[Rene]

:sad:Hello everyone, I haven't posted on the boards in a long time. I have been way to sick. Lupus has really taken over my life this last two years!!I have really been struggling to grasp this whole disabling disease and it has gotten the best of me!!:blink:I have literally been just about home bound. Going from my bed to the recliner in the living room daily. I have only been picking my son up from school and then back home and there have been several days that my husband has had to take off of work early to pick him up because I haven't been able to. My periods make lupus even worse(just about unbearable)The intense bloating and cramps and swelling on top of lupus are just awful. I am at witts end. I have a good Rhematologist but I just don't get any better. I don't have severe organ involvement but I have the most dibilitating aspect of SLE. This stuff is a CRUEL disease. It stealsl our lives literally! I would love to hear from anyone who had found some kind of relief, someway ,somehow:worried::worried:I always end up going up on steriods(prednisone no matter what) and I take Imuran and have tried just about all of the other meds(NO HELP TO ME ONLY MADE ME WORSE)I'm only 40. I lost my whole 30's to LUPUS!I don't want pity!! Just compassion and any advise or help from someone who has been there would help.I am considering seeing doctor's in other states in I thought would help!! I don't know how I keep hanging in there. I just want to live so bad and I love my 11 year old son. But I am so sick of PAIN and MEDICINE SIDE EFFECTS!!!!!Someone give me a shout of encouragement!!!!!!!THANKS:bow::bow:BEFORE I LOOSE IThno:hno:

 

[kezza]

Hey oh boy I sure know what you are talking about. I was diagnosed 2 years ago after 7 years of increasing symptoms. I have taken just about every med you can think of just coming down again from prednison 50mg taper down to 10mg baseline now on pain patches for the pain just over it like you and I am 42. I find a day off i am stuffed and laze around the house but the pain patches change every 3 days and the first night i do not sleep at all if Lupus aint bad enough then that as well as 3 kids at home thank god I have a great husband that stays at home while I work a 9 day fortnight with full time hours otherwise I go mad but we all cannot do that.
I just want to let you know that I know exactly the frustration and fed up feeling you are having and let you know you are not alone.
I have been on methotrexate, plaquenil and now imuran with the pred and all the others what a drag the Lupus is I hate it too.
Thanks for listening
hey chin up what I did not tell you is I fundraised for the Australian nsw lupus organsiation in october and raised 147.00 so it was something I actually felt control of helped for a while .
Kezza

 

[Maia]

Sorry to hear you've had such a difficult time of it. I've had very painful periods too and that time of the month worsens my lupus as well. Have you been investigated for any gyn problems that may have contributed to your period pain? Things like endometriosis? I had that diagnosed as well as a severely retroflexed uterus and had some surgery several years ago that helped a lot. I actually think my main problem was the retroflexed uterus... endo is a little harder to treat sometimes.

It sounds like you have tried the usual medications for lupus, perhaps you need to travel a little ways and get a second opinion on treatment for your symptoms? To make sure that something else isn't going on or overlooked?

Good luck - I feel for you. I've been there and I did finally find some help so it can get better!

 

[alisiajo]

I havent really had much pain with my lupus just in the begining before dx's. They started me on the prednisone and that helped 100%. Side affects suck. I have had my period for 2 months now i get terrible back cramps. They put me on a new birth control shot though and that is a side affect of it. I cant get pregnant right now so that is why. were you dx's after you had your son? Do you plan on more children, it can be very risky for lupus patients? I would suggest seeing an obgyn, maybe the best thing for your periods would be to have all that stuff removed? Then you go through the menopouse and heat flashes and all that just and i cant imagine that being very berrible. My mom is going through it right now and my is she cranky. but we love her so we put up with it. She had to be put on depression medication for it though. It can be rough for some women. I hope all works out

 

[Sage Hen]

Hi Rene,

I am sorry, you are suffering so much. Here are some soft hugs for you.

:hug::hug::hug::there::there::flowery:

I understand. It hurts a lot...


Feel better soon...Rene.

Love,
Sandy

 

[forever hopeful]

i'd strongly go see your gyno. i was just dx with endometriosis and those were the same symptoms that i was experiencing. you don't have to answer this because i know it's a personal question, but ask yourself: does it hurt during sex. also, are your breast more tender than normal. those were two other symptoms i had. like i said you don't have to reply, but if you do answer yes to yourself, then i'd call the gyno right away. best wishes and i hope you feel better!