Newly diagnosed with Auto immune rheumatic disease

[Lin007]

Hi All, Diagnosed 5 months ago, I have positive ANCA test and my symptoms mirror those of lupus. Signed off work for 4 months, am practically bed and house bound, gone from being an active working person to not being able to do anything I could. On my third trial of medication from my Consultant Professor D'Cruz @ Guys in London (different brand of Hydroxy now)! Just feel worse and quite isolated . Is this as good as it gets?! Also wondering if there are any support groups in the Essex area please.

[LupusKaren]

Hi Lin, big hello from a fellow Essex gal!

I am very sorry for your diagnosis, and that you are currently so very unwell.

At the moment, it sounds as if you are very early on in treatment protocols, is that right? I will say at this juncture, you do have a very respected Consultant taking care of you.

Is this as good as it gets you ask, I hope not, as time goes on, you may find a balance that becomes your new normal, and it takes time to adjust and process your diagnosis, but remember your Consultant will aiming to improve your clinical symptoms, which hopefully go on to give you a better quality of life.

Your not alone, chronic illness is very isolating, especially when people who are not sick, fail to grasp the situation, made worse, when the likes of SLE is an invisible disease.

Your not alone, there are some truly wonderful people here on Lupus UK, all of whom, myself included who have been where you are.

I am glad that you have been signed off work, I would use this time to rest, I know your bed bound currently, but aim to start a pace exercise, do one thing in the day, even if it is make a cuppa, it is one thing you have achieved yourself.

Do you have support at home? I

Good luck in the coming weeks, if you feel you are struggling, post here for support.

[Lin007 in reply to LupusKaren]

Hi Karen

Thanks for your message of encouragement, it means a lot. Yes very early treatment I guess, the Bristol brand of hydroxy did not agree with me so I now take Zentiva brand!? I have certainly found out who my real friends are recently and they are not who I thought they were! I am very lucky, my immediate family has been very supportive.

[LupusKaren in reply to Lin007]

Your welcome Lin, I hope in a small way it helped you realise you are not so alone, we may not 'family' in the related stage, but we are a 'Lupus family'. I am so glad your immediate family are so supportive, this will be key for you going forward, if I could offer another piece of advice, never downplay your symptoms, if you feel like hell, tell them, I was guilty of expecting family members to be able to read my mind, it just set me up for an epic fail in the coping mechanism.

Family members can feel helpless, and if help is offered, even if to just flick a duster and hoover around, or prepare some meals (top tip batch cooking and freezer can be your new best friend!) let them do it, they will feel better as they feel they are helping you.

As for friends, sigh, oh boy if I had a pound for every time I have heard that, I could have permanent private Rheumatologist on call, don't take it personally Lin, it is human failing empathy, I have witnessed a friend of decades, cross over the road to avoid me in the past, astonishing, I say, were they really ever a friend?

Rest up, and well done for having the courage to post here, I know how hard that can be.

[Lin007 in reply to LupusKaren]

Thank you again for your kind words Karen, I can see being a member will be worth its weight in gold to me. I hope you are well.

Lin

[LupusKaren in reply to Lin007]

Am currently off colour, but coping Lin, lots of tests recently, but they have at least yield some answers, always a psychological bonus, this disease can be sneaky,

[Lin007 in reply to LupusKaren]

I wish you well fellow Essex gal, we could do with the sunshine back here to brighten us up.

[LupusKaren in reply to Lin007]

Arrgghhhhhhhh no Lin, no sunshine for me, super photosensitive me, this time of year I detest, you will find me in my bat cave

[Lin007 in reply to LupusKaren]

Hi Karen, I am really sorry to hear of your photosensitivity. I will request warmish but cloudy weather for your part of Essex in future.

x

[Lin007]

Thanks Lou for your reply. Are you under The Prof as well? He is something else isn't he.xx

[Chanpreet_Walia LUPUS UK]

Hi Lin007,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which contains factsheets, guides and a list of helplines. To download or request this pack, click here: lupusuk.org.uk/request-info...

I am glad that you have found this sociable forum – speaking to other people can help reduce the feeling of isolation and relieve you of any worries that you may have. If you would like someone to chat with over the telephone I can provide you with LUPUS UK contacts. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail] – I can put you in touch with three contacts living in Essex.

We have an Essex Lupus Group who hold regular meetings and coffee mornings which you can attend: facebook.com/LupusUkEssex

Please keep us updated, wishing you all the best.

[Lin007 in reply to Chanpreet_Walia]

Thank you so much Chanpreet this is all amazing information

[pixie24]

Hi, I was diagnosed about 14yrs ago now and it's been a roller-coaster ever since. Because you look well people assume you are OK, if only that was true. I am seen at my local hospital but wondered if you were finding guys helpful. I am not sure about support groups but their must be somewhere. I noticed you live quite close to my area so maybe once we have chatted abit more could meet for coffee.

[Lin007 in reply to pixie24]

Hi Pixie,

Good to hear from you. We are very near aren't we, amazing. You are so right about the looking well scenario! yet another bane of our lives

In answer to your question about Guys, I have found them all amazing but particularly Professor D' Cruz and Kay the Nurse Specialist. I found myself under them by chance really. Was having no luck with any direction for diagnosis (was still under an ENT clinic locally for my symptoms) hilarious eh! I saw an ENT Consultant privately in London, she took one look at me after discussing my symptoms and straight away she said this is not an ENT issue and asked me to see a colleague of her at Guys Rheumatology back under the NHS, and so here we are. I do feel if I was still being seen locally that I wouldn't be as far advanced with my diagnosis now but that's not to say it doesn't work for other sufferers. I have been going to Guys for a year and the clinic is definitely busier now and struggling under the pressures of the NHS. Wait times are longer now but if I have a problem I can book a phone consultation and they will book you in for an appointment if they feel necessary. I and my family have found this service invaluable as it gives us all peace of mind. I did work within the NHS, signed off now for 6 months : ( and the clinicians couldn't understand why I traipse off to London when there is help nearer but we wouldn't have it any other way. I do believe the Professor and this Hospital is one of the best if you can bare the journey. Can I ask which hospital you are under?

Oh and chatting and/or coffee would be great. I sadly don't travel very far on my own atm due to my symptoms but I have to say its good to know you are nearby.

Lin x

[pixie24 in reply to Lin007]

Hi Lynn,

I am at Herts and Essex hosp for appointments.