I am a 30 year old female lupus is killing me softly I can't be a mom or wife I'm giving up

[Saralupuslife]

Stress pain and lupus is taking over my life my doctor s all suck and I'm in pain so much pain

[diane1428]

Never give up. It's hard, we all know that. It's painful and demoralizing and sh**** (sorry no other way to say it) but it will get easier.

If you have children what a blessing. The doctors on the whole don't really understand stand lupus. Do you have a good rheumatologist? What meds are you on.

We have all been through it one day at a time. Focus on what's good in your in life such as children, your partner, family.

The pain is awful and so is the depression. Meds will help, go to the docs.

Please don't give up we are all relying and willing you to pull through. Lupus is hard and if just one of us gives in we will all feel the ripples. We are part of your lupus family and will help you all we can. You are not alone .

Diane😜😜😜

[Saralupuslife in reply to diane1428]

Thank you

[Genesid in reply to diane1428]

I have no idea what you're going through. Keep the right attitude, positive . you will pull thru

[Penelope-Mary]

No giving up Sara ! You've made an effort to post, excellent!

One 🐾 at a time. It IS awful being in pain, it can be soul destroying but don't let lupus take over.

Do something right now that puts you in a happy place. Your happy place, and tell yourself it will get better.

Hugs

PM

🌾🌾

[creaky]

Please don't give up, have you tried setting mini goals, and celebrating tiny victories!

I once awarded myself a gold star, for managing to cut my toenails, after putting it off for weeks due to pain.

There are lots of people here who can testify to that awful overwhelming feeling, but lots will also tell you that things can improve once you get the right help.

If your doctors are stuck, you may need different doctors, I found it very difficult to have the courage to say this and move on, but I'm so glad now that I did.

Now, even on the darker days, I search for something positive, and write it down, I find keeping a journal helps me to see the big picture.

Good luck, I do hope that you find some help 🍀

[tired18]

Hi, being in constant pain is very difficult, it's hard to talk about it as you don't want to feel like a burden. So we bottle it up and it eats away from inside. If you are feeling so low, talk to the Samaritans it's a UK based charity who listen and don't judge, plus it's totally confidential

You can contact them on

[e-mail]

Hope it helps you

[Greentea4]

Please do not give up. All of us , your Lupie friends we are here . Ready to listen , give advice, or try to at least. You can read some of our stories. It really does help. Write down little things you are grateful for. Any little thing , you will be suprised how fast the list grows.. I will pray for you, I am sure things will look up for you.

Good night, God Bless you,

Marianna ✨🙏✨ 😴💤💤

[Saintsmad]

Stay strong. A day at a time or even an hour at a time. Celebrate little victories and rejoice in golden moments. I am new to all this and the support from here is amazing. Thinking of you

Loraine

[linda96]

Why can't you have children? Iv had 2 with admittedly undiagnosed lupus. Don't pigeon-hole yourself into what you can and can't do. It's tough but I'm doing hydrotherapy and tai chi both very good for taking you mind off things and for helping with pain relief. I have severe photosensitivity but still get out in the evening when I want to. Change your hobbies, have a structured day as much as possible and ...

Go for all the positives!!!

You have to sort your life to suit you and accommodate days when you aren't feeling so well. But don't give up.

I think of it as being like a brick wall, I used to be a brick but now I'm the concrete inbetween, avoiding the hard bits and going round and finding a new place to be.

Okay, okay I'm cracking up!!

[Shadows-walker]

Never give up ! I was told at 17 back in the late 70 I shouldn't have children , I went to find out why my hair was falling out , this poor consultant wanted to speak to a parent as he could see I didn't understand what he was telling me ! I told him there was no one he could speak to , my dad who raised me was sitting in waiting room but I had always done Drs things on my own since I was much younger , he gave me tablets and said I would need to take them for the rest of life ! And that would help my hair , that's all that worried me , not babies why would a 17 year old virgin be worried about having babies , Anyway at the age off 22 I moved and got married all the Drs letters were thrown away at the new practice by a failed dr who hadn't passed his medical exams and was the practice manager for his brother , I went on to have 3 children , I have been a wife now divorced, I am not telling you to be stupid like me , but know I have problems I always have had health issues but because those letters were thrown away , new Drs didn't make the connection lupus rashes were chicken pox , pysriosis ,or exerma , fatigue put down to depression , pain in my body in wrists face etc , all in my mind , dislocations of toes on regular bases me being clumsy , I have muddled through ! And now at 54 I am having problems quite serious ones I suppose, can't work need a wheelchair, my body is worn out , my children have been my life , listen to your Drs and make informed choices ! That's the best advice I can share with you ! Not blind ones like me , but don't give up on having children , and being a wife is not all its cracked out to be ! And you don't need a piece of paper to prove you are loved , love comes in many forms , I hope you are ok today , and the sun is shining with you , even if you can't cope with going out in it you can still enjoy the warmth that comes with it that eases the bones , gentle hugs my young friend ! Don't give up please , and there are a lot of children out there that need loving parents , maybe one or two of them are meant to be your babies !

Be kind and gentle with yourself !

Shadow xxx

[Lupiknits]

Please don't give up, please, please, please. Get another doctor, see the GP, tell them exactly how you feel, ring the Samaritans (I have done this several times and they are wonderful). I've had the tremendous pain at times which does take over your life, and, somehow I'm here. Now we are all here for you xxxx

[Tiras]

Never Give Up!

We with Lupus go throug a lot I will admit.

Look at any of the home pages of anyone who has replied. We have and are gong throug tough times.

Me for example, I have a rash on my right foot, it has been there for 2 years. I have had to be barefoot for 2 years, did I give up? No, I've learned to live with it and actually feel better that I don't wear shoes. I have gone barefoot for so long now I don't want to wear shoes. I now love going barefoot. It turned out to be a blessing in disguise! If I'm out in the sun I know I will pay for it with rashes/blisters joint pain, but, that does not stop me from doing what I want and live to do!

Just REMEMBER that every thing happens for a reason.

I for one will not let lupus or any other of my medical issues take the fun out of live.

LIVE LIFE TO IT'S FULLEST!

Tiras

"The Barefoot Gardener"

[Paul_Howard Partner LUPUS UK]

Hi Saralupuslife ,

I'm sorry to hear that you are in a lot of pain at the moment and that your mood is very low. It can be incredibly difficult if you don't have any faith in your doctors, who you rely on for help and support with these difficulties.

Please do not give up. If you are unhappy with your doctors, I would recommend that you take action to change to different ones so that you can feel listened to and perhaps have your treatment regimen adequately adjusted. I'm afraid that because you are based in the US, I don't have any recommended specialists for you, but I am sure that if you contact the Lupus Foundation of America, they will be able to help you - lupus.org

Is there a specific reason that you have been told you are unable to be a mom? In the past 10-15 years the outcome of pregnancies in lupus has improved a lot and many people can now have safe and successful pregnancies. You can read more in our booklet here - lupusuk.org.uk/wp-content/u...

If you are having thoughts about suicide please speak to a loved one, your doctor or contact the Suicide Prevention line at suicidepreventionlifeline.org/ or call 1-800-273-TALK (8255).

[cinlee57]

I don't know if this can help anyone but thought it might. I used to take a lot of Wellbutrin for years and then found out that this can cause painful muscles so I weened off it and the pain subsided enormously so check your other meds like antidepressants which a lot of us take

[Patricia2015]

Dear Sara,

We are here to listen to you and to offer our experiences.

We all have been through tough times when it seems there is only one solution left.

Looking backwards we realize we had more reasons to live. At your deepest moment you cannot see those reasons anymore.

We are here to tell you there are reasons to live and to love life even if there is agony and pain in it. Maybe you don't see the reasons today but you will see them tomorrow.

Believe in your strength, we believe in ours and in yours!

[Zoezoe752]

Hi Hun I am a mam of a nearly 2 yo and I feel ur pain. I have just been finished from work as something had to give the pain is bad but u jst have to think of the positives in your life and try not to get hung up on your limitations. I find if I try and acomplish 1 thing a day that's enough and if I do more great but I try not to feel like a failure all the time. My daughter gets the most of me and if anything left I do a bit cleaning and then crafting. I hope ur ok Hun it's so hard and as we look well people don't understand I had my partners gran spend an hour telling me I was a picture of health and enjoy being young and pain free and full of energy I didn't have the heart to tell her I can do less than her on a gd day x

[Saralupuslife in reply to Zoezoe752]

Thank you I am trying my best

[Tiras in reply to Saralupuslife]

I am in the U.S. I live in Alabama. Where are you from? Send me a private message I will send you my phone number if you need someone to talk to who knows what it is like to have Lupus. (The pain, rashes, Sun sensitivity) I am a guy so, some things I may not know about on the female side, but, with Lupus they are a lot of common denominators.

Again and I know for a fact, everyone that has replied will help you any way we can. If you need just to vent, we are here. You need someone to scream at we are here. We all really do know what is like. We've been there.

Thinking & Praying for you!

Tiras

"The Barefoot Gardener"

[Musicteach]

I can't offer anything new to what has already been said, but just send you love...lots of it!....and surround yourself with the air cuddles that come your way.xxx❤️

[Nixta]

What meds are you on? I am on Plaquenil (Hydroxy) and it has transformed my life. Its only been about four months but I feel I have been given my life back.

Take control of your medical care, get expert specialist Rhuematologist to assess you and listen carefully to the advice. There is lots of help out there - you can get better and the pain levels can be improved. Write a list of questions and make sure you are referred to an expert in your area. It's worth every penny to get the correct meds and advice.

Sending you strong good forces!!

Nixta

[anniejoseph1]

please please dont give up i got lupas at 28 constant pain meds had to come off methatrexate when i got pregnant but 5 children later and 20 plus yrs on its the best thing i ever did you can get through this you can have a family we are here to support you dont give up on your dreams to have a family