View Full Version : my daughter is having hard time with handling pain from lupus

09-18-2011, 05:25 AM
hi everyone my daughter sarah who was recently diagnosed with lupus to it now 3 generations my mum and me now her she is not handling well she is extreme pain she is taking prednisone but not helping she will need plaquenil i think she has hard time as she is allergic to all painkillers except paracetamol so they cannot give her anything she already suffers from depression but this is making her worse she is finding everyday hard just to get out of bed she sleeps most of the day fatigue so bad she has to have bladder scans next week as she is not emptying bladder properly they call it urodynamics scan she is urinating so much but not much is coming out they believe it is leaking into her insides she has been suffering from dehydration we had to rush to emergency where they placed fluids into her her stomach is rock hard she is ashamed to go out because she thinks she smells she rings me crying everyday and it is hard because i know her pain but cannot help her i really hate this disease i can accept it for myself but i hate the fact that my child has to suffer to if i could take all her pain i would.

09-18-2011, 11:19 AM
I am so sorry that your daughter is dealing with so much with this disease. I can empathize with your feelings of helplessness..my daughter developed Lupus after I did and her disease was completely different from mine. So, like you, I had no idea how to help her.
I wanted to give you a bit of information about urodynamics as it is not the name of a condition but rather a study that assesses how the bladder and urethra are functioning with reference to their storing and releasing urine. Urodynamic tests helps the to doctor see how well the bladder and sphincter muscles work and can help explain symptoms such as those exhibited by your daughter (as well as incontinence, painful urination, problems emptying the bladder, and recurrent urinary tract infections).
The urodynamic tests can be done in the doctor's office (usually an urologist or urogynecologist) and does not usually require hospitalization. The results of the tests will help her doctors to determine what type of treatments are available depending upon the underlying cause of her problem.
I wish that there was something that I could say to help ease your worries, but please know that we are here to answer any questions that you may have and to provide you with any information that you may need. Also, we are here to give you support, understanding and comfort..for both your Lupus and your daughter's. I wish you and your daughter the very best.

Peace and Blessings

09-18-2011, 03:13 PM
thankyou saysusie we had her at the the hospital again last night again dehydrated her bloodwork is showing abnormalities everywhere we are taking her to gp this morning and contacting rheumi also as well as her bladder specialist thankyou for your support hugs kiml

09-22-2011, 09:42 PM
Hi Kim. Wanted to let you know I've been thinking about you and your daughter and kept you both in my prayers. How is she today?


09-23-2011, 07:16 AM
I am sorry that your family has so much going on. You are in my thoughts