Joined
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6 Posts
Hi all
I'm Lynette, 31 year old married mum of 1 daughter (almost 3 years old) from West Lothian in Scotland.
I posted a couple of times towards the end of last year while I was awaiting diagnosis. I have since been back to the rheumy in January and I think he's confirmed SLE with possible Raynauds. I say 'think' as I've not had anything in writing although my GP says that that must be what he thinks it is otherwise he wouldn't be putting me on the meds he has. Until then I had just a positive ANA 1:160 speckled and a full range of symptoms: concentration problems, migraine, blackout collapses, poor circulation in hands and feet, mild to moderate hairloss, petechia rash on upper arms, mouth ulcers and severe joint and muscular pains all over the body with severe fatigue. He was 'reluctant' to confirm the diagnosis as such as there was no evidence of inflammation but since then I've had blood work done again for monitoring and my ESR is up at 29 despite now being on 400mg of Plaquenil daily.
I see a physiotherapist fortnightly and have been given two Fischer sticks to assist my mobility. With adjustments from my workplace, who have been JUST FANTASTIC, I have managed to return, although I am in the process of applying for DLA and Blue Badge (anyone in the UK who has successfully done this, any help very gratefully appreciated as its a minefield and my local advice shop is pretty clueless!). I also take the following meds: amitryptilene, tramadol, arthrotec, bisprolol and (industrial strength) folic acid.
I'm happy to share my experience with others and help in any way I can. The last few months have been a baptism of fire and I've finally come to terms with the situation and am taking positive steps to deal with it as positively as I can by throwing myself into raising awareness of the condition through my job. Anyone in Scotland who wants to know more, feel free to PM me and likewise if I can help anyone or someone just wants someone to moan to about reaching diagnosis or anything else, please feel free to do so.
Hugs to all,
Lynette xxx
I'm Lynette, 31 year old married mum of 1 daughter (almost 3 years old) from West Lothian in Scotland.
I posted a couple of times towards the end of last year while I was awaiting diagnosis. I have since been back to the rheumy in January and I think he's confirmed SLE with possible Raynauds. I say 'think' as I've not had anything in writing although my GP says that that must be what he thinks it is otherwise he wouldn't be putting me on the meds he has. Until then I had just a positive ANA 1:160 speckled and a full range of symptoms: concentration problems, migraine, blackout collapses, poor circulation in hands and feet, mild to moderate hairloss, petechia rash on upper arms, mouth ulcers and severe joint and muscular pains all over the body with severe fatigue. He was 'reluctant' to confirm the diagnosis as such as there was no evidence of inflammation but since then I've had blood work done again for monitoring and my ESR is up at 29 despite now being on 400mg of Plaquenil daily.
I see a physiotherapist fortnightly and have been given two Fischer sticks to assist my mobility. With adjustments from my workplace, who have been JUST FANTASTIC, I have managed to return, although I am in the process of applying for DLA and Blue Badge (anyone in the UK who has successfully done this, any help very gratefully appreciated as its a minefield and my local advice shop is pretty clueless!). I also take the following meds: amitryptilene, tramadol, arthrotec, bisprolol and (industrial strength) folic acid.
I'm happy to share my experience with others and help in any way I can. The last few months have been a baptism of fire and I've finally come to terms with the situation and am taking positive steps to deal with it as positively as I can by throwing myself into raising awareness of the condition through my job. Anyone in Scotland who wants to know more, feel free to PM me and likewise if I can help anyone or someone just wants someone to moan to about reaching diagnosis or anything else, please feel free to do so.
Hugs to all,
Lynette xxx