Defeated

[Quuen]

I have been diagnosed with DLE but have symptoms of SLE such as multiple joint pain and swelling and fatigue. I fractured my foot 18moths ago and it hasnt healed properly. my foot still swells up, i cant wear shoes. My bloods come back clear and told I don't have SLE or symptoms of any connective tissue diseases. Rheumatologist told me my symptoms could be related to DLE when the dermatologist was adamant that DLE wouldn't cause those symptoms . Crying my eyes out because all I want is an explanation! This pain is not in my head🥺

[JLAR01]

good morning queen 👸

Wow I really relate to your post. I’m sorry to hear about your foot. I understand how hard and frustrating it is when you get told something like this. As awful and horrendous this is going to sound you just need to keep pushing! I have a similar issue. I’ve been diagnosed with tumid lupus but they think I may have SLE also due to my symptoms but referrals and meds ect take forever and I still haven’t been sorted but I keep pushing. Best thing is to push back onto your GP explain symptoms and ask them to investigate, possibly write a letter to your rheumatologist explaining your further symptoms.

I really do get how upsetting this is, but I must say this forum has helped me massively as hopefully will help you. Note down your symptoms and pass them onto your DR so they have a better understanding.

Appointments and situations like that can be so deflating, make sure you’re speaking to your loved ones about how your feeling; you’re not alone 💜

I hope you feel better soon, be easy on yourself and do lots of self care 🤍

J x

[Quuen in reply to JLAR01]

Thanks x

[KnitSewPurl]

Did they do a bone density scan or any further xrays since your complaint to reassure you ??Have they check your bloods to see if your calcium levels are OK?

All these have to be questioned?

[Quuen in reply to KnitSewPurl]

I had 1 MRI scan as a follow-up earlier this year to confirm fracture was healed and no other concerns were raised. The orthopaedics referred me to rheumatology because they couldn't work out why my foot was still swelling. Any blood tests I've had come back as no concern. Maybe I need to obtain copies myself to work out what is going on. Thanks for your advice

[KnitSewPurl in reply to Quuen]

I had a fall in March that never healed up well on my foot which later I found I had 6 months later Osteopenea because I had a bone density scan in Feb. Yeh, took me ages to get this results because GP refused to accept responsibility that they sent me for it. Even had the letter saying that they sent me what a joke.Back to my foot, till today it is still not right I still get numbness on my toes and my ankle does not rotate.

I really cannot be bothered to see the GP really as it is so difficult to e BBC even get an appointment.

My husband has a heart issue who really needs to see them cannot get a single appointment.

[happytulip]

If you've had a fracture that hasn't healed properly and you still have pain and swelling, I would ask for a referral to orthopedics. It could be entirely unrelated to sle and non union of a fracture is orthopedic territory.

[Quuen]

That's who I was initially under and was then referred to rheumatology because they couldn't work out what was going on