View Full Version : I haven't been on here in 4EVER! Need Help or maybe just need to vent! :(

01-16-2010, 09:03 AM
Hey Everyone!
I haven't been on here in a very long time and back when I did I mostly read and didn't post at the time. I was diagnosed back in Jan '09 and boy was it a rough year for me. My main problem when i was first diagnosed was my platelet problem. I went thru several treatments including high dosages of steroids,Rituxan, and IVIG treatments. Then in April of'09 I had my spleen and my gallbladder removed and since the removal of my spleen my platelet counts have been up. I need to go have them checked just to make sure since my hemo released me as a patient in Sept they haven't been checked.

Anyways...my current problems are my lupus problems in general..i am hurting so bad at times especially in the mornings that it literally takes my breath away. Ever since my surgery I have been having what I call attacks on my right side that double me over in pain and they did colonoscopy and upper GI to see what they could find and all they can say is that i have IBS and irritable bowel syndrome but that is just one of those we didn't see anything so guess this is what it is. I just refuse to believe that the pain that i have on my right side is thisbecause it hurts worse than you can even imagine!! but what do I do? It's scary at times and I always think that if this pain doesn't subside I will have to call 911! They usually last aboutanywhere from 15-30 mins but the pain is unbearable..i'm constantly jabbing the area and leaning over things to put pressure thats the only thing that seems to even do anything and i think really that doesn't it seems that it helps. And i want to say i have a high tolerance to pain..im not the whiner type and I keep going everyday whether I am hurting or not. Sometimes i believe this makes my health worse and i pay for it tho.

My family forgets that i even have Lupus because of the fact that i don't complain that often and I do more than them on a normal day even when I'm not feeling well. Here lately i have had to tell them that I am too sick to do things for them. Ok, I won't bore everyone to death,(Probably too late for that sorry!) just would like to know everyones thoughts on the abdominal right side pain and also my knuckles are swelling to the point of being deformed looking and today they look discolored (very dark in color and dry) and just really weird looking now. I know these are things i'm probably just going to have to live with but really would like to hear from anyone that has experienced or has info on any of these symptoms.

Also, i have sores i guess you would call them on my scalp and they are very painful and a cyst on the back of my head but still in the scalp and it is draining clear fluid. Went away for a while but now has returned and it is very painful as well and not sure if this is symptom and what needs to be done about it. i know alot of you are thinking to yourselves you need to just get to the Dr missy but my biggest prob right now with that is that my rheumy was in an accident and wont return till mid march so i'm kinda at at loss on this stuff untill then..If anyone can help me I would GREATLY appreciate it or if you just would just like me to shut up I will understand that too! LOL

My thoughts and prayers are with all my lupus family

01-16-2010, 10:33 AM
Hi Christie,

Welcome back. I get sharp pain in my right side at times. It is severe enough to double me over and take my breath. Like you, I have a high tolerance for pain, and this hurts. My pain is not related to anything in the digestive system, but the location of the pain led me to believe, at first, that it was IBS or some digestive problem. My pain comes from Costochondritis. It's inflammation of the connective/soft tissue in the ribcage. It comes on suddenly, and it REALLY hurts. Fortunately, it's a relatively benign condition, though it hurts like hell. I take NSAIDS for it, and sometimes a hot pack pressed on the area helps too.

I don't know if this is what you have, it's just an idea to consider. As far as sores, the only ones I get are in my mouth. I have sore swollen knuckles, but there's no discoloration. I'm hoping another member will come along and possibly have more info or ideas that can help you. Anyway, I'm glad you found your way back to the site!


01-16-2010, 02:25 PM
Hi Christie;
The sores on your head could very well be from Lupus and/or Discoid Lupus. It is not uncommon for us to have both SLE and DLE concurrently. Lupus affects the skin in various ways, from skin rashes, photosensitivity (where exposure to ultra-violet light triggers a rash), and sometimes ulcers on the inside of the nose or mouth. The rashes can be verrucous (wart-like)- discoid LE; lupus tumidus - elevated areas of red skin with no scale or scarring; lupus profundus - discoid skin lesions in conjunction with panniculitis (inflammation of the fat underneath the skin [subcutaneous]); palmar-plantar erosive discoid LE - discoid lesions on the hands and feet. We also tend to get Lupus ulcers, these generally occur in the nose, mouth, ears, or genitals.
Recently, I've also been experiencing excrutiating pain in my left side. The intense pain subsides, but the dull ache never seems to go away. My doctor also attributed it to my IBS. I have an appointment in two weeks and will be taking my journal with me. Hopefully, she will have a better answer for me. I hope that you find an answer for your pain also. I wish you the very best.

Peace and Blessings

01-18-2010, 11:05 AM
Welcome back and ((((hugs))))

The pain in your right side...is it near the hip bone or the ribs? In between?

I've experienced deep nasty pain deep in my right side and at times in my lower back, but it's not my back muscles, it feels deeper in. They can't figure it out either and blame it on the autoimmune issues. Sometimes heat helps but I have to stay on the heat. I have a theory that with mine, it may be the autoimmune disease attacking the intestines because my ibs symptoms are always worse during this time. The pcp I had at the time suggested my pelvic bone may be out of alignment but I still don't buy that one...it comes and goes. If I was out of alignment I think I would suffer with this much more frequently.

Saysusie...that dull ache sounds like my dull ache too. I hope you get better answers than I did...at least something more specific than ibs symptoms. I've had ibs for years and never experienced anything like this until the past year or so. When this pain hits, I have to just park myself somewhere until it's gone...it's unbearable. ((((Hugs))))