AID really active at the moment. Looking for some support.
My AID is really active at the moment. I am really struggling with dermatology problems ( constant dry and itchy from heady to toe, really debilitating), also gastro problems, diarrhoea and vomiting 24/7, very uncomfortable. I went to see a gastroenterologist and a dermatologist privately 2 weeks ago and still nothing has been done. Apparently my pancreas is not working so anything I try to eat or drink passes straight through me. I have lost 2.5 stone in the last 9 months. My hair has almost fallen out. I really need some support to get through this, as right now, I feel like giving in
Thanks
Babs
Written by
babssara
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How awful Babs, that must be so so difficult and I completely understand that it really makes you feel so low when you feel so awful.Why could the private dr not help?
Depending on the situation I would say one of 2 options. If you’re not able to tolerate anything without sickness or diarrhoea and you’ve lost so much weight from it then I’d say thats A&E worthy as you may need rehydration through IV, and they can also try and do further investigations or put plans in place to help you.
Failing that I know it puts you further out of pocket - but maybe a second opinion from another private physician and look at their bios for someone who specialises or who has a clinical interest in this.
Really hope it’s sorted soon for you, always here if you want to vent!
Gentle 🤗🤗🤗from me Babs 💐I agree with the others you need medical intervention. If you have been having constant diarrhoea n vomiting for more than a couple of days your electrolytes will become depleted. Drastic weight loss is significant too.
Of course it's entirely up to you but I think 111 call is needed here. You're in terrible pain and you need help so please reach out as you have done with us.
As far as the itchiness with your skin goes I use Piriton to help ease the itch..but if you can't keep anything down that's gonna be impossible. It sounds like you could be dehydrated too..when I went into hospital with all over skin rash they gave me IV fluids. Please seek help!! Keep in touch 🌈😽😽xx
Oh bless you. I am appalled to hear this. Surely you should be admitted losing that much weight and with vomiting and diarrheoa. I agree with everyone here you must go to A&E and let them help you. Please let us know how you get on. Big Cwtches xx
Sorry to read about your serious need for urgent investigation , yes I would call 111 NHS . I would also make urgent call to practice doctor and your rheumatology consultant . I also would not let either of the above pass the book to one or the other , i would insist they rake action on your health .
Wishing you get answers soon .
Do it know before these problems make you too week to seek help .
🦋❤️
Don't give in. It's easy to say this when things are desperate but just try to take one day at a time and focus on what you can do. Ask the private provider to ask for their advice on way forward. It doesn't replace dermatology advice re skin but try Liz Earle products as gentle on skin. Take care. Things will get better.
I agree with all that’s been said especially phoning 111 if you haven’t already done so by now. You have come to the right place for support. We are all here for you and please let us know how you get on. With healing hugs 🤗🤗😘x
I’m so sorry to hear you are feeling so low. Have you contacted 111? Your symptoms certainly sound like they need to be urgently addressed.
Have you or the private doctors you saw shared their findings with your GP? I would urge you to go to speak to your GP or consultant as they are likely to have the most up to date information on your records and be able to make appropriate referrals.
Would you like someone to speak to? We have LUPUS UK Contacts who are trained volunteers, who either have lupus themselves or have a family member with the condition and act as carers. You can chat with our Contacts over the telephone. They are not medically trained but are there to offer both emotional and general support. The telephone service is confidential, and you can disclose as much or as little as you wish. The support service is free apart from the cost of the call. You can request a Contact here:
LUPUS UK has support groups in various areas around the UK, details of which you can find here: lupusuk.org.uk/regional-gro... . Our groups are run by volunteers, most of whom have a lupus diagnosis themselves.
I do hope you are able to make progress and start feeling better very soon. Do please keep us updated.
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