Has anyone with sjorgrens started having aches in their joints in this nice weather?

[Nikkipool]

I was only sat outside for a short time under a gazebo which was not in full sun yesterday. Today all my joints are aching. I know I have some uv sensitivity but it normally aches.

[weathervane]

Hi nikki , i have found that in the past that a change in the weather causes increased pain. Im sore and fatigued at the moment but im months over due rituximab as having surgery on disc soon . My wrists and hands are particularly sore.

[Nikkipool in reply to weathervane]

Thank you for replying. I hope your surgery goes well and that the you feel better when you can get back on medication. I am not a lover of sitting in the sun as I get burnt easily. I think I am going to have to get some prescription sunglasses and a very big floppy hat. Take care x

[weathervane in reply to Nikkipool]

Prescription sunglasses are great definitely recommend them . I don’t sun bath much , but i also don’t suffer too much from sun sensitivity, though prickly heat is an issue at times . Best wishes 🌸🌸

[Hidden]

I have Sjögren’s and just seem to be a generally much happier, healthier person during the summer months full stop. But I do have Raynauds, live in Scotland, put on Factor 50 first thing each day and don’t sit in direct sunlight or expose much flesh at all - long sleeves, leggings, prescription shades and a wide brimmed hat. My very fair skin is erratic but wind and cold seem to be the worst thing for mine. It would be different if I lived somewhere hot with air conditioning I’m guessing. I don’t think I’d tolerate real heat well now.

[Nikkipool in reply to Hidden]

I love to see the sun shining as long as I'm not in it. I think it generally lifts everyone's mood. Going out in it is a different thing. I totally agree that the cold, wind etc are horrible and cause so many problems. As I said above I think I need prescription sunglasses and a large hat. Thanks for replying and please take care x

[Hidden in reply to Nikkipool]

Good prescription sunglasses have changed my relationship with sunlight and also bright lighting for the better by far! 😎

[Cas70]

Hi - change in weather always affected my joints, even before diagnosis. Staying indoors doesn’t help. It will happen again after the summer but it is usually only for a day or so. I love the warm weather and sunshine so I feel much better ! Sjogrens just keeps on giving doesn’t it !!

[Ladyuponthelake in reply to Cas70]

Love the comment, really made me chuckle 😎🌻☉

[Cas70 in reply to Ladyuponthelake]

We have to laugh or .......just back from a craft fair at Wisley - I know I will suffer tomorrow but ... bought the cutest little Japanese parasol which really helped with the sun as so easy to move it about as a shield !! 😳

[Ladyuponthelake in reply to Cas70]

I used to exhibit there years ago!

🌻🌻🌻

[Nikkipool in reply to Cas70]

It definitely does keep giving! Shame there aren't any good points really 😃 Stay well 🌻🌸

[Ladyuponthelake]

YES YES YES but I have to ask myself do I want to stay in forever? I went outside and did a bit like sprayed the car, covered in mud from winter. We live in rural Devon in the middle of farmland so mud is a way of life. Today I'm paying for it, but it was soooo worth it! I was outside The House!

So absolutely I'm right with you it does hurt, but for me mentally it was worth it.

But you most definitely have to pay for it. I'm sorry you have to go through it at all, be well 💕

🌻🌻🌻

[Nikkipool in reply to Ladyuponthelake]

I used to live in Devon. Back home in Wales now though. Mud is just as abundant up here as well ! I agree though, I need to spend time outside even in the shade as I enjoy growing flowers and of course playing with my son. Fresh air is good too 🌹🌸🌼🌻 Bbqs are a must as well 🍔 😃😃

[Ladyuponthelake]

It's a shame we have to pay the price but it's all about priorities. Is it worth the price?

I lived in N Wales for 2 yrs when my husband and I first married. In Llithfaen Pwllheli on the side of a mountain just beautiful!

Enjoy your day whatever it may be doing. I'm paying for enjoying yesterday but it was so so worth it.

🌻☉😎

[Supul]

Weather changes do bring my symptoms out! Cover up with cotton clothing, floppy Sun hat, wrap around sunglasses, oh, I look a sight! Also use factor 50 suncream on face and hands..

Yes! My joints aching badly, eyes blurred vision, throat itching, stinging, ankle itching, sunrash, but then again, I get horrible symptoms cold weather too! Lol

I have diagnosis Sjogrens/?lupus..oh, joy...