Scared 😔

Hi everyone I just got told that I tested positive for ana and that it had a homogeneous pattern. That we going do more blood test to figure it out. And I'm just sacred I'm 23 years old I really don't know much about it. I don't have any symtomys just muscle pain but idk if that's from my cholesterol meds. Is there hope for lupus is the outcome good?

[Hidden]

It gets less scary. Promise

[Hidden in reply to Hidden]

When did you start to be less scared

[Hidden in reply to Hidden]

When the pain went away

[Hidden in reply to Hidden]

It let me know the doctor was right

[Hidden in reply to Hidden]

So the pain does go away ?

[Hidden in reply to Hidden]

It does. With some flare ups

[Hidden in reply to Hidden]

You’re strong enough

[Hidden in reply to Hidden]

Thank you I keep trying to tell myself that. I'm just scared of the unknown or what's going to happen to me next

[Hidden in reply to Hidden]

The unknown is scary. And it sounds like a lot. The burden goes away quickly. And when you can’t be tough others can be tough for you

[SHEILWEIL in reply to Hidden]

Good question!! With the merry go round of symptoms for me it's been 18 yes and I end up treating half at home, but something new always starts. It's only not scary if you're in remission

[Goinglong10 in reply to Hidden]

Hi Dear One,

It is scary at first. But, it does become less scary as you become more aware and educated about your condition. The greatest thing that helped me is these forums where people give real life experiences. Then you know that you are not alone. These forums are sometimes the only good news available. Doctors only spend so much time with you and family and friends get tired of hearing IT. They do now know all that you are going through. So, I say see what others are saying and hang in there.

[misty14]

Hi melimel

I'd just like to reassure you that with a diagnosis of one of these immune illnesses , the outcome is good with the right treatment and some lifestyle adjustments. No reason you can't live a very normal life . I know it must seem overwhelming specially as your young but with a positive ANA it means your one step closer to treatment and feeling better Iit's better to have an answer than be having to fight doctors for recognition because your suffering!. If it turns out you have lupus then find out as much as you can from lupus uk. They have lots of booklets and a comprehensive website. They also run a young group where you can meet fellow young sufferers. You could always email Paul Howard for more info about it if your interested. Also look out for Lou lamb's posts on here, she's young like you so you might like to chat.

Your young to be on cholesterol meds . Is their a family problem with this?. Keep posting on here as we're a friendly bunch happy to answer any questions if we can.We've been there and got the T- shirt!. Keep us posted about your blood resiults. There more specialised tests to determine which immune illness you may have. Good luck. X

[AmyKG]

Hi Melimel1312,

I completely understand how you are feeling, I'm also 23 and was diagnosed with SLE 4 months ago and what I can tell you is it does get better. It is hard at first, so much information, so many changes in your body and mind, all while you feel like utter crap. Honestly, the thing that's helped me the most is talking about how I feel to family, friends and on this forum. Don't let fear and the thoughts of what's going to happen consume you but do make an effort to find out as much as you can about how others cope and what you can do to help yourself.

I'm always here if you have any questions or just need to chat and let it all out.

All the best x

[SHEILWEIL in reply to AmyKG]

My youngest daughter is 25 and out of 4 she is suffering terribly with neck, joint, muscle pain and severe fatigue. She's at the point where the Drs. Don't know exactly what it is and she's eating well. We've both found that going gluten free has helped with the joint and muscle pain!

I'm so sorry that you young girls are suffering so!

[AmyKG in reply to SHEILWEIL]

Thanks very much for the advice, I have been adjusting to dietary changes over the past few weeks and it seems to be going really well, plenty of fruit and veg and less red meats and processed foods! Will definitely try and fit in some gluten free recipes too!

Thanks for your concern, it does get bad but we are fighters and I'm slowly learning to control and own my illness and not let it own me. Positive vibes x

[AmyKG in reply to AmyKG]

I hope your daughter is okay by the way, send her my best wishes and know that she's not alone x

[katidid]

Agreed with most above. Listen to your doctors and learn what you can while trying not to overthink it. My first 6 months I was panicked and anxious and sad. It got better after that as we tried more treatments and we learned more about living with it. There is no cure and each person’s experience is different, but most will live and it’s more about making sure your taking care of yourself to feel the best you can. Lots of good resources and people out there, so keep reaching out. It will get better!

[LalSD]

Melimel1312,

Me, 44 years old and my 22 year old daughter have SLE. I have it over 12 years, my daughter for 3 years. If you rest and eat well, stay away from stress, sun light its a step closer to be well. Take it day by day. Lupus can go on remission for years. Please dont be scared, you will get better. It is important to have support around you. If you have family, please ask them to help you with responsibilities. Resting and eating fresh is. Step vloser to being well. Hope you get better soon. By the was, i had positive ana fir over 5 years now. Although it id different for everyone, i try not to let Lupi get me. It has my body but not my mind and soul! With love,

[Chanpreet_Walia LUPUS UK]

Hi,

We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. You can download or request our pack here: lupusuk.org.uk/request-info...

Joint/muscle aches and pains are common symptoms associated with lupus, we published a factsheet on ‘LUPUS: The Joints and Muscles’ which you can read here: lupusuk.org.uk/wp-content/u...

We published an article on our blog about ‘pain management’ which you may like to read here: lupusuk.org.uk/pain-managem...

According to The Lupus Encyclopedia, people who have SLE tend to have a normal or near-normal life expectancy these days, as doctors are able to diagnose lupus at an earlier stage. To get a better understanding of lupus, you may like to read our factsheet ‘LUPUS: Incidence within the Community’ here: lupusuk.org.uk/wp-content/u...

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