Hi! I'm new here but would be grateful for any help! I have a lot of lupus symptoms including :
Fatigue, pain in multiple joints, headaches, malar rash, other rashes when in the sun, raynauds and mouth ulcers.
This appeared fairly suddenly after being ill and has lasted a few months now-at first I assumed it to be post viral fatigue but then the malar rash led me to lupus. I've also had chest pain and breathlessness.
It took a while to be taken seriously but eventually got some blood tests which revealed a high ESR but everything else was normal.... negative ANA, RF and ds-DNA.
I have since been diagnosed with Ehlers Danloss hypermobility which could be contributing to joint pain and fatigue, however the above symptoms came on very suddenly and all together
I am feeling a bit exasperated as to what it could be-my doctor doesn't seem to think it is anything significant as my bloods were mostly normal. I am a university student and the fatigue and joint pain have made it extremely difficult for me... I am wondering if it is possible to still have lupus or something similar despite negative tests and if anyone on here has had a similar experience that showed something other than lupus? Sorry for rambling aha I'm tired of being dismissed and starting to think it's in my head
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aqt1
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Stay in close contact with your GP. He may be trying to reassure you about the blood tests. But you are not feeling well and the test for inflammation is high, so he will want to see how things develop. Many of us start out like you and then the illness shows its true colors at some point.
Make sure to track your temperature and take photos of any rashes.
I really do understand where you're coming from as my (very long 🙄) journey is similar to your own. Perhaps you could take a peek at my previous posts to save me getting hand fatigue!
I have very recently been diagnosed with Ehlers Danlos syndrome although I was convinced for many years that I had Lupus, or similar. The symptoms seen in the two syndromes can be very similar. Amazingly so...........
My lovely new rheumy took the time to explain that although the signs and symptoms of Lupus and EDS can indeed be similar, Lupus (and related AI disorders) is caused by inflammation while EDS results from physically compromised connective tissues and its resulting co-morbidities.
Thank you for your reply! I just had a look through your posts and I'm so glad you finally have a diagnosis and are able to get the right help!! My GP has also noticed I have some BP regulation problems form standing to sitting and a massive HR increase so will probably be referred to cardiology for tilts table test too as have been dizzy and fainting a lot-I've read that problems like POTS can be very common in hEDS patients too. I didn't realise how much of an effect hEDS can have...in my mind it just explained my hypermobility (although I did gymnastics for years so never really thought about it much) , now maybe it can explain fatigue and other things too-will definitely ask for more information in my appointment so thank you.
The thing that doesn't make sense to me is the rashes as it doesn't fit at all, wondering if you had any problems like this? I have an appointment with a dermatologist soon but my older sister is an F1 and doesn't think its rosacea.
I agree that your rashes don't fit EDS. While I feel unwell in the sun and being in the heat, I turn a very unflattering shade of puce 🔴, but there is no rash.
The raised ESR is also of concern - how high was it - but this may have been a reflection of your viral illness. May I ask if you were dx'd with EDS by a rheumy or did this come from your GP?
Just to be clear, you have some very concerning symptoms that need some answers asap so that you can get the treatment you need. Please press your GP for answers in the first instance and ask for a referral to a rheumy if you haven't seen one already.
Wishing you all the best and please feel free to ask lots of Qs from this lovely friendly group.
It wasn't too high-it was 15 points above the normal range for my age, will have a repeat soon to see if it goes down. I haven't really had a viral illness since I had covid over 3 months ago, I'm not sure how long this can affect ESR.So the heat exacerbates your symptoms?
My GP went through the Beighton score with me and it was 9/9, so had said its very likely and is referring me to rheumatology. I also have a separate appointment booked with a dermatologist in a few weeks, but I am not sure how much to tell her-obviously the focus will be the rashes but i have no idea what else is relevant
Did you ever experience tremors in hands and legs? I have had them on and off for about a year now, they're nit particularly dramatic and only slight but I was wondeirng if this is linked? I have not yet mentioned thi sto my doctor as it seems like the least of my problems!
Ah, 15 points above normal ESR range is quite high and certainly deserves to be monitored. Not sure if Covid would cause it to be so raised
🤷♀️
Yes, I feel particularly unwell when its hot, but this is because my temperature regulation mechanisms are poor, probably due to autonomic nervous system dysfunction (dx'd by my cardiologist recently). I also have an intention tremor (ie the shaking stops when I touch the target), probs also linked with autonomic nervous system problems.
I note that your GP dx'd hEDS.
Mmmmm, this is soooo complicated. I can see your GP is on the ball and he's defo trying to help you, but he's probably not expert enough to diagnose hEDS - you really need to see a rheumy who's got an interest in this syndrome. I say this because hEDS is now considered to be a 'spectrum disorder' in that some people have very mild symptoms (and are flexible, but that's about it) while at the other end of the scale there are those that are severely disabled.
I hope this has been helpful.
I'm certainly not an expert in EDS but I've done an awful lot of research in the last few months and I hope my experience is useful to you. Others here may come along with more info.
Thank you again for your help!How did your cardiologist diagnose the autonomic ns dysfunction? How is your intention tremor treated? I am happy for you that you finally have some answers btw!
Do rheumatologists inn general not know about EDS much then? I am waiting for rheumatologist referral but my sisters friend has hEDS and went to see a specialist in London as she wasn't getting anywhere and was told they couldnt't really help with symptoms
I've had symptoms of autonomic nervous system dysfunction for many years but it was finally dx'd when I had a bad reaction after knee surgery last year. An hour or so after the op my BP plummeted to 55/45 and stayed there for about 4hrs. My extremities became very cold so they wrapped me in a hot blanket. At the same time my blood sodium crashed and I was put on a saline drip. My cardio says these are symptoms of a severe ANS reaction, albeit it lasted much longer than he would expect. I've had several such episodes in the past, but not so severe as that one - I seem to react inappropriately to perceived stress. Actually, it was this reaction that eventually lead to me seeing a new rheumy who put all the - very complex - pieces together and diagnosed EDS.
I was referred to this particular rheumy (Dr W) because he has an interest in EDS, he'd made his dx before I'd even entered the surgery! I was very lucky to see him; apparently he was dragged out of retirement because of rheumy shortages during the pandemic. Not many GPs or rheumys have experience with EDS, but research is making progress in this area.
Not much can be done about attention tremor and other people notice it more than me tbh. Again, supportive care and treatment of symptoms as they appear is the best you can hope for with EDS. But for me, it was all about knowing what I'm dealing with - knowledge is power!!
You can get through this and move forward - I get the feeling that you're a very bright, strong, proactive young lady. Please ask as many Qs as you like
Do you have photos of your rashes from being in the sun? In the early days, I had severe rashes - not on face but knees and hands - when on a beach vacation. Nausea and fatigue got worse also. My only wonky bloods were ESR and hematocrit in those days.
Thank you so much for your reply!My face rash(butterfly one) has stayed on my face for a few months now and is the worst one, I think it's what prompted the doctor to do AI tests so soon. Gets a lot worse in the sun and also sometimes I I will just be lying in bed resting and it feels like my face is burning-not really painful bit definitely uncomfortable. The rashes from the sun on other parts of my body vary a lot and aren't generally that bad, they just appear quickly and definitely in response to sunlight The chest pain comes and goes and is like a sharp pain that does get worse when I breathe in and also when I cough...not sure if this is due to something else as I am also awaiting more investigations for fainting and dizziness etc
Can I ask if you have been diagnosed with lupus now? And when/how did your bloods change?
Usually spread over more but that's the clearest one that shows the shape and pattern
I wish I could see the rash but it did not go through. Did the doctor think it was consistent with the lupus malar rash? This is very important because there are other facial rashes like the ones from rosacea that are also photosensitive. The sun-induced rashes on other areas could be something else but not rosacea.
I think it was five years that my ANA became positive, notably after sun-induced flare. I was diagnosed with undifferentiated connective tissue disease - no anti DNA antibodies, no kidney disease and do not meet lupus criteria.
As I see it, your symptoms could some day be lupus. The doctor is in a bind. Photosensitivity rashes are not enough. He may not know yet what is causing the chest pain. You do show signs of inflammation.
My opinion is to stick with your GP so that he can see what develops. He can re-test. If your rash is prominent, you might ask GP about going to a dermatologist. From what people here on the forum say, the waits can be long. If you can get in to see someone privately, they could probably diagnose your rash if it a classic lupus malar rash.
That is just my opinion. You have something visible that could possibly move things along. Talk to your doctor.
Could you re-send the photo?
What work up are you getting for the fainting? Many of us have POTS and other forms of autoimmune dysfunction.
The rash on my face(malar butterfly one) was what led her to lupus so I assume the doctor thought it was consistent. I have looked up pictures of the photosensitive lupus rashes and mine aren't scaly/flaky so I'm not sure if these ones match. I'm not sure how well my face rash goes with rosacea too-no signs of blood vessels and I have always been lucky with clear skin-the rash is permanently there and looks like sunburn that spreads across my face apart from chin and forehead, it gets a lot more red and prominent after being in the sun.How did you manage during those 5 years of waiting? The joint pain and fatigue are making it very difficult for me to do my daily tasks is there anything you dd that helped or was your main problem the rashes? I also have normal kidney function.
I have tried but the phot won't attach in any other way-thank you so much for trying to help, it's reassuring to be told its worth pushing.
I have been fainting on and off for years and have been to the GP about it a few times. It was dismissed as being related to my period and vasovagal. Had one ECG done because I fainted and was out with no one who knew me so was taken to the hospital, they did an ECG which was normal. My GP noticed some fluctuation in my bp and hr when going from sitting to standing-she said after referring me to rheumatology they will be able to refer me faster for a tilt table test as hEDS is often found with POTS. In my next appointment we will also discuss a 7 day BP monitor I believe. I have had an ECG recently too which came back normal but tachycardic-my hr has been high for a long time now!
I was actually diagnosed in a year and a half. The rheumatologist I was sent to ran a vdrl and it was falsely positive. This used to be one of the tests for lupus before testing became more sophisticated. I was in the watch and wait category and diagnosed with UCTD after sun induced rash that he could document. The positive ANA was after about five years but didn’t change diagnosis.
There are quite a few people here with EDS. They can definitely help you with that. My tilt table test was positive even though “poor man’s test” was negative. If your blood pressure fluctuated in the doctor’s office, it seems there is a good chance your tilt table test will show something. Just a warning: it is a very hard test. Be prepared.
A year and a half seems like such a long wait even though I know for many people on here it has taken even longer! Was there anything you did that helped with your symptoms whilst waiting? I have started using SPF50 suncream whenever I go out which seems to be helping a bit.So you were diagnosed with UCTD with a negative ANA?
OH no! A hard test due to the fact it can cause symptoms like fainting? Or just uncomfortable? I think my HR generally does increase by about 40 bpm pretty much straight after I stand up but it doesn't always last the full 30 seconds so not sure if I would qualify for POTS. It also doesn't always happen
No, it was sun avoidance after diagnosis that helped tremendously.
Yes, the tilt table test will continue until they get the information they need. If you have orthostatic hypotension, your body won’t tolerate the upright position. It sends you into a pretty awful state of fainting and nausea. The nurses will explain all of this to you and apologize that they cannot help you. Doctors do not like to order the test unless they really need the information. I was diagnosed on symptoms only and ultimately had to have the test.
Yes, I was diagnosed with false positive vdrl, negative ANA. Tests were not as good back then, though.
If they prescribed Plaquenil, wasn’t it implied that you have systemic autoimmune disease? Very confusing.
Like many of the reply don’t give up!!! I had a horrible experience. You mentioned skin rash have u been to dermatology yet? I had a positive AN and rhumotolgy still told me I didn’t have lupus. I went to dermatology a few months later they knew right away and did the biopsy. The biopsy and some other AN results provided concrete proof I have SLE Lupus.
I hope you get the right treatment soon and start to feel better!!!
Thank you so much for your support, and I'm so glad you were able to get a diagnosis. I will be seeing a dermatologist soon however my ANA was negative so I think they will look more for other causes and probably say its rosacea even though it doesn't seem to quite fit. Thanks again!
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