Hi all, Dry sinuses are part of Sjogrens I believe. I dont have a cold or anything but I wake up with a pain behind my eyes, my airways are clear. If I go to the doctors he will say sinusitis and give me antibiotics - which work I must say. Is there any other way to sort my problem out?
I'm a long time sinus sufferer. I go old school with water steam inhalation, add salt to the water and a little very little amount of Vicks . It works wonders'
Hi I would suggest using a sea salt nasal spray daily this tend to moisturise your sinuses and make sure that you use a good preservative free eye drop x
That sea-water nasal spray is a real life-saver for me! It's saved me many a night with a blocked-up nose and a throat full of gunge stopping me breathing.
Yes sadly dry sinuses, dry mouth, dry guts, dry vagina, dry ears, dry skin, dry eyes, Sjogren's has a lots to answer to! Try to avoid air conditioning, that is terrible for sinuses and Sjogren's. I would suggest an atomiser in your bedroom, or a small bowel of water with menthol, eucalyptus oil or similar to help you sleep at night and put moisture into the air. Nozoil is quite good if you live in the UK. Have you thought of joining a Sjogren's charity? Also there are many FB groups for friendship and advice. I run British Sjogren's for UK residents. The BSSA is our charity. Good luck 🍀
Hi Lily, thankyou for your reply. I went to the Healthfoodshop today
but they dont have a sea-water spray. Could you tell me the name
of what you are using and I can get it on-line. I live in ireland. thankyou
Kandypat
If anyone else out there is looking for where to find the product, message me privately. (You can't post product names on this site.)
Kandypat - I've only just this minute spotted that you're in Ireland. I hope they'll deliver there from the UK. However, as an afterthought I went on their French home site (the one just ending in .com) and entered Dublin in the box on the "où nous trouver" (where to find us) page - and it turned up dozens of locations.
Good luck!
Lily
If you live in the UK I suggest you ring the BSSA the charity for Sjogren's. They will tell you where the best Sjogren's consultant is for you. If you wish to chat on FB British Sjogrens would make you most welcome.
Please please don't rely on BSSA. I gathered my courage and energy and joined in the spring. I tried to attend a local meeting and it didn't take place. Asked for local contact from BSSA and told they would contact me- nothing. Asked to join' make a friend' scheme which they first of all forgot about it completely and then when reminded they won't give out any details of individuals and no one contacts you. I am so disappointed and wouldn't want anyone else to go through it, this disease causes enough waiting and depression anyway!
Hi Judy,
Thanks for the update I was going to join. Do you live in the UK? If so I would be happy to speak with you. I have Sjorgrens myself x
I do love in the UK and would like to speak to you too, but I can't work out how to do it without posting my email/ phone number on the public forum! I am still working on it or do you know how to do it! I am not on Facebook.
but anyway it is nice to hear from you X
Hi pam 87693
I live in Ireland and Im not aware of any groups here, but in fairness I havent looked. I will join the FB group thanks for good suggestion.
I think I have had Sjogrens for about 30 years, but when the PBC started I put it all down to old age. I was diagnosed 8 months ago. I dont know if Im any better off knowing whats wrong to be honest. Nothing has changed except Im on Urso and I didnt have sore arms and hands before taking it, and now I have no feelings in my toes, and my sense of taste is going. Getting to see a specialist takes for ever. But all in all Im fine, and will soldier on.. Im 72 and I dont have any demands on me so Im very
fortunate.
Thanks Lily, I think boots do it but I was the other end of town, so I got an equivalent from the health
food shop and its very good. Thankyou so much it worked!
Judy - you can send private messages via this site without exposing details of either person. Just click on that little envelope icon under the person's "avatar" (the squiggle to the left of their name).
Hi Kandypat, I doubt whether the numb toes are anything to do with Urso. This is a classic symptom of Sjogren's itself. One of my big toes was numb for 10 years, with terrible electric-shock sensations every time I touched the nerve running down the inside of my instep. Incredibly, this suddenly reversed one day, quite spontaneously. I also used to have problems with strange sensations in my fingers if I held my hands in the same position for too long - holding a phone was a problem and I woke up with alarmingly dead fingers and feet several times a night.
Fortunately, most of my Sjogren's symptoms went into spontaneous remission 10 years ago, when I was in my early 60s. However, just to compensate, I've been in the grip of an RA flare-up for six months now - knees, hips, right elbow and now (for the first time ever) I'm in real trouble with my left thumb joint. This is a nuisance, as it means I can't grip anything to unscrew bottle tops etc. and I live alone. Still, the other night I decided to try the nutcrackers and found that worked very well! I've just put in a telephone order for my standard homeopathic remedies, which usually work in about six months.
Glad to hear it Kandypat. I know how even a minor relief of symptoms can make life a bit more bearable.
Hi Lilly,
I have been taking pilocarpine for the dry eyes dry mouth but it has caused pain in my right armpit and causes it to swell? Any ideas.
Mandy, are we talking about a swollen gland in your armpit? This can indeed be one of the rarer complications of Sjogren's. If you are indeed referring to a swelling in your armpit you need to see your GP or preferably your Sjogren's specialist asap. But don't be fobbed off with a three-month wait for the specialist. In the case of your GP, make sure he understands that you have Sjogren's.
It's probably nothing serious, but you do need to get this looked at. And I can't think of any reason it would be connected with pilocarpine.
I think it is to do with the medication, it did not hurt or swell until I took that medication. I have had a bad shoulder for a few months now, but the armpit did not swell or hurt until I started this medication.
Well, you might be right. But it could just be coincidence as well. As a former nurse, I stay as far away from the medical "system" as I can. Only had two cervical smears in my life and have never had a mammogram, for example. However, as a Sjogren's sufferer, if I found anything I thought was a swollen gland anywhere in my body, I'd get it checked out immediately.