Have sjogrens ?

[weathervane]

Hi, diagnosed with sjogrens which no one has heard of and it's hard to explain as so many symptoms ! I would love to hear other people's experiences with this as you can look healthy but can suffer awful pains and aches. Before diagnose I thought was all in my head now I know need to learn to manage the symptoms and get out and live life.

[TheAuthor]

Hi weathervane

I sincerely hope that you are feeling as well as you possibly can be today? I am so genuinely sorry to read that you have Sjogrens syndrome. I do not have this myself but it is a condition that I am familiar with.

I have pasted you a link below to the NHS Choices cache for this:

nhs.uk/Conditions/Sjogrens-...

I can easily imagine that Sjogrens syndrome is one of those conditions that is severely affected by weather changes? I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[weathervane in reply to TheAuthor]

Hi TheAuthor

Thank you for post . As regards the weather effect, changes in the weather seems to cause an increase in pain but I do feel better if there is an extended hot spell- I felt a lot better when I was in Spain last summer.

[TheAuthor in reply to weathervane]

I can genuinely relate to that as I have several pain conditions including arthritis and they are always less painful in the summer.

[weathervane]

Hope for a heatwave this summer! ☀️

[LadyPenelope]

Hi my cousin has sjogrens lupus and Endometriosis. I also have symptoms of Sjogrens so I know exactly what you're talking about. I'm appalled at width of the knowledge gap in the brains of the the medical professionals around us. Forget about the general public; especially friends and family. They never understand how it feels to have an "invisible" illness. You're not alone at all. We are all here for you especially seasoned insomniacs like me. Take care of you and concentrate on putting one foot in front of the other. 😘😘

[weathervane]

Hi ladypenelope

Just typed out a reply and deleted it by accident !!! Thank you for post, I know what you mean- apparently it takes 6 years to diagnose Sjogrens !! I have a lovely consultant who takes time to listen but I was passed around 4 different consultants before I was sent to a rheumatologist . I try to stay positive though my family are very good at picking up when I'm feeling bad and they are very supportive . I tend to tell friends I'm grand , if you moan to them to much I'm worried they might avoid me !! I wish you all the best keep the head up 😀

[WpgGirl]

Hi! I have Sjogren's as well. I'm 46 now, and was diagnosed in 2011, but....had some indications of autoimmune disease in 1988! I've noticed that the symptoms have ramped up a bit this year...the Raynaud's and chilblains MUCH worse, as well as the dry eyes and skin, and also the joint pain. I'm finding the Cloudy study useful to prove that the weather definitely is connected, but the downside is that now that I'm "paying attention" to my pain, I'm actually noticing it more!

[weathervane]

Hi WpgGirl

Chilblains are nasty!! I wear thermal socks nearly all year round and occasionally bed socks ! Seems to have made a difference as didn't get any this winter. Unfortunately you get used to pain and build up a tolerance- not always a good thing as I tend to leave seeing doc about probelms till the last minute when things are getting serious! Distractions help , when I feel good I love to bake. I would like to take up painting again but worried holding brush for sustain period might trigger finger pain? Hope your pain settles down again🙁

[WpgGirl in reply to weathervane]

Yes! I wear thermal socks nearly all year too, and also occasionally bed socks! Glad to hear I'm not the only one. The minute my feet hit a tile or wood floor, the toes go purple - even in the summer. HeatHolder socks are amazing.

[weathervane in reply to weathervane]

What are heatholder socks- I get marks and Spencer's and they are ok but sometimes need my wee furry boot slippers as well☃

[Humdeedumm]

Never heard of it I'm going online to check it out. Who diagnosed it and what do you do for it ?

[weathervane in reply to Humdeedumm]

Eventually diagnosed by rheumatologist , it's another one of these autoimmune conditions with lots of symptoms that you have to try and manage ie dry eyes and mouth , swollen lymph nodes , muscle and joint pain etc etc! Taking plaquenil and had course of biologics. There are soooo many different disorders !!

[wsjkcj1]

I also struggle to explain the symptoms because there is so little published about Sjogren's. Each symptom I search on brings me to a Lupus forum. I even had a primary care doctor tell me once that Sjogren's didn't involve joint pain. That's how little it's studied I think. This is the reason I visit these websites to get info from the people who actually live it. It's funny on the weather topic that rain tends to make the joint aches and pain worse but it's a great help to my dry eye so I'm not sure if I prefer it or not. LOL

[weathervane]

I seem to have a bit of everything!! I asked the rheumatologist if definitely Sjogrens and she said it definitely was🙄 It's the syndrome that keeps on giving! Changable weather doesn't agree with me☀️☀️