Lupus, UCTD, or something else?

[owmn]

Hi,

I’m wondering if anyone can help me pin down my symptoms and assist with where to go next, really!

I began having symptoms shortly after having my second baby a year or so ago, and still have no answers as to what’s causing them, but haven’t been able to go back to work as yet due to this. Even just the not knowing is driving me crazy!

I went to my GP with joint pain at 8 weeks pp that had steadily worsened to the point where I was struggling to even hold baby. I was referred to rheumatology as GP suspected lupus after positive ANA bloods, and have had one appointment since where she diagnosed me with fibromyalgia and as hypermobile, though caveated that this diagnosis may change, and there is likely an autoimmune condition also present (she thought possibly RA).

I have also had a couple of private appointments but was given very little information from him, and no hint of a diagnosis other than to say UCTD is what it could end up being if they can’t pinpoint it as any specific condition. My ANA bloods at that time came back negative.

I have since had another positive blood test and a hand and wrist ultrasound, though this apparently showed no inflammation (yet to actually hear formal results from consultant).

Basically, I’m driving myself crazy wondering what’s going on, but also gaslighting myself in between flare ups into thinking I’m just being dramatic and work shy.

My symptoms can come and go, though not always in huge flare up fashion, and a low point can last for days or weeks with no apparent rhyme or reason.

I suffer with joint pain (wrists and hands, knees, elbows, sometimes hips and toes even) both dull aches and then periods of shooting pains, fatigue, slurred speech and brain fog, occasional chest pain, shortness of breath, dizziness.

I hope that all makes sense, I’d be so grateful for any advice.

Sounds very frustrating and can understand why you want answers. Not unusual for autoimmune connective tissue diseases to take a long time to be specifically diagnosed which feels like being in a limbo. My experience, systemic sclerosis, is that even after a diagnosis and unless your condition is serious enough to need immunosuppressants the emphasis is on dealing with the symptoms whether medication or life changes. I have a relative at a similar stage in life and similar diagnosis to you too so can offer a bit of collective advice,
• learn as much as you can about your condition from something like Versus Arthritis
• educate those around you about your diagnosis
• don’t expect your GP to know about it
• accept you will need to advocate for yourself
• keep a symptom diary
• if you can afford it get help, cleaner, childcare etc to reduce the demands on your energy
• accept help
• pace yourself (as far as you can with small ones)
• yoga and whatever suits you in meditation or relaxation
• eat well
Does the rheumatology department have specialist nurses? Some have a helpline to get advice between appointments.
Look after yourself.