Trying to get used to this lupus thing.

[DemetriaLigon]

Hi, my name is Demetria I am 18 years old.I was diagnosed with lupus around September of 2015. Truthfully, it has not been easy to deal with, especially founding that I had in the beginning of my senior year in high school. It has caused me to become very depressed, very weak feeling, and my anxiety level to elevate. I normally don't like expressing how I feel to others, but I feel it's time to talk about it, since it's something I would probably have to deal with for the rest of my life.

[yakamalayo]

My daughter got diagnosed with lupus when she was 17 (she's 19 now). To start with it was really hard for her, but once she got on top of the symptoms using a combination of medication (hydroxychloroquine plus the occasional steroid jab) and a 'clean' diet (gluten free, dairy free, refined sugar free) she has been fine and her mood is completely back to where it used to be. It might sound crazy to some people (and sort of to me as well) but she has actually said she is grateful she has Lupus as it makes her much more able to understand and empathise with other people with problems in their lives, in a way that she didn't previously. She has had to make adjustments to the way she lives and some of her future plans, but she is completely happy with her life and for the most part, her disease has a pretty minimal impact, although sometimes the monster wakes up and reminds us that it's still there.

What I find extraordinary is just how many teenagers and young people now seem to have life changing conditions, whether they are physical or mental - mental health issues having just as much impact on people's lives as physical ones. I don't believe they were anything like as prevalent 'in my day' (and I'm only in my '50s). Being completely healthy in both body and mind seems to be the exception these days! Or maybe I'm just super aware of it, but chronic disease and/or mental health issues amongst young people seems to be very commonplace.

Sorry, that last bit probably wasn't particularly useful for you (just an observation), but I wanted to share my daughter's experience as hopefully a positive example of when things (touch wood) aren't as bad as we at first fear, and may even have positive elements.

Best of luck!!!!

[DemetriaLigon in reply to yakamalayo]

Thanks so much for sharing that with me, that was truly helpful... I wish your daughter the very best as well🙂

[EOLHPC]

Hello Demetria

I think those are great observations from yakamalayo. My version of early onset lupus (I was diagnosed as an infant) must've been relatively cooperative & mild because my mother & Drs managed to keep it secret from me...I knew I was highly reactive in many ways all over my bod, and that I got sick more often than all the other kids I knew & had to take weird meds, but I thought I was just a bit odd. Yes, it was v tough at times, but I told myself that others around me were having it tough in other ways. And this thought gave me strength. Also, I liked a good laugh & used to crack jokes, eg about my rashes looking like the bumpy bits on topographical maps...how woozy drunk my fevers made me feel etc etc...lupus usually can be relapsing and remitting, like MS & other autoimmune conditions, and I'm sure that when I was younger, and my lupus-related cumulative multi system damage relatively low, this relapsing/remitting characteristic helped me tough my version of lupus out

So, I can very much relate to your reply! Now I'm 62. My medical records got left behind & became lost when I moved from the US to the UK in 1978. 5-6 years ago, in my mid 50s, the NHS finally figured out lupus has been underlying all my many multisystem conditions and debilitation. Lupus meds are helping me feel better than I have since my 20s. My mother is 94 and has been able to fill us in on the story of my early lupus diagnosis & treatments...am so glad she has fessed up...am of 2 minds about whether I wish the NHS & I had known earlier about my lupus

I agree that there seem to be more young people with lupus now, but even so I wonder if continuing lack of lupus awareness amongst GPs & parents & school staff means only the more severe manifestations of early onset lupus are diagnosed? My lupus is partly down to genetics (autoimmune conditions in my family) but also due to months of daily inutero exposure to the notorious endocrine disrupting artificial oestrogen DES. My instinct is that as time has passed more of us are exposed inutero + after birth to dodgy environmental elements like DES...this exposure, + modern medicine continuing to allow the survival of generations with chronic autoimmune conditions, affects our immune systems enough to disrupt them + result in a higher population % with immune dysfunctions. The wonderful thing is that younger patients with lupus & other autoimmune illnesses can now benefit from more skilled experts & more effective treatment plans...if they can just get the right referrals. I think the time is right and we will all see continuing great steps forward in understanding immune dysfunction

So, take heart, demetria: it is VVV tough, but, like me, you can have a full life with much happiness: I got 2 degrees, enjoyed an exciting career, travelled and found the perfect life-partner. So, hang in there & keep your funny bone healthy. And always feel free to let others know how you're managing....especially when things are rough. Am so glad you're here on forum: means a lot to me: you help me understand what it's like to cope with lupus as a younger person

Apologies for the long reply...but this subject is close to my heart. Am off to lupus & Vasculitis clinic early this morning...feeling thoughtful

🍀🍀🍀🍀 coco

[yakamalayo in reply to EOLHPC]

Lovely to hear your reply Barnclown, especially the bit about your full life and much happiness! Hearing positive stories is soooo important.

[EOLHPC in reply to yakamalayo]

👌👍✌️😘🍀

[misty14]

Hi demetria

Welcome to the community. Having a lupus diagnosis is tough any time but is particularly so when your young and trying to make a life for yourself. You need time to process it all and with the right treatment you could be 'flying ' very soon!. There is a young Lupus Group for teenagers that Paul at Lupus Uk could give you details of if you'd like?.

Ask anything you want on here and keep us posted how your getting on. Good luck.X

[Paul_Howard Partner LUPUS UK]

Hi Demetria,

Welcome to our community. I'm sure that you'll find it a useful resource for information and support. Have you discussed your depression and anxiety with your doctor? If not it might be a good idea to do this to see if there is any additional support they can offer.

If you would like more information about lupus we have a wide range of publications which you can view and download from our website at lupusuk.org.uk/publications/

[Roanna]

Demetria, there are a few of us who were diagnosed around the same age and once your illness is under control and you get in your special structured routine in life, things balance out and your able to see yourself succeed. It isn't easy but don't let it control you, challenge yourself, your body will tell you if you've done too much. Go for your goals as everyone else, you just have to be more realistic and get career counseling to help determine if it is a good fit. I had a 20 year career in the dental field and when I was first diagnosed in 1985, my specialists told me I would never use my hands again, proved him wrong :). Today though my fingers do get stiff a lot but I had a great run at it and a lot of fun in between. My illness never slows me down, I don't even have the same fatigue and pains I use to get when diagnosed long ago. The odd flare, but that's just a minor bump. This illness will never control me, I have a say in this and I don't go down easily. I live one day at a time but to the most part I love who I am and what I am and lupus was a big factor for this.

Be strong and honest with yourself and keep up with this site as they are VERY supportive when sometimes those around you aren't.

good luck

[Charlottelauren]

Hi demetria! I'm around a similar age to you and also have lupus, was diagnosed about a year ago now. If you want to talk feel free to message me x

[MelbourneLupie]

Hi All

Sorry to know your condition Demetria...Hope you get better. I am a newbie to Lupus and this site....

What wonderful posts from Yokomalayo, Barnclown and Roanna...   So many positive messages.... I will appreciate all the help and discard negative thoughts......My Lupus issues are terrible Skin itchiness and Photosensitivity (sun and heat).

I have had this intensive itchiness and scratchiness on the skin for the past six months....absolutely terrible.... Antihistamines (Zyrtec and Telfast are of No effect)....No relief. 

Have applied cortcosteroid creams, dermeeze ointments, QV creams etc but to nil effect. In fact the ointment makes it more lubricaed and more itchy... at my wits end.... 

Last week they did a biopsy and results are I have SCLE (sub acute Lupus). All blood, liver and kidney functions are normal levels at this stage. Have a boil on the surface of the nose tip - some 1 cm from bottom of nose upwards - dead in the middle.... which comes and goes (now has come and gone twice). I have undergone Patch-allergy testing for some 100+ items and that has come negative ie all clear. I have had mild neutropenia in my blood tests for last 25+ years and had Shingles now some 15 years ago - but fully recovered.   

I am on my second stint of prednisone - first one was in early Feb for a week and now in April for a week......First time my itchiness did not subside......Second time now is more effective.....Not done prednisone for more than 6 days at a time. 

I am NOT on any regular medications. Have stopped my fish oils, glucosamine and magnesium tablets.

I have been seen by 3 dermatologists. The last one has prescribed 200mg hydroxychloroquine. Initially 1 tab for 4 weeks and then 2x200 mg for afterwards. 

Do you think the 2x 200mg hydroxychloroquine will help? In addition do I need to see a Rheumatologist? 

I can see it is going to be worse from here and all down hill. I have been a fairly active person, am now 60 years old and have had no other health issues. 

The Sun appears to be biggest enemy. Just cant go out in the Sun even 2 minutes, back, neck, arms face burn....Also cannot have warm or hot shower.

Sorry to unload......Hope by some miracle you get better.......Thanks again. I want to be positive and do the right things when I am still a baby in this unwanted experience......

[minka]

not nessaserly true i have had it 4 times each time worse than the other THIS THING CAN LEAVE AS SOON AS ITS COME belive me i got 15 years free the first time then 8 years then 3 years.

when you can do exersise do it light walking rest when you r feeling it would be to much

dont just think thats it i got it fo ever you r young enough to make a recovery.