Has anyone had a similar journey?

[Tinylittlemac]

Hello everyone,

My name is Mac and I’ve been struggling with various health complaints for a couple of years. In December 2021 they got particularly bad, and I’ve basically had a consistent low to middle grade fever for 7 months straight. My muscles and joints are all quite sore and after a day of work I can barely make it home from the sheer exhaustion.

I have raynauds and I get awful sores in my mouth, constant nausea, weight loss, muscle weakness too. My GP ran bloods and other tests for months - and all that came up was a positive ANA, and low C4 complement test, and low Iron levels. My other bloods seem fairly normal, but sometimes I feel like I’m dying. My GP is fairly convinced I have Lupus. I already have Celiacs but I keep a very firm handle on my diet.

It’s taken me FOREVER to get an appointment with a rheumatologist after referral as I was triaged due to being able to walk around and work just about, but I’ve been living a half life.

Has anyone else had a similar experience? I don’t have a rash and I don’t get rashes, but that seems to be the only thing that isn’t lupus-like. I’m worried that the rheumatologists are going to turn me away or tell me I’m not sick enough becuase I don’t LOOK sick enough. It’s ruining my life. I can’t get by much longer like this. Any advice or reassurance would be greatly appreciated! Thank you x

[Hamptons]

HiYour journey is one that is familiar to all

If us. It takes a long time to get a diagnosis and often visits to many practitioners. There are many lupus criteria so ensure that you present the symptoms you have. Keep symptom

Diaries, photograph swelling , any redness.

We are here to advise and support you.

[Tinylittlemac in reply to Hamptons]

Thank you! Sometimes I feel like I’m going totally crazy. I really do need to start taking more photos. Thanks again.

[Hamptons in reply to Tinylittlemac]

Lupus does make you loopy! Haha. Just have faith that you know your body and keepPushing. Go to go every time let them see

[Hidden in reply to Hamptons]

There are many other AI diseases with over lapping symptoms to Lupus which is why I value this site.Stills Disease =

Rash

Sore throat

Fever

Pain and swelling in joints

Immobility

Dry eyes

Ear sores

Nail issues for example.

Other AI diseases seem to appear in clusters once you have one diagnosed, I also have Interstitial Cystitis and Lichen Sclerosis for example.

I’m sure you’ll get the correct diagnosis soon and relevant treatment plan. I wish you well.

[EG74]

Hi Tinylittlemac, I took notes of all the allergies I had since a was a teenager and any symptom that I had, I don’t have the rash in my face and I don’t have all the symptoms related to lupus but my bloods showed twice ANA positive, sometimes anemia, last time leukopenia and lymphocytopenia and finally I got the diagnose, so take a note of all the symptoms you had since younger and tell your rheumatologist when you get an appointment. Good luck

[Tinylittlemac in reply to EG74]

Thank you! I’m making an extensive list for them. I’m praying they take me seriously. All the best!

[KayHimm]

Mac -

Your comment about not seeing a rheumatologist even though you are half dead is so sad. I think the triage due to Covid, doctor shortage and the like are at a war time level.

Though we cannot diagnose, we can assure you that your experience is not uncommon. The one thing that may not be the norm here is that your GP is quite certain you have lupus. In other words, your clinical picture and labs are sufficient to make him think he has to tell you his thoughts.

Depending on other labs the rheumatologist may diagnose more specific such as probable lupus or undifferentiated connective tissue disease.

The fact that you don’t have a rash does not mean you don’t have a connective tissue disease. I will put money on it the rheumatologist won’t “turn you away.” You have a lot already - the fever is more common in lupus than the other connective tissue diseases. The fact that I do not have low complement is one thing that makes me “not lupus.” I have undifferentiated connective tissue disease. So your low C 3 must be quite significant. Your mouth sores are your skin being affected - like rashes.

With your level of fatigue and joint pain and fever you might want to ask your GP if they would put you on low dose steroids until you see the rheumatologist. It is horrific to think you cannot be treated due to lack of referral.

Take care of yourself and come here for support any time.

Xx K

[Tinylittlemac in reply to KayHimm]

Thank you so much for your reply K, I really appreciate it. I’m talking to my GP in a few days and I’m going to ask about low dose of treatment. The only good thing about all of this is that it seems like he’s on my side, the system is just so backlogged that he’s powerless. All the best xxx

[MusicalFurbaby]

Hi Tinylittlemac, I’m so sorry you have been feeling so bad! Many on this forum will resonate with the sensation of feeling ‘half-dead’. I have been off work for the past 3 months because I can’t cope with walking or talking. So I get that feeling of ‘What the hell is wrong with me?’ And anytime I get the flu, it exacerbates all the other problems, and I feel like I’m on my deathbed. Rest assured, you are in good company.

In terms of rashes, you definitely don’t have to have rashes to have lupus. Rashes are common, but plenty of people don’t get them. I was originally diagnosed because of positive bloods, mouth and nose ulcers, and pericarditis. (Diagnosis took 8 years.) It was only later that I developed joint pain and rashes. Having a GP on your side is a huge plus—many people struggle for so long to get diagnosed because they can’t get a doctor to believe them.

I am one of those lupies who, like you, doesn’t look sick. I look young, slim and perfectly healthy. All my issues are invisible (apart from split nails). It’s frustrating. Please keep pursuing the tests and doctors—the more accurate your diagnosis, the better they can (hopefully) treat you! Good luck, and please keep us posted. 🌻🌈

[Tinylittlemac in reply to MusicalFurbaby]

Hello, thank you so much for this! Is macabrely reassuring to know that other people have had similar experiences. I’m so sorry your diagnosis took 8 years! I am lucky to have my GP, he’s a curious guy and I don’t think he likes unsolved problems. I never thought I’d feel frustrated with looking well, but it definitely makes people believe you less. All the very best x

[MusicalFurbaby in reply to Tinylittlemac]

Credibility is a huge deal as a patient, especially when you’re a half-dead patient! It’s crucial that our health professionals believe us. That’s why I do a happy dance whenever I get a positive test result, coz it gives me—and them—proof that I’m not imagining things! Good luck 👍