Advice please!

Hello there,

I hope no one minds me posting in this community but I wanted some advice from people diagnosed with Lupus.

I am a 26 year old woman, based in Scotland. Back at the start of September I came down with Shingles, it was noticed fast and I took antiviral and it went away. However, I was left with dreadful fatigue, headaches and joint pain. Sometimes I struggle to walk because of pain in my knees - I also get a lot of back pain. Before the shingles I often would get sick, and headaches were common but the extent of the headaches and fatigue got much worse! And sometimes I get feverish with the headaches now.

The doctor diagnosed this as Post Viral Fatigue Syndrome, but took some blood tests. The blood tests showed a high ESR (antibody) level, so she did another one three months later and I still have raised ESR levels. No sign of infection.

I was looking up what this could mean and saw that my symptoms do seem to match the Lupus symptoms, and I saw that it is often misdiagnosed by GPs (my GP has generally been very good though). Some symptoms I don't have - such as rashes. Anyway that lead me here to ask if anyone here had a similar experience and turned out to have Lupus, and whether it seems like something I should raise with my GP.

Thank you for your time and thank you in advance for any advice I receive.

Adelaide

[Krazykat26]

Hi Adelaida 🤗

Welcome to the group 💐

U have posed a very interesting question!!

I am currently diagnosed with SCLE (a form of cutaneous lupus)..but I am convinced that my troubles regarding the start of lupus was when I had shingles in 2009. Before that I had been a relatively healthy individual with no health problems. At that time however I didn't seek medical help n just managed it myself.

I can honestly say that since that shingles episode my health has deteriorated steadily n I was diagnosed with lupus in 2017. On joining lupus UK I discovered that a virus such as Epstein Barr (glandular fever) can cause lupus..n other viruses?? This led me to look into the idea that maybe shingles was originally what set off lupus in my case..n as I've looked into it further I am convinced that it had a part to play!! I foolishly didn't get antiviral treatment coz I didn't know that I could have..I do now though!! I had shingles again last year n I got those antivirals pronto!! 😹

You're right in saying that lupus is often misdiagnosed..I was admitted to hospital with all over body rash in 2013 which was diagnosed as allergy to flucloxacillin..this was at the start of my lupus journey. It does take the majority of people quite some time before a diagnosis is reached n often other conditions r thought be the cause of symptoms so detective work is needed. Your GP sounds very supportive so would be the one to talk things over with..my GP is fabulous but she admits that she knows nothing about lupus..so shes learning with me!!

Lupus UK website..check it out..there's lots of info regarding all things lupus!!

There r specific blood tests for lupus called ANA..if that comes back positive the sample is sent for further testing dsDNA..if this is positive to that gives a diagnosis of lupus.. HOWEVER there r many autoimmune diseases n we're all different!!

I would suggest discuss worsening symptoms with your GP n he/she may refer u to a specialist..usually rheumatology. I find it really helps to keep a symptom diary n if u do develop any skin rashes take photos!!

Kat 😽😽 xx

[Treetop33]

I would love some answers to this. I started to get autoimmune problems about a year after having what I believe was whooping cough, starting with a thyroid disorder which mysteriously disappeared. I now have Lupus and APS. Of course there may be many provokers besides, like stress. But I do wish it had been caught earlier before it got serious.

[milkwoman]

It’s no secret that lupus can be “triggered” by a severe illness. I can trace mine back to a very bad bout of bronchitis followed years later by a second round of severe chest infection.

I don’t get the lupus rash and it took over 2 1/2 years for me to be diagnosed. I had fatigue, joint pain, muscle weakness, cold intolerance, heat intolerance, headaches, cognitive issues, etc.

I would start with your GP and ask for an ANA blood test. This is a high level autoantibodies test. When mine was tested, it came back positive so I was then able to push my GP to refer me to a rheumatologist for full workup.

Mind you, I “looked” healthy so the rheumy was very skeptical and even held my hand telling me at that first appt, “don’t worry, you don’t have lupus”. Well, 10 days later when the tests returned, he had to eat his words. I not only had lupus but I also had Sjogrens.

This was 5 1/2 years ago and I was started on hydroxychloroquine.

You KNOW something is not right. You may have to fight to be heard. Not everyone gets the rash. Heck, not everyone tests positive for autoantibodies. Something is clearly wrong.

As an aside - I’m also hypothyroid (diagnosed prior to lupus) and was seronegative for that as well but displayed classic hypo symptoms (missing outer half of eyebrows). Have you had any thyroid tests?

[Wee1kirby]

Hi Hun, I am also in Scotland. I first remember being very ill after the birth of my first son over ten years ago. I was young when I had him, 21. I was referred to hospital because I presented as clearly not well to the GP, who knew something wasn’t right. Lots of testing was done but they just couldn’t tell. I became better but was intermittently very unwell at stages, usually after childbirth/breastfeeding. I had my twins three years ago and then became very ill a year and a half ago. Main issues were GI related and initially it looked like Crohns, I lost a stone in a very short amount of time.

Didn’t get much help on the NHS sadly who seemed to want to blame the physical symptoms on stress/anxiety despite issues with neutrophils and white blood cell count presenting as low. Eventually I went to a private GP and was referred initially to gastro and then to rheumatology. I continued to feel very unwell, ANA came back as positive (weakly but enough to justify further investigation), and after experimentally taking Hydroxychloroquine I was so much better that I was officially diagnosed with lupus in summer.

My main symptoms are so far mild and no organ involvement, but they don’t feel mild. I am very tired all the time, I have Raynauds and my fingers change colour in the cold and I am freezing all the time. I still have many issues with my stomach although weight loss has stabilised (though I have been unable to gain any weight back). I get ulcers in my mouth and my hair line/scalp if I am stressed and the malar rash presents on my face, though more like two bright pink streaks up my cheeks than a butterfly (my face feels like it’s burning when it appears). I have terrible joint pain and struggle in winter particularly with my hands. All that aside, I have been able to stay on at my very full on, full time job, so I am very lucky.

I was very I’ll at age 17 with glandular fever and this may have been a trigger for lupus, or it may have been childbirth. I also have a very dense family history of autoimmune disorders (though not lupus), including my father and my cousin, as well as grandparents and aunts/uncles. It is definitely worth getting tested for everything you can, even just to rule it out. This time last year I was in utter despair at how ill I felt and really didn’t think I would ever feel better. I am still not ‘well’ but I am so much better on hydroxy and it really has made a difference.

[Hidden]

Thanks for all (Wee1kirby Treetop33 Krazykat26 and milkwoman ) the advice everyone! You are all so kind. I think I will ask my GP for the ANA test and just go from there.

I have always had raynauds and been quite temperature sensitive and I so I hadn't really thought about that as symptoms.

Just to answer milkwoman - I have had thyroid tests as I am overweight and struggle to lose weight... but they always come back as normal.

I guess if it it Lupus it's fairly mild - though I haven't been able to work properly for months- due to physical and mental fatigue.

[Lily77]

Hi Adelaide, it is now widely recognised that only a small percentage of people who have lupus have the classic "malar" facial rash, so called because of the Latin for cheek which is 'mal'. Although Hippocrates described a condition with a severe red facial rash as early as 460 BC, Rogerius described the facial lesions as indented and red in more detail in about 1160 AD. Rogerius thought it made people look like they had been bitten by a wolf....hence the name for the condition 'lupus' from the Latin for wolf was born. I had the classic red, indented facial rash at the onset of my mega flare, down the nose and across both cheeks like a butterfly, but it faded after about six weeks or so. Some have it more permanently and hide it with makeup daily. The lupus rash situation is further complicated by the fact that sensitivity to sunlight can bring up lesions which can look like pink or red leopard spots on exposed areas. Again these can fluctuate. In addition, as the lupus can impact all major organ, and the skin is of course the largest organ, reactions to allergens can appear and disappear. Most with lupus have very "sensitive"skin and need to avoid perfumed products etc. In conclusion, the malar rash is only one of the eleven identifying symptoms of lupus, the rest are all systemic or blood related. Hopefully, this helps you put rashes in some context. Wishing you the very best for a swift diagnosis and help, with my very best, Lily