Naomi: I've just been diagnosed with systemic lupus... - LUPUS UK

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Naomi

Naomi72 profile image
14 Replies

I've just been diagnosed with systemic lupus and am 44 years old. It all started with terrible aching in both muscles and joints and as quick as it came it would go to another part of my body. Skin was bad too and a terrible corn beef looking rash on my legs and arms. Having lots of tests to make sure it hasn't effected any other parts of my body. Just developed s terrible tickle cough and sore throats nothing else just those but my work colleague has a terrible cold so hope it's just that. Always feel tired too xxx

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Naomi72
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14 Replies
misty14 profile image
misty14

Hi Naomi

Welcome to the forum, hope you enjoy being here. Had you been ill a long time?. Having a diagnosis of lupus is a big thing to adjust to do take your time!. Lots of TLC, specially as your unwell. Have you been put on any treatment?. Hopefully that will start to work soon to help you. We are the same age so I know how you feel!.

Take CareX

Naomi72 profile image
Naomi72 in reply tomisty14

I'm on hydroxychloroquine for nearly 2 months my. CoNsultant told me it would take 2 months to get into my system xxx it's just this terrible dry. Cough is wearing me down 🤕xxx

misty14 profile image
misty14 in reply toNaomi72

Hi Naomi

Have you had cough checked by GP?. Might be good idea to. X

Naomi72 profile image
Naomi72 in reply tomisty14

I'm going to call my consultant on Monday as the doctor likes me to go straight there now she is very good and lupus is her field xx

misty14 profile image
misty14 in reply toNaomi72

Great plan Naomi. Good luck. Let us know how you get on. Glad you have a good Consultant. X

Naomi72 profile image
Naomi72 in reply tomisty14

So I had a terrible chest infection and now I have some antibiotics thank goodness 😅 I might actually get som sleep tonight xx thankyou for all your kind words xxx

misty14 profile image
misty14 in reply toNaomi72

Hi Naomi

Thank goodness you have the right treatment now. Hope you feel better soon. Glad to help.x

Shaysuekirk profile image
Shaysuekirk in reply toNaomi72

It really took mine 4 months to really make a big difference. It was very gradual until then. Hang in there!

Wendy39 profile image
Wendy39

Hello and welcome. It's a shame we all meet under such sad circumstances but since my diagnosis this site has been my life line. The people here are wonderfully supportive and will help in any way they can. Lupus can be a lonely place, so this is where I come when I need to feel understood.

Joyandsleep profile image
Joyandsleep

Welcome to the world of rest and roaming pain. I was about your age when I ask my friend if everyone our age had constant pain. She looked at me surprised and said,"NO" off to the doctors and a year later they figured it out by checking me for RA. You can live an average life span until its your time to pass to the next life.

Lucy_31 profile image
Lucy_31

Hello - stay positive and talking to people really helps. Hope it didn't take too long to diagnose. Sounds like you have a fantastic consultant which is always fab. If you have any questions happy to help/listen. I was diagnosed with Lupus at the age of 15. I haven't let it stop me doing anything for the last 15 years and i don't intend to in the future. I just ensure I know when to rest and in planning what I want to do make sure I have time to chill. Take care x

Welcome, Make sure you pace yourself. Do things in small bursts if you have to. And use pain meds before hand. Keep us posted, always someone ready to listen.

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Naomi72,

Welcome to the LUPUS UK HealthUnlocked Community!

Joint/muscles aches and pains as well as skin rashes are two common symptoms that are associated with lupus. We published a guide called ‘Lupus and the Skin’ which explains the different types of rashes that can occur when a person has lupus and the treatments available for the rashes which you can read here: lupusuk.org.uk/wp-content/u...

Flu-like symptoms can be associated with lupus however this varies from person to person as no two people have the exact same symptoms. Extreme fatigue is a major symptom of lupus, we published a blog article early last year on ways in which you can manage fatigue which I hope will be of help to you: lupusuk.org.uk/managing-fat...

Wishing you all the best, let us know how you get on.

slcoppedge profile image
slcoppedge in reply toChanpreet_Walia

I don’t get it. I keep saying I exhibit all the symptoms of Lupus, just not diagnosed. The more I read, the more it seems true. Just in the last 10 minutes here, I have read about tongue ulcers (I have always got a lot), extreme fatigue, sun sensitivity, and I always explain how I feel as “Imagine ALWAYS having the flu.”

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