First RH appointment tomorrow

[Alicexo]

I am absolutely beside myself at the moment. After being seriously unwell for 3 months, especially the last week or 2 being so unwell I wonder how cancer could feel worse... I have a positive ANA & DSDNA. I have booked privately to see a rheumatologist because I cannot wait on the NHS as my life has spiralled out of control very fast. Im struggling to cope mentally and I feel like maybe this isn't real, I'm questioning my sanity but losing hair, rash, dizzy, sick, dry mouth, flank pain, stomach pain (intense) burning itchy feelings, icy cold feet, pain everywhere else, stabbing pains in my eyes, pleuritic pain......... I feel like im having a breakdown. Can I just be mentally ill?

UPDATE: Thank you all so much for your kind replies. I went to my appointment amd was barely able to walk or put my shoes on that day. When the Dr saw me he told me I immediately needed to go to A&E dye to suspected Adrenal Crisis. I have adrenal insufficiency ( like Addisons but its a secondary condition called pan hypo pituatrism) in all the madness of symptoms I didn't realise that I could be having Adrenal crisis ( have had before) I ended up getting a high dose Cortisol shot and I've been in this hospital ever since. I am about an hour from my home town as i was told to go to nearest hospital. I've had a lot of tests inc ANA DDSNA ENA etc that I'm still waiting for results of. I have a lot of pain in my kidneys and trace protein and blood. I do not have a UTI however so it's going to be investigated, meanwhile I am on morphine. I need to have a nerve conduction study done and see the rheumatologist for review when all my bloods are back.

The tests I'd had in January were repeated as I'm not from this area/ hospital but they did get the results from my Dr eventually They said my ana or dsdna was borderline back in Jan.

I have been told I have psoriasis guttate aswell which is this rash all over my body.

I don't want to use the steroid cream yet however until I know back from my blood tests if I def do have Lupus as I hear if you do you shouldn't use such creams.

I'm still wobbly on my feet but some symptoms have eased some are the same. I guess it's just a waiting game now. Im hoping that somehow nothing is wrong and that psoriasis can raise ana/dsdna levels - call it denial lol. Sorry if this was a lot and all over the place. Thank you again for all the comments and support and sharing your experiences. I will update again when I know more. Wishing everyone lots of love and peace xx

There Is a butterfly on the chart above me in hospital with a tick box that's blank... I am praying to god I walk out with it remaining unchecked x

[Debbie_kinsey Administrator LUPUS UK]

Hi Alicexo

Welcome to the LUPUS UK forum. I'm sorry you're having such a tough time with so many symptoms at the moment. It can be really overwhelming to deal with a lot of symptoms, medical appointments, and trying to work out what everything means for your life. I've put some links below to some information that might help, but please do get in touch or reply here if there's anything you'd like more information on, or anywhere I can signpost you to.

Firstly, we have a free information pack for new members, which includes information on lupus as well as LUPUS UK as an organisation, how we work, and what we do. You can request it here: lupusuk.org.uk/request-info...

We also have local support groups and Contacts (people living with lupus or who have a family member with lupus) who can offer support. You can find details of these on the below links, but feel free to privately message me with your location and I can send you the details for your area, or you can call our helpline (01708 731251) during office hours and someone will be able to give you that information over the phone:

LUPUS UK Contacts - lupusuk.org.uk/contacts

Support Groups - lupusuk.org.uk/lupus-group-...

We have a huge amount of information on our website about things like diagnosis, managing symptoms, mental health, and more. I don't want to overwhelm you with too many things at once, so, as you have your appointment tomorrow, you may find this blog post on getting the most out of medical appointments useful, as it has tips and experiences from people as well: lupusuk.org.uk/getting-the-...

It's very common for your mental health to be affected when you're dealing with physical health and everything that goes along with that. Although they're not lupus- or health- specific, you can also call helplines like The Samaritans (116 123; [e-mail]) or CALM (0800 58 58 58, open 5pm-midnight) to just talk through how you're feeling with someone for immediate listening support. You can ask your GP for a referral to mental health services for more substantial support, and in some areas you can self-refer without going through your GP.

If there's anything I can help with or further information you would like, just get in touch. I hope your appointment goes well tomorrow,

Best wishes

Debbie

[Alicexo in reply to Debbie_kinsey]

Thsnk you so much for all this info 🫂

[BonnyB]

I have found, particularly in a flare, that my mood lowers. On top of the physical things , this is the last thing I need. I've described it before as ' like a black cloud comes down over me'. I'm saying thats it with you but just letting you know how it makes me feel. Dont be nervous about app. You should get on well with a private Dr I've been fortunate, my NHS Dr had been really good.

So good luck tomorrow , let us know how you get on x

[Alicexo in reply to BonnyB]

Thank you I will write an update reply x 🫂 thank you fir sharing this with me

[Geeforce99]

Hi Alicexo

Sorry to hear your having a flare up, I have had this twice recently and both times have been to see private rheumatologist as I needed to keep my job after being off two months both times and was struggling, I was given medication which has helped after it gets into your system then had to reduce it as it was finally stopped. I have supply in case another flare up occurs which was last weekend I still have to take another medication in the colder weather to help with circulation issues, take care and all the best hope you get the help you need very soon. 👍🏻😃

[dg70]

Sounds like you may have more than one illness there. Seeing a Rheumatologist who can unravel all this is good. Write it all down. Take pictures when something flares up. I still go private as the nhs waiting lists are so long at the moment. You should get at least half an hour but it goes quickly. I have Sjogrens and Lupus and peripheral neuropathy. Autoimmune loves to join hands with other autoimmune conditions it seems. 😀Try not to panic. Try and rest more every day if you can, it helps calm things down a bit. Stress is a no no with a flare. Easier said than done! We all think we are going mad or even told we are by some clinicians but find the right Consultant and hopefully your mind will be put at rest and a proper diagnosis will be found and treatment will begin which helps no end. Of course if you get much worse then call the GP as urgent and see what they can do in the interim, they should point you in the right direction. What you are feeling is not uncommon just do what you can to reduce any stress. I hope everything goes well with your Rheumatology appointment soon.

[Alicexo in reply to dg70]

Thank you so much for this message of support I will reply to this thread with an update x 🫂

[dg70 in reply to Alicexo]

Be good to know how you get on.

[MusicalFurbaby]

These symptoms and diseases are completely insanity-making, so you are doing it right! All joking aside, I’ve been in that place where I thought I was losing it. It doesn’t help when so many symptoms are invisible to others. They might be able to see a rash, but they can’t see pain, or itching, or icy sensations. So we end up questioning ourselves.

Try to be gentle with yourself (I’m trying to do that with myself atm) and compassionate toward yourself while this flare lasts. It’s not your fault, you didn’t invent these symptoms, and it’s understandable you would be a little stressed out by them! See if you can do a little self-care in the next few days. I find that when I’m feeling worse, my self-care needs to double in order to compensate. I hope you can find some double-strength self-care for yourself! ☺️🌻🍫🌈

[Alicexo in reply to MusicalFurbaby]

Thanks so much for your compassion and understanding x

[minka]

alicexo at last you sound just like me this is how I've been for last 3 months feel like i got rumi in my feet and bones moving can hardly walk. left ankle hurts and knee swells up. your immune system is attacking you. no hair yet for me . do you have any knee swelling ankle swelling ? if you see you rumi private as i did TRY TO GET A KENOLOUGE INJECTION IN THE BUM. This will drop your immune system and hope it comes back normal. i wonder sometimes with all the injections we have had whether that has done anything to us.

[Alicexo in reply to minka]

Thank you for this I have wondered the same tbh xx 🫂