Lupus Community

I have lupus nephritis and although you sound very smart with your big words I must say you do not seem to know what we struggle with on a daily basis. Anyone with lupus can have severe pain....joint pain, this is one of the biggest symptoms of having lupus. Lupus nephritis is also treated with steroids, wich depleats the calcium from your body wich can also cause severe joint pain. So when you say people with lupus nephritis do not have pain you are sadly mistaking. I wish i could go one day not in pain.

Um, excuse me but Lisa was saying FLANK pain, not joint pain. Flank pain is not normally attached to kidney involvement.

Rena

Cmommy28:

First of all, there is really no need for your bad atitiude on this board. If you want to take your anger out on something or someone, by all means, take it somewhere else.

If you actually read my post, you would have seen that I was talking about FLANK PAIN associated with lupus nephritis. Many people come to this board saying that they have pain in the lower back, on one side and ask if it is lupus kidney involvement. To which I reply: there is no pain associated with lupus nephritis.

I don't know what lupus patients struggle with on a daily basis??? ARE YOU KIDDING ME?

I was diagnosed with lupus for 27 years ago and have been through just about everything there is to go through. I also have several other conditions secondary to lupus. I've had major organ involvement including stage V (that's the roman numeral for 5) lupus nephritis, I went thru 3 years of cytoxan therapy.

Believe me, I know so much more about lupus and the pain associated with it than you, it would make your head spin!

For you, a stranger, to doubt my credibility on this message board is out of line. I have been here, on this WebMD board, for over 10 years helping people.


Lupylisa

Hi, my wife was recently diagnosed with Lupus. (Actually the blood tests are pending but so many symtpoms are present that we think we know she has it). I am concerned about several things and hope to find some direction and answers on this board and any others you might recommend.

Today, she is complaining about pain near her kidneys. Is this common? I think it is. What do you do to deal with this pain? Over the counter medication? Drink more water? Report to physician obviously but if the pain becomes severe, is the ER the prudent choice?

Also, for those of you diagnosed, do you find that there are psychosomatic symptoms ever? My concern is that the more my wife reads about symptomology the more symptoms she might feel. I know this is a slippery slope to even ask this question. I am simply trying to understand how to best help her.

When you found out you had lupus, did you have to deal with depression? How did you get to acceptance, and how difficult is it to live with the condition? Do you refer to it as a condition, or a disease? Please help me with the correct terminology.

Finally, what medications do you take and with what frequency do you take them?

Hi and Welcome!

Lupus is referred to as an autoimmune disease.

If she is having pain in her low back, it is most likely a muscle strain, kidney infection or kidney stone. There is no pain associated with lupus nephritis. She would need to see the doctor and get a urinalysis done to rule out infection.

It is definitely possible to figure out that you have more symptoms than originally thought when reading about lupus. Things you thought were normal for you are actually not! So the more she reads, the more aware she may become of things that have been affecting her. So in fact, she may actually have these things she is reading about. It's like a puzzle and once you start putting all the pieces together an overall picture forms.

Depression with a lupus diagnosis is very common. It's hard not to be depressed when you feel terrible all the time. I believe that one must go through the grieving process when they learn that they have a chronic disease like lupus. Grieving for the loss of your good health is one part of the process. How each individual deals with their own lupus differs from person to person. I chose to have a positive attitude and deal with each hurdle as it comes. So far this strategy has worked very well for me.

There is no one set treatment for lupus. Everyone experiences it differentlyThere are many different meds we lupies take depending on each individual case, the severity and organs affected.

I hope this helps!

Lupylisa

I am still waiting to see a Rheumy and therefore have no diagnosis yet. I have however experienced a lot of flank pain over the last couple of weeks. I believe that in my case it has a lot to do with having to adjust to new sleeping positions to relieve knee pain. I am sleeping in ways I didn't use to.

Lupylisa,Thank you for you dedication to the cause and willingness to share. it is understandable that you would feel defensive when someone responds frustratedly to your offering of what you know as fact. I noticed that your byline calls for love and patience and faith...Let's walk the walk, okay?

I believe that you know a lot about your illness and the topic in general. So you will understand how one might react inside after going through a Lupus dx ( usually years of people telling you that your symptoms are not real and that there is nothing wrong with you when you know what you feels ndthat you are sick).

I for one, before ever being diagnosed with Lupus 16 years ago and since have had intermittent , often debilitating flank pain which I have never been able to dx. I have been tested for kidney infections, had unltrasounds, been told that it's a follicle on my ovary that is normal and usually causes no pain, a kidney stone that is not visible and produces no chemical indicators (?!) etc etc.

there is no explanation. it began at the same time as the Fatigue and joint pains. It is there. It is real. It may or may not be diagnosable nephritis ( and your nephritis may not have caused pain - it does in some) but I am confident that as research progresses that we will come closer to uncovering the mystery of flank pain and Lupus. the evidenceof it as a symptom is there - thus the topic prompting your response.

Cmommy, I understand your reaction - I felt it also - yet I am referring to flank pain specifically. again, patience and kindness are more appropriate - this will allow us to hear each other better and learn from one another.

Lupus manifests itself differently in everyone. Moreover, so does the common cold and emotional events...We all have our own individual illness experience. Happy New Year everyone. May we all feel strong. Nancy

Hi Nancy and Welcome!

This board is a great resource to help people understand and cope with lupus. It has always been my intent to do my best to help people and to make sure that the information I give is accurate. There are, however, times when I have to defend myself from an unwarranted attack by someone who knows not of whcih they speak.

That being said, there are several causes for kidney/flank pain. Pyelonephritis (kindey infection) being one of them.

Here is a list of other causes of kidney pain: http://www.mayoclinic.com/health/kidney-pain/MY00125/DSECTION=causes

All the lupus literature and web resources say that Lupus nephritis does not cause pain. Which is why laboratory tests( blood and urine and often times a kidney biopsy) are needed for a definitive diagnosis. That is not just my opinion, it is a documented fact.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=100&zoneid=9

http://kidney.niddk.nih.gov/kudiseases/pubs/lupusnephritis/#symptoms


There are other conditions that accompany lupus that can cause pain in many areas of the body, including the lower back/flank such as fibromyalgia, myositis, vasculitis to name a few.

Have you asked your doctor, or has your doctor suggested that you get a kidney biopsy to eliminate or diagnose lupus nephrits and to allay your fears that you might have it?

A Kidney biopsy however is not something to be taken lightly. It can sometimes be a dangerous procedure. When I had mine, I was hospitalized for three weeks after it due to many complications stemming from the procedure. Not the least of which being severe internal bleeding!!! The radiologist knicked my artery and I nearly bled to death!!!

http://www.mayoclinic.com/health/kidney-biopsy/MY01223/DSECTION=risks


Lupylisa

I too first noticed flank pain just before all my lupus symptoms came into play. I had never had a kidney infection and was prescribed 2 meds to help it go away and it never did for a month which was what started up the questioning. I could not get rid of it and then a low temp, fatigue and later percarditis all followed.

I do not have lupus nephritis as they just took more blood tests but since I am fairly new to being diagnosed, I remember very well that flank pain that started all of this off. I only found this website and convo as I was googling to see if there are pains when the nephritis starts up as I am having those pains starting up again. I too have found there should be no pain if it does start, which is why blood tests every so often are important.

I am very sensitive to my body and its sensations so it does worry me some that maybe there are a few of us that do pick up on it. as I said earlier, I have NEVER EVER had any type of urinary/kidney infection in my life. I feel there is a connection to it as well. Just wanted to put that out there in case someone else needs to see this.

Be well,
Kelly

Hi kelly,nancy, and lupylisa..

first,thank u LL for all ur input and help,u clearly have dealt with alot and have conciderable knowledge and understanding of this crazy disease that we all have,and ur words r of great support thank u soooo much.

i also have lupus (sle) for about 7 yrs now (after ,like many,being told for years it was one thing or anothr,or nothing..frustrating to say the least). i have to state, that ,like kelly and nancy, i too have flank pain,mainly back, left sided, and have off and on thru the years, and it was also one of my first symptoms, along with feet/hand/ and eye swelling (my "E.T. look" ). i have sometimes had kidney infections with this pain,sumtimes not. also,continually show protein in my urine. the pain is sumtimes associated with cloudy urine,sumtimes not.
like kelly and nancy, i am very sensitive to knowing my body and when sumthings not right. i am not sure whether or not its my kidney, but it does seem that way at times. i have yet to get a biopsy to confirm damage one way or another.
i am not a dr (or nurse,although have worked & trained in the medical field for many years), but i do know,its not fibromyalgia, not vasculitis, not def not muscle strain.

my thought is, i realize most medical literature states there is no pain with lupus nephritis, but the fact that i continually read (& not just on this site) that many people,like myself, seem to have flank pain (thats not muscular or fibromyalgia or vasculitis) associated with this disease, seems to warrant that it should be looked into more aggressively by the medical field in general. i often wonder if there is sumthing being missed here. i have also wondered if this pain could be related to another organ in that area?? perhaps pancreatic or spleen?? or ?? as i google for pain in that area, sum of the symptoms for thoz organs also comes up.
i know there is still alot of research and dxing going on out there for lupus, and because its so complicated and effects so many parts of the body and so many people in a million different ways, isolating issues is hard to do. just seems to me, that with the number of people i have seen experiencing this pain, sumone in the medical field should be focusing more on this.
i do feel for those of u going thru this same pain(that is otherwise ruled out from other things),bcuz, i know,for me, it is, at times,as frustrating to feel the need to be heard and bleeved, as getting dxed in the first place.
thank u all for ur input and help... if nothing else,its nice to know im not alone
be blessed, heidi

oh your so right I have lupus SLE, discod lupus, and lupus nephritis and I am in pain everyday in fact im a pain managment paitent. Lupus and lupus nephritis are VERY painful and im in pain everyday of my life and yes I agree I wish I had a day without pain that would be amazing. People that dont have lupus dont have the slightest clue what we go through on a daily basis! It makes me mad when someone says someone cant be in that much pain all the time well guess what its possible and we do it everyday.

Your right, I myself have lupus and normally nephritis isnt painful but once it flares up in me myself I know because my kindeys start throbing like someone is stabbing me, it was almost the same feeling as when I had my biopsy but over and over again, so in myself my lupus nephritis is painful

Lisa,
I almost called my doctor last night when I was out. I had been having lower back (back of my hip area) that was a throbbing ache. Started on left side during the day, spread to both sides by the end of the day.

Is this just another part of Lupus? I mean, I have achy hands, arms, feet, knees etc. off and on all the time and I just take an Ibuprofin and wait ... is this lower back aching part of it as well?
Or should I call my doctor? I have tests everyu 6 months and this has happened on and off for a while so if it was something I guess it would have showed something.

Sorry for the long winded message, just feel very unsure about whether the symptoms are "normal" or not.

Any insight would be really helpful.

Thank you,

Susan

Susan,

There are so many different types of aches and pains associated with lupus that it can be hard to differentiate which is causing what. I would suggest that you call your doctor and make an appointment! Better safe than sorry!


I hope you get the answers you are looking for! Good luck and please let us know what happens!

Lupylisa