoid arthritis. I’ve even sat in front of a doctor with nasal sores and rash and his still scratching his head 🙄. I have to try and remain positive but I’ve got all sorts going on. X
That's great you'll see a specialist...Negative ANA/ANCA doesn't mean a thing...you have all your symptoms written down, be sure to include odd things that came and went. Willing you well xxx
I see a doctor privately, and went with a diary, photos , list of symptoms from rare, often and very often. He paid a lot of attention to all of this and after a physical examination he wrote to my doctor asking for a second opinion referral. I just hope this wait is not much longer x
Was it a Rheumy, or generalist? I'm thinking of selling my soul to the devil to see a specialist 😈
Well, the treatment time pledge will apply as its back to the NHS, so, is that 6 weeks in England? xxx
I first paid to see a general rheumatologist, he was good but he relied on my bloods even though I see him in a full flare up on 2 separate occasions. The most recent is a specialist in lupus and vasculitis, he very much thinks I am now in the right place. 6 weeks 🤣 it’s becoming more like 6 months 🙄. Although this doctor is not bogged down through the nhs due to the illness being quite rare
X
Well, you'll be seeing one of the best, fingers crossed, and do phone frequently and ask if there any cancellations, or if there is a cancellations waiting list, or where you are on list...you get the picture, enough badgering and it's easier just to put you down for an appt ... xxx
Get same reaction then well i think we might try this or we have tried everything in the meantime symptoms get worse. 🙁
I have painfully dry and sore nose, worst during the winter months as in now. Sometimes I wake with my nose pumping blood out and have to rush to the toilet cupping my hands. Others it’s just as you describe and crusts and is intensely sore as well. I’d say this is one of my biggest problems just now along with burning and stabbing mouth pain.
I’m assuming in my case it’s Sjögren’s dryness as I tend to breathe through my nose so the dryness then causes sores and cracks to form. If I breathe through my mouth then the price on my teeth is very high but when I breathe through my nose I get dryness all the way down my trachea and oesophagus, as far down as my bowels, bladder and gynae parts.
I use coconut oil on all parts, especially up my nose, as it’s the only thing that seems to help. Vaseline doesn’t reach the top of my nostrils and I’ve read that if it’s poked far up nostrils then it can be ingested and be dangerous causing pneumonia. Sort of makes sense as it’s paraffin based but I do use it around the edges of my nostrils and also an antibiotic cream I can’t recall the name of now.
My nose is quite red, swollen and blobby these days - ugh.
I’m trying these days to see a gp every time I have a physical symptom!
I do have fucidin cream here, which helps slightly but not a mass improvement. I also have steroid cream.
I always find my nose gets quite dirty, not as in runny nose but just wiping around my inner nostrils always leaves the paper dirty x
Naseptin - that’s the one. I only know that mine is assumed to relate to my confirmed Sjögren’s and related dryness.
But there has been the odd pointer to Vasculitis and Scleroderma for me so maybe, in time, an additional rheumatic disease will show itself more clearly. Coconut oil definitely works better than Vaseline for me and isn’t paraffin based so feels more wholesome.
Current situation, ear buds soaked in fucidin hanging out of both nostrils!!! Good job I’m single, so unattractive 😂. I think Sjögrens fits some of my symptoms. But then again my symptoms are so vast I think I tick the boxes for a lot of things!!! Staying positive is one of my best forms of medication, but of course that slips at times xx
Heck tell me about it. I found myself begging my oral med consultant to pull out all my teeth and let me use dentures last Friday. My hubby said afterwards that he had been surprised as dentures would be a very big departure for me (he didn’t say unsexy but I’m guessing that’s what he was thinking!).
When I had all four wisdom teeth out in one sitting at 20, my dentist recommended that I staunch the bleeding with tampons. My dad was appalled to come home from work to find his daughter black and blue with bruising and swelling and four tampon strings hanging out of my open mouth lol!
Seriously I think Naseptin would probably be more useful than Fucidin for you. 🤗
medicines.org.uk/emc/produc...
I just found some Bactroban that I was prescribed when I had an ulcer up the top of my nose. Will try that too tomorrow if this cream doesn’t work
That sounds pretty awful 😔. So frustrating the knock on effects of these illnesses x
How awful and scary for you. I’m so glad for this post and replies like yours as occasionally over the past few years, a nasal sore has become infected and one nostril has swollen and become very painful. I’ve never been to a GP about this as Naseptin has settled it - but always good to be area of worst case scenario.
Nor surprised. I’m feeling similarly paranoid about this chronic infection under one of my root canals. I think the link with staphylococcus is a very interesting one I haven’t even considered for myself. I get sore throats an awful lot - got one now.
I’ve assumed Sjögren’s and related GERD are the cause. But maybe, after all, it’s all interlinked because some of my symptoms often improve with antibiotics.
Naseptin has definitely helped my nasal pain but my sores are usually right up in the top of my nostrils and ENT consultant tells me they are related to burst capilliaries/ telengecstasias which I have around my face too.
I never used to get nose bleeds until Sjögren’s/ RA/ CTD but I think they often drip down the back during the night while I’m sleeping so this probably doesn’t help with nausea, sore throats etc.
Naseptin tastes ugh so I’m obviously ingesting it via my post nasal passages or whatever they are called! ENT wants to cauterise/ stent. Meanwhile, like many Sjogies I have lost my sense of taste but got a very strangely over sensitive sense of smell?! X
Well I’m similarly placed with spondyloarthritis /PsA - and my antibodies aren’t positive for Sjögren’s either but my lip biopsy was definitive and I’ve had Hashimotis diagnosed for years. So yes I’m also minded to go for the spectrum explanation too. X
Twitchytoes is right - please don’t use Vaseline it is dangerous if ingested - my chemist said coconut oil . Very common joy of Sjogrens made worse by the cold. Good luck
I agree with the lubercating the nose, but I keep a non-medicated nasal spray near during that time. The mist itself is helpful.
I have dryness..period...nose, mouth, eyes and skin. Slight nose bleed yesterday that I assume is down to dryness, so this morning I used the Sterimar isotonic nasal spray originally prescribed by a doctor in ENT as my nose was so uncomfortable. The spray I use has 2 purposes, it moisturises and irrigates and it works for me
I use it sparingly as the salt in it burnt my nose when I used it every day. I buy the product these days, its worth having it in hand. I use vaseline as well when my nose starts to feel sore. Its been about managing the symptoms. Hope you find something to relieve it.
Ive had a freezing cold painful nose for 4yrs in winter then last year it hurt all year. Turned out all my sinuses were all inflamed & had steroid treatment. Are you on Hydroxychloroquine?
Just started them one week ago. I understand they take time to work. I currently have another sore coming up for so reason. I feel awful enough on the inside without having gross sores for all to see 😔x
Up to 12 weeks to work I believe but you may notice after around 6 weeks (& 6 months to leave the body). I know how you feel 😯 try not to worry about others. When I had to start wearing goggle looking dry eye glasses people would stare so I avoided going anywhere. Now when they look at me I stare back & they look away!x
Shoulder and neck pain
Pain
Crying, pain & optimism
abdominal pain, could it be pancreatitis?
