Worried for my 19 year old daughter!

[Nokuse]

I have SLE and was diagnosed in 2001 although I had been experiencing symptoms since 1991.

My Aunty had rheumatoid arthritis and my father had raynauds syndrome.

My daughter has IBS and I have suspected, Lupus for a while due to some mild symptoms. She had an ANA Test done which was negative and a blood test which looked at her immune system which showed that her immune system was very low/compromised. I don’t know what this test was called.

Anyway, on Friday morning she woke up with her eyelids swollen. Later that day I came back from work and she then complained that her knees hurt and felt hot and swollen. Advised by NHS helpline to go to A&E as Dr surgery closed. Advised to see GP when open and take pain killers.

As soon as we arrived home, her eyelids swelled again and her lips also. She then started to develop a hive nettle rash all over her arms face and upper body. At this point I gave her some anti allergy meds. Put her to bed as she had been complaining of feeling poorly and very tired and checked every so often to make sure there her young ue throat wasn’t swelling.

She woke the next morning saying that her wrists were painful. After phoning the NHS helpline again we were advised to go back to the hospital for an appointment. This was yesterday - Saturday. They were concerned due to the family history and symptoms that she presented with that this was a systemic response but were unable to do any bloods as they couldn’t access her medical records. Advice was to see GP urgently when next open to get bloods done and an urgent referral to rheumatologist.

She has woken up this morning with more strange rashes on her face and limbs and also now saying that her feet and hands are also really painful and are visibly swollen!

She is in a gap year after completing her Alevels last July where she got A*, A and a B. She has worked through this year and re doing her B grade as not happy with it!

She is stressed to the max and each day over this weekend, I have watched her deteriorate.

Other background info is that her sister has hypothyroidism, her brother is diabetic and her father, my husband passed three years ago from cancer.

I am really worried about her. Anyone have advice on someone her age developing these symptoms so quickly??

Thank you!

[elizaSunflower]

My situation is a bit different from your daughter's; I'm much older than her. But I know that for me stress is my biggest trigger. I left school for a long time partly because of non specific health issues. I went back as a middle aged mom, and I can say that the stress from school brings on flares faster than anything else. I'm in the US so the school system is a little different. I am currently finishing up a Master's degree in physics, but I would never have gotten this far if I hadn't learned to give myself permission to fail.

I agree that your daughter needs to see a rheumatologist (hopefully while she is still going through all of this). I hope she can figure out how to ease her stress level. Good luck to you both.

[Chanpreet_Walia LUPUS UK]

Hi Nokuse,

Has your daughter had any luck in getting an appointment with her GP?

We offer a free information pack which discusses the symptoms and diagnosis of lupus which you can download or request on behalf of your daughter here: lupusuk.org.uk/request-info...

To read about the specific tests and criteria that are needed in order to make a diagnosis of lupus, click here: lupusuk.org.uk/getting-diag...

According to The Lupus Encyclopedia, hives can occur in people who have SLE due to inflammation caused by lupus itself. It can also be caused by a person being exposed to something he/she is allergic to. The encyclopedia states that hives improve when the systemic inflammation of SLE is treated for example with steroids. To read our booklet on lupus and the skin, click here: lupusuk.org.uk/wp-content/u...

Do you know if your daughter experiences any light sensitivity? Being sensitive to UV light is common in people with lupus. Sunlight can cause people to experience skin rashes, joint pains, nausea and migraines. To read our blog article on ‘coping with light sensitivity’, click here: lupusuk.org.uk/coping-with-...

Stress is an important trigger of lupus, stress can cause people with lupus to bring on flares. We published an article on our blog about stress management and relaxation which I hope you and your daughter will find useful: lupusuk.org.uk/stress-manag...

It is important to remember that lupus presents differently in each individual therefore, no two people will share the exact same experience.

Please keep us updated, wishing you and your daughter all the best.

[Nokuse in reply to Chanpreet_Walia]

Hello.

Thank you for your reply.

My daughter seems to be improving but we are still trying to get an appointment with her GP. Booked appointments are not available for three weeks and there were no emergency appointments available today!!

As well as the hives she also developed strange rashes over her body different from day to day.

She does experience light sensitivity and has done since a baby.

I will down load all the info.

Thank you for your help. x

[Chanpreet_Walia LUPUS UK in reply to Nokuse]

Hi Nokuse,

You're most welcome. I am glad to hear there has been some improvement in your daughter's health.

Please let us know how she gets on after getting an appointment.

[Nokuse in reply to Chanpreet_Walia]

Will do. Thanks!