going through lupus diagnosis

[littledove97]

Hello everyone, I’m in the process of seeing doctors and getting tests done for a diagnosis..

I’ve been researching into lupus and I wanted to share my symptoms with the group, wondering if anyone finds any familiar.

-I get headaches that cause dizziness and nausea and I can’t lift my head off the pillow for hours (sometimes the whole day). I have to take time off work.

-Joint and muscle pain all over my body, especially my arms and legs (my arms get sore even just with washing my hair).

-Weak bladder.

-Severe fatigue that I can’t get on with my daily activities.

-I lose quite a bit of hair when I wash my hair.

-A lot of ‘heat’ rashes up the side of my body near my arm pit

I used to think I just had red skin around my cheeks because of acne flare ups but now I’m not sure if it’s lupus related 🙁

Ty in advance for any support💜

[Chris21]

Hi littledove, welcome to the group, I can relate to some of your symptoms but we all have different things causing our pain, rashes, fatigue. It can take quite a while to get to the bottom of what is actually causing your symptoms. The one thing I do know is if you’re feeling unwell it’s certainly real and not your imagination. Hopefully your blood tests will help the doctor to find what is wrong. Lupus can take a long time to get an accurate diagnosis so hang in there and don’t give up asking the reasons why you feel so unwell. 🙂

[KayHimm]

little dove - It sounds like you are pretty unwell if you are in bed and cannot work. I would think your joint and muscle point pain and fatigue would be enough to prompt any doctor to run tests for autoimmune disease like lupus.

Did you doctor mention what tests they ran? They often do a whole battery of tests in someone like you - Lyme disease, mononucleosis - as well as autoimmune screening.

I sure hope you get answers soon.

XxK

[Debbie_kinsey Administrator LUPUS UK]

Hi LittleDove97

Welcome to the forum.

We have lots of information on our website about symptoms and the process of diagnosis you might find helpful. This is a very short leaflet with an overview of symptoms and diagnosis: lupusuk.org.uk/wp-content/u... and a little bit more of a list of symptoms on this page: lupusuk.org.uk/the-symptoms/

You may also find this blog post on getting the most out of medical appointments useful, as it has tips and experiences from people on things like how to prepare, questions to ask, and that sort of thing: lupusuk.org.uk/getting-the-...

At LUPUS UK we support people who have lupus, but also those going through the process of diagnosis and figuring out if it’s something they may have or not. If you’d like to talk to someone with similar experiences, we have LUPUS UK Contacts - lupusuk.org.uk/contacts. These are people living with lupus or who have a family member with lupus so they aren’t medically trained but are there to offer both emotional and general support, and signpost you to someone who can advise you. You can use the form on that page to find your local contact, or send me a private message with your area and I can send you the details (probably when I’m back in the office on Monday as I’m not around at the weekend).

Going through the process of diagnosis of these sorts of conditions can take some time, unfortunately, which can be frustrating and difficult. If you ever have any questions or something I might be able to help with, feel free to message me or create a post on this forum. I hope you get the answers soon.

Take care

Debbie