Went to medical dr yesteday and now my lymph nodes in my arm Pitts are swollen and painfull all my joints hurt real bad. I am on 30mg prednisone and tomorrow I step down to 20mg. She did some blood work will hear from her on Thursday. Went to allergist today still have rash that keeps coming and going. I am exhausted all the time they are trying so hard to figure this all out since I don’t see the Rheumy till November 18th and can’t get in any sooner!! I feel like my body is on a war path against me I have been out of work for a week now and the allergist is keeping me out another week because I just can’t even function at this point I’m so sick! I just don’t know what to do anymore my mom of all people said to me doesn’t he realize you need to work and can’t live off of nothing!! I was speechless when she said that. Well duh he knows that I know that but you know what you try and work with the way I feel and see how well that works out for you. My guess is I’m in a really bad flare and need more then just steriods but don’t get the lymph node issue where does that tie in?!?!?
My lymphs just flare sometimes it will get better. I promise.
I am so sorry for you! I have now been out of work for seven months and dont see going back any time soon. So I know the feeling. My lymph node also hurt on and off. I hope they get things working for you and you can start feeling somewhat normal! Praying for you!
Nicole, the lymphadenitis (swollen lymph nodes) is a real pain in the patooty, but many of us go through it, so please know you are not alone. It tends to come and go, with a mind of it's own. It sounds like your doctors are on top of things and trying to help you get back to functional as quickly as possible.
When mine flare, 5 minutes of moist heat seems to help, if near the surface. You can also put a call into a nurse at your primary care or rheumy's, and ask if supplements to boost your body would be allowed. Zinc helps our bodies deal with stress, helps ward off fungal invasions and rashes, and improves brain function. B12, Vitamin D, do wonders on many levels. Do your best to get sound nutrition in, avoid any allergens you know of, and rest while you are out of work! Homemade soups, from scratch, can be very nutritious, easy to digest, and packed with the good stuff. (roast bones first before making stock, comes out wonderful!)
Most of all, know you can get through this rough patch. What we say to ourselves in our heads creates what goes on with our behavior, and as a result part of our health. So positive thoughts. I'm sure everyone here will give any support they can.
gentle and warm hugs, Louise
Good morning. I can hear your frustration. I understand how you feel. I, too, get swollen lymph nodes often. For me, it’s just part of what I go through. I’m sorry you have to wait to see your rheumatologist. That stinks because it seems like you are really suffering and I don’t know if tapering down on prednisone right now is a good idea. Does the prednisone at higher doses help you feel better? I hate prednisone, but sometimes we need it. Maybe you could get your rheumatologist to call you and advise you until your appointment.
I’m sorry for the comment your mother made. Sometimes people close to us have trouble dealing with our disease because they feel so helpless. Not to make excuses for her. That’s just been my experience. How is your job dealing with you being out? I hope they are more understanding.
I’ll keep you in my thoughts and prayers. Hang in there. Kim
Nicole my prayers and gentle hugs go out to you. I so hope this ends for you soon and you finally have better days!
Nicole,
Your mom was just concerned for you and just frustrated.... here is her baby in pain and she can't do anything to make it better and seems like no one else is either?
It sounds like you are in a really bad flare, and you need the chance to rest and take care of yourself. Get plenty of fluids, dehydration causes fatigue. You have good advice here from others, take it one day at a time. We'll keep the faith for you..
Thank you so much everyone you guys really do help me to keep the faith!! I know this to shall pass was just so frustrated yesteday. I know my mom means well but she is the type of person that if u don’t look it you aren’t. So in not so many words she was trying to say suck it up and go back to work lol! I woke today with even more pain specialy in my back and knees are swollen I haven’t slept much in the past 3 days now since it hurts to lay sit or stand just can’t find comfort. Thank you again everyone : )
nICOLE THERE ARE LOTS OF US THAT GO THROUGH SIMULAR THINGS GIRL-YES IT HURTS-AND MIND BOBBLING-HAVE FAITH YOUR IN THE MIDDLE OF SOMETHING-ASK YOUR DOCTOR IF YOU CAN TAKE TURMERIC-IT IS GOOD FOR SWELLING EVEN THE NODES-BUT ASK DOCTOR FIRST-
Hi Ann-whats the "spoon Theory"?
I had the same symptoms except for the swollen lymph nodes. Have you asked about plaquneil (spelled wrong I know). I too was on predisone and my rheumy put me on plaquenil it has helped a lot. I take 200 mg 2x/day and my flares are not so bad. I can still work but I do require rest if I do a lot (like walk all day or travel a couple of days in a row which wears me out pretty good).
Anyways I hope you find something that works for you cuz lupus pain/flares are no fun!!
Thanks Anna for all the great info and yes I have shared the spoon theory my other halfs reply to me was well I have pain too and what about me there was no compation what so ever! The entire thing got turned around to about him and how he has pain too and doesn’t complain like I do he just deals with it well gee thanks!!! And well my mom didn’t even say anything about it was just kinda like whatever. I don’t have a very good support system right now I feel very alone except on here I am so thankful for everyone on here!!!
Nicole -
I completely understand how you feel. I too suffer with a Mother who thinks that you can take Advil and it might make you feel better. She is constantly saying how my hair looks bad and my face looks horrible. I suffer from Discoid Lupus as well as systemic. So sorry but I can't help it.
I had to go on disability because of not only the Lupus but I also have an incurable brain disease as well. Please don't lose faith! I have had a rough go of it in the last few months so I completely understand. Some days we just have to push. Please check out The Spoon Theory though. This will help not only you but maybe your Mom. (It didn't work with my Mom but plz try)
I also have an inflamed Lymph Node that the rheumy is watching. I have been in a bad flare nonstop for about 3 yrs now
I take 2000mg of Cellcept and 400mg of Plaquenil.
I hope you feel better soon. I will pray for you as well as everyone else because we all need it.....
((((GENTLE HUGS))))
Anissa
Doctors are oblivious about our need to work. Hope things start to subside soon.
You have to hold on.
@zipperhead I think your mom and mine would be best of friends lol!! I have shown her the spoon theory and she just kinda brushed it like whatever!! Oh well you win some you lose some. Sorry you have been so sick for so long gentle hugs right back at you!!
Ya, right with ya girl. I've been out of work for over a year now. Mainly because of the auto immune disease, but due to other reasons over the year as well (boyfriend was in a bad arc flash at work, during the few months I could've worked, I had to nurse him 24/7.) But anyway, get ready to live on a tight budget. I'm honestly barely making it by with regular bills, medical bills, docs, etc and just recently started a "give forward" donation fundraiser for myself and my man to try and get a little help. It's not something I'm really proud of, but I've only had it up 2 days and have family and friends donating. Even if your immediate family doesn't understand, others may.and Regardless if they donate or just send love, it really does put a smile on your face to know some people do care, and want to help. :) I'M not saying start one now for yourself after only a week or so, but just in case, I wanted to let you know there are some options to try and cover expenses. Humbling as it may be.... :) I hope your flare, and overall disease gets better quickly for you though, and you won't have to worry! :)
Oh and just read the spoon theory. Love it...what a great way to explain it. My pattern lately on days, seem to be good, good, bad, ok, good.... I'm soooo thankful for the good ones now! :)
Lymph nodes will swell due to infection or can from allergic reaction i believe. I had one in my neck that was swallen and hard for several years. Basically, they fight off infection, like tonsils and your spleen. It also could be just due to the lupus being flared. The best thing you can do is research medicines and even things like soap and vitamins. There are things in them that can react badly with lupus.
Please try not to stress. Stress makes everything worse and I know the damage it causes so do what you can to eliminate as much as possible. I’ll pray for you dear. Rest up and try to not worry.
Your symptoms sound like a major Lupus flare. I don't think you should decrease Prednisone in a flare but ck with your Dr, Your labs should confirm if you're in a flare. I've had swollen lymph nodes under my arms & I know it's painful. The fact that your joints hurt & you're exhausted sounds very much like flares I've had. Sometimes those closest to you get so frustrated they can't help you they get angry. I'm sure your mom didn't mean you should drag yourself to work that sick. Does your company have LTD, if so I'd check with my Dr to see if you might qualify. Don't push yourself if you're in a flare, it's dangerous. Ask your Rheumatologist for a steroid sparing agent to allow you to decrease the Prednisone. Good Luck, this to will pass, hope you feel better soon.
I just hope the medical dr did all the appropriate blood work to check. The allergist is the one that put me on the steriod and is stepping me down off of it I guess we will see when I get down to only 10 or 5 mg over the weekend. So far as I have been stepping down I’m having increased joint pain and the lymph node issue. I am also waiting on authorization for a chest ct because they hear something not quit wheezing but something . My job is very physical I lift heavy crates of milk and warming bags with food and I stand none stop so it’s very taxing on ur body. It is only part time but even the 4 hours kills me!