Just wondering if anyone experiences leg swelling with lupus? This is something new for me. I feel like there’s something new every day, and I feel the depression kicking in. I appreciate any advice on dealing with the depression. Thanks
Hi there, I have experienced this. How is your bp? Do you have redness or heat to the touch coming from your legs at all?
Hi Vera,
random swelling is classic Lupus. I take with my Doc's consent a celery tablet x 2 a day to assist with fluid retention. Since I have started this I now have shoes I cant wear any more as I 'walk' out of them they are so loose.
Feeling like there is a 'new' issue every day or so is also classic Lupus. Keep brief notes to use as reminder when talking with your Doc.
I find ice pac's a lifesaver. With regard to depression I have posted previously that I found tremendous assistance with having a few (3) sessions with a psychologist who specialised in terminal & chronic illness.
Every day is a huge challenge & as a newbie (2 1/2 yrs) I don't know a lot but I try to post when I can from personal experience. Best wishes to you. Kaz x
I have experienced Leg Swelling from day 1 - way before I was even formally diagnosed. I started got sick several years ago & formally diagnosed 2 or 3 yrs ago. As far as something new every day - me as well. I swell real bad when I am on my feet too much/too long, when I am overtired, get to much sodium, or not drink enough. I get my feet elevated as soon as I can & have script for diuretic to take prn.
This is long & I apologize. Since Lupus I have trouble getting words to sentences, summarizing & conveying what want to say. I am sharing my experience with how I finally acknowledged & accepted that I was depressed.
I hate to sound cliché - but I feel the first step to trying to fix a problem or issue is admitting that there is a problem. Depression runs on both sides of my family but it still doesn't make it any easier. I get to feeling that geez I have enough wrong with me as it is why do I have to one more thing.
It was actually our family physician that got me to admit I was fighting depression. I always tried to put on a brave face & act like I was handling everything in stride - in reality I was falling apart - a lot of inner demons. I was afraid that if I admitted that I was depressed I was gonna be put on yet another med & have to attend counseling. I am all for counseling but - I just couldn't imagine having to go to one more thing or having more expenses (counseling & medication) related this damn illness. Anyway - I forget exactly what Doc said to me but I just broke down bawling & he said something like ...finally I was wondering how long you were gonna keep up the charade. (we have doctored with him for along time - he uses his dry sense of humor at times yet he is a very caring, compassionate physician.)
Once that barrier was brought down I felt like a huge weight had been lifted. I take Savella a low dose anti-depressant that is used to help with fibromyalgia - which can accompany Lupus.
To help with my depression - I have to thank my hubby (depression runs on husbands maternal side). I would make "to do" lists & then I would have a flare & nothing would get done. The list kept getting longer & I started feeling more & more despondent. I was in a downward spiral - felt useless, ashamed & guilty that I couldn't get anything done & guilty that I was a financial & emotional burden on my family. This sounds crazy but my husband or daughters never made me feel any of what I was feeling. I was doing it to myself - my own worst enemy. I broke down in front of my husband. He was like - no wonder you feel that way you keep adding more to your to do list, you are sick & don't get what you want done yet you add more to it. He said he got overwhelmed just reading it. He sat me down & asked "so what did you do today?" I was like really - are you trying to make me feel worse? He just said "no stay with me on this". So I humored him, he listed what all I got done & made me look at the list. He was like see what all you HAVE done - I was flabber gasted. I actually accomplished quite a bit. It was simple stuff like -Got out of bed, showered, made bed, fed animals, let dog out to potty, made phone calls, etc.. Things that were so trivial , so simple are now considered significant. Don't get me wrong there are days that making it out of bed, changing clothes to pick up daughter from school are all I get done & other days that I do more.
I am unable to enjoy most of the hobbies I used to do but I do read. Just getting into a good book can really help my mood. If I feel up to it I take short walks - it may be just down the driveway or around the block. If not up to that I sit outside in the shade & listen to the birds or close my eyes & mentally list positive things In my life. Some days it takes awhile because it seems as if my life is crap but I have to tell myself you know it could be worse. I think of the worst things I could imagine that would be worse than Lupus & how bad that would be. Then I start to realize that you know things aren't too bad.
I live in a rural community of approx. 5200 but about 50 miles away is a much larger community that has a Lupus support group. Discovered it through a friend whose husband has Lupus. They both said it was a blessing because he was fighting depression & didn't have $ for counseling. The director is amazing & helps in so many ways. From just listening, to some counseling , latest news/info on Lupus, even helps attendees with finding funding for treatments or medications, & helping with insurance or getting disability. I would love to go but our last of 4 daughters is 12 (others are in college & finishing up college ages 20, 23 & 25 along with an almost 4yr g-daughter).
Sorry for the ramblings just hope at least one of my suggestions or techniques might help. Take Care & Bless you
I had this problem when I was first diagnosed but once I started meds it seemed to get much better. Now I occasionally have a little swelling but not too bad. I also have had previous issues on and off such as during menstrual cycle so I thought maybe I was just prone to this. Did you ever have any problems with your legs retaining water in the past?
Had it for I don't know how long. It was mild at first, but last year I lacerated my left shin and it got worse. Couldn't fit in shoes. I have gorgeous shoes that are useless. Doc gave me a diuretic and some potassium pills. Took it for a couple months, but couldn't go anywhere because I have stress incontinence. I had to go every half hour. He also wanted me to wear support hose. I get terrible muscles spasms from them. I just try to sit around with my feet above my heart when I can. Don't walk for extended periods of time.
Don't know an answer.
You got to hold on!
So sorry to hear that you are experiencing such problems… All i can say is that you are telling my story! Im 38, which by the way I was told I would not see… But I suppose I am simply too stubborn to give up!
is your doctor checking your kidney function? I have been in a slow now and have not been able to work since September of 2012. I have SLV and this has been the worst. It has attacked my brain, my ( I am typically about 140.kidneys, I have huge win since all over my body and inside of my belly, causing me to not reach 100 pounds, please know that this is not typical for me, as I am usually around 140. I was on high doses of prednisone for years,
but it did a number on my body and apparently the risks outweigh the benefits. I am on a clinical study right now, and am not allowed to take any steroids. however, I know my body, and I think I am going to drop out of the study, as I believe it is making me more sick.
when I was working I was a therapist. II honestly believe that therapy is almost as necessary as methotrexate in cellcept are for me. as I do feel useless and a financial burden. my family, is overwhelmed with being caretakers, and it has put significant stress on my relationships with my family, especially my husband and son. naturally, this simply adds to my guilt of feeling bad for being sick, as if I asked for this!
I also have seizures and have lost my license and ability to drive. this of course drives me nuts, as the things that I used to be able to do with one hand behind behind my back, I cannot d" it all. I keep trlling myself that “this too shall pass”
I am quite aware that there are several phases of livinwith chronic illness, and anger is one of them acceptance is another. both my family and I need to work on this and come up with ways of doing things together, as I know that they’re angry with the disease just as I am, and at me, but it is hard some days, and they have to remember that I am NOT the only person in my family that is affected by lupus.
knowledge is power, as is being an informed patient. I try to stay on top of all of the news related to the links that they are finding these days and the test there more accurate… I need to myself hopeful on this support group form because I know there will be a cure for this disease someday.
I hate to say keep your chin up, because that is obvious but keep on putting one foot in front of the other and put things such as wake up, and brush your teeth, on your to do list so you at least have something to check off each day! also know that you are not alone. Your post helped me realize that, and for that I am grateful.
you will be in my thoughts and my prayers!
Best,
Hipeful…
I am assuming that you are speaking of entire leg or at least from knee joint down to toes...not just specific joint. These could be completely different causes, where joint pain and swelling on single joint most likely is from Ra or some kind of arthritis.
The other full leg swelling could be blood clots to type of medicine....you should always have full leg scans to make sure first of all that you do not have clots causing the swelling. It does not hurt just takes a lot of time.
Also your doctor should insist on wearing compression hose to prevent clots...clots as most people know will kill us and fast so you need to really prevent them.
I can say for myself that i did swell as my anemia became worse and i hated the compression stockings but am fully aware that if a clot broke off i could die before reaching phone so i wore them year round. They tried diuretics to other drugs but nothing worked nor could they find the exact cause of my anemia as there are different kinds.
Swelling that greatly hurts so you are uncomfortable and i still continued to walk daily despite pain. When i lost just ten lbs the swelling did start to reduce as lost more weight it went away completely. I do not know of any logical medical reason why losing weight helped...pressure on something ??? but it worked.
So you might just try losing weight BUT do wear those compression socks and still walk as much as possible to keep muscles working well etc..wish you best luck....like many said it could be a new drug too and once either you get use to it or stop it the swelling will go away.
Hi Vera, I've had leg swelling for the last 3 years. I had doppler testing to assess for chronic venous insuffiency, which I do have in one leg, but there is no explanation for the swelling in the other leg. My rheumatologist has never said much about it because my heart and kidney functions are good. I wear low compression stockings which really help, 15-20mm compression, thigh high. you don't need a precription to get them at a medical supply store. I get jobst black, lace top. they are pretty so you can weat them going out, to work, etc--You should definitely let your doctor know about the swelling because they will want to make sure that there are no heart problem or other explanation. I've found that with the depression, it helps to appreciate each day that you're feeling good and everyday that you're not feeling good, to realize that it will not stay like this forever. It helps me to not look too far ahead. also, even though my lupus is mild with no major organ involvment, my rheumatologist has started me on methotrexate for symptomatic relief and it's been helping significantly. I haven't had any problems with it, just feel a little punk the day after i take it. Talk to your doctor about the best combination of meds. i also take cymbalta which helps with pain and depression. Take care of yourself. mary
Thank you to all of you, I always feel much better knowing I’m not alone in this. I was doing pretty good until December when my mother passed away, after that I feel like everything has gone downhill.
I get swelling too. If it gets real bad and won’t go down you need to talk to your doctor. The kidneys could be having issues. I was hospitalized for this because it ended up getting what’s called. “Pitting edema” and the fluid was trapped in my tissues and couldn’t get to my kidneys. This was due to Vasculitis which is common in Lupus. I almost died during that hospital stay. My kidneys were shutting down. In fact the doctor told me to tell my family I would not make it! How do you tell your family and kids you are going to die? That night I prayed to God to heal me and take this from me. I went into a coma and when I woke up my kidneys had reversed and were healed! Prayer does wonders and sometimes that’s all we’ve got left! I am of the mindset that any new symptom warrants at least a call to the doctor just to be sure. I am very passionate about my fellow Lupies and that we don’t put things off and end up in serious medical crises. Take care and keep us posted! Hugs! Tina
Hi Vera,
yes my legs swell pretty much every day. Starts at my ankles and moves up onto my calves. This usually happens towards the afternoon. I take some ibuprofen (not sure if they help). I have to be laying in bed by 8pm to keep it from getting worse. Interestingly enough, I have very low blood pressure.
Have you tried to wear compression socks? I wear them every day and they help a lot.
I am sorry you have to deal with this.
Good luck,
Andi
have had this at times, and is usually a sign that my kidneys are impaired a bit.
Or I'm inflamed all over and the swellling just shows most in my legs.
in 2002, when I was in a severe flare, I had congestive heart failure and my legs and feet were so swollen I couldn't wear shoes. I got compression hose, and all kinds of mainstream and alternative treatment ad got my ankles back. they are normal now. I occasionally get just a bit of fluid retention around my ankles, esp. during that time of the month, but never the kind that calls for compression hose anymore. Sometimes my fingers swell, though. when they do, I take 3 high-quality fish oil gel tabs and they go back to normal.
Hi! Only had that happen when I new to the Lupus before I was diagnose , and it is 3 years of begin diagnosed. Call your doctor…Beverly L.
Hey! Forgot to say You are RIGHT! Everyday it is something NEW. with having Lupus! Am Really tired having it in my Life …Beverly L.
Thanks for the info. I have a dr appointment today to get checked out.
I’ve been ill w lupus for a long while now and had the same question about leg swelling. After reading the comments we obviously aren’t alone. I’ve resorted to wearing loose sweat pants because my jeans are so tight from the swelling that I feel like a blimp. I just read the comment about a celery tab for swelling. Could you give me some info on where I could obtain this at?
Just got home from my dr appointment, my kidney function is good, no redness or heat with the leg swelling. Doc thinks it’s just a part of lupus in this case. I also got the diagnosis of fibromyalgia, which he says often goes hand in hand with lupus. Again, I would like to thank you all for all the support, info, and just for being here. I haven’t been on this site but just a couple of weeks and I feel very welcome. This site is a blessing for me and I am so very glad to be here. I know from reading everyone’s replies that we are all in the same boat. God bless you all.
Lots of hugs,
Vera