Looking awful but feeling ok?

Most of the posts here touch upon people commenting how well one looks when in fact that person is suffering.

I'm having the reverse experience at the moment. I'm feeling more or less ok (some back ache but bearable), my blood tests are all ok (bar a raised GGT but that's normal for me), organs are all ok, thyroid ok, recent brain and spine MRI and lumbar puncture are all fine BUT I look dreadful!

I have dark circles under my eyes, I wake up with slightly puffy under-eyes that doesn't really improve during the day, I look tired, although I'm not, I'm pale (but not anaemic). Everyone tells me how shattered I look, it is starting to worry me - makes me think I'm missing something, maybe there is something lurking in the background that hasn't yet materialised enough for blood tests to pick up (doesn't this disease make us paranoid).

Mentioned it to the GP who said I'm not looking abnormal but then I had make up on, so that didn't count, plus they always go by blood tests and mine are fine.

Anyone else who has a similar experience?

30 Replies

  • Hi purple top.yes i do fro the last 3 years. have discolouration round my eyes,swollen nose(bone growth)puffiness around browbone .skin rashes all over esp face and hands.so far all dismissed.i notice it every time I get up and I have never worn make up.it looks worse cos I have lost weight on my face -making my nose look enormous

  • I thought I'm the only one. It isn't a matter of feeling sorry for myself because my looks are going (not that I had much of those to start with) but the changes usually mean something is happening inside. Ah well, as Alex says below, maybe it is time to use make up.

  • Hi Purpletop,

    It's good to hear that you are feeling ok whatever you might think you look like! How did the LP go? Was it completely normal? I have to say I have never suffered from the looking awful/feeling well problem, or the looking fine/feeling rubbish burden either. I look awful, and I feel awful, every ache and pain is written all over my face, and people don't give it a second thought before they tell you how terrible you look. I'd like someone to lie for a change, then I might be more inclined to leave the house haha!

    If I were you, I'd try not to get anxious about why you still look run down, you've been through a lot and it takes a while for the body to replenish itself. Make the most of this period of remission, slap on some war paint, and have some fun.

    Wishing you all the best,


    Alex xxx

  • Hilarious - enough reality, huh?

    I'm not going to call this a remission because I'm not symptom free but you're right, I should enjoy it whatever it is called.

    I wish I could say that the LP went smoothly but not so lucky - other than a week long needing to lay flat because of headache, I still have lower back pain from it that radiates to the hips and thighs, 3 weeks after. Neuro said "sorry you had such a bad experience, it is very unusual" - great, as long as I'm the only one suffering that should be ok, argh.

    Thanks for the good thoughts x

  • Urgh, sounds like it was a baddie. LPs are no fun at all, but that does sound really extreme. Did they get it right first time or need a few stabs? One of my 3 was done by a trainee dr who was allowed 6 attempts before his supervisor took over. Not funny. Anyway, I do hope this better spell lasts a while and that you go from strength to strength. Take care xx

  • Sorry, I also meant to say that LP results were normal, so were the brain and spine MRI. Couple that with the normal bloods and the neuro was wondering whether the diagnosis was correct. Yeah, right, it has all been a bad dream then.

  • Hi purpletop, my looks are not the best either, regardless of any lupus activity. My eyes too are dark and puffy. I blame the lines on my face, to the almost permanent grimace, due to pain. Lol.... I do think poor sleep is a part of my ' looks ', but seriously, I do think the meds play a part too. When my meds (all except thyroxine,) were stopped for 10 months, I did look better. Shame I didn't feel it too !!! I laughed at your post because I have spent the last week trying all these wonder creams that supposedly make you look fabulous, but they don't. Will resort to my own facelift soon that involves a reel of Sellotape. Haha. Keep well.

  • Creams only work in the long term (if they do), one week of them won't be enough. But rest assured, I use good face cream every morning and every night, pricey eye serum, you name it - still no change. I dread to think how I would look without using cream!

  • Thanks for the tip , won't bother with eye cream then !!!!! Lol x

  • hi purple top you have just discribed me to a T . I think it is all to do with medication. In 6yrs i have gone from 3 thyroxine to taking 20 pills a day.Take care.

  • You mean apart from messing with our insides? Argh, we can't win! Our poor bodies, no wonder they don't know whether they are coming or going. Imagine each pill we pop in our mouths having its own chemical pathway and carrying its own message, while the immune system trying to decipher everything at once and then acting on those probably conflicting messages. Must be chaos!

  • Too true Purpletop. I know what you mean as I have days when my skin just looks washed out/lifeless, particularly dark circles under the eyes. I swear by Rimmel under eye wand concealer. It's so cheap, easy to put on and is my little miracle cure on days like this (well every day actually lol) Sometimes I can tell when I've forgotten to take iron/vitamin supplements as I do have very low ferritin and maybe that impacts. Othertimes like you I feel like s*** as my body can be stiff and painful and people are saying to look well. I have developed a tried and tested sweet smile now where no words are necessary;)!

  • Good tip, I will try the Rimmel concealer. No need to ask whether they have different shades, if they have "washed out" one, that will do :)

  • Ha ha :) ......but seriously....it's my every morning 'must have'. Did try Yves St lauren touche eclait but that was too costly. Rimmel's is about £5 and lasts for months (well depending how bad the eyes are lol)!

  • Good point!

    My lupus treatment began 2.5 yrs ago, I'm responding well to hydroxy + amitryp. + myco, my bloods aren't bad and I feel better than I have since the 1970s (am 60 and have infant onset SLE that haha went untreated most of my life)...well, I can live with the level of pain & stiffness etc I have now....vs the levels I've "survived" for decades before this treatment

    AND: I think I look prematurely aged, especially my face & neck - v pale but with permanent blemishes of all sorts & loads of wrinkles, red eyes & periorbitals with rash & edema, dark circles etc etc. BUT people who have known me before my treatment began ALL say I'm looking GRRRRRREAT....I think: I must've looked REALLY dreadful for decades!

    I'm just thankful for dermalogica: I seem able to tolerate their skin products....great coverage...!

  • I have few ideas about why people say we look great: as an encouragement (even if it is a lie), from habit (airy things us girls say to one another when meeting after some time), they haven't seen us in a long time, so long that they've forgotten how we look, we used make up that covers the blemishes, or they don't know our faces as well as we do and are unable to see the difference, etc.

    I know what you mean about rapid ageing - I look at my hands and I cannot believe the change. I didn't have this before diagnosis, these meds have definitely affected that. And i am a lot more hydrated than I used to be, plus I use hand cream all the time.

    I'm hoping for a quick remission so I can stop all these drugs - don't we all!

  • Purpletop....I have just had that very discussion with my husband....that I long to stop the meds (today is a new hypertension diagnosis...hey ho!) When the rheumy said at the last appointments how her hands were straight (I wanted to say "But mine were two years ago too). I too think people say what they think we want to hear....and I often think this makes them feel better. It's easier than listening to a load of ailments that they don't want to hear and we wouldn't give anyway (because we are brave souls). I have always made a decision in life to mean it when I say "How are you"? ...and to actually wait for the response. I guess we can all be guilty of the "You look well" line. I never say it to lupie friends as I know the difference. I guess it would help if we didn't judge a book by it's cover....this condition has taught me that!

  • I actually find it difficult to not respond truthfully when asked how I am - I wish people wouldn't ask because if they do, I have to really control myself not to launch into a long list of things that are wrong with me at that time! Nowadays I only say "bit better, thank you" and leave it at that. But that's me, I'm an extrovert, if I hurt everyone hears about it, I'm all for sharing the burden, me :)

  • Ha ha, good thinking! I say, "I'm pretty good thanks". (very American) and if I'm feeling a bit wicked I add, "all things considered"

  • I might pinch that.....I do tell family but outsiders (mums at the school pick up when collecting grandson etc)...it's harder as I feel everyone has their own things going on so for the most part I try and keep it light. Some days its obvious so that's when I can use the 'weather' (if legs are stiff)...oh it's damp or got to avoid the sun (when hats on)..... Can't believe I now have these little conversations when before I would have been dash, dash, dash, and a million things to do (and did). My favourite saying at the moment to myself seems to be ....."It is what it is".

  • Hi! I was the same... But in my case I guess it was because of all the drugs, steroids and mycophenolate in particular. My skin got dry and suddenly full of lines and wrinkles, everyday was a bad hair day. I didn't sleep well so in the morning I looked like a zombie. When I was in the Switzerland for holiday a friend advised taking 'extra' strength vitamins and antioxidants... So after consulting with a doctor friend I started taking the vitamins religiously an that really helped... Now my skin and hair look great, but unfortunately I feel like c**p because of the recent lupus flare.. You can never have all in life!!! Uhh...

  • May I ask what vitamins you decided to take, please? I have the same thing with the hair and the poor sleep, let alone the skin.

    As for flares, I'm so confused by now as to whether I'm in a flare (symptoms never go away fully) that I take it as a given that lupus is active regardless. The day I start skipping, doing all my chores at full speed, go back into work full time, come home, cook dinner, wash up and still have energy to make sparkling conversation with hubby all evening without an ache in sight, or a hair falling, or a muscle twitching, or a word forgotten - THEN I will say I am not in a flare.

    Till then I will try to at least look my age (gave up on hoping to look younger already), so vitamins sound like a good start. And make up :)

  • Ha ha....I love this Purpletop. There was a time when if I say it myself (pre UCTD diagnosis) that I was lucky enough to look young'ish' for my age. Not true now I think...same here....skin very dry, dark lines under eyes, eyebrows need drawn in daily (as only have half of one on each eye)....sleep badly so have 'bed hair' a lot of mornings (thank god for pinning hair up in a ponytail (my one thing to still make me feel 'girlish' lol) Purpletop you described my symptoms to a tea too. I need, need need to get my middle landing tidied as the bedrooms need to look tip top as we are putting our house up for sale in a few weeks. We don;t need 5 bedrooms now the adult daughters have left home and my grandson. I always take things like this in my stride but today I'm out of spoons as we went out with my grandson yesterday to the Wensleydale Railway for a children's day out). I look on a flare as a real worsening of symptoms eg....more muscle weakness, stiffiness, pain in an area of torso be it chest, stomach, low back....more arthrites.....but like you say there is a level of this anyway at some point through the day or just the usual aches. I think we all need to give ourselves a HUGE pat on the back anyway for the way we can laugh about this. Although I use my rimmel touche eclait daily on my eyes.......I'm wise enough to know that this heart/brain of mine has a whole lot of love and empathy in it and a whole lot of wisdom. I'd like to think that I was like this before diagnosis....now I know the 'inner qualities' are much more genuine. We live and learn I guess.....what we get taken away in one hand we get back in another. (ooo all a bit philosophical I know lol)!

  • Talk about flare triggers - house move! All that packing, unpacking, arranging, organising, let alone the stress of conveyancing and estate agents - that's brave!

  • I know.....but needs must.....The two good monthly salaries have gone so in place has to come practical measures. This house has three lots of floors so it was planned for when I was healthy....and was a good investment. It has served it's purpose and now I think downsize, perhaps have no mortgage etc etc. It took me ages to get to this decision as until recently I have wanted to return to social work and kept this flicker of hope. However, after getting a bad flare up from working in a charity shop 4 hours a week (changing window dummys).....I have had to 'let go' of that plan (for now/perhaps forever. At 51 this is way too early for my liking. So house move it is. Hoping that if we choose right it will be our forever home and no more moves.....yay:)

  • This made be laugh artemis because it so depicts it how it is! I'm taking vitamin and iron daily too but I really think I need some pretty expensive skin care lol or even botox(only joking)!

  • I have been thinking of getting Botox in my forehead. I have a vertical canyon between my eyes that has gotten a lot worse in the last couple of years so my face is all scrunched up between my eyebrows. I get most of my headaches around my eyes which makes me scrunch more. I asked my Rheumi at last appointment about Botox because I heard it not only will make me gorgeous (miracles do happen) but also help with headaches. He said medically he had no issues with it and it was a personal decision - so I am going to start looking. I am getting so tired of looking at that old lady in the mirror every morning.

  • Good for you.....we need some before and after pics;) xx

  • I take supplements from LifePlus. Unfortunately they are not the cheapest but they are all natural and cobntain all kinds of plant extracts and stuff. I get them as a gift from my partner's mum and she buys a package that contains TVM Plus (vitamin/mineral/plant complex) and Proanthenols 100 (antioxidants). She buys them in Switzerland and sends them to me but yoyu can get them online in UK too lifeplus.com/uk-en/ I'm sure you can find something similar but cheaper, here is the composition lifeplus.com/media/pdf/piSh... They told me to take double the dose so thats what i'm doing... but again that's up to yourself and your doctor....

  • Many thanks, I will definitely have a look and discuss with consultant.

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