And another one to add to the mixture! - LUPUS UK


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And another one to add to the mixture!

Lupiknits profile image

My rheumy research team sent me off to get a scan of my glands last November after I explained to them how very dry my mouth gets. This has been followed up my an appt at the Dental Hospital this morning. The ultrasound showed early Sjogrens. My greatest sympathy to all who have galloping Sjogrens. Lol, last summer I had to resist the urge to get my mouth under the tap in the GP’s surgery ( it’s at its worst when I have to talk for more than 5 mins).

Yesterday I couldn’t get warm, and the soles of my feet were the worst. That’s a new one. Although it hasn’t been too cold the last few days I’ve got my thermals on in bed, plus thermal socks and fleece gloves. I lie there desperate for the dog to join me and warm me up.

Did I mention my back molar has been simmering for a few days? The oral medic this morning hasn’t helped. Dentist tomorrow, and no root canal please. Pull the rotter out.

So it’s CTD with a systemic sclerosis here, a Sjogrens there, here a Raynaud’s, there a manky tooth, cracked up skin ...... and I’m too tired to do the Hokey Pokey 🎵🎵🎵

I could go on ..... 😜

24 Replies

Poor you, it is amazing all the symptoms of these auto-immune diseases. Since being on here I have been joining up the dots over the last twelve years, Rheumy suspected Sjogrens Jan 18 but only diagnosed Dec 18, still waiting for medication. Trouble is each time you go to the GP they just look at the symptoms that day, they are just not trained in depth for each health problem. That is why this site is so good. We are lucky this winter has not been too bad so far, hope you feel better soon. x

OMGoodness Lupi


So sorry you’ve added a new DX to the heap.

Bless you. Hope you get some relief soon sweetie.

Best wishes.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

"Lupiknits syndrome" - then it is only one thing ... ;)

Lupiknits profile image
Lupiknits in reply to PMRpro

Like it! Now to find a medic who knows anything about it. No, scrub that, they are all a bit ermm hard to find.

PMRpro profile image
PMRpro in reply to Lupiknits

No, you have to become the expert patient...

never a dull moment, eh? x >eyeroll<

😍👏👏👏👏👏🌟🌟🌟🌟🌟 YAAAAAY LK ✌️🥂🍾💐

Am just off to sleep after a 😆 SUPER HAPPY 5 days with my BELOVED little sister here from USA 👯‍♀️...she comes over every 3 years...we WISH this could be more often...but 🙄....and tomorrow after we drop her @ the airport, we’re off to hospital for phase 1 op of the spine surgery i’ve been figuring would probably be needed this time between my sister’s stay & this spine stuff am distracted from forum...BUT SO GLAD to see you’d posted: this wonderful thread has made me chuckle + given me a big dose of much-needed COURAGE....THANKS 🤝👌👍 ‘✊ are quite simply UNSINKABLE ⛵️🛶🚤🛥🛳⛴ 🤩

❤️🍀❤️🍀❤️🍀 Coco

Love you Coco!

Footy ⚽️❤️

Fair well with the extraction LK, and have Blue warm the bed before you go upstairs! Have you tried wheat heat bags? xxx

Lupiknits profile image
Lupiknits in reply to eekt

I’ve got some somewhere, I must try them

Hi Lupiknots - sorry you are. going through all this! And wow that sounds state of the art equipment at your hospitals to diagnose Sjogrens - After the ultrasound, I had to go through the rather more invasive lip biopsy in the Maxofacial (??) unit at my local hospital. Not pleasant!Took weeks of major pain meds and swelling to get through it. I looked like one of the Kardashians (er, well maybe just in the lip region ;)!!. In my area they said I had to have that to be sure. Which area do you live in - mind me asking? Anyway, hope you’re relieved you have the issue diagnosed and you’ll get some meds soon. Whilst the biopsy was found abnormal (diagnosed with saledenitis and sicca) wasn’t found to have sjogrens despite my v dry eyes/constant thirst and dry mouth/ severe atrophy of nether regions, difficulty eating dry food and v dry flaky skin. I use Eucerin 10% urea body lotion allover and their face creams constantly which is the best product i’ve ever found - or their tube of Intensive 10% Urea Treatment Cream for when hands and feet cracking. I also use salivix pastilles when constant drinking of water just doesn’t touch the sides. Are your eyes very dry too? Do you use Hylp Forte for day and Carboner for night? Life savers! My eye balls were seriously literally full on sticking to my eyelids at night even when using a hylo forte type post op /preservative free product I found prior to going through the Eye Hospital (who initially diagnosed me with Sjoegrens. They prescribed Carbomer for night which is much thicker and really works! No more fear of going to sleep!

Sounds like you got it all going on Lupiknits.. but you’re rallying well. It’s the not knowing I find awful - well, and the vile symptoms of whatever it is on any given day with this lark! All the best and keep us up to date with how it goes please D x

DJK99 profile image
DJK99 in reply to DJK99

Oh and meant to say - are you on Nifedipine for yr Raynaud’s? It’s super effective! No more Raynaud’s since been in it - well much reduced!! A life changer.. still get v cold and shivery lots (big fat cat, bed socks, hot water bottle and blankets for me too ;) but at least I can use my hands now (when not inflamed, rashy and swollen like now - but steroid shot in the bum Monday helping I think! - as off methotrexate for a few months again now for more surgery). And the mega pain of walking on Raynaud’s feet in the cold prior to taking the nifedipine was just awful.. agonising. Like walking on bare bones.. if u get that too, please ask to try the drug. Or have you been through it and have complications (sorry if we discussed previously - my memory...!). I had to go on the slow release one as the non- slow release got my AF going bonkers. Felt all over the place . All good ever since. The wonders of medicine! Hope that helpful Lupi! X

Footygirlagain profile image
Footygirlagain in reply to DJK99


Can you spell out the eye ointment/ drops for me please? I wake in the nught with pain of eyelids stuck to eyeballs. All I have is xailin drops. The night gel caused a reaction which infected one eye.

Id be so grateful for stuff that WORKED. I drink about a litre an hour all day to stave of sore eyes, really dry mouth.




Lupiknits profile image
Lupiknits in reply to DJK99

My Raynaud’s is not “treatable” in as much as the medications make me swoon! I have low blood pressure and they lower it further. Nifedipine gave me a red nose that one time, though my nose is not the problem.

I layer up in thermals (stock up in Damart’s summer sale) add electric warmers/fleecy blanket/ helpful dog etc.

Hey there - sure - its Carbomer for night time but its prescription only I think. You could use something like Hylo Forte though which is for the day really - Carbomer is really the best thing for the night as its thicker and really works. I got my prescription for both via going to the Eye Hospital A&E - they put yellow drops in my eyes and had a good old look round.. and that night I had a much better sleep using the carbomer! Id get it very quickly if I were you as my eyes had damage by the time I went (although it has now reversed using the Hylo forte in the day 6 times and the Carbomer at night). Good luck and get there pronto! x

Lupiknits profile image
Lupiknits in reply to DJK99

Thanks for that. I haven’t yet got hold of my suggested drops so I’ve no idea yet.

Lupiknits profile image
Lupiknits in reply to Lupiknits

Got a great mixture now ( all sorts). My poor dog has now got an autoimmune condition of the eyes. He has vet things, but my NHS Hypromellose, which they give me like sweeties help in between, which vet has 😉 at though he didn’t say it and I didn’t hear 😊

Hi iv got all the same, dentist have to cap top of teeth because they wear away , even in summer I have socks on indoors nobody tells you the change in lifestyle it is

Could you sing that and post on u-tube for us? 😂

Lupiknits profile image
Lupiknits in reply to KayHimm

My dog holds a tune better than me, but he’s more operatic 🐾

KayHimm profile image
KayHimm in reply to Lupiknits

What are you knitting these days? Did I tell you I have started painting my needlepoint canvases? At least I can do that while sitting (standing with autonomic dysfunction is not easy!) and it lowers blood pressure like knitting or stitching.

🎨 🎼


Lupiknits profile image
Lupiknits in reply to KayHimm

Sounds impressive to me! I think we’re lucky to have something to keep us from making mischief. As ever, several things on the go, according to level of brain fog and fingers. Just finished a fling around my neck thingie in pretty colours ( the yarn is based on famous artists and it’s Monet) . I’m finding round my neck shawlettes rather good for Raynaud’s. That one was thin yarn. Currently using thicker mystery yarn on another larger neck thingie.

Have a heap of children’s stuff I must get around to giving as pressies.

I could go on ....😊

Edited to add hanging round the chip shop counts as mischief, not that I could manage it.

KayHimm profile image
KayHimm in reply to Lupiknits

Oh, that Monet-inspired piece sounds wonderful! You have been busy. Send photos when you have a chance.

Yes I no what you mean Yv got it all to come

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