Has anyone on this forum experienced years of symptoms before being diagnosed with lupus please? If so what were your symptoms?
I’ve been unwell for nearly 3 years and all the bloods tests carried have come back normal apart from the ANA test which showed slightly higher levels of inflammation & CRP test which also came back with slightly higher levels of inflammation.
My symptoms are lower back pain which goes up my back down my arms into my hands (I already have very bad arthritis in my hands). Pressure in my head and sometimes when I’m having a really bad episode my breathing is laboured. I also keep getting ulcers on my tongue which has been recurring.
Thank you in advance for your advice or help.
Hope you all have as good a day as possible
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fish47
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I was diagnosed with SLE in 2018. I believe I have had it for many years. I had symptoms such as:
Pain in neck, back, arms (put down to years of nursing)
Loss of movement & sensation in right arm & hand (tested for MS, thankfully negative but was told it was probably a trapped nerve)
Loss of function in hands and increased pain (told by consultant it was caused by my anxiety)
Poor sleep, constant lethargy & fatigue, IBS (diagnosed as being a nurse / mum )
Regular costocondritis (no answers)
Hip bursitis ( physio said nursing patients / positions when delivering babies)
Unexplained infertility (after 2 children)
I woke every day feeling jet lagged and in pain. I thought this was what years of nursing & midwifery had done to me. Then in 2018 I suddenly got a Malar rash, joints got so stiff I couldn’t walk and I was so oedematous I looked like a puffer fish.
Finally tests were performed and I had Lupus plus fibromyalgia.
I hope you get answers. Don’t be afraid to ask for a second opinion (I didn’t!!) and ask to be referred to a Rheumatologist, if you haven’t already. 💚
Thank you for your info, sorry to hear you’ve had so many health issues. So now you are on medication for lupus has this helped you?
I forgot to also mention my eyes are really affected and my face is always red when having these episodes but again GP makes nothing of it & says it’s rosacea. I do suffer with fatigue. I’ve lost over 2 stone in weight in is unintentional.
I’ve had my hands xrayed but again GP says it just shows inflammation & because of that he’s not referring to a rheumatologist.
Last year I was diagnosed with diverticulitis of the sigmoid, IBS, Proctitis & a pharyngeal pouch. Paid private to see a dietitian because the waiting list was so long.
It’s just so debilitating.
I’m at my wits end as not able to make plans as each day I never know how I’m going to feel.
Apparently my GP is one of the best ones in the surgery. So I’ve got no chance & other practices in the area are worse. I’ve been told that by various paramedics I’ve had at home over the past 3 years ☹️
OMG go private! For years I had problems with my stomach and kept getting told it was IBS. Then slowly other symptoms speaking in such as, bad neck and back, mouth and nose ulcers, chronic fatigue and headache, constant tingling/burning sensation all over my body, constant pain in hands, legs, feet... I thought I was going mad. Like many of us I started to think I was going mad. My doctor kept saying g it was anxiety and menopause... I was eventually diagnosed with diverticulitis - which answered the stomach situation, but the rest... complete nightmare! Given I'd had early menopause 30 years ago I knew it wasn't that, but just for peace of mind I paid to see a menopause specialist, who confirmed that. Still the doctor said it was anxiety, so I went private, first to a neurologist who found nothing, then to a rheumatologist - he saved my life after diagnosing UCTD and Fybromyalgia Life still isn't easy, doctor is still not helpful and gave started with some new issues, but at least I know I'm not going mad! Please don't ignore your own gut instinct that something isn't right x
No this wasn’t mentioned, the rheumatologist just said he thought I was suffering with body sensitisation syndrome, which I thought at the time was rubbish. Still to this day my symptoms are the same.
Most people with Lupus take several years to get a correct diagnosis- some can take 5-10 years.
Not every person even has a positive ANA, and people without an autoimmune disease can have a POSITIVE ANA. So that’s why the drs don’t rely totally on ANA TESTING.
But - you do have several symptoms that are very similar with Lupus patients initial symptoms - since LUPUS can ATTACK every system in the BODY- Thus, LUPUS “Systemic” Erythematosus
Find a NEW RHEUMATOLOGIST if this Dr is not looking at the ENTIRE plethora of Systems that can be part of Lupus.
Continue to be PRO-Active in Researching Lupus and ASKING QUESTIONS- we all have been there, and when we finally get a CONCRETE DIAGNOSIS, it is like bricks lifted off shoulders - then correct THERAPY & TREATMENTS can start up to “lessen” symptoms- they don’t usually totally stop, just more manageable.
You can START living Your Life and do all the THINGS WE DO to reduce symptoms:
- STAY OUT OF SUN
- LOWER STRESS
- REST when you feel a FLARE coming on
- LEARN what triggers flares. (flares are different for everyone- but most have the EXTREME FATIGUE, Joint Pain, SUNLIGHT & FLORESCENT LIGHTING can trigger flares)
I’ve had an ANA test twice now, once in June 2020 and again earlier this year and each time I had slightly higher levels of inflammation. It had an X-ray on my hands (debilitating arthritis) 2 months ago because my GP needed more supporting evidence before he could refer me to see a rheumatologist. The X-ray showed inflammation but apparently still not enough to refer me to a rheumatologist. A recent CRP blood test also showed slightly higher than normal inflammation but GP said that is normal for people who has a slight cold but I didn’t have a cold.
I did pay to see a rheumatologist January 2021, he looked at my symptoms and the ANA results, then examined me and came to the conclusion then I didn’t have lupus. Here I am now still with the same symptoms & in fact getting worse. I may have one good day out of 7, when I say a good day I mean just able to function. Thankfully I am eating a healthy.
I have F2F with my GP in the next couple of weeks so will make sure I write all my questions down. Thank you also for the link which I have started to read.
Hi.yes it took 5 years to get a diagnosis ( the average is 6 yrs) and like greentomatoes looking back I've had symptoms alot longer.there is an 11 point criteria for lupus you may find helpful. Bloods are often normal and can flit between positive and negative. There is also alot of overlap with other AI illness which makes it all very complex and difficult to diagnosis.I had joint pains,stiffness in a morning,recurring breathing issues ,fatigue,rashes,nasel ulcers and dry eyes,I also have other Ai illness which can co exist with lupus.
Keep a symptoms diary and pictures of rashes. You may find staying out of the sun helps.you just got to be persistent xxx
Crikey, I don’t believe it can take that long to diagnose, you must have felt just like I’m feeling right now, so, so frustrated, poor you.
So how did they come to the conclusion you had lupus and what medication did they prescribe in the first instance please?
I’m the same in the morning very stiff and in pain.
I also have times when I have difficulty breathing and palpitations, however in the beginning I didn’t know what was happening to me and I believe looking back I had panic attacks, now I am better at managing the breathing (plus I also suffer with asthma). I’ve also lost over 2 stone in weight which hasn’t been intentional.
Long story. My recurring hospital admissions with breathing issues ( pleurisy is common in lupus) Ied to me being seen at North West lung centre.they said Ai try and reduce the steroids.i came off them and went stiff.sent to rheumy routine urine sample was off the scale,sent to Preston renal unit where a biopsy showed class v lupus nephritis. I've had positive ANA and DS -DNA in 2016.i also have thyroid disease, b12 defiency anaemia and sjogrens all are other AI illnesses.I'm on Hydroxychloroquine tried azathioprine but that didn't work for me and I'm now on mycophenolate as well as a whole host of other things for lungs and pain.im photosensitive so got to stay out the sun and cover up head to toe.got tp keep stress levels to a minimum,pace myself and rest xx
Just to add ..food intolerance is common in lupus.i was given meds for ibs and it turned out to be lactose x
HAIR LOSS - The FINAL SYMPTOM that I brought to my GP finally get her to TEST for Lupus.
“Hair Loss” - BALDING SPOT ON back of head 🥴
With all the other symptoms over years, finally an answer. They were trying to say:
Just Allergies, fatigue & rashes 😳
Post-Partum Depression 🤔😂
Just Arthritis - 30’s a little young 🙄
Anemic - my fatigue problem (really?? It was EXTREME)
CAUGHT “Viruses” so EASILY (that would keep me down for 1-2 wks ? Like ALWAYS having the 🤒 FLU - DEAD TIRED
Etc.........
We just get use to the CONSTANT symptoms till finally a DR LISTENS & hopefully NOT a MAJOR ORGAN (like HEART - one of the SYMPTOMS they can MISS - MYOCARDITIS- It has happened to several friends)
I am 32, and I feel like I’ve been “sick” my entire life. I’ve had issues with white blood cells, viruses, body aches and pains since forever. Growing up I always (and still do) have recurring kidney infections, kidney stones and just generally sore kidneys.. I remember once they were investigating me for leukaemia.. I had lots of time off school due to always being unwell and my parents always thought there was something wrong and well here we are… 🤷🏻♀️I got diagnosed in 2021 after an IVF pregnancy and giving birth to my second child in 2020; after this everything got so so much worse I then developed the butterfly rash and my mobility decreased immensely! I even needed help in and out of bed. I was also diagnosed with rheumatoid arthritis and raynauds which also explains so much too! I got an amazing GP who basically diagnosed me there and then, and later confirmed with blood work - she still supports me to this day! Amazing lady ❤️
My daughter who is now 20, had symptoms for years. She had pains in her legs from very young but it was put down to growing pains but as she got older the pains would increase to her hips, shoulders, back & arms, hands then extreme fatigue, ulcers, headaches, pins & needles sensation in ankle, feet, constantly ill, rashes & typical butterfly rash on bridge of nose, the list goes on, no quality of life. Initially we went to dr for pain in her teens, we were eventually referred to a rheumatologist, we saw 2 & all bloods negative & no diagnosis, we saw a third who diagnosed her with probable fibromyalgia. We weren’t convinced so paid for a private rheumatologist consultant who specialised in auto immune diseases. We took photos of everything we could through the years as this is a great help. The consultant also diagnosed with definite fibromyalgia & probable mild lupus. She gave her meds which if they work will not feel effect for 3-6 months. She said from the photos & symptoms she was quite sure she had lupus! So although it’s not a full diagnosis it’s a probable we have meds, that are yet to work but hopeful. I hope this gives you some hope but we had to pay private & photos! Bloods negative!
Hi Fish47, Yes as spanielmadlady said does takes that long for it to get diagnosed.
I was diagnosed in 2010 .But my illness started way back when I lost all immunity of my body I did not realise until i was expecting my 2nd daughter. I still dont hold immunity of any vaccines. Then migraines started . Then in dec 2015 my migraines started to increase and change it effected the right side of my body I was like having a stroke and it also effected my face. We saw a consultant for this my migraines we were not impressed so was my Gp as it was a single one off appointment. It was a NHS . So he gave me an option to chose another hospital and I went for Oxford. Back then it was the best choice I have ever made . The drug I started on initially did give me some least of life though it slowly minimises the amount of migraines I had in the day . Then in the week then in the month. Then one day I contracted multiple infection 3 different types of infection chest ,bladder and bowel. I was in a bad way. Once I was over that infection not only I was in alot of pain I was not able to walk. I also felt that I lost loads of strength it was a weird sensation. I can now imagine what it felt like for Samson to lose all his strength when his hair was cut off.
From the time of the migraine to the infection was 5 years . But if you were to take from the time of lost of immunity it is much longer.
Dont be afraid to ask for a referral from your GP . You have a right to be referred. If you show those abnormal symptoms, it is within your rights to be referred.
See physically a different GP and get him / she to examine you throughly. To make a proper assessment and then get them to refer you to a rheumatologist. All the blood while it is mild it is still worth while referring now than later the earlier you get treatment the better you will be and faster you can stabilise.
Thank you for your response, I have a F2F with GP in the next few weeks. I’m sorry to read you’ve had such an unfortunate experience, hope you are in a better place now.
Fatigue tiredness pain all over, swelling in odd places - on one limb , On lips, like you had been stung, ankles swelling, knees at the back of it . It is all very off and odd also purple fingers only on one hand that lead to the swelling of my arm they could not find anything wrong with my arm did all the test under the sun. So just be prepared for all the weirdness that is comes with it . I was also diagnosed with Bronchiachitis at the same time with my SLE. If you get a good Rheumy he/she will do a full check ie MRI scan , Xray and full blood works on you and you should get a good diagnosis.
Yes took 20 years of knowing something was wrong and the last 14 years of it with various symptoms but fatigue all the time and having to rest and sleep for a large part of the afternoon from the age of 38. All blood tests except double stranded dna which was high. That got me the Lupus diagnosis for sure and sjogrens diagnosed from symptoms alone. Keep on searching if you know something isn't right and be prepared to pay privately with an autoimmune specialist. Fatigue is the overwhelming and constant symptom with most of us. I hope your journey gets you the answers you need.
Thank you for your response to my message, everyone has been so helpful & informative. It’s just such a shame it’s taken so long for everyone to get a diagnosis & suffered so much.
Hi Fish, sorry to hear you are in so much pain and discomfort. It takes a ridiculously long time to be diagnosed with lupus, and I think this is mainly because it’s a diagnosis of exclusion, meaning they test for everything else first and if they rule them out, they’ll go to a lupus diagnosis.
My diagnosis took 8 years, although I think the fatigue began even before that. My first major symptom was vocal nodules (bamboo nodules), plus pericarditis, brain fog, fatigue, recurring mouth and nose ulcers, and positive bloods. I didn’t get diagnosed until I sought a second opinion.
Since then, I’ve developed rashes and arthritis in my hands, knees and jaw. I also have a host of other problems (dizziness, neuropathy, trouble swallowing, osteoporosis). Best thing I can recommend is shop around for good doctors who will think outside the box and advocate for your healthcare. And don’t be afraid to seek a second (or third) opinion!
Later on, my “Larynx CLOSED UP by 75% “ I was struggling to get AIR into my Lungs- so simple operation to stretch it BACK OPEN along with my ESOPHAGUS - Stretched for 2nd TIME (food getting STUCK in Esophagus is always a problem during FLARES - DYSPHASIA)
We never know what’s next....💜🥴💜
Lupus FINDS the “WEAK AREAS” of EACH PERSON - that is why we are DIFFERENT w/Symptoms (somewhat like COVID finding the WEAK AREAS to ATTACK In Bodies)
With me, it began about 6 months prior to diagnosis, or at least that was when things escalated. Before that fatigue head aches and joint pain was there,but like Greentomatoes I put it down to years of nursing. The first thing I noticed as severe burning pain in my ankles, when checking they were blotchy and swollen. Turned out to be vasculitis and I couldn’t wak. The next thing was my red and white blood cells were all over the place. Next I had a fit while shopping . Six months of test after test and it was diagnosed, it had probably been with me for about three or four years beforehand.
It took 20 years for me to finally get a diagnosis. (Which Apparently started after the birth of my first daughter who is now 48)
Such a long story of various problems, too long for this page.
Diagnosis was missed 10 years after first symptoms, by my GP who didn’t read a report from a Consultant & only came to light when I had a new GP. Eventually after thinking I was losing my mind as none of my symptoms were taken seriously & reaching the point where walking & climbing up the stairs was so painful, a new young GP decided to carry out relevant blood tests. Needless to say SLE was diagnosed.
I attended St Thomas’ hospital, Louise Coote unit - under the care of Dr D’cruz & got the treatment I needed. (20 years later!)
During all those years I had been given various medications for wrongly diagnosed illnesses, which aggravated the Lupus.
Fast forward - I am now 72 years old, active with a husband & 4 grandchildren to keep me on my toes (literally!)
I have always worked full-time in an extremely busy, local authority public facing office, which I believed kept me going, mentally .
I stopped taking Hydroxocloroquine 4 years ago due to long term dosage & am in remission. I was a difficult patient in the early days, refusing a lot of steroid based medication, because of side effects - however, the team at St Thomas’ listened and supported me throughout.
Of course I’ve had so many associated problems, not been able to move for days because I was so poorly & in pain and everything else that Lupus throws at us, but - I’m here to tell the story & always say ‘I’m fine thanks’
I do wish you well & hope you get the right support. Just be kind to yourself & just go with it, you’ll be ‘fine’
Gosh it seems so many people who have responded to my msg have had awful experiences before diagnosis but it gives me hope that fingers crossed I too will receive the necessary help/treatment.
I too lived a very busy & active life working for the NHS ironically but had to retire last February because I just couldn’t carry out the job I was doing.
I’m pleased to hear that you are in remission and enjoying life with your husband and family.
I started off feeling increasingly tired about 10 years before diagnosis. I then had thyroid problems, which cleared up. About five years before diagnosis I got viruses all the time and was photosensitive. Also anxiety, insomnia. Three years before diagnosis, all the above, plus thinning hair, flaky nails, pains in my knees and other joints. Weakness. Raised lymph nodes. Bloods tests normal except slightly raised inflammation markers. But then again, I wasn't tested for antibodies. Then I had a full-blown flare affecting joints. Lots of pain. Two months later, I was diagnosed by my GP who did full-spectrum tests, unusually.
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