I’m posting a lot I know but I feel so hopeless - LUPUS UK


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I’m posting a lot I know but I feel so hopeless

Buckley123 profile image

My sons birthday tomorrow he will be 6 ❤️ I’ve spent all day feels like wrapping my hands hurt and so do my legs bone pain is just throbbing away at me.

My consultants secretary has fudged up my appointments for my face scan and given me a follow up before my scan instead of after and now I can’t get a follow up until end of October which means I have nothing for my neurologist in June and everything is back on hold.

I don’t understand why I can’t get any help it isn’t like they can’t find anything brain lesions hip problems Facial swelling lymph nodes swelling tongue swelling eye pain muscle bloody twitching

But my bloods say I’m fine .. I’m so over this I’ve had it I’ve paid out thousands on scans all that show things!!!!

I’m so tired 💤 no one in this house cares ‘ if it was that bad they would know your fine ‘ well I don’t feel it I feel awful. All I see is people with actual diagnosis is it not bad enough can’t it just be straight forward treatment plan!! I feel like it’s only me I know it’s not but it feels that way

I feel like I’m moaning all the time I try not to cry incase I feel worse..

What am I missing what can I do why wont they help me

18 Replies

You poor love! LK hugs on way because there’s not much else I can do xxxxx

Please rant as often as you need. We’re here

Buckley123 profile image
Buckley123 in reply to Lupiknits

Thanks for always replying I know I’m a moaner at the moment xx

Buckley123 profile image
Buckley123 in reply to Lupiknits

Don’t suppose you get this itchy hot rash for no reason ? Xx

Lupiknits profile image
Lupiknits in reply to Buckley123

Not like yours, but if my butterfly rash is on fire, I use an Avene Thermal Spring Water spray mist thingy. Supposed to be soothing and anti irritating for sensitive skin. Discovered it years ago in Rome during an exceptional heat wave ( before I was ill). My sons appreciated it then, too. Probably snake oil, and I’m a sucker, but it’s a very fine mist, let it dribble down, and it’s soothing x

Hello Buckley, I am sorry you are feeling so unwell and having such a difficult time getting answers from your doctors.I had a long battle to get a diagnosis and help and remember just how alone I felt.I hope things improve for you soon.If you don't get help at home if you can possibly manage it buy help.I got someone to clean and that helped me a lot.If that's not possible then just do the absolute minimum and ask for help directly.My family didn't offer but I find asking them to do a specific thing works better than asking for help in general.I hope you have a better day tomorrow and enjoy your son's birthday.Jane

I really feel for you. I think the issue is that a lot of these symptoms are invisible, when people say I look well/healthy I know they mean well, but I’m like well I don’t feel well. Sometimes I find just trudging on even when we don’t feel like it is the only thing we can do, where we physically can. I’m sure your little one will be so grateful for all his lovely presents and all you do for him. And moan away! At least here people understand!

I think many of us can relate to just how frustrated you are right now.

There’s so easy or straight forward route.

Has your gp ever tried you on a dose of steroids? January last year I’d had emotional and eventually my gp agreed to try steroids to see if I responded to them. I guess this was very useful to confirm I was suffering from autoimmune disease.

It may be worth you seeing if you can try them .

I visited the gp surgery nearly everyday for 2 weeks last year so they could see my physical symptoms . I didn’t get a diagnosis off the back of doing this but I was able to cope much better with the steroids


Thanks everyone really appreciate it.

I’ve got three young children that all have there birthdays 2weeks to 5 days apart 🤦🏼‍♀️😌

I just don’t understand the whole thing.

My neurologist said he would have me in treatment by Christmas and then did a u turn.

He tried to say all the lesions could have already been there .. which is true.. however the first scan showed white patches active lesions on the second scan showed no active lesions just scars .. so why wait I don’t understand they can not undo the damage I miss my mum not sure I can do this without her

It’s a lot easier to fight for someone else then your self

Thanks listening xx

Lisalou19 profile image
Lisalou19 in reply to Buckley123

You can do this darling. I know your struggling and on top of having 3 children it is very difficult for you.

If you need a listening ear by phone feel free to reach out to me.


Buckley123 profile image
Buckley123 in reply to Lisalou19

Thank you so much Lisa you too cx

First things first..u come over here lady n let me give u a huge hug 🤗🤗🤗!!! U are not alone 💐

It takes a lot of patience n it's very frustrating for most autoimmune rs to get some kind of diagnosis..questions without black n white answers do my head in for sure!!

Well done for getting your little boys pressies wrapped 🎁 I have three grandsons whose birthdays fall like yours..eldest grandson first n then two weeks later next eldest..two days after that the youngest on the same day as his dad..my son in law!!! It's like a second Xmas and it all falls around Easter this year!!!!

The first year after losing someone u love is always the hardest..trust me I know..all of these anniversaries that will happen as they just do in the course of time u r reminded of last year when your mum was still with u. I would definitely say if u feel like crying...have a blooming good cry!! Rant n rave if u want to..sob..punch a cushion..anything that helps to give u some relief..it will wear u out!! There is a recognised process with grief n it's totally natural process that anyone has to go through..u go through all stages n acceptance is the last one..however if one gets stuck in any phase problems can develop...so it's important that u have someone to work through it with u. What support network do u have..any siblings? Good friend? If not then MIND might be able to help...I keep forgetting that we're cyber here n u could be anywhere in the world 😂🤣😂!! Remember it don't matter what you've got or not..if your in the diagnostic wilderness..we have all been there...u have friends who understand!! OK???

Right let's do another couple of hugs 🤗🤗🤗😘😘😘xx

Thanks for your lovely reply I was feeling really down yesterday but my son has had a lovely birthday just have to manage Legoland tomorrow and it’s a home run xx

Thanks for your kind words at a time they are really needed . I’m just finding it difficult I spent so long fighting for my mum I’m having to dig even deeper to fight for myself xx

You're a warrior..you've wrapped pressies..given your little boy a great birthday...n hello??? Legoland?!?!?! Hope u have a fab day..oh n don't forget sunscreen hat sunglasses etc...or umbrellas n raincoats!! 🤗🤗Xx

Lisalou19 profile image
Lisalou19 in reply to Krazykat26

Oh Krazykat26 , your reply above was beautiful. I find the support here from others is amazing, and you really have given some great advice ❤️

As for legoland, make sure you wear super comfortable shoes. If I had known sooner I would of come and met you Buckley just to give you a reassuring hug.

You are doing amazing, you’ve got this!!!!!

I find that hitting low points really encourages me to get strong again. Its very much a rollercoaster.


Buckley123 profile image
Buckley123 in reply to Lisalou19

Thankyou Lisa xxx

Tag you Krazykat xxx

Well said Krazykat26 - the first year is really hard after loosing someone close to us. But I think your mum would be so so proud of you, how you’re managing and your children.

Sending you a big hug x

Buckley123 profile image
Buckley123 in reply to Yellow5

Thanks I really appreciate your reply I hope so I spent so long fighting for her basic rights when she was alive I just do t have a lot left in me cx

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