symptoms?

[Nonameme]

My first journey to this site was to this forum in my search for answers after symptoms were dismissed as being ‘all in your head’.

I was convinced I had Lupus but again was dismissed as being ‘too old’ by same GP who put everything down to type 2 Diabetes!

He has now vanished from the practice without reason and all is chaos now as in so many practices these days.

I will not go into my symptoms again I will just say I was alerted to this possible diagnosis at my cousin’s Funeral as she died at 42 and Lupus was mentioned. Her sister told me she thought I could have it too as my demeanour and symptoms were very like her sister.

I am now 77 and have been unwell and undiagnosed for many years but the reason for this post is a recurring symptom which my sister thinks is suspicious.

I have been noticing discoloured patches on my cheeks that come and go and yesterday I managed to take a selfie (first ever) and they were caught on camera and upon showing to my sister she said butterfly rash.

I immediately heard bells ringing so am now asking could this be a sign or does the face rash be permanent rather come and go. There is no actual rash but is very strange. Some thoughts would be appreciated.

[RosieA]

It's great that you managed to take a photo. I think when you can it would be worth seeing a different GP. My grandmother was told she was a hypochondriac. A label that stuck! Her sister had Lupus and it was clear that my grandmother was unwell, very dry eyes, aching joints, exhaustion etc. After years of struggling she died of Pulmonary Fibrosis (discovered at autopsy). Her daughter also died of this. I don't tell you this story to worry you but to say that you know your body and unlike the past we have stronger voices. Keep nagging the Drs, ask for a blood workout to see if there are any pointers. Perhaps if you can, ask to be referred to a private Rheumatologist for ultimate peace of mind, if they won't refer you to one on the NHS.

I had relatively late onset disease, 57 so it can happen and you need to say how long you have been struggling. Keep a list of your symptoms and try to work out when each one started. Was there a trigger - mine was the flu. Malar rashes vary and some can come and go. Mine comes up vividly after sun exposure or in a flare, like a beacon in the evening but invariably gone by the morning but this can repeat for a few days. Some I gather can stay for weeks.

All doors were closed to my Grandmother by one GP in the times when you didn't move around and neither did they. You were stuck. We are not. I do hope this helps a little. x

[posthinking01]

The butterfly rash happens with me when my immune system is under pressure - even the sun puts the body under pressure which not a lot of people understand - a person without Lupus although they can stand the sun as we can't their immune system is hyped by the sun exposure - hence why you feel great when you get back from holiday - its not only the rest and recreation whilst away !