Does anyone get facial swelling or wake up feelinglike they've been beaten up?

Hi all,

Can anyone tell me if they get facial swellings? Sometimes I wake up with my eyes swollen shut or my mouth and tongue swollen. I have been to my gp, even hospital to be told it's an allergic reaction. Test comeback fine. Also, does anyone wake up feeling like they've been kicked by a mule? My back hurts, hands, feet, chest pains basically every where. I'm confused and any advice would be greatly received.

22 Replies

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  • Hi kitkat

    I also suffer with facial swelling in the mornings, it was this facial swelling that led me to being investigated and finally diagnosed with Lupus. I too was told at first that it was an allergic reaction to something and was put on a long term course of anti-histamines but they had no effect.

    The swelling has improved greatly since I started on hydroxy. My eyes still swell a little but nothing compared to what it was before. Previously my upper and lower eyelids would swell to such an extent that it looked like I had been beaten up! People were always asking me if I was ok and had I been crying. The swelling also effected my cheeks and upper lip area so I can kind of understand why my GP thought it was an allergic reaction at first.

    Before I was diagnosed with Lupus I was under an ENT doctor who prescribed me steroid nasal sprays these really helped with the swelling but as soon as I stopped using them the swelling returned.

    Have you been offered any sort of treatment by your GP? I would ask and see if there's anything they can give you for it. It may be a bit of trial and error until you find something that helps. I know how frustrating it can be and it's awful getting up in the morning and looking in the mirror and not recognizing yourself because you're face is swollen.

    I hope you have some luck getting to the bottom of it x

  • Hi Medievalgirl,

    Thank you for your response. I'm sorry that this happens to you too. It's really strange. When it happens do or have you ever experienced tingling in your face? Sorry for all the questions but I will take your advice and go back to the gp.xx

  • I've never experienced tingling in my face that I would link to the swelling, although I have recently experienced tingling in the palms of my hands and the soles of my feet and on days this is really bad my face tingles as well. I spoke to my rheumy about it and she gave me a blood test for vitamin b12 deficiency which came back to show I am b12 deficient.

    Make sure when you see your GP you mention the tingling as well because my rheumy did a few different blood tests because there are a number of things that can cause tingling sensation on the skin. x

  • Medievalgirl, you are so full of valuable information. Yes I get tingling, numbness in the feet, hands and a nasty ache down my right hand and arm. Feels like when you have your wisdom teeth taken out. Thank god for this site and key information. I was starting to fear for my sanity!!!!! Xx

  • Me too! Just started with b12 shot and pills daily, wonder if there is a connection.

  • Welcome to my world..its getting worst on my monthly i wake up with pressure in my forehead and swelling on eyelids and under eyes i look like elehant women...i tend to up my steroid dose it goes away eventually can flare if i miss my meds too..doctors are no help had these symtons for 11yrs ...

  • Hi Tiamonet,

    Yes I know exactly what you mean!! Thank you for replying I need all the help and advice I can get. I've just started taking hydroxychloroquine, it's my second does I I feel so sick. I'm trying to see my gp Monday as it's really not agreeing with me. I' fed up with falling to pieces, it seems like I lose a bit of myself everyday. I am up beat most of the time but also get frustrated as things get worse. I'm reading through as many posts as possible (especially yours). I begged my gp to put me on cerrazette (sorry can't spell) as I could no longer cope with periods.

  • I also wake up on occasions to a swollen puffy face and tingling pins/needles hands. I have also woken up to find my neck extremely puffy, like a double dose of mumps. I have noticed a slight improvement since taking methotrexate, however it still occurs. I don't know why it happens but I can sympathise.

  • Hey loopy-lou,

    Gosh thanks so much. When I mention/show my symptoms I get looked at like I'm nuts!!!!! I'm so tired of this illness, my head is literally going to explode. I thank all of you from the bottom of my heart (am getting tearful) I thought I had come to terms with everything, perhaps not. I can't type anymore due to the tears. I feel for everyone going through this nightmare xx

  • Hi Kitkat, I am so pleased you posted this as I have never mentioned my face to my rheumy/GP. I have mentioned my neck in the past and like you just get looked at. I tried a new phrase of, "I know this sounds whacky, but......" I thought they may listen. Can live in hope. I too have tearful days. We have so much to cope with this illness. Keep posting as there is always support and understanding here x

  • Morning loopy-lou,

    Thank you for your lovely response (everyone on here too) and sharing your stories. I apologise for the meltdown, I ended up being sick and feel ropey this morning too. My emotions are all over the place and so glad for the support!!!!! Xxx

  • Morning Kitkat74, I can't help with the swelling issue, but would say if you've only just started on the hydroxy, stick it out if you can (unless it makes you really poorly). I've been on 400mg for just coming up a year now, and it took a while to get used to it. I felt quite queasy on it and it gave me a bloated tummy for a few weeks, but now I'm absolutely fine and is done wonders for my joint symptoms. Make sure you do take it with food if it's making you rough. Hope you feel better soon Xx

  • Morning dawn1977,

    I am due for another dose today but don't think I will take it. I feel really bad and to be honest don't think I can last till august to go back to the rheumatologist. Thank you for the well wishes.xx

  • I get facial swelling as well most of the time that get slightly better as the day goes by. I look very different from what I look on very very few days when the swelling for some reason goes. I have had it since childhood and still find it difficult to come to terms with (55 now). But I guess there could be much worse complications with lupus so I should be grateful that otherwise I feel reasonably OK. No answers either, although I am at the moment looking into hypothyroid which I had a few times in the past but it always resolved itself. One of the symptoms of hypothyroidism is a puffy face.

  • Morning Petrof,

    I keep asking them to check thyroid but they keep saying it's fine. Although the swelling in my neck is quite obvious at times. Another person said oh you've got a goitre. Doctors don't take any notice and it will be another 9 years before they realise what else is wrong.xx

  • Well, I am waiting for my blood test results - next week, will see. I have also noticed that the swelling was usually getting more noticeable before my period, that would indicate hormonal connection. However, I am in the menopause now?! Also it seems to be more noticeable when I have a viral infection.

  • Good luck with your results Petrof. Please let me know how it goes. Xx

  • I did many years ago, long before my Lupus diagnosis. Was told I had a peanut reaction. I knew they were crazy, I didn't stop eating nuts. Strange things kept happening to me, my body. Fat lips, face, eyes, psoriasis, thrush of the mouth, a falsh positive on a std, hair constantly falling out. Sores in my nose, bloody nose as a young child. The list is endless. My diagnoses answered the question of most of these issues. Parents thought I was looking for attention, if they really cared, they would have taken me for a full screening. Don't know if it's relavent, I was born premature.

  • Hi Geishagal,

    Yes I understand you. My swellings happen on aeroplanes, work (usually after eating) just waking up, have had a few nose bleeds of late. The nurse at my gp surgery said it's my make up (it wasn't as it was happening when I wasn't wearing any) also I don't wear much!!!! I too have had bald patches in my hair (which I shaved off for the last 3yrs) had no eyebrows on the edges. I've been plagued with funny, scaly skin conditions shedding skin like a snake) most of the time they old me it's fibromyalgia related. I have had my fibro,jhs diagnosis 2yrs, pbc diagnosis 3yrs and lupus 2weeks Tuesday!!! Still trying to get my head around it all. Xx

  • Lol feeling and sometimes looking. Puffy swollen checks. Sometimes i really have to encourage my self tho live my life.

  • Going to Dr. Tommow to get results for my arm exray. Mom was diagnosed over 30 years with lupus. They said she was suppose to be dead long ago. But thank God after having one kidney removed she is still alive and well. The gp did blood test before for me but still no diagnosis. I would just like to get an official ruling already.

  • I feel the same way and with me whatever side I wake up that side of my face don't feel right for hours

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