New here so be gentle with me!

[welshmaiden59]

Hi just joined as have been diagnosed with Lupus in last few weeks, after 2 years of back and forth to gp. Eventually spoke to a consultant (couldn't see him because of covid) and he was no help at all, has made another appointment for January. In the meantime my symptoms seem to have escalated somewhat, could this be due to the colder, wet weather? I'm not on any meds specifically for Lupus just paracetamol for the pain which hasn't really been working the last couple of days. Was thinking of getting a Tens machine, but not sure.....

[Oshgosh]

Welcome to the forum.

When you are diagnosed with an au diseased everything seems to take forever.when I was diagnosed I thought everything would happen really fast.it didn’t.

Look after yourself.

[welshmaiden59 in reply to Oshgosh]

Thank you! x

[Spanielmadlady]

Welcome 👋 we are a gentle caring bunch with lots of advice to share and support to give.we share things other then lupus and have a laugh along the way too however we will tell it as it is.if you havent already google the spoon theory and you may want to consider the hidden disabilities lupus uk lanyard.

My lupus changes with the weather....in summer the sun causes problems as does the cold and wet in winter...its important to keep your joints warm. Gps are no good at dealing with us lupies...they simply dont know how to handle our complex issues. If paracetamol isnt helping maybe you can ask for something stronger....some of us take pregabalin or gabapentin

Between now and January write every little thing down inc any questions and take photos if possible.

It is a long journey with lots of ups and downs but remember you are not alone ... weve been there before you and can hold your hand.

sending welcome hugs 🤗🤗🤗 and kisses 😘😘😘 SML xx

[welshmaiden59 in reply to Spanielmadlady]

thank you for the welcome, I would rather have straight talking so feel free! Thank you for the info re weather, I did wonder if it made a difference, my heating has been on full blast which seems to help a little, best place I find is snuggled in bed for warmth although I then get aching hips and legs argh!

I have been keeping a diary and will take photos. I find it hard to tell people what Lupus is as they gloss over the symptoms and just tell me I'm getting old! I have sent my 3 sons a leaflet for them to read.

Looking forward ti interacting with everyone on here

welshmaiden59

[Spanielmadlady in reply to welshmaiden59]

We all have a symptom list as long as your arm so dont be embarrassed by yours.the spoon theory is a great way to explain lupus.i havent had the heating on yet but I often find bed is the only place to get comfortable.i think what differentiates lupus from getting old is the chronic nature of every symptom! We also share our pets,baking,pics, hobbies and achievements so feel free to join in ....the more the merrier xx

[CecilyParsley]

Hi there, this is a wonderful safe space to chat, learn, teach and discover. People here are in various stages of living with Lupus, getting lots of other autoimmune issues too. From your title I suspect you live in Wales. Sadly our Rheumatology services here are poor to dreadful. There do seem to be some new Doctors coming on board who seem more knowledgeable though so there is hope. Which part of Wales are you living? We also try to boost one another whenever possible with cute photos, artwork, cakes and funny stories, so this is not only a place to share feelings and symptoms, it is therapy of the best kind...love and laughter ❤️

[WinterSwimmer]

Hi welshmaiden - having lupus is a pain - no doubt about that, but you will eventually get used to it. You may find ibuprofen more effective for pain relief, and you can take it wit the paracetamol if necessary. I don't really understand why you have been given a lupus diagnosis but no medication - has hydroxychloroquine been mentioned? This drug is quite an important one in lupus because it can prevent things developing or at the very least slow down the progression of the disease. Maybe when you see the consultant in January they will have a 'game plan' for how to treat you. Like CecilyParsley, I'm in Wales - and would concur that our rheumatology service here is pretty poor. You may have to be assertive! Good luck.