Help please

[Edith04]

Hi

I have had many symptoms of Lupus for a long time. A colleague at work the other day out of the blue asked me if I thought I had Lupus. She has an autoimmune illness and having listen to me talk about how I feel unwell over the last few months suggested that I get checked out. My symptoms are extreme fatigue that flares up, diagnosed rosacea (but redness is concentrated across nose an cheeks, constantly getting checked for kidney stones as I have pain, blood and protein in urine but no stone detected and intermittent rashes on legs that come up as spots but then turn into disc shapes that slowly spread outwards. But the most debilitating symptom is memory loss. My memory is always poor but at times (usually when extremely fatigued) it's awful. I struggle to find words, can't remember the most basic things and feel like I'm fighting myself to get things done. This has left me feeling extremely low. My Husband and children are very aware of this and are helpful but find it very frustrating. At work I am making mistakes alot and my memory has now become a running joke among my work mates. I am very ashamed of the the issue. I feel people think I am lazy or stupid as I make so many mistakes and forget things.

My Mum has Chron's disease and Hemolytic Anaemia and Crohn's is prolific in the females on my Mum's side of the family.

I do not know if or how to speak to my GP about this. I have spent so long telling myself that I need to get on with it and convincing myself that I am lazy and useless. I have been to the GP about many of the symptoms but very rarely because I am convinced they think I am making this stuff up.

I would appreciate any advice anyone could offer me please.

[Spotty-ewe]

I’m so sorry to hear you are experiencing this Edith. Have you said to your doctor you are worried about your memory and that it could lead to a health or safety breach if you forget something really important ? I found after many many years of trying to get diagnosed that the minute I said I feared for the safety of my pupils with my mental condition (never mind the physical symptoms) they acted very quickly.

I’m sure at the very least they’ll be able to organise memory tests and as it is you yourself asking for your memory to be tested there shouldn’t be a problem. When I expressed my concern for my Mum losing her memory her GP told me they couldn’t do anything unless she requested help herself. Luckily Mum was concerned enough herself to agree to this and she was found to have vascular dementia caused by her diabetes.

So don’t delay and lay it on thick to the GP and hopefully they’ll take you seriously this time and test the other symptoms while they are at it.

Good luck. 🙏🏻 Let us know how you get on. Best wishes 🤗😘 Spotty

[MissusTee]

If it was me I would firstly ask for this panel of blood tests to see if they show anything. You can ask your GP:

ANA, ENA, TSH, ESR, CRP, Rheumatoid factor, LFT's, Full blood count. This will give you a start in the right direction.

[Paul_Howard Partner LUPUS UK]

Hi Edith04 ,

With the symptoms you have described and the prevalence of autoimmune diseases within your close family, I think it would be prudent to be investigated for lupus and/or other autoimmune conditions.

We have an article on our website with lots of information and advice about getting a diagnosis of lupus which you may find helpful to guide you through the process - lupusuk.org.uk/getting-diag...

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...