Lupus vs Ehlers danlos

[aggdjdna]

Hi

I’ve posted before but am now pushing for diagnosis. I have chronic joint pain and stiffness, chronic stomach aches, nausea and IBS, chronic fatigue, photosensitivity, chronic mouth ulcers and chronic dry /red eyes. I have some evidence of discoid rash. I also experience balance problems and lightheadedness.

I’ve had bloods taken and my GP is reluctant to refer to rheum due to my age (23) but I am pushing for this. Without any blood results back I fit at least 4 of the diagnostic criteria for lupus, albeit some may be borderline. However, for hypermobile ehlers danlos I am very very borderline fitting the diagnostic criteria. I have diagnosis of hypothyroidism and ADHD already and suspected endometriosis. I do work in healthcare. I have a family history of rheumatoid arthritis.

I am really struggling at work which is why I am now pushing for a diagnosis having been told it’s normal / growing pains for a long time.

does anyone have experience of lupus or EDS or anything else it could be, it feels like a long road of proving my problemsZ

thanks

Have you looked at the Beighton criteria?

I also thought I might have Lupus at one point but it turns out to be Joint Hypermobility Syndrome

I have Lupus.
Two blood tests, both showing ANA of 1:640 were enough to start the rheumatology ball rolling.

They seem to be very reluctant to diagnose EDS these days so think you will struggle if your symptoms are borderline.

Are the tests your dr has done for autoimmune issues such as CRP/ANA/rheumatoid factor etc? I would push for these to be tested and get a copy of the results and if any are significantly positive they should def be referring you to a rheumatologist.

What were the blood results? If you’ve got a positive ANA and or dsdna they’ll send you to rheumatology. Without you’ll have more of a battle. Don’t focus on the name, there are thousands of autoimmune diseases with
overlapping symptoms. Focus on the symptoms and getting some meds or advice to help those (eg lupus you need to avoid uv light).

Following with interest. My sisters and nephews and nieces are all lining up for some kind of testing to do with Ehlers, apparently me and my kids have a lot of the same symptoms/problems. I always just thought everyone was really bendy, clicky and had funny heart rhythm. Apparently not.

Older sister is leading the project has had a real struggle getting a diagnosis as nobody has "joined the dots". As she puts it "when they say 'if you hear hoofbeats, think horses not zebras' we're the zebras!"

This is really interesting, found it as I was tested for EDS, but turned out to be fibro and severe hypermobility. It strongly confirms a probable comorbidity between hypermobility and neurodivergence (I'm ADHD/AS).