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xrstina62
02-05-2013, 09:16 PM
hello everyone i was diagnosed with lupus a few months ago and only after years of lab work and tests finally there is a name for what is happening to my body. i am 31 yrs old single mother of two. i guess i still dont know how to cope or handle all of this is very depressing to have something that can not be cured. and the symptoms i have are so bad i have so much pain extreme fatigue my memory i have noticed is not what is used to be. i have sores in my nose that are so painful on my scalp and on my gums. recently i noticed my legs from my knees down hurt so much some days it hurts to walk. i have trouble eating and sleeping. my liver is showing signs of cihrrosis??? my dr. thinks i may have auto immune hepatitis i am so super stressed on the outside i look as if theres nothing wrong with me but the way i feel is so obiviously not the case anyone please i need advice idk anymore.....

ButterflyRN
02-06-2013, 05:06 AM
Xristina62 welcome first! You will find so many supportive members that know exactly what you are going through! I am so sorry you have to struggle with this like the rest of us! I was diagnosed when I was 11 and now I am 34. As I've gotten older I am having more flares. My biggest problems are joint,muscle and tendon pain along with fatigue and that minor little thing of class 4-5 lupus nephritis...not! But I can't complain too much as my kidneys function normally but have a lot of scaring from the lupus attacking them and they spill protein. I have been on cytoxan chemo, rituxan,prograf, and now currently on cellcept and acthar gel injections (ACTH). Holding my own in this current flare but the fatigue and pain can be frustrating especially at our ages.
i am so sorry that you are dealing with this. What meds are you currently on? You are going to have good days and bad days. Stay strong! You will find that you will be down sometimes but keep pushing and cry if you have to. Trust me even when things seem hopeless they will turn around! Please fell free to private message me anytime if you have any questions or just need to talk or vent!
sincerely ButterflyRN

ItsLupus2007
02-06-2013, 10:11 AM
Hi and Welcome!

I know how confusing and scary this can be at first until you can get your mind wrapped around your new "normal",get a good Dr team behind you and start to try to get your health under control.

The leg thing I would recommend asking either your PCP or Rheumy for a Vitamin D test and a metaboic panel the vit d is not on the panel but seperate andI had that sensation and it only kept getting worse. I was on supplements and still went low.

The pain was something indescribable and I mean that literally as the closest I could come was "it feels like there are broken bones in my shins but I am continuing to walk."

Again Welcome and hope your drs start to get your health under control soon.

xrstina62
02-06-2013, 05:57 PM
[QUOTE=ItsLupus2007;112962]Hi and Welcome!

I know how confusing and scary this can be at first until you can get your mind wrapped around your new "normal",get a good Dr team behind you and start to try to get your health under control.

The leg thing I would recommend asking either your PCP or Rheumy for a Vitamin D test and a metaboic panel the vit d is not on the panel but seperate andI had that sensation and it only kept getting worse. I was on supplements and still went low.

The pain was something indescribable and I mean that literally as the closest I could come was "it feels like there are broken bones in my shins but I am continuing to walk."

Again Welcome and hope your drs start to get your health under control soon

thank you so much for the feed back it is very helpful and eases my mind to know that i can talk to people that have the same thing i do. its hard to talk to someone and they dont know how it feels to have lupus. as to the vitamin d i am deficient i currently take 50,000 iu once a week and its still showing low level. and i agree the pain is horrible when i have the flare ups on my legs. and yes this is all so very confusing and depressing i have signed up to talk to a councler or phsychiatrist im just not a happy person right now.

xrstina62
02-06-2013, 06:13 PM
hello good evening first off i would like to thank you for the feedback. and i am really sorry you have been going thru this for so long. i sit and think and wonder just for how long i have had lupus i remember as a child my ankles hurting really bad and my right one would swell up to the point to where you could see the bump i have suffered from migraines since i was in elementary school and just always complainedof pain.....plaquenil that didnot work my doc. changed it starts with a c or l but my insurnace will not cover it its so expensive i cant afford it so right now ive been waiting about almost 2 months now for a med. that my insurance will take but it sure is taking my doc a long time to change it. right now i am not taking anything besides vitamin d 50,000iu and prednisone wich i donot like the side effects. at times i feel like i am going to loose my mind. all this waiting and trial and error we have to go thru just to get something that works i will keep you in my and i do not now how to message yet but i will learn

steve.b
02-07-2013, 07:03 AM
...........i do not now how to message yet but i will learn

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