Hi Folks
haven't posted for a while.... 2 years since my Crest diagnosis, and it has been a journey living with the ever changing symptoms.. However the latest strange itchy and slightly numb nose sensations is one I do not care for at all ! Has anyone else had this ? I really don't like it one bit..Is it the schleroderma ? Is there something I can take to alleviate it ?
Any help appreciated
Thank you
Cathie x
I have had Systematic Scleroderma for 2yrs now and in that time have found my nose to get very sore at the tip as well as itchy, especially in cold dry weather. I also get numb nose now along with hands, feet and tip of tongue, which is related to my Raynaud's.
Hope this is helpful.😊
Hi K,
Thank you for your reply, What do you do to relieve the itchiness ? its driving me mad ..lol
Cathie x
Hi Cathie, totally understand😄! I use a saline nasal spray. You can make yourself or buy at chemists. Hope it helps😊, Krista x
Hi Krista,
How will a saline nasal spray stop the outside from itching... Or am I being a bit dense lol.... However I do appreciate your reply, I live in Hertfordshire and haven't come across any local people with Crest for a good sympathetic chat, so appreciate the community on here.
Cathie x
Hi Cathie, lol, I thought you meant itchy inside nose....sorry....so obviously saline won't work if it's outside lol!
Do you use moisturizer? I get itchy all over at any given time so use QV, not sure if you have it in UK...but something that keeps the moisture in and keeps skin from drying out helps with my skin.
Totally understand about having others who empathize, I live in regional Queensland Australia and can't even find a decent online forum here let alone an individual with Scleroderma...plus my husband is from Lancashire and we are looking to move to UK in near future 😁 always happy to share what I've learnt from my experience of this disease 😊 always trying to know more myself. Happy to chat anytime 😊.
Krista x
Hi Krista,
Thank you so much for replying, can I ask some questions of you..? How long have you had your autoimmune ? how old are you ? How are you coping with it all ?.Please don't answer any questions you find offensive, I don't mean to pry .
Hi Cathie
Happy to answer any of your questions 😊....I am 43 and started having symptoms of scleroderma in 2017 at 41, after we lost our son at 6mths gestation. He had an extra chromosome and doctors advised us to terminate. It put my body through a lot.
Within weeks I had what I thought was carpal tunnel, we travelled to the UK for 3 weeks in August 2017 and during that time my hands started with what I now know as Raynaud's. After we got back home the lethargy struck and I was so tired, then soon enough my hands and joints started aching and my skin on my hands, forearms and face started getting tight.
By December 2017 I started losing weight which continued at 1kg a month for 14months, now stable thankfully. Although my latest issue is with my stomach as the disease is affecting the muscles of my digestive system 🙄 and has been super painful...
2yrs in how am I coping? Some days are good, some not so good, my hands are bent and awkward with loss of dexterity and sensation...so I drop things often and find it terribly frustrating opening a bottle of water or picking things up but you just learn to do it differently 😊. My skin is still tight on my hands and arms and has begun around my neck, chest and shoulders and of course my face is also tight....but after being told a number of times I look like I am in my 30s that doesn't hurt the ego one bit🤣.
I just take things one day at a time, not to say I don't have fears for what may or may not happen (I try not to google too much about scleroderma but my inquisitive nature can't help itself sometimes 😄) and just try get on with life....I have 2 daughters ages 11 and 13 who keep me on my toes😉 and a fab husband that keeps me busy😄.
And so how about you Cathie, what's your story?
Hope I haven't completely bored you🤣....
Krista x
Hi Krista ,
I loved your reply it wasn't boring in the least, sometimes everyone on the site are so positive but some days I don't feel too positive, I would just like to wake up and be normal again however I know that's not gonna happen.!
6 months before my diagnosis (Crest) I had a persistent pain under my ribcage which was like a belt had been tightened , I was told it was indigestion and to take Gaviscon. Then the toes on my right foot became sort of numb , I eventually went to the doctors again and was told it was a trapped nerve and given exercises to do (which obviously didn't help) . Then I tightening in my neck felt like there was something choking me (made me feel panicky) and they said I had a polyp on my vocal chords which left my voice croaky for over a week.. Things didn't feel right I lost weight (the only good thing to come from this .lol) 9lb in 2 weeks and felt tired and achey, eventually blood tests confirmed I was a strong positive for crest. I now ache all over every day, like you my hands are extremely tight and puffy, the bottom of my feet feel like i'm walking on pebbles 24/7, My toes are completely numb .I have Raynauds and pins and needles in my arms feet legs. neuropathy in both and Sjorgens is so bad my dry mouth wakes me up in the early hours but I can't drink water as it cancels out the Gaviscon ...When I read all this back there is too much else to say about my symptoms I could go on for ever..as i'm sure you can... I am 58 work full time have an 18 year old daughter , i'm divorced , (10 years )
I hope this summary doesn't sound to self indulgent and pitiful, most days I just get on and almost refuse to acknowledge I have crest but I can feel things are getting progressively worse.
To stop the loss of muscle tone I do reformer pilates 3 times a week (costs a fortune) but I am trying to maintain some kind of function..
Well thats my story ..Livin the dream ... :-0
You never know we may go into spontaneous remission...
Thank you for your reply I appreciate it so much.. Take care of your self ...
Cathie x
Hi,My nose is itchining of late I hadn't thought much about it till i saw it on your website I was diagnosed with systemic sclerosis about 20 years ago but find the symptoms get worse with age.
Hi Sweetpea,
Thanks for your reply , if things get worse with age that's something i'm not looking forward too ! I'm only 2 years in !... the itching is really annoying and it feels slightly burning but doesn't feel hot when I touch my nose... and tender around the nostrils...
Thanks Cathie x
immune specialist, pain doctor, rheumatology, my skin itches all the time talk to the doctors maybe they can recomend some creme for the tiching or medication that could help you. probiotics tumeric with pepper has good results for immune problems and fish oil, flax seeds, eat lots of berries good luck hope you feel better hugs for a better tomorrow. julie
Hi sanma,
Thank you so much for your reply, Is Yakult a probiotic ?, alternatively could you recommend one....
the probiotics you find in the diary area of the store with yogurt. trader joes, safeways, etc. flax seeds, fish oil, sardines, nuts, biotin for hair, are some of the things i am trying right now for crest. keep your hands covered during cold weather and your feet. make sure your doctor gives you a referal for experts right now do not wait treatment is crutial. good luck angel. julie
Hi,
I haven't had the itching but in the early days my nose shape changed to look like a baby's nose. Also above my lips became very lined & was asked if I was a smoker ( which I wasn't ). Just more weird affects of the systemic sclerosis. The itching for all of you must be awful. Keep your chins up! Xxx
I’m having problems with my nose too. I have Sjögren’s with Raynaud’s and some pointers to CREST but the CTD dr is dismissive.
At the same time I’m under dermatology for an early stage skin cancer on my lip. The professor had twice said about my nose and other redness that it’s autoimmune photo sensitivity.
I keep asking my doctors if it isn’t actually Rosacea but none of them think it is. My nose is always a bit sunburnt looking and slightly itchy and swollen now and same with my chin. I try so hard not to rub or scratch them and wash my face with aloe vera gel. I use factor 50 daily before going out so I don’t think it’s photo sensitivity as the dermatologist has written.
My GP thinks it’s something else ie Rosacea or allergy related. So I’ve got three difference clinical opinions going on now! She has referred me to a different dermatologist fir second opinion as she feels the one I’m seeing is rightly focussing on her area of expertise - skin cancer - but she may be wrong about my nose and chin redness being due to overlapping CTD.
I just wish they would all agree!
Hi Twitchy,
I saw my GP and I was given a cream for Rosacea, I have put it on every night for the past 3 weeks and there is no improvement on the appearance, so I don't think its that... I have not been referred to a dermatologist so im not sure if its Raynauds or Sjorgens... The itching has actually eased of slightly this evening but I know it will be back ...There is never a conclusion or definitive diagnosis for anything or a cure for anything so sometimes it feels pointless going to the doctors...
Thank you for your reply I really appreciate it.
Take care
Much love
Cathie x
Bit of a strange one - let's talk sweating!
Cold nose?
strange taste and smell
Strange sensations
