Hi everyone,well it turns out i do have SLE and fibromyalgia.I asked my gp about it and he comfirmed it.Then i remeber my first appt with my rheumy last yearand she mentioned SLE but i didnt know what it meant until recently.Im rather in the dark about sle so can anybody enlighten me with the symptoms and pain relief and any tips to make life a bit easier.I would be most grateful if anybody helps.
hey there, Queen!! Everybody experiences different combinations of symptoms... I would think the most common would joint pain, reactiveness to the sun and heat, fatigue and rashes of sorts. Again, everyone's experience is unique, and there are many more possible symptoms that come along with the territory. What are some that you have experienced, if you don't mind me asking?
A few tips that I'd suggest, especially with warmer weather approaching, if it wasn't before, make sunscreen your best friend. Also, stay hydrated. Even if you're not thirsty, siip anyways. The other thing is to make sure you get plenty of rest, and try to find ways that help you alleviate stress as stress is also triggering (trust me, I would know :P)
Any questions, feel free to reach out or start another convo! Hope this helps a little bit
Hey Queenpink
Nice to see you here. Joint pain is a big issue with me. I found light exercise and rest helps a lot. I also have kidney and lung issues. I started taking benlysta a year ago and it is helping. Water therapy is great and most insurances cover it for at least 6 weeks. Remember to always listen to your body.
I have heart and lung issues as well as stomach issues.I dont think my lupus is under control because im fatigued all the time and when i exercise i feel a whole lot worse for some weird reason.I am in ireland so our healthcare system is different i would give water therapy a go if i had the courage to wear a bathing suit.I am rather overweight and i feel embarrsed to me in dresses etc.I have been resting more and when i rest i vomit a lot less.
I think i run out of spoons and push myself too much and my stomach complains.I have been getting rashes as well it must be the heat.It's rather warm over here and i am not liking the hot weather.Good tip lynn i will drink tea and some energy drinks throughout the day and i will try and not get sunburnt.Is there any way of getting more energy apart from drinking energy drinks?
Hey Queenpink, in regards to the fatigue, you can ask your doctor and see if you have become anemic. If so, you can see if you can get prescribe an epotien shot. I get it every two weeks and it gives me so much energy. I rarely if not any time get tired with it. Just a suggestion.
Hi QP!! They say it is different with everyone, and it is, but there are a lot of similarities. You may find that, now that you have a diagnosis, or "validation" of your symptoms, that you are not imagining it and that you are not crazy, that relief is short-lived as the reality of the rest of your life sets in.
You did not mention if you were prescribed any medication, but, if so, that has some symptoms of its own. Did your Dr. prescribe anything?
Army Trooper is so right about anemia. Because of the nature of the disease, an autoimmune disorder, your blood cell counts can play games on you. My Rheumy handles the lupie stuff, but works closely with my PCP who regularly checks the blood stuff. Diet certainly helps, but sometimes, medical help is needed. During my anemia times, I have a standing prescription for an injectable B12 iron shot. (Have had to have Procrit occasionally :-o).
This has been a wonderful site, and no question is too silly. It is different for each of us which is why a support group is so very necessary.
i regularly get a vit b12 shot.im on plaquenil,vimovo,palexia and anxicalm.im glad i finally have a diagnosis.
Me too! It helps a little, doesn't it? Have you noticed any improvement yet? Sometimes it takes a bit.
ive been getting them for a while and i saw a little improvement havent had it since last october i need to start getting them again.
One thing I noticed about my meds is that I would get the feeling that I wasn't feeling that much better (I thought), so I didn't panic if I ran out or couldn't afford refills right away. Then, I was out for 7 days. Oh my goodness, I literally felt as though my life force was slipping away. It took a long time to get back to where I was (when I didn't think my meds were making a difference). I learned my lesson.
Again, the disease is different for everyone as is, no doubt, meds and their efficacy. (I have some friends who still insist that I try drops of this, teas from that) Its all different. I guess the bottom line is, if you find something that works, keep doing it.