Just diagnosed

Hi there. I was just diagnosed with. Lupus a couple of days before Christmas and it's been a roller coaster since then... I've tried to be ok and strong for my family because they have not taken the diagnosis that well, but honestly there's days I really don't feel good at all.... Recently my eyes started swelling up and my face looks like I'm super sick... And people who are not aware of my illness ask if I'm ok. Has that happened to any of you? I mean besides all the other symptoms I've had, rash, numbness, fatigue, swellings, itchiness, and many other ones, the swollen eyes has been very bothersome... Only because I can't handle people feeling sorry or pity for me at all. Is it just me or do any of you feel like this??? Oh and are any of you experiencing cold hands and feet??? Oh my goodness mine are horrible! My hands don't seem to warm up!

Sorry guys I'm just venting and not making any sense.... Thx for listening...

22 Replies

  • I hear you I have been on the Rollercoaster 2years and now I'm on disability insurance have more issues than just that

  • Sorry to hear that you have more issues now😢 hopefully I get on some meds soon so some of my swellings can be controlled. Hope you feel better soon!

  • Hi so sorry to hear your diagnosis , I am just diagnosed too so also coming to terms with it. I too get cold feet especially my left foot. The fact both your hands and feet are cold could be Raynauds which is part of lupus. I don't have swollen eyes but have many other symptoms. Most days are a real struggle to be honest but am only recently started on hydroxychloroquinine so too soon to be effective as can take 3-6 months to help. Its horrible as I don't look ill apart from looking drained, so no-one really gets the fatique and pain as can't see it and you feel people would get really fed up if you really told them how you feel when they ask ! I feel for you, but on a positive note this site is great as you are not alone x

  • Thank you so much for your feed back! Somehow it really does feel like this forum will help a lot. Because no one (in my family) really knows how I feel only because I don't want to worry them or bother them in any way... Thank you hope you have a great day!

  • I have been diagnosed with Lupus for 10 years. I looked awful when first diagnosed and people including friends avioded me as they did not know what to say. I was covered in lesions had black shins through erythema nodosum. I am now medicated and managed really well. I have a full time job and really try hard to look after myself. Everyone is different and the illness affects people in different ways. Sometimes you are positive and sometimes you need to rant, this forum is great for support. Find out as much as you can about Lupus and all the different things you can try to help manage the condition. i know it is daunting but there is life after Lupus and mine is great. Good luck xx

  • Thank you so much for such a positive feedback! I am very hopeful I'll get there soon!

  • Hi sammiejulz

    Welcome to the forum, hope you find it helpful as your so newly diagnosed!. Did it come as a shock or had you been ill a long time?. Paul Howard will be able to email info about lupus to you if you would like it?. I hope you were put on treatment and it starts to work soon. Sounds like you have Raynauds too which can often predate lupus symptoms by a few years!. The Raynauds and scleroderma association is very good with help and advice if you google it. You can be put on different medication to open blood vessels and improve circulation. I take nifedipine 20 mg a day without side effects. If you do get them there are plenty of others to try.

    Lastly, take time for yourself to process having this diagnosis and what it means. Lots of TLC and you'll get there , keep posting as it will help you feel less alone. Take Care. X

  • Hi! Thank you so much for your response. I truly appreciate it! And yes please can he send some info for me please?

  • Hi Sammiejulz

    Email Paul Howard on the Lupus UK website and he will send you the info. x

  • Hello sammiejulz

    It does take some time to adjust to a new diagnosis, so try to be kind to yourself, you are your own best friend in life. I was diagnosed with SLE 6 months ago, and I am still adjusting. The medication takes a good few months to start working, in fact I am still seeing more benefits (less not so good days) from the medication as the time passes. Initially I was on sick leave from work for 5 months and have recently returned. My hours are reduced for a few months (4 days instead of 5) but I find the day off in the middle of the week (Wednesday) really helpful. For me, getting back to my normal routine (slowly but surely.....and in your own time) has also been helpful. Your family sound as if they are taking the news as quite a shock, which is natural. However you need to stay positive, so do try and be around positive people, and do positive things to please you. If people 'feel sorry for you' then that's their problem, don't take their reaction as personal, we are not in control of how other people react, but we are more in control of how we react, or hopefully respond. All the very best for adjusting to your new way of being, you are not alone, we are all taking a similar journey :-)

    Bright Blessings


  • Thank you so much! I appreciate everyone's feedback tremendously! I'm sure my family just needs time to take it all in but I need them on my side, positive like myself. I am fine and I'm sure I'll be better once I get some meds😁 Blessings to you and your own!

  • Its such a horrible shock being diagnosed. You will get help in managing the illness with medicine and once you get the symptoms under control as much as possible you will feel happier. Everyone is different. My eyes are swollen and I look ridiculous sometimes...but get as much sleep as possible and have your thyroid checked (I'm not a doctor) but I think that's why mine swell. Stay warm and do lots of reading. This website is great for support, but try to get your family to read too so that they understand the overwhelming exhaustion and pain it can cause and can help you with it.

    Good luck and stay in touch with this site. X

  • Hi Sammiejulz, I had a big roller coaster prior to starting Hydroxycloriquine, it took about 8 months before my joint pain, muscle weakness and fatigue calmed down. The rash on my face has never gone away. I am really glad you joined this forum. The people on here are very knowledgable and supportive. I wish you all good things and hope you feel better soon. I thinks it's best to be honest with your family and friends about how you are feeling. Gentle hugs, Nan

  • Raynauds-- the most important thing that's worked for me is exactly what my rheumatologist told me a few years ago: gloves. I don't wear pajamas, but I sleep well with just my fuzzy booties and gloves on ! It has become 2nd nature to always be wearing a pair -- even the "Madonna" fingerless gloves help -- somehow just covering your hands keeps the fingers warmer. Surprise, this winter so far I have not had a Raynauds flare. (But many Lupus flares causing other havoc with my lungs and fatigue.)

    Also if I start getting the sore "tingling" -- you know when your fingers are about to do their thing -- I have found what works best for me and most times it stops the flare from progressing -- I soak my hand (usually it is my left hand) in a bowl of hot water for about 5-10 minutes. (If it cools down, sometimes I need to put in new hot water). A few times it did not stop it, but it did give me some relief for a short while.

    Many years ago my Raynauds started with intense foot pain, but it mainly affects my hands now. Perhaps it's due to keeping my feet always warm. With hands it's a bit trickier, like reaching in the refrigerator, touching something cold -- and definitely I have to wear gloves in the grocery store refrigerated areas.

    AS for hydroxychloroquinine or "Plaquenil" -- it has worked wonders for my aches and stiffness the past 4 years.

  • Hi sorry you have lupus, please try Good sunglasses or ordinary glasses with lens that goes dark in sun.Lights/sun/can Irritatd Lupees Eyes.norma.Hands = wear Special Athritic Insulated gloves, Feet Same athritic insulated feet stretchy bands..norma.xx

  • Hi Sammiejulz,

    Welcome to our community forum. I hope that you're finding it a useful source of information and support.

    I'm sorry to hear that you have been struggling with your diagnosis. Have you been started on any treatment yet?

    As misty14 has suggested, we do have some information available will may be useful for you. You can request or download one of our free packs at lupusuk.org.uk/request-info... We also have all of our publications available to read or download at lupusuk.org.uk/publications/

    With regards to your cold hands and feet; have you been diagnosed with Raynaud's phenomenon? Many people with lupus also have this overlapping condition. You can learn more about it and get some tips for managing it in our blog article here - lupusuk.org.uk/coping-with-...

  • Hi Paul! Thank you so much for the quick response! No I have not been started on any meds yet and I don't have my appointment until the 24th of February😞 My bad days, as I call them, are getting stronger each time. And I'm getting a bit frustrated. I don't like to see my kids worried little faces😢 Before I use to be able to hide pain or feeling sick, I haven't been able to anymore and it's very frustrating.... Anyway thank you so much for all the information, very appreciated.

    Blessings to you Paul!


  • Hi Sammiejulz,

    If your symptoms are getting worse and you are struggling to manage then maybe go to your GP. They may be able to prescribe something to help you manage until your appointment, or contact your consultant to get it moved forward. You can also try calling your consultant's secretary to see if there have been any cancellations and whether they can fit you in earlier.

  • Hi Paul! I actually called yesterday because it was one of my bad days... And she said she'd call me if there were any cancellations.. Hopefully they will. And I think I'll be going yo my GP because I don't want to be going through this and have my kids worrying if I'm ok....

    Thx so much Paul!

  • Hi

    I can understand how you feel,I have had all of these symptoms .I had facial rash,swelling ,however ,my eyes get itchy and my eyelashes break too often .Also I get very cold hands and feet,even if I am sitting in a warm room where others are comfortable,my hands just feel so cold and people have noticed it as well.Before my diagnosis I got Raynaud's as well but that has improved alot with medication(hydroxychloroquine).

    I hope your symptoms get better.

    Take care

  • I feel like I'm not crazy or alone here in this group! Thank you for your feedback! I hope my symptoms diminish once I start on some sort of meds... (Fingers crossed) Hopefully very soon!

    Thank you!

  • Sure.

    I hope you get better soon.

    Stay blessed.

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