Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
There's something really, really wrong with me. I have different doctors saying different things, and I'm trying to develop a diagnostic strategy, but I don't know where to even start looking.
I've been having recurrent kidney infections with joint pain, low grade fevers, last year I was constantly feeling ill (like it was Norwalk virus or a bad cold), this year I'm just weak and in a lot of pain.
The pain isn't symmetrical. I don't have swelling in my joints (that I can tell, but I did have a swollen ankle... peripheral edema - may have been related to kidneys, but the joint hurt really bad).
I have a lot of neuropathy all over my torso, back (upper and lower).
I have nasal sores. They hurt to touch, but they don't hurt if they're not touched.
I'm just gutted, exhausted... I don't know if I should be looking at Fibromyalgia as one doctor suggested. Rheumatoid Arthritis as another suggested. Is it the Lupus my cousin has? Is it the Multiple Sclerosis my mother has?
It is a vague rheumatological thing that won't likely have a single identifiable disease or cause?
The doctor who thinks this last bit is the one who was quickest to treat me and seems genuinely concerned about my pain. For that, I'm grateful.
Any ideas?
I've been having recurrent kidney infections with joint pain, low grade fevers, last year I was constantly feeling ill (like it was Norwalk virus or a bad cold), this year I'm just weak and in a lot of pain.
The pain isn't symmetrical. I don't have swelling in my joints (that I can tell, but I did have a swollen ankle... peripheral edema - may have been related to kidneys, but the joint hurt really bad).
I have a lot of neuropathy all over my torso, back (upper and lower).
I have nasal sores. They hurt to touch, but they don't hurt if they're not touched.
I'm just gutted, exhausted... I don't know if I should be looking at Fibromyalgia as one doctor suggested. Rheumatoid Arthritis as another suggested. Is it the Lupus my cousin has? Is it the Multiple Sclerosis my mother has?
It is a vague rheumatological thing that won't likely have a single identifiable disease or cause?
The doctor who thinks this last bit is the one who was quickest to treat me and seems genuinely concerned about my pain. For that, I'm grateful.
Any ideas?
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I have my docs all confused. 2yrs ago I was down to 120+ pounds. Now I'm back to 170. I dont look like a person with sle, but on the inside is a different story. Joint pain, inflamation, fatigue. You name the symptom, I got it.
I know 2nd opinions are great. I've had 40 docs in the last 2 years. I live in a small town with a small town doc and he is great. He listens, and if he doesn't understand, he researches. And my Rheumatologist is one of the best in the Pacific Northwest. I have two people that work together to figure out the problems. That is what you need to find.
There is is a link/ topic.. called - What IS Neuropathy you'll also find other helpful resources for pain management.
http://dailystrength.org/groups/neuropathy
:)
I have Undifferentiated Connective Tissue Disease, which is similar. I have symptoms of several, but no one symptom to definatley point to one or the other. It has been a very difficult last few years for me in the diagnosis department. For several years I was told it was all depression, anxiety, or both. Finally last year a physician cared enough to look deeper and really listen. It took so many years though of swinging back and forth between KNOWING something was really wrong, and feeling INSANE because the physicains told me I was fine.
A really good rheumatologist who is familiar with the different auto immune disorders and familiar with lupus is a necessity. Not all rheumy's have the same experience.
Good Luck and Hugs.
Jill
Meanwhile what your dr. can't tell you is that you can control your flare-ups with seeing a nutritionists, and your life style. Diet has been the main factor for me in getting my lupus in control as well as supplements.
Please know I am thinking of you and hope you find some solutions soon. Keep me informed, okay?
peace and love ... Kyle Anne