I had been hurting so badly this past month, but I found 1/2 of a pain patch in my med box last night. I was finally able to truly rest last night, with pain level of about 3. I am going to request that we return to the pain patches, but at a higher dose, when I go to my appt on Thursday.
How are YOU?
I have the normal amount of pain today, and when I first woke up I was very stiff and sore. I need both crutches first thing in the morning to be able to get up and get moving. My physical therapist suggest I take a water bottle and freeze it, and then roll my foot on it as part of my therapy. I did that this morning, and I was just able to walk unaided around the house, without even a cane woohoo!!!!!
Was diagnosed with depression today, I felt relievd for some odd reason…I might jus get proper sleep tonyt. Yeay, I think 
Woke up feeling very foggy this morning and had a really hard time getting myself out of bed. Once I did, though, I'm not feeling too bad. Pain levels have been MUCH more manageable lately, thank God! I was even able to have a full day out running around on Friday and not have too much pain. Also had dinner plans with friends Sat night and an evening with our daughters and grandkids and made it through. I do think I'm recovering from the weekend now and hence the foggyness and sluggishness. Hoping the rest of this week keeps getting better :-)
Hope everyone has a fabulous day!
I have the flu so am not feeling great. Am wondering if having Lupus makes us
makes us more susceptible to these bugs. Seems the immune system would protect us.
I am feeling not so good :-\ I have symptoms on the left side of my body including tingly numbness in face and arm. Pain in upper back and random headaches. I feel like I’m annoying my rheumy when I mention new symptoms to her. I feel so depressed right now. This disease is so frustrating. I want to lay in bed and cry all day but I have stuff to do.
I see the liver specialist tomorrow I am wondering what they are going to tell me and what kind of medicine I will be having to take.? I hate to take meds. I just hate not having a lot of energy and therefore I don't get stuff done like I would like to be able to.
I have been experiencing symptoms of pericarditis, however it has been mild, but will not go away! I really do not want to go back on prednisone. Hopefully anti-inflamitory meds will help!
Has anyone experienced pericarditis associated with their lupus?
I still have the skin rashes and vit d deficiency but i feel happy because i got promoted at work despite my secret lupus struggles!!!
Not feeling very good today,but the weather has been so crazy,temps up and down. Im very affected by cold weather.It makes me feel like I have the flu with chronic tiredness,and lots of pain.Checked my temp and I have a low grade temp,so guess its the whole day in bed.
This past month here has been cold n damp…its been a struggle…can’t wait for summer
My aches are starting to kick in, but other than that I'm feeling fairly well. I found that if I take a nap anywhere between 12 and 2, it keeps the aches from getting too bad. Naps are awesome! I'm getting stressed about my test in school on Thursday. I feel like I know nothing! My professor from last semester gave me a ton of information on the anti-inflammatory diet and a lot of natural stuff that has been shown to help with pain and fatigue. I'm really excited to start reading all the information, but I need to study for this test first. Grr. She also gave me the name of a local place that has acupuncture, massage, nutritionists, yoga, and an herbal pharmacy (I hate putting all the chemicals from medications in my body). I think I might call over Spring Break and see if I can meet with someone and check things out for myself. Oh, and I'm excited about the snow storm coming tonight!
I
Ann A. said:
Maria, Maria
As soon as I read your name my brain starting singing songs from West Side Story. I am old and a bit nutty - but yes I have experienced pericarditis. I have had it be mild enough to go to work for all or some of the day. And I have had it be severe enough that I needed to be to be hospitalized. I used to complain about the pain in my knees until my lungs started hurting from pleuritis. I remember saying, “Okay God, I got. Walking is optional. Breathing is not.” But I complained about the pleuritis until I experienced pericarditis. I can clearly remember promising God that if he would let my heart expand and contract freely that I would never complain about knee pain again.I am so sorry that you are experiencing that! Pericarditis has made me grab an ER doc by his lapel and beg for, demand Prednisone. I have taken so many NSAIDS that if you say the name of any one of them from aspirin to Voltaren an ulcer appears in my stomach. Pleuritis and Pericarditis are what taught me how to sleep sitting up after packing my entire chest and back in ice.
Over the years I learned that it helps me to get the Prednisone as soon as the symptoms start. For the past few years it has been the case that if I can get them very early, I only need a short course, 14- 21 days.
These cold rainy days as we move into spring is prime time for me get it - actually anytime the season is changing. But I also have a problem with it when the big summer storms head this way. When the barometric pressure drops. I am in trouble.
How are you managing? What NSAIDS are you taking. Do feel better if you sleep sitting up? Does icing help? Does anything else help?
Ann A.
Maria said:I have been experiencing symptoms of pericarditis, however it has been mild, but will not go away! I really do not want to go back on prednisone. Hopefully anti-inflamitory meds will help!
Has anyone experienced pericarditis associated with their lupus?
Not too bad at all; - thanks for asking!
Actually I feel like @#%! however I can walk & drive & talk & laugh so all is good.
Hope as many of you as is possible have some lovely days this week. Kaz xo
Maria,
I just got over pericarditis. It was mild too, but I went through several different NSAIDs before we found one that worked. Once it worked, I was a happy camper. I hope you get an anti-inflammatory that works quickly!
Maria said:
I have been experiencing symptoms of pericarditis, however it has been mild, but will not go away! I really do not want to go back on prednisone. Hopefully anti-inflamitory meds will help!
Has anyone experienced pericarditis associated with their lupus?
Thank you for your reply. My first experience with PC landed me in the hospital, so this one is the same but milder. I am just taking Aleve now but that doesn’t see to be long lasting. I’ll see what is next!
Thanks
Maria
Ballerina8876 said:
Maria,
I just got over pericarditis. It was mild too, but I went through several different NSAIDs before we found one that worked. Once it worked, I was a happy camper. I hope you get an anti-inflammatory that works quickly!
Maria said:I have been experiencing symptoms of pericarditis, however it has been mild, but will not go away! I really do not want to go back on prednisone. Hopefully anti-inflamitory meds will help!
Has anyone experienced pericarditis associated with their lupus?
I signed up for this forum last year after I got diagnosed, and haven't been on since I signed up. I have been mostly in denial since then, and really angry and in a horrible place with the world. There's some honesty, haha. I still feel that way, except now i can't really be in denial anymore, because everyday I wake up and I still have lupus (it's not going anywhere).. and there is so much to deal with. I have so many questions and nobody to talk to about it, and it's all so terrifying. Doctors are really useless.
SO, yup. That's how I feel.
Well friends I’m going to vent,I feel like crap,I’m in such a bad lupus flair,and I know it’s because my stress level is out of control,"29 yr old daughter and my 8yr old grandson have been living with us on and off for 5yrs,she has used our home like a revolving door,changing our house rules to fit her life style,she has not worked at all in the 5yrs,sleeps until noon,paid not rent,brings home a guy we never met in the middle of the night and he never goes home,she just moved him in to our down stairs without permission,I have been in so many arguments with her,she doesn’t tell me to F off,but she might as well,my husband is a fireman so he sleeps at the station on his shift and she chooses those times to hassle me,"I just couldn’t take it anymore and told her to get out,I always felt guilty about making her leave because of our grandson,but I finally moved her out last weekend,she has sucked the life out of me,I’ve struggled so hard to get well,I tried and tried to tell her we couldn’t support her,she needed to get a job or go back to school,she just wouldn’t get out of bed or clean up her and her child’s mess,"ever"my house is 2800 sq feet,to much house for me to take care of on my own,some how is has this way of making me feel like every single thing she does or every mistake she makes is my falt, she has this entitlement about her that’s scary,she acts like we owe her…on top of that the guy she moved in just spent two yrs in the Oregon state men’s prison for domestic abuse…omg,I’m so stressed out about it…so any words of wisdom friends?? I am tough loving her…if I don’t, I’m afraid of what might happen to my health,"I just need to lay it at gods feet and see how he guides her…xoxo celeste
Hi Julie
Thanks very much for your reply. I'm not really sure where to start as far as the questions go. It's all just so overwhelming. Doctors told me that my life will never return to normal functioning again (or like it was before) I was diagnosed, (amongst all the other really depressing things that they say). And I think that I tried really hard to think that that wasn't true (and ofcourse, you know how all the people around you say like "be positive, don't listen to the doctors, this will only stop you 'as much as you let it'.) . Because the fact is that everyday I wake up, and it stops me even if i don't let it. It's really impossible to do a quarter as much as I used to. Like some days walking to the bathroom is a HUGE accomplishment, or like just sweeping my floor feels like I ran a marathon. And I had all these hopes and dreams for my life and I had been working so hard to go to graduate school and I'd had my career mapped out and now I have no idea what is going to happen to me or if I'll even be able to hold a job, because I can barely sit through two hours with a friend without needing to sleep after. Like, online, the statistics about people with lupus having to be unemployed because of their disease are like 2/3 or over 80%. Is this true?
I mean, like I don't know where to begin. And when I start thinking about it (let myself think about it) I get so depressed. And then there's the fear every time I walk into the doctors about whether or not i'll get some resul tback and be in big trouble. But I partially want to be sick enough to die, because i don't want to wake up feeling this bad forever, if that makes sense. Like I never wanted this for my life. I don't want to diminish the life that everyone else on this forum has, because i'm sure you guys are all really positive and have found a way to live with lupus that is awesome, but i realy haven't yet so at the moment, the thought of waking up like this forever is enough . How do you deal with the fear and the uncertainty of the illness? That like, well I may be well for a short period, but i'll get sick again? It's impossible to plan and have a life like that. And how do you deal with the idea that you may get sick enough to die?
I dunno. This is some of the questions. Like wrapping my head around the whole thing is so hard. And there's also the whole 'well, the world is a really unjust place' part to it, because i didn't ask for it. It's definately not the first thing that has happened in my life, so i think that's why i'm taking it so hard. I feel like i definately don't deserve this on top of eerything else.
Alright. So that's my realy positive message for the day.
Sorry if this makes everyone else really depressed, lol.
Thanks julie
jujubeee said:
I'll agree with you about the doctors (most doctors) are pretty useless. They don't listen often, when they don't know an answer they don't handle it well, their communication skills often lack, their offices are run poorly, they don't coordinate with your other specialists and GP like they should, they have different opinions of treatment and diagnosis. Some stick to only labs and don't look at the symptoms as part of your condition, others can't see the whole picture, some consider all chronic pain patients as addicts.. and I haven't even gotten to bedside manner.
That said Lillian, the problem with being mad about having lupus is it doesn't get anything done. I've found that being mad AT lupus is much more fun. I put my efforts into managing symptoms , medications and treatments. I have a family counting on me and no time to let lupus wind the day.
I know it sucks Lillian, it really does. None of us asked for it. But there is one good thing. There are many interesting and kind and wonderful women here who if you take the time, you will find that they understand you in a special way and care about you in a special way because they "get"you. They totally get what you go through everyday.
So what are you interested in knowing more about your lupus? There's tons of discussions here and at other really good support groups online that you can hang out at once in awhile. Click on the discussions on the top bar and you can see if you identify with any of the discussions or even start one of your own by clicking on the ADD button. You will get replies because people here do care and understand what you are going through and they may have some ideas about management or medicines or treatment of your symptoms or be able to explain some of the stuff lupus does to us in a way you will understand that your doctors can't and don't do!
Much Love and HUGS, Julie
Sorry your feeling bad Ann,I’m sure all the snow your getting doesn’t help,the news said you were getting a pretty bad snow storm,I hope you get to feeling better soon and thank you for the advice…I am having a hard time with the way she lives her life… My prayers are with you .celeste