Will I always look like this ? : I’m struggling... - LUPUS UK

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Will I always look like this ?

Chaz1226 profile image
25 Replies

I’m struggling with symptoms today, anyone else look like me, what do you say when people ask what’s wrong with your face? How can I make it go away? Feeling terribly down and fatigued at the moment. Just needed to speak with others that understand how this feels xx

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Chaz1226 profile image
Chaz1226
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25 Replies
Apple68 profile image
Apple68

Hello Chaz,

You certainly look as though you are having a flare at the moment, it does make you feel rough and the tiredness always wears you down. What are you taking at the moment?

Can you ring your rheumatology nurse or your GP for some advice tomorrow?

Also you could ring your consultants secretary and ask to have any future appointments

moved forward, so your treatment could be reviewed. Try not to get depressed, if your friends ask whats wrong, simply tell them the truth.

You can also ask at a beauty counter for something to disguise your pink cheeks, that would make you feel better. Follow what your body tells you, and if you feel tired, have

a nap. Please keep us up to date on how you are, and best wishes for a restful christmas.

Chaz1226 profile image
Chaz1226 in reply to Apple68

Hi I haven’t been diagnosed I’m under investigation at the moment, taking paracetamol for migraines but that doesn’t seem to help.

A nap is also out of the question I’ve got three children six,1 and 11weeks old, I can’t wait to go to bed and recently I dread the alarm in the morning it’s hard no one around me understands how exhausted I really feel so it does get me down a lot. Best wishes to you also, il defo update with how the bloods are and no doubt post again soon as this forum is keeping me sane at the moment!x

in reply to Chaz1226

Hello Chaz, you have certainly got your hands full, can you ring your GP and ask for something stronger for your migraines as Paracetamol isn't very strong, Hope your bloods show some results, so you can start some treatment. Best wishes

Oshgosh profile image
Oshgosh in reply to Chaz1226

Perhaps aim for a nap when baby has one. Put something on tv for 1 year old. Worth a try.

eekt profile image
eekt

Hi Chaz1226, I remember your post from a few days ago saying you had a lot of bloods ordered by your GP, so you're still on the road to a diagnosis (some tests for SLE can take 3-4 weeks: but did your GP order the immunology panel? ANA kicks off the route to specific antibody tests for SLE)...there are things a GP could do in the meantime like a simple pee test (blood and/or protein might suggest SLE)...it can take a time to see a Rheumatologist who could prescribe treatment to reduce/prevent flares, including the malar rash, but if you're having increasing symptoms, maybe it could be an urgent appointment

It's so hard to explain how you look when you don't know yourself (been there), but saying: you're having investigations, it takes a while, it might be the same thing as Selena Gomez might help...especially as you're young and beautiful (didn't work for me 👹 🤣) xxx

Chaz1226 profile image
Chaz1226 in reply to eekt

Thankyou so much for your reply! I have an appointment on the 9th of Jan to review the results. I didn’t have ANA test which I thought was a bit odd I’m presuming my gp ordered the Lupus anticoagulant screen thinking that was to diagnose Lupus? Because she looked at my photos of my face and said “I’m going to test you for something called Lupus” I hope something pops up on my tests though I mean surley something would because I’ve never felt this unwell and struggling especially having three children I’m totally exhausted I’m not myself mood wise I just want to cry and I’m very irritable at the moment. It seems everyday it’s something new popping up like my mouth is sore I’ve also got a horrid migraine that paracetamol hasn’t t touched. Sorry I’m rambling and moaning these next few weeks can’t come quick enough! I felt really disheartened thinking I haven’t had the right tests done because I just need something ASAP to get me through the day most importantly my kids need me well!!

Haha the Selena Gomez thing made me chuckle I’m sure your beautiful defo very kind hearted I hope your well!x

KayHimm profile image
KayHimm in reply to Chaz1226

Chaz — I think it is really hard to be looking at your rash and waiting for the results of tests. Could you call your doctor tomorrow and ask if he could refer you to a dermatologist? It would be valuable information. Or could you ask for a topical cream? You can actually get steroid cream OTC but you should ask your doctor first. They don’t always like to use it on the face. Also, you need to get what tests were ordered clarified. It is unimaginable that your doctor did not order an ANA. Maybe it went to a different lab or something. He ordered more than the basic tests, likely because they were ruling out a clot. So I think your doctor is on top of things. You need to feel confident. Call tomorrow. Any medical professional will understand your fears since you were told you may have lupus. You are the most important person now. Take care. If you get nervous, message me. I am in a different time zone.

whisperit profile image
whisperit

Hello Chaz

There's not much worse than knowing there is something wrong but having to wait not just to get a treatment but even to find out what it might be. most peopole seem to find that a butterfly rash and Raynaud's will die down when a flare is controlled. Meantime, I'd agree with KayHimm that if you are feeling at all anxious, it's worth giving your surgery a ring to check exactly which blood results you are waiting for. If it doesn't include ANA, you might want to press for that. People here can give you some ideas on how to get round difficult GPs - we've all had to do it!

Fatigue must be the commonest symptom of most of these systemic autoimmune conditions. I can't suggest any solutions, only send much sympathy x

KayHimm profile image
KayHimm in reply to whisperit

Whisperit — I don’t think she will have to fight her GP for an ANA, do you? He already told her openly he was testing her for lupus, ruled out a clot, and tested for APS. I am betting the ANA is not showing up on her print out or it was a mistake. If he forgot to check the box, he will apologize and bring her back for more labs. I agree, this is a very scary time, not knowing what is wrong and what to expect each day.

whisperit profile image
whisperit in reply to KayHimm

I daresay you are right x

Chaz1226 profile image
Chaz1226 in reply to KayHimm

Is there a way I can attach a photo to show you both the forms of bloods?

KayHimm profile image
KayHimm in reply to Chaz1226

Take a picture and post. But, remember, it is still possible you are not seeing all of them.

Chaz1226 profile image
Chaz1226 in reply to whisperit

Thankyou so much. How long does a flare last will it go by itself?

whisperit profile image
whisperit in reply to Chaz1226

The flares come and go according to how active your autoimmune reaction is at the time. People often work out what tends to trigger a flare and avoid that trigger in future, but sometimes they seem to come from nowhere. Likewise, it's virtually impossible to predict how long they will last; it could be a day or two, or months long. But afaik, a butterfly rash doesn't generally leave scars or any permanent damage x

Jill41 profile image
Jill41

They usually do the Ana last if other tests point towards lupus, don't forget u can have positive Ana n it not be lupus and a negative doesn't mean u haven't got it,

Fezzywig profile image
Fezzywig

Oh my gosh, I don’t want to add anymore to your full plate but this may be the very best, if not the only chance you may get to have your doctor(s) full attention.. if you can, you need to ask to have your blood tested for any Primary Immune Diseases ( these will show up as immunoglobulins in your

bloodwork ) and at the same time they can check your blood to see if you have Epstein Barr Virus that is in an active state. Almost every adult does test positive for EPB but it becomes a big problem for people with compromised immune systems. Many of the symptoms are similar to Lupus, but you could easily have both problems going on at the same time. The fatigue is crippling. You, and anyone who has lived through this,

all deserve medals of some sort that’s for sure. I am so sorry that you are

experiencing these difficult symptoms without having answers yet. Hang in there girl, I promise you will get one in time. Continue to press your doctors and see if you can’t get another family member to help advocate on your behalf. That can really, really help since we are so often just out

of energy to do anything but the necessities. All of the best to you...

charmaineholmes profile image
charmaineholmes

Hi I have a butterfly rash which over the last 2 yrs got worse it can leave scars if it not sorted. Mine has been bad as they have been trying g all sorts of drugs but I keep reacting to had too many steriod cream so can't have anymore as skin thins .I would see GPS & get a cream asap.

Jhpc profile image
Jhpc

Hi Chaz, sorry to hear your going through a tough time can’t be easy also with three kids to manage as well.

I asked my specialist if there was anything I could use on my skin...he said foundation!!

I already use bare minerals make up which I put on every morning it instantly covers the redness which makes me look and feel better about myself.Its quick and so easy to use.

However it would be nice to wake up one morning and my face wasn’t red.

Hope this helps.

Nelly10 profile image
Nelly10

Hi Chaz, I have had ongoing skin problems for over a year now. I have discoid lupus and they leave large disc-shaped scars if I don't get treatment on time. I have actually turned up at my dermatologist and rheumatologist and refused to move until they have given me a prescription or an appointment for the next day. As for flares, I seem to have hardly any flare free days. I have, however, just started treatment, Dolquine (anti-malaria tablets) and I take Dacortin (Prednisona) which is a big help when I have really bad lesions.

It has taken me probably over a year to get treatment. Lots of blood tests which have always turned out negative for lupus but have shown up something untowards. I am going to see a kidney specialist and have more blood tests coming up.

Just so you know, I was originally diagnosed via a skin biopsy.

Hang on in there, I also have 3 kids and there are days when I despair.

Lupiknits profile image
Lupiknits

I’m sending you a hug because having three children and one only a tiny baby is exhausting in itself. I only had two and was well at the time x

Chaz after each of my 3 children were born I suffered alopecia, rhinitis, dizziness, facial rashes and other tell take signs of autoimmunity. I would be given courses of steroids to try and quell the flares without being tested for anything. Hormones and allergies were always blamed.

And I had never heard of Lupus or Sjögren’s or RA so had no idea to even ask. I felt as rotten as you describe and it was the impact of post childbirth/ post gestational hormonal changes plus sleepless nights of pregnancies and nursing little ones etc. But also I had undiagnosed Hypothyroidism and Sjögren’s - so i was a really compromised parent in hindsight.

You’re ahead of where I was in that the possibility of autoimmune diseases has at least occurred to your GP.

And I know it may feel like the world is crashing and burning around you right now but actually you have made a really positive first step. This next few weeks will give you a chance to read up and learn what to look for and how to understand and to make sense of your blood results when you get them (always ask for copies) so you can take some control.

What I wonder is whether you could get an urgent GP appointment and explain how bad things are just now and tell them with complete honesty that you have looked at Lupus UK information and have a feeling that the blood tests required for testing are different to the ones taken.

I don’t see how this can harm as your GP, although clearly on the right track mentioning Lupus - has missed out one of the key tests - the ANA.

If they can reassure you that this was in fact taken then that will set your mind at ease more. If not then they can order it as well. Maybe you could get a phone consultation if there are no appointments?

I was 3 years diagnosed with RA before my ANA was actually taken! I arrived one day to see my GP and request that they see my facial rash and test my ANA please - but I was already on Methotrexate and Hydroxichloraquine so these got the blame. She looked through my records and couldn’t find ANA at all - only the RA tests which my rheum has ordered. She took it and it was equivocal.

Other times when I felt like you did I was given courses of oral steroids and they helped me loads. This might be helpful to you over Christmas and New Year? But what I know now is to get your ANA checked before taking oral steroids. And avoid anti inflammatories such as ibuprofen up to 2 or 3 days prior to testing and appointments as they skew the blood results and mask the swelling.

Paracetamol is fine it’s just the NSAID and steroid family you need to be careful with and always ask for stomach protection eg omaparazole to take with them otherwise.

I spent six months on max Ibuprofen without being offered any stomach protection and am still paying the price now 8 years later.

As Whisperit says you’re really at the worst stage with all that uncertainty brings - plus newborn and 3 little ones to cope with. Hang in there and try to speak to the GP before Christmas if you can! X

honeybug profile image
honeybug in reply to

Xxx great reply TT👏👏

Sara_A profile image
Sara_A

I try to use foundation and powder and have found that magic minerals powder quite good.

I too have young children and have massively struggled for definitely the last 2.5 years ( tho I have had lupus and aps for about 20 yrs now am 39).

My daughter was born 2.5 yrs ago and I have not really stopped flaring since her birth! So I have a 2.5yr old and a just 6 yr old.

The fatigue is just the worst thing ever!! And not being able to just sleep and lay down when u need to is just sooo difficult and nobody understands! I know I’m not in the exact same position but I did had a 3 yr old and a newborn at the same time as a massive flare and it’s continued for 2.5 yrs and I also had another flare from the sun when we went on hol in the summer too!!

It’s very hard if u need to moan or chat pls message as I’m sure I’ve felt like u at some point!

I go to bed at 7 when the kids do and my life is all about feeling crap, tired and taking meds basically!

Where about sin the country are u?

Keep going I know it’s hard pls believe me! Do u have a supportive and understanding husband/partner??

X

Sara_A profile image
Sara_A

Ps And no, ur rash may fade too and if it is lupus u are found to have then there is every chance that they may get u on medication that u espond well to and controls ur condition thus reducing ur symptoms ie rash

Lisalou19 profile image
Lisalou19

With 3 children and dealing with this, I feel your pain and admire you for keep on going. It’s so tough. I get extremely irritable when I’m feeling unwell, I don’t quite know if the illness causes an imbalance in the brain or I get irritable because I feel so rubbish. I do know my children get the brunt of it.

For me child birth has certainly caused me to become unwell, even more so since my 3rd child was born . Not sure if you can relate to this.

I hope you don’t suffer for too long , as you say your children need you well x

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