Hi everyone! I’m pretty new to this app. I have been checked for lupus 3 times, drs keep checking my ANA and it keeps coming back neg. they are looking out for hashimotos too, my cousin has it. I have a wild mixture of symptoms but I’m undiagnosed as of right now. I know that I have fibromyalgia at the very least, but given my symptoms my rheumatologist and pc are exploring what else it could be.
I have the following symptoms: nerve pains that come and go, freezing cold hands and feet, muscular pain and chronic muscle tension, migraines and tension headaches, cannot eat gluten my muscles all over my body will spasm for days, dry eye, stiff achey joints, bad fatigue and brain fog, sometimes chest pain and shortness of breath, sometimes urinary frequency at night, protein and blood in urine, sometimes ketones in urine, water retention in abdomen and face. These are the main symptoms that bother me most. My blood pressure runs pretty low, typically 100/60, but when I went to the doctor with chest pain and shortness of breath it was surprisingly high for me at 130/90. I do not have diabetes. I’ve had a full cardiac work up for the chest pain and my heart is in great shape. Bloodwork comes out normal except for a slightly elevated BUN/creatinine ratio. I have to give a 24 hour urine collection and I’ve been referred to a nephrologist for that.
I guess I have 2 questions, has anyone experienced symptoms like these? I don’t want to speculate or diagnose myself, the drs will handle that but I’d like to hear other experiences and if this sounds familiar to anyone. And any tips on getting through the diagnostic process? It all has me feeling very frustrated and discouraged.... it’s very stressful, and in addition I’m a full time engineering student, a mother, and I work part time!
You need rapid resolution em8472, that's a lot of symptoms. ANA isn't the only test for lupus....check out Table 5 in the SLE guideline* and see if you match (at least one of the immunological criteria is needed) and ask for all of the blood tests listed to be done.
It is a very frustrating process but keep at them - hopefully you have an urgent referral to the nephrologist.
All the very best for your degree and family life! xxx
Isn’t it also true that a kidney biopsy is considered confirming of lupus if ANA is negative? I thought even in the proposed new classification most rheumatologists consulted said they would accept the biopsy. Nephrologists certainly know lupus, so getting that referral should be helpful, right?
And yes I was referred to nephrologist and I am working with a very good rheumatologist. One of them should hopefully be able to figure out what’s wrong if my labs and 24 urine catch don’t show anything concrete.
Yes, nephrology should be a great leap forward...both ACR and the UK assessment need at least four criteria for SLE, at least one of them an immunology blood test (not necessarily ANA, in the UK)...at the ACR conference last October, an amendment to the new classification (bindevevssykdommer.no/en/ac... was proposed dropping the requirement for positive ANA...the ACR 2018 doesn't seem to have been published yet
Treat your health care like an engineering project em8472! - there will be dead-ends, but doctors can scope out the 'works' by looking at the big picture, not by dealing with one problem at a time. Hope you get there soon! xxx
Hiya my daughter has these symptoms and has been unwell since having a ‘virrus’ Back in late August last year! She has had many tests for lupus and other autoimmune disorders and all come back negative. Still has blood and protein in her urine! No one seems interested that she is only 14 and cannot stay awake long enough to do more than 3 or 4 hrs of school per day. And has to wear 3 pairs of socks and thermal tights to try and stay warm. If you do get a diagnosis please share! As I’m sick of googling possibilities x
Sorry to read your daughter is unwell. She’s very young. I hear a lot of stories where viruses kick start an autoimmune disorder. Have you searched for a specialist in your area?
I eventually paid privately to see a specialist and then he got me referred under the nhs.
I’m so sorry your daughter is dealing with this! 14 is so young to be having all of these problems. It makes sense since I didn’t develop any symptoms until just after giving birth. Maybe a sudden shift in hormones triggered it. I know how she feels, socks and blankets don’t even help my feet, I have to get in a hot shower to warm them.
In the meantime I would recommend making sure she isn’t sensitive to any foods. My joining pain and muscular symptoms were much much worse before, they have hugely improved since cutting out gluten. Thanks for your reply, I’ll definitely post an update. Best of luck with your situation!
Yes I have thought about going private. It’s a bit of a mine field and not sure who we need to see. We’ve already seen specialists at Birmingham children’s hospital and they have passed her back to our local hospital. Think I will talk to the gp and see who she can suggest. She has had a ct scan and xrays and cameras in her nose. At one point she was black and blue from all the bloods taken. I just feel so sad for her! Am I right I’m thinking that autoimmune conditions can be triggered by puberty? Cause she got I’ll the same week as puberty started x
I believe my hormones contribute in many ways . I thought I had a condition called autoimmune progesterone dermatitis, but very little is known on this.
I have a friend who’s son recently had glandular fever which has triggered off CFS.
I would recommend you go back to your gp. Try and encourage your daughter to keep a diary of her symptoms, you May notice a pattern or a trigger.
I blame hormones for all my probs.mine was childbirth,was the tin lid .try and tell her to be a health freak it really helps keep away from prossesed foods .keep her diet natural and pure!!x
Hi em8472, I’ve had lupus nephritis diagnoses for 12 years now and started presenting with symptoms like this in the beginning. Swelling in the legs and ankles and face which was severe and Urine very high in protein and blood. They got me straight in for a kidney biopsy which confirmed (as well as they could) lupus. But it’s these symptoms are prevalent In many things so it’s good to keep
An open mind. HoWever back to lupus.
, my ANA has never been positive!! I think maybe once in all that time? Definitely doesn’t mean I don’t have lupus, have 3 biopsies and stage 3/4 kidney disease to prove it! Other tests such as complement 3,4, DsDNA’s, ESR’s are all markers but again aren’t on their own enough for diagnosis, but similarly, can also be negative or normal levels when there is lupus. I’m guessing the protein in the urine isn’t ridiculously high and with the creatinine being only a bit raised that that’s why they aren’t doing a biopsy yet? But hopefully your nephrologist will be able to give some answers and make a plan going forwards to get a proper diagnosis of some kind,
All the best! (P.s I’m 27 so also understand how frustrating it can be when you’re young trying to get these things sorted etc so really sympathise with your situation£
Lupus is sometimes hard and a long process to diagnose. I had issues for 5 to 6 years before the doctors found it. Actually a dermatologist found out I had lupus by accident!
I had a rash, on my arms, I thought it was ring worm. Dermatologist said no, that’s not ring worn that’s Lupus! They started out with blood work, it came back positive, they done a biopsy, it came back positive. Then she sent me to a rheumatologist, they done all of their test. The test results came back positive for Lupus (SLE). So I have been diagnosed with lupus for 7 to 8 years now.
Don’t give up I am under the impression that Lupus will only show up during a flare? So if that is true then, it could take some time to get diagnosed?
So hard with these “crazy” symptoms. The nephrologist should be very helpful. It is good you have been referred. It has to be hard to be a student with all of this going on. Hope you get some answers soon. K
Almost every symptom you describe can be caused by dehydration. I had a lot of those symptoms, only to discover that I was not drinking nearly enough (even water retention paradoxically can be caused by dehydration as the body tries to hang onto what little it has). I have lupus, but not every symptom you may experience is about lupus.
Drink at least two quarts (64 ounces) of fluid a day, and avoid things that lead to dehyrdation (caffeine and alcohol) for a while to see if your symptoms reduce. Try drinking as much straight water as you can and avoid large amounts of coffee and caffeinated drinks. Alcohol of any kind (beer, wine, mixed drinks) is extremely dehydrating so take it very easy on that, or drink a lot more straight water when you do drink alcohol or coffee/caffeine drinks.
btw, the 24 hour urine collection will also help tell diagnose whether your problem is dehydration, or your kidney's malfunctioning in a way that leads to dehyradation. But if you're drinking well less than 8 cups of fluid a day, or drink a lot of coffee or alcolhol, you could well be dehydrated.
Yeshe doctors did tell me that, I drink a ton of water though. Several bottles a day and I don’t drink anything else except maybe a glass of wine once a month or the occasional hot cocoa :). That’s what is confusing. The day that I had an elevated BUN/creatinine they asked if I was dehydrated and I actually had dry mouth and had been chugging water all day. Doing the urine collection today!! Hopefully that leads to a conclusion of some sort or at least points in the right direction... thank you for sharing your insight, best to you!
Show them Table 5 from the guideline - it's fairly new, so it's quite possible they don't know the contents (my rheumy didn't LOL! - but with a little persuasion, he is now doing the monitoring tests in Table 6!) xxx
Hi. What u described sounds like me except I have high blood pressure. I am now being treated for lupus/undiagnosed connective tissue disease. .positive Ana and lymphopenic etc but they still waiver between the 2 diagnoses. I am on the usual mesds for lupus but have found rest and pacing is the best remedy....this will be difficult in your situation and is going to be making the problem worse. As the others say...u will need to be really proactive to get a diagnosis so keep on keeping get on do t 4get to take care of u xx
Get your B12 checked. If you are taking vitamins, then make sure they check intrinsic factor and "active" b12 in your system
Hi I read your post with interest and your symptoms are almost identical to mine. I have M.E (CFS), fibromyalgia and am being tested for lupus. I also have the symptoms of scleroderma and Sjögrens amongst other illness. I would print out a checklist of each individual disease and tick off your symptoms and hand them to your health care professionals and ask them to test you for each and every one of them till you have had all the tests then they have done this you get your all your medical records to file away as I was diagnosed with illness then told I was fine and it’s only when I read my medical notes that I realised I hadn’t been informed of the results. You will learn a lot from them. You must look up and get very well informed on any symptoms, causes and tests so you can keep up with the Drs as I found that helped me. I wish you the best of luck as it takes a while to get the results. 😀
Hi em8472, it's possible that you have Raynaud's and Sjogrens. My hands and feet are always freezing and when I was first diagnosed with SLE in 2015 I was having hot baths in August when it was at its hottest!! I know it sounds barmy. There is a lot of good information on the Arthritis UK website as well as Raynaud's and Sjogrens websites. Fingers crossed that you get a final diagnosis very soon. Good luck xx
Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...
Around 5% of people with lupus test ‘negative’ for an ANA test. dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population). To find out more about these antibodies and the specific tests and criteria needed to make a diagnosis of lupus, visit lupusuk.org.uk/getting-diag... - Fibromyalgia can be commonly diagnosed during early stages of lupus. The FMA UK website provides information on fibromyalgia and its symptoms as well as useful links for local support networks, advice and over-lapping conditions: fmauk.org/
Extreme fatigue, brain fog, muscle aches and pains and dry eyes are all symptoms commonly associated with lupus. Below, I have included some information links which I hope you will find useful:
The symptom you describe with regards to your hands and feet sounds like Raynaud’s phenomenon. In people with Raynaud’s, the small blood vessels in the extremities are over-sensitive to changes in temperature. This causes a Raynaud’s attack where the fingers sometimes change colour (but not always) from white, to blue, to red. Sometimes the fingers may become painful or have a tingling sensation during the event. Symptoms of a Raynaud’s attack can last from a few minutes to several hours. We published a blog article on ‘Coping with Raynaud’s Phenomenon’ which you can read here: lupusuk.org.uk/coping-with-...
Stress is an important trigger of lupus as it can cause a person to experience a flare of symptoms. We published an article on our blog about stress management and relaxation which I hope you find useful: lupusuk.org.uk/stress-manag...
Please keep us updated, wishing you all the best.
Hi having read your post I was most intrigued as I have all your symptoms and more except the blood pressure issues. Have you seen a neurologist to confirm fibromyalgia. I would definitely go online get a print out of all Fibromyalgia symptoms tick them off and do also with listing all M,E (CFS) too. Then get a list for lupus and tick off all the symptoms take them to your dr and your rheumatologist and ask for advice. I was diagnosed with CFS then it progressed to Fibromyalgia now after seeing the rheumatologist team today I now finally have my lupus diagnosis. I feel that the NHS is under such a strain that patients are not getting the full care they need. They are not getting a thorough diagnosis and every one is just left waiting. It takes time sadly it’s frustrating for everyone and I have almost had a complete nervous break down in the process. You must keep a diary of symptoms to present to both a dr and rhythm and it’s so important you have your full medical notes as your health care professionals don’t always inform you of everything. The information takes time to understand but the more you know the faster you can make sense of it all. It’s only now that they have left me so long without a diagnosis or treatment that I have finally got much worse and as my lupus is not under control they are all panicking. You have to be your own GP. I wish you the best of luck. You are clearly not well and I hope you get the support you need to get well. Have a great evening. Elena.
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