Recently diagnosed

[Simplyme37]

Hi I'm very much new to this. Not sure where to start 😁 I have been diagnosed with SLE but still going through more tests and have upcoming appointments with dermatology and lupus specialist. Rash all over my body but the worst is the excruciating burning hot fire with knives feeling that my feet are experiencing. Hope someone can reach out. Thank u

[strawberrylips]

Hi Simplyme37,Ouch that sounds unpleasant, unfortunately Lupus can manifest itself with strange and troublesome symptoms.

I do hope you get the help and support you need when you see your rheumatologist..

Best wishes jx 🙏

[Simplyme37 in reply to strawberrylips]

Hi strawberrylips, thank you for your response and yes it's painful and really has been getting me down. I'm a 'doer' and like to do things for myself but my fam and frens have to do the absolute most for me at present. I'm not sure how or why everything changed but I am very much feeling like an invalid. I want and need some normality back in my life. I hope that you are well. Take care xx

[Jmiller623]

Welcome Simply. Nice to have you. ❤️xx

[Simplyme37 in reply to Jmiller623]

Hi jmiller623. Nice to be here, I hope that you are safe and well x

[misty14]

Hi simplyme and welcome to this very helpful and friendly site. Its good you've been diagnosed with SLE and i wonder have you been suffering a long time before this momentous day?. This happens to a lot of us. I hope its not long and you will be put on some treatment to help your horrid symptoms.

I can identify with problem, inflamed feet as ive been specially suffering like you for this last 2.5 years and it does make us very like an invalid as its so painful to walk isnt it?. Im a 'doer' too and have found it hard and so constraining.

I do wish you luck for your blood results and consultsnt visits that i hope put you on treatment very soon. Keep us posted how you get on. Keep safeXx

[Simplyme37 in reply to misty14]

Hi misty14, thank you so much for your msg. I was not suffering at all and then it's like my body just started misbehaving itself lol. The rash I cn somewhat tolerate however the pain in my feet is really unbareble, I'm in agony and tears, this is too much. I'm sorry to hear that you also suffer with ur feet, did ur symptoms also start out the blue? They started me on so many meds today I feel like my head is abt to explode. I have to take abt 8-10 a day, not looking forward to this at all but if it takes the dreaded pain away I'd be most grateful 🤗 xx

[misty14 in reply to Simplyme37]

Hi simplyme, yes my feet problems happened out of the blue but like you my feet have been inflamed for years. A friend did tell me feet can be more painful than other joints because they're specially sensitive which i completely agree with. Its so painful to walk that im regularly in tears at the mo waiting to know when i can have a steroid injection!.

Im sorry you are suffering similarly and hope that soon all your meds will help. Some will take up to 3 months to work and others like steroids will help quickly. What dose are you starting on?. Are you taking hydroxy?. It must seem very overwhelming but in time you will be a pro juggling it all. Ask us anything your not sure of and i hope you feel better soon. Take care and keep safe. Xx❤🤞❤🤞❤🤞❤🤞❤🤞❤🤞❤

[Cowsaresweet]

Welcome to the site, l was diagnosed earlier this year and have found this a very supportive forum, and a useful source of information. Sounds like you are going to at least see the right people. I note you say you are a doer, l was training for a long distance walking event before this happened and was constantly on the go. So this has been a dramatic change. Initially I waited to get better and still hope l will but have also now started to plan for not doing so as l wanted to do something! My advice would be to take the pressure off, so my husband has taken on lots of tasks, other things are just not being done. I have started to use Trekking poles when walking and exploring an electric bike, having had a great time on a hired one . Hope your consultations go well do prepare for them with key dates, photos etc. Take care

[Simplyme37 in reply to Cowsaresweet]

Hi cowsaresweet, thank you for reaching out. I think the key thing at the moment is yes, we have to take each day as it comes and also be able to accept the help and assistance whilst it's there. (easier said than done aye) I just find everything to be a chore... Or a whole thought process of getting things done is a nightmare. I'm sorry to hear u couldn't complete ur walk, I used to love walking also. I used a scooter to go shopping yday and also used a crutch/ stick to dry get around my apartment. Everything is so hard. Do u also suffer with ur feet? Mine are so sore and inflamed. Prescribed steroids today so need to start popping em. Take care and all the best xx

[Cowsaresweet]

Yes feet are not great but my knees are my main problem. I am getting use to accepting help, and just aiming to do one thing each day. I hope the steroids work for you, they have certainly made me relatively better to how l was in March but I am still off what I was in February. I have found ice packs helpful, with the pain, and on one occasion l went for doing an ice bath for my foot. I must admit I don't know how the athletes climb into a complete ice bath. If you are using ice packs though do remember to put a wet flannel or cloth between the pack and your skin so you don't get an ice burn.🥶

[CecilyParsley]

Hi Simplyme and welcome. This forum is amazing, full of supportive and knowledgeable people. I understand totally what you mean about burning feet. I get it in my hands too. It is painful and debilitating. My GP and a Rheumatologist said that it was Raynauds but I am not convinced. I hope you get some answers xx