Thank you for having me on your forum and for sharing information. I appreciate that it's possible nobody will have the time to read or reply to this, but it will help me to share it anyhow. I hope that's OK.
My name is Holly and I am 35. I am on somewhat of a journey in terms of seeking a diagnosis and I have wondered if I might have mild lupus, but I do not meet enough of the criteria and it has not really been suggested as an option. I have come to a bit of a dead end - this morning, six months after seeing the doctor about various symptoms, I was discharged (before getting as far as a rheumatologist) as they do not know what is wrong with me, if anything. I am feeling frustrated and starting to wonder if I am making it all up, but wonder if there is something more I could do to rule lupus out.
I am pretty mobile and regularly play netball, go to the gym, walk and enjoy gardening, but increasingly I struggle with both joint and muscle pain. I have had arthritis of my lower back for some years and that is an issue, but I regularly feel pain in other parts of my body. It is not debilitating or severe but essentially I am never comfortable, something always aches, despite my best attempts to lead a good and healthy lifestyle. More and more my hands start to ache and lose some strength, for example opening jars is not quite as easy as it used to be. I sleep very well but sometimes in the mornings I am so slow to get moving, I feel very sleepy and find it hard to get up and going. I also suffer from some 'brain fog' and find myself forgetting words or names. I often feel cold and sometimes lose circulation in my fingers or my hands go a bit numb.
In November 2022 the doctors did a lot of blood tests and my rheumatoid factor came back as positive, just over the normal range (but not by much), and I was referred to rheumatology. This involved a phone call, during which the lady said it sounds like I have an autoimmune condition, then today's appointment with a specialist physiotherapist. He said he doesn't think I have rheumatoid arthritis or fibromyalgia and he did not feel there are any tests they could do to help me further. I have had many blood tests, including more in March, with no signs of infection or anything like that. Other things I think may be relevant:
- I was diagnosed with mild asthma a few years ago
- I was diagnosed with iron-deficiency anaemia (low ferritin) late in 2021 and now take daily iron to keep it to an acceptable level (I am veggie and was donating blood, have stopped that now, but do eat a very good and varied diet)
- I mentioned to the doctor recently that my heart feels funny sometimes. An ECG picked up a 'sinus arrhythmia' and my results were sent to a cardiologist. I have been asked to see doctor again regarding this issue and have that appointment in 2 days
- I have had two positive HPV tests from smear tests which I believe is not uncommon but can be linked to autoimmune conditions
- I had COVID twice last year
- I sometimes feel short of breath, despite being relatively fit, for example when going up the stairs
- Sometimes experience heart palpitations but may find out more info about that soon
- I do seem to have flare-ups, for example at the start of the year I felt extremely tired and physically so achey for a week or so. This was quite a stressful time for me which may have had an impact.
I am still able to live my life but not knowing if there is something wrong with me is driving me mad. I appreciate that I am still very able to do the things that I enjoy, but even mild pain and stiffness wears you down. I do not have any notable issues with my skin, no fever, no light sensitivity or headaches or mouth/nose sores. I do have a regular split in the end of my nose which I assume is unrelated.
So there we have it, that's why I am here! I would like to learn more about lupus so that I can rule it out and try to move on. Currently I am thinking of paying for a private urine test as that has not been tested and perhaps may rule other things out.
Thank you for your time.
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Hollyinthewild
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I am sorry you are going through this. Your symptoms do sounds very similar to Lupus so well done for doing your own research.
Are you in the UK? Have you considered going private if it’s an option for you? If so if you put what part of the UK someone on here will be able to recommend a specialist.
Thanks so much for your reply, I appreciate it. ☺️ I’m in South Cambs… going private is not all that feasible for me, although actually my brother and my parents both offered to pay for that for me (which I’m not entirely comfortable with, but was kind of them). I guess I might feel differently about accepting their offer in time if I’m not able to find another way and things continue.
I have this appointment tomorrow about my heart but will ask my GP about lupus and see if there is anything she can do to help me on that front. I’m so grateful there are so many resources online though… at least it enables us to research things ourself more easily.
If it's lupus generally you would be exhausted most of the time as our bodies are constantly fighting us. I have lupus and sjgogrens and exercise like the gym would be near on impossible most of the time. A lot of us struggle to work because of exhaustion. Sun sensitivity, rashes, mouth ulcers when your low, brain fog are some more signs. Lupus uk has a list of top symptoms which you would need to have to be diagnosed. I have fibromyalgia aswell and you sound like this may be what you could have. Pain which comes out of nowhere sometimes then goes after hours or days. No blood test for this though. Keep a daily diary of symptoms then you can talk through them with a rheumatologist. This will show days, times, length of symptom and help them no end and we often forget day to day what symptom we've had.
Thank you for your reply. Sometimes I think it sounds like lupus but as you say, I don't have that level of fatigue, at least not at this time. The specialist physio I saw yesterday brought up the NHS page about fibromyalgia and asked me to read it and say if it sounded like me (I'd already read it at home of course!) but some of those symptoms don't seem to match either, but I guess there are lots of people who don't always 'fit'. Thanks for your input - diary is a good idea.
Hi Holly. I was diagnosed with asthma years before being diagnosed with sle. After my recent asthma review, I dont have asthma at the moment and my breathing teasts were above average. I don't think I ever had the asthma they 1st diagnosed me with. I think it was just the start of my lupus symptoms, this could be the same with you. You do sounds like you have lupus.
As a veggie to you have lots of milk, eggs and cheese? It might be worth cutting theses out as long as you can, to see if there's an improvement with your joints.
Keep a daily diary of your symptoms, you might find patterns, like you are in more pain before your period etc. Ask your gp to be seen by a different hospital, which is your right to do so.
That's really interesting, thanks Sarah. I've never actually seen a doctor or nurse about asthma but was diagnosed over the phone in the last few years - in my case it just seems to make me cough but a preventer inhaler (kelhale) does seem to help. If I use a peak flow meter I always seem to be average or above though!
I do eat quite a bit of cheese and eggs, thanks for the tip about that and keeping a diary too.
Hi Hollyinthewild, sounds like you’ve been having a wild time! Sorry to hear of your various issues, and while some of your symptoms do sound very lupusy, it’s worth noting that lupus symptoms also overlap with a helluva lot of other conditions. So it’s very hard to get a diagnosis. Lupus is a diagnosis of exclusion, meaning doctors have to rule out a whole bunch of other stuff first, before they will even consider lupus. Sorry if I’m preaching to the choir here! To give you an idea, it took me 8 years to get diagnosed with lupus. What helped me in the end was seeking a second opinion.
Some symptoms take a long time to appear, but we can feel very ill in the meantime, sometimes for years. It’s a very frustrating place to be, this medical limbo, too sick to be well but not sick enough for a diagnosis. I believe I first began having symptoms when I was 25, but it was after I had pericarditis at 31 that medical investigations really began in earnest. All this to say, hang in there, you’re not alone, and please do let us know how your cardiologist appt goes. They might be able to give you some clues, or at the very least, rule some stuff out.
Thanks so much and I'm so sorry that it took so long for you to get diagnosed. Even if I turn out not to have lupus or another similar condition, I can see from my experiences how frustrating it must be for people to try and get these answers. The state of the NHS also doesn't help unfortunately, just delaying things further.
I feel silly for making a fuss when I am still able to work, play sports etc. but constant low level aches and the worry of not knowing is tiring. Your kind words are really helpful, thank you.
Hi HollyI had joint symptoms 2019, then after covid March 2020 kidney issues, eye issues, photosentivity changes in ECG, feeling rubbish, like would pass out after eating - lots of silly things, different things each day, bit like roulette, and like things were on simmer, and sometimes body coped other days not
After rubbish local referral in 2021 my GP asked me which of two other hospitals I would prefer in neighbouring counties.
But I had already sent an email to London Lupus Centre, asking if a Zoom appointment was possible. My family helped..
Hi Holly, no need to feel silly and you’re not making a ‘fuss’, we are all on our own journeys and all suffering. I too am able to work (part-time only) and sometimes experience survivor guilt when compared to some of my fellow lupies. But it doesn’t help to compare—we are all affected and all struggling, some days worse than others. As you say, the chronic pain and worry can really take a toll. I do hope you get some answers, and that you do not have to wait too long.
Hi Holly, Welcome to this forum. Did you have the blood test called Anti-Nuclear Antibody (ANA) test? Did your GP test for anti-phospholipids?
Some of us had to go private for diagnosis as pathways used by NHS not always patient focused enough.
They have other concerns ..and sounds like you saw physio instead of rheumy ,
Recently I thought I was having a neurology referral with a consultant, which ended up a telephone appointment slot of 10 minutes with a local GP asking only about headaches..
so did not cover numbness symptoms and autonomic dysfunction things..
Just another example of a reroute away from a specialist..
Thank you for your reply. When I saw the doctor about this originally (November 2022), he tested the following things: full blood count, liver function, rheumatoid factor, renal profile, Erythrocite sedimentation rate, eGFR using creatinine, HLA B27 and CCP ABS.
Everything was normal except for the rheumatoid factor which came back just over the normal range (20.3 iu/mL). The CCP ABS test never went through as they refused to do that test. Due to the positive rheumatoid test they referred me to rheumatology and I had a phone consultation in February, during which the clinician said it sounds like I have an autoimmune disease and should be seen in the clinic. Eventually I was able to call and book but they booked me with the physiotherapist and said I had to see him first, before being sent on to a rheumatologist if needed. He then discharged me on Monday so I never got as far as a rheumatologist.
Another GP ordered some further tests for me in March this year and those were normal too (she wanted to exclude some things): tissue transglutaminase, B12/folate level, bone profile, full blood count, serritin level, Haemogoblin A1c level, liver function, renal profile, thyroid function and eGFR using creatinine again. All normal.
She did also order me an ECG as I mentioned that my heart feels strange sometimes and my resting heart rate often dips quite low and my chest aches a bit. That showed a sinus arrhythmia and she sent that result to a cardiologist who responded... I don't know exactly what they said yet, but see that same GP tomorrow morning to find out and to discuss having a 24hr ECG.
Apologies, that was all very long-winded! I feel awful that I've had all these tests (no doubt costing the NHS a bomb) as I really don't want to waste anyone's time. I am just not quite ready to let this go and accept no diagnosis.
My story is I phoned the local NHS Immunology Department that tests blood and releases the blood results. I spoke to clinical lead (was kindly put through to them as virtually in tears) and she said I should ask my GP for the Anti-Nuclear Antibody Test (ANA), and that if they refused then might need to change GP. She said I had right to ask for this test.
My GP though agreed and also requested ENA screen and anti-double stranded DNA test (as this is not part of the ENA screen).
If the GP does not do this, then rheumatology you think would pick up and have tested these..
Doctor this morning has ordered me a 24 hour ECG - cardiologists not overly worried by my original one (which shows sinus arrhythmia) but said if I have any associated symptoms, such as chest pain, it would be best to have a 24 hour one. I originally noticed that my heart rate drops low because of some mild chest pain.
I asked her about everything else and she said she will wait to receive the letter from rheumatology discharging me, to see what they have said, and then she will look into it for me. She said that often these things do go unanswered and that many of her patients in similar situations have sought private care now, in hopes of a diagnosis.
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