Photos

Hi Aggie

Sorry you are feeling low at the moment.

I think the photos are a fantastic idea. I too started taking photos as everytime my appointments came round things had calmed down. My Rheumy now has a collection of my photos in my file so when I see others I don't have to keep explaining but they can clearly see what happens!
I also think it helps to build your case up when going through this awful process of trying to get diagnosed with whatever it may be that's making us feel so crap.

Hope things work out for you and please keep your chin up.( easier said than done I know)

Best Wishes

Mrs M x

LolaLola;523580 said:

Dear Aggie,
I still have the photo I took when my face was really bad. It was flushed purple where the malar rash was and skin used to break down and ooze. I also had a hideous lupus rash on my legs and like you did have a very long time problem down below. All is so much better since I took mepacrine. I really would recommend it, it did wonders for my skin.
x Lola

PS You need to talk about this, we are all here to listen, we ALL need each other so don't feel shy.

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Thanks Lola, you and everyone on here have been so kind. Trouble is, as I still don't know what I have, I feel a bit of a fraud talking about lupus....if that makes sense to you. For all I know, it COULD just be psoriasis running alongside my FM. Although I have for many years had symptoms which could be attributed to lupus I'm not sure whether it is usual to have problems down below such as the lesions, internal pain and also heavy bleeding/prolonged periods. Also, some of my lesions have a layer of scale which can be peeled off leaving a red area underneath. My ears are prone to bleeding if I try to clean all the crud out and sometimes other lesions on my body can 'split or bleed'. I was just wondering whether this sounds more like psoriasis to anyone.

Whatever it is, I do know that I can't carry on like this anymore. I need to know what I'm dealing with. I no longer look like myself, feel like myself and more importantly am not happy. I've just come back from holiday and spent evenings waiting for blisters to dry on my face lesions before I could put on some slap to face the world.....and that was on top of trying to cover my hair loss and also deal with a ten day period during which I couldn't wear a tampon because it is just too damn painful for me now.

Today I feel really listless and my scalp is burning so much/feels so tender that I feel like tearing all my remaining hair out. I just feel so low at the moment that having to take the photos made it all a little worse but then it's a help to know that I've found this forum and all you lovely people are here to listen regardless.

Thanks heaps. x

halfpintfl;523699 said:

Hi Aggie, so sorry that today is not a good day for you.
My hubby is very supportive also, but then he does have his limits:-those days when all I do is cry. I bet you have them too. Taking pictures is an excelent idea, but also each time you get a new symptom; write it down. Keep a pad of paper beside your T.V. chair or something. As for
your hair itching, I say one thing; go to your closest Dermatologist. I couldn't manage without mine. He gives me RX bottles of shampoo to stop the itching and has fixed some of my other skin problems, but I have had few. Are you on any meds? and what kind of Dr. is treating you? I
have best wishes for you, and this board will soon become your family, it has for me. smile.:wink2:

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Hi there. I know those crying days too!...hubby often tells me to count my blessings because there are people dying from cancer and whilst this puts things in perspective I sometimes wish he could understand what it is like to have to cope with my health issues day in day out plus the added frustration of not know what is causing it. As you well know, it just wears you down.

I've been noting every little symptom for the last 10 years and most of the consultants I've seen (bar one) haven't even had the decency to take the time to sit and read them. All they've been interested in is the symptoms specific to their field. I'm taking the photos to my GP tomorrow so I hope they won't have the same reaction.

I've seen two Derms....to be honest, both were hopeless. The first spent a year telling me it was 'probably psoriasis' and prescribed countless steroid creams (some which I was told to put on my face and my GP was horrified when she found out). The second Derm I saw once back in June. He told me I might possibly have cutaneous lupus and took a scalp biopsy which came back 'inconclusive'. I was promptly dismissed from the clinic with no follow up consultation to discuss further investigations, just a letter telling me to visit my GP to get more bucket loads of Dervomate, Daktacort and Nizorelle....which I've already been using with little effect for three years. Deep joy.

Anyway, I'm hoping to be able to get my GP to refer me to a Dr who specialises in Lupus so I can determine once and for all whether or not I have it. Finding this board has been a God send and I honestly believe I would still be struggling with no way forward if it didn't exisit. Everyone on here has been brilliant and so willing to share their stories (which can't be easy at times).

Thanks again and best wishes to you too!