Danajeff
"Morning everyone... well not good. I am new to the lupus spectrum..I not in treatment yet. Last nite I had the worst pains in my legs..shoulders and head. Can't sleep at night due to pain. I found out I was active. I k ow nothing about this so I am learning..ok found out mouth sores Indicate active. I just learned to not attempt to walk this pain off or DO NOT EXERCISE.. that shocked me. Advises to lay down the entire time until everything subsides
Good to know...my primary told me none of this
Especially the fact that organs ate in danger. Wow I rambled..lol. sorry guys..I am new to this.
"
Hi,
! I replied earlier to another of your comments, but I promise I'm not stalking you and I'm not the only moderator here (holiday weekend in the USA). I did provide some links in my other post, but please let me know if you would like me to re-post them here. There are things you can try to manage your symptoms while you wait to start treatment and those links I shared covered some of those things. I am sorry your PCP wasn't very helpful, but many general practitioners feel pretty out-of-their depth when it comes to autoimmune diseases.
I'm sorry you've had to figure out how to manage from trial-and-error and online research up to this point. Please tell me you're getting that treatment started shortly!
Hang in there; you're doing very well, considering your situation. Getting treatment started should help you feel better and also feel like some action is finally being taken and that counts for a lot when it comes to morale!
Best, Erin, Lupus.net Team Member.
"Hey guys. I am new to this experience. Symptoms of severe pain in aide of face were ignored by me for months. I am now so run down I am actually scared. OK today is day 3 of being active. Sores in the mouth for 3 days now. I am laying in bed not able move. I have ice packs on my legs and shoulders. I actually feel like I was run over. I am not in treatment yet so I am looking for some light at the end of title. I am strong as far as pain. It is KICKING MY ASS....lol"
Hey,
! First off, I am so sorry you are feeling, well, like you've been run over. Lupus doesn't take kindly to being ignored, does it? But, I understand you are very limited as to what you can do, since you're not even in treatment yet! I mean, your options are pretty slim. Do you know when you will be starting treatment? It sounds like you are doing what you can to manage your symptoms and that's good. There are some things you can do to help with the mouth sores, but I have to tell you that it's best to run any treatments by your physician first, just to be safe. Here's some information on Lupus related ulcers and sores and some tips for dealing with them -- https://lupus.net/symptoms/ulcers. And here's some basic info on trying to manage the pain while you wait to start treatment -- https://lupus.net/symptoms/joint-pain. Here's some info on muscle pain, too -- https://lupus.net/symptoms/muscle-pain. I hope I'm not overwhelming you with information!
I hope you are able to get ahead of this pain and that you start treatment very soon! Keep us posted on how you are doing, if you feel comfortable doing so.
Best, Erin, Lupus.net Team Member.