Hi All I’m new to all this so just wanted to say hello!i was only diagnosed in November 2014 so still trying to come to terms with what’s happening to me.the changes to my life have already drastically changed I went from healthy going to the gym 5x a week to now not being able to due to my joints swelling and have that feeling of being tired and just generally fed up. I continuously keep getting a build up of fluid on my lungs too does anyone else suffer with this?I feel like I’ve been going through a flare up since my symptoms started how do you battle them?? I’ve also read that you can go in remission some people this can happen to for over a year! I’m guessing that’s one thing we all prob wish for! x
I can relate! I’m not officially diagnosed, waiting for my rheumatologist appt but initial tests and symptoms point to lupus, but I wonder about the constant flare type symptoms too. I used to go to the gym regularly but can’t anymore as well. I’ve had pain and what seems like flare type symptoms since early October. Good question, I am thankful for this board. Hopefully someone can shed some light on this.
I’m not sure about fluid build up in the lungs but I have a lot of chest pain, feels like pleurisy.
I know for me, the constant symptoms are not a lupus flare but chronic problems because of the organ damage I have from the lupus, its frustrating to deal with all of it. You need to talk to your doctor about the fluid build up on your lungs, it could be heart or kidney related as mine is. For me I've just learned to accept the limits and have come to the understanding that for me this is what my lupus is for me, I don't dwell on it anymore, its not worth stressing myself out over it, it is what it is I now know the organs damaged by the lupus is not reversible, it is permanent whether I'm in remission or not it doesn't matter, the problems for me will be ongoing. I hope you can find a way to accept it and learn to live with it, you sound like you're young, much to young to be fed up there are tons of new treatments out there now, that weren't available 25 years ago which is one of the reasons mine is so nasty, you've got to be strong, keep positive remission does happen a lot now a days, we are all here for you you are never alone.
Hi crystal that’s the worst time I think when your in limbo waiting for a diagnosis I didn’t really know what was going on because my symptoms began when I had gone on holiday abroad. I also didn’t know much about lupus when they first queried it. Maybe you should have a check up incase you have got pleurisy. Thank you for your reply Hopeful my general doctor just doesn’t appear concerned about it I’ve had on going rib pain since I was diagnosed with pleurisy before to now. I read somewhere that the fluid build up can be linked to other organs. I’m really sorry to hear yours is irreversible but you seem a very strong person and don’t let anything hold you back. At the moment I’m having tests done at the hospital I had a CT scan of my lungs then I’m due for another respiratory test but I’m having to cancel it because I have the fluid on my lungs at the moment. I think I have got to learn that I can’t do so much as I used to, I’ve always been a busy person always burning the candle at both ends. Your right though a positive attitude I definitely what is needed!
Jasmine, welcome to the group. You will find a lot of support here, good advise, and we're always listening, and hopefully helping. Stay positive, learn as much as you can about Lupus, and if in your area you have a support group, join, you will learn a lot and people there will help you cope. Good luck, and feel better. Take one day at a time.
Hello, I’ve been living with lupus for 2 years and was very active as well. I have learned that lupus symptoms are inevitable BUT there are still precautions that can be taken to possibly minimize them. I stay away from gluten, dairy, soy, foods high in sodium and sugar because all of which make me flare up. When I swell up I put on ice packs.i take 1800 mgs of ibuprofen for pain which barely works at all. I try to exercise when I have the strength and energy. Also I try not to stress and stress brings on my worse symptoms. Most Lupies have different symptoms and different ways of relieving them, so just find what works for you.
Hang in there. I’m 3 years diagnosed and still have flares. I did have the lung issues in the very beginning spent a little time in the hospital. So ive learned you have to be super cautious around anyone sick. Get some masks. Start paying attention to what you eat also some foods make you feel worse. Same thing with alcohol.
Jasmine yes please hang up your superwoman cape. But you are not alone. I retired mine 2 years ago (kicking & screaming needless to lol) I had to just finally accept it and become a new superhero.
Feel better
Thank you all for your replies. I’m finding everything you say is right I know I have to start to plan my life better not trying to do too much and getting stressed out. I’ve been trying to read up on foods that are good they say leafy green veggies and plenty of fish ect and cutting out what may cause flare ups like foods high in salts guessing that’s takeaways out the window. I have definitely learnt a night out with the girls means major flare the next day! I thinks it’s the learning to adapt that gets you because you are still stuck with well I used to do that. I will be definitely hanging up the superwoman cape haha! I’m not too sure if I can take ibuprofen as I’m on Meloxicam. Usually I team it with Paracetamol or Cocodamol which the doctor said to do.In a weeks time I begin my nursing training at university so this is going to be my biggest challenge yet!