LUpus Patients Understanding and Support
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I just found out I have Lupus.

I have been having trouble breathing. My lungs hurt.

I also was diagnosed with Lichen Sclerosus. The medication isn't helping. The lesions and burning of skin has spread. Idk what to do anymore. I'm super tired.

I don't really have support at home now. My husband passed away 5 yrs ago. I have no family.

I do have someone staying in my home, not invited by me but my girlfriend asked for me to help this person out for the church, wow that's another story😃

I'm just looking for support or someone to talk too

4 Replies

Hey I'm sorry to hear you've had such a rough time of it, you are now in the right place. This is where I've found support and answers when I wasn't sure if it was in my head! I myself have only been diagnosed with SLE for 9 months and I've found the treatment I am on to be working. What I find sets me off is stress, if you find you are in a situation that is making you Ill, even if your intentions are good, maybe you should rethink and put yourself first? I don't really have much advice but I just wanted you to know your post has been seen and your not alone.

1 like

A lovely post to read. How are you doing?


Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

You have come to the right place. It is understandable that you may feel anxious and/or depressed. The good news is that over the past 30 years,there has been a great deal of research. Patients lead a normal life, marry, have children and many come off all medication. Thus, there is every reason to be hopeful. Most important of all, is that you have a specialist in lupus because not all rheumatologists are expert in SLE.

My other advice is to be careful of websites - especially websites that offer a "cure."Information is available but because websites are not supervised, information can be scary, out of date and inaccurate. LUpus Patients Understanding & Support (LUPUS) try to ensure the information is accurate, up to date and links and references are available so that you know the information comes from experts in the medical field.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!


Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.


I feel you I've hade this for a yr and have been down two months I hate it!!!


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