Posted , 3 users are following.
First of all let me say hi and thanks for allowing me to join I will be very appreciative and welcome ANY ADVICE I get because I'm kind of out of options at this point and I need help
My problem is this. I was diagnosed with juvinile ra at the age of 12 along with severe debilitating endometriosis. This was back in 1994/1993. This was treated with extremely high doses of ibuprofen for the pain it caused because due to my age the didn't want to go with opiates for obvious reasons. The dose I was on was 4x 800mg Ibuprofen a day. At the time I trusted my drs but I will say that at 34 I weigh 93# and am only 4'11" and that i was way smaller at 12. I continued this dose for 2 years which resulted in renal failure and continuous renal insufficiencey. That being said I can no longer take NSAIDS or any medication containing NSAIDS properties forcing the drs to use opiates to control the pain. I've run the gauntlet of opiates including everything from Ms contin to oxy to vicodin. That being said I am now a single parent and pain or not need to stay sharp so due to choice I tapered from 30mg oxy 3x daily to 10 mg hydro 4x daily. I find this sufficient enough to control your pain enough that I can take care of responsibilities without being loopy but I am still in chronic sometimes debilitating pain (worth it for my son). In 2007 I got a miracle handed to me when I got pregnant with my son which drs had told me would NEVER happen due to the endometriosis. But on examination for prenatal was found to have stage 4 uterine cancer which left me with a choice. The dr solution was to terminate due to the risk to both me and my son. However, I'm a fighter so I chose to continue with close monitoring of the cancer and prenatal. Long story short the cancer spread and the pregnancy destroyed my kidneys further resulting in one BEAUTIFUL PERFECT BABY BOY, but also 8 surgeries the year he was born, and subsequent chemo and radiation treatments to BEAT the cancer that being said during my treatments they combined the anomaly in my blood work with past medical history and diagnosed me lupus. Which brings us to now. The endo is gone due to a complete hysto. So my DX at this point include SLE, RA, chronic pelvic pain (due to adhesions from surgery and endo) PTSD, and chronic renal insufficiency as well as late diagnosed scoliosis. My current meds are as I said the 10mg hydro 4x daily, anti malarial Iv 2x monthy, xanax 3 mg daily as needed (only taken at night aside from occasional daytime panic attack or triggers) and ambien (only used for sleep), methotrexate (dose changed often) and prophylactic cipro to prevent imfection. I will say that so far so good as far as meds go. I have way less problems with the lupus and the ra. But for the last few months I have been waking up in the morning with severe pain in my calves making it feel as if they are too short. This comes out of nowhere. I'll be fine one night and go to sleep only to wake up the next 5 day/sometimes we weeks with a problem so bad I can't get out of bed and walk. I have asked all my drs what is causing this and they always tell me it's lupus or ra but I'm very self aware and it doesn't seem to correlate with times I know my pain is from ra or lupus. For example this is not times when my joint pain flares. It doesn't seem to be linked with anything as far as I can tell so am I just being naive or could this possibly be a result of long term opiate use? Tylenol use? Or maybe another med I'm taking? Any suggestions as to when this happen what could help? I'm not above using homeopathic remedies or any use of the limited expertise I'm allowed. I just need help and don't want to have to go back to taking a higher opiate but with this problem the pain meds do nothing at all anyway.
Thank you to everyone that reads this. I'm sorry it's so long but I thought the history may play a part in helping you guys understand where I have been so as to better help once again thanks in advance for any advice given as I'm willing to try anything at this point!!!!
0 likes, 7 replies