There is no community for sarcoidosis or CTD , and as I now have confirmation I do not have Lupus, I am saying goodby to you all. Thank you for your help, your best wishes and inspiration. I especially treasure the humour and the tenderness you have shown to me and others as I now continue with my journey with a new diagnosis in the wings.
Much love and best wishes to you all. Linda
Hi pepsymum
It's a shame your leaving. Maybe Healthunlocked will start one up for sarcoidosis!. All the best to you for better health and pop in occasionally if you'd like to tell us how your doing. X
Good luck Linda, hope with your new diagnosis you get the correct treatment that helps you. Check in every know and again let us all know how your doing. There's always great advise for those general conditions here as well remember. Take care x
Linda there are quite a few of us here who don't have Lupus - me included. Why don't you join a Sarcoidosis FB page or other forum and stay here if you feel at home with us? The only Sjögren's HU community is Australian but I use it and several others for related conditions even though I live in Scotland. Lupus UK is definitely where i feel I can be me - despite having Sjögren's rather than Lupus. X
Ps I know of quite a few who have Sarcoidosis and Sjögren's - they are a common pairing/ overlap.
You do have a CTD though don't you? And to be honest, I'm sure I speak for many in saying that the auto immune spectrum is large with incredibly blurred edges as there are so many overlapping conditions.
It would be a shame to leave a forum with so many demonstrating this overlap, who therefore relate to so many issues we all face, if nothing else, dealing with daily life with a chronic illness.
I hope you change your mind! 😊
Take care 🌹🌺🌻🌼🌷
I agree with whats been said, having CTD you overlap with many of us here. We all have interchangeable conditions and symptoms. There remains good advice and help for you.
Hi Pepysmum,
Please do not feel that you are not welcome in this community. As other members have said, there are many overlaps in lupus and connective tissue disease and certainly many shared experiences which can be used to support one another.
It may be worth taking a look at the British Lung Foundation (BLF) HealthUnlocked community too. They may have some people diagnosed with sarcoidosis - healthunlocked.com/blf
Don't feel you have to leave! You are very welcome to stay. As others have said, plenty of members don't have Lupus diagnosis. All input here is gratefully received. We are all finding our way, one way or another. Wendy x
Well, what do I say? I felt a fraud and very sad to leave. But knowing that I have fibromyalgia and a diagnosis of sarcoidosis and possibly CTD but not Lupus - maybe I shouldn't be so exacting.
So I have decided to stay following the group. It feels supportive and safe especially when I have so much pain recently. Many many thanks to you all - you have made me feel so lucky to have such kind and gently support close to hand.
I have another appointment tomorrow with my orthopaedic surgeon. I had a knee replacement and after a year I am still in pain. The Brompton ( sarcoid clinic ) think my autoimmune response to the knee replacement may be the cause . I know that I am prone to keloid scarring. Plus there is a lump by my shin on the other leg that causes pain right into my bone.
My journey continues and now I am happier that we all are there for each other. Once again I truly thank you for discouraging me from leaving as there is so much to gain from being part of this wonderful group.
Linda
So pleased you've decided to stay! I, for one, would like to learn more about Sarcoidosis, since symptoms seem to overlap a lot with my version of Sjögren's 🤗
Friend,
I cried when I read your post. Ive been off-line recently (for more than one reason which Im not ready to share yet). I still get confused and scared and here is the only place where you can be yourself, talk about everything, be honest and still feel safe. Feeling a fraud is something I felt for many years. Im glad you're staying - we're your big, weird and wonderful extended family.
Bug hug 😘😘😘
Charlie xx
New diagnosis..... any advice? 
Festive Season
30-minute yoga and breathing session available online
Has anyone ever been referred to a pain specialist??
