I posted a statement on the last person’s pain management discussion. I’m not going to type it all over again but if anyone would be so kind as to read and respond, i’de be grateful…thanks guys…sadly sighing…wondering how everyone else copes with the severe pain, muscle weakness, fatigue, insomnia, depression, weight gain/moon face from steroids, weepiness from high doses of steroids, anger and frustration at not being physically able to do what you would like/or need to do, at knowing it is only going to get worse from here, and that the only person you can be mad at is your own stupid dumb body for betraying you!
Oh and how could I forget, lol cause I’m having a lupie moment!!! Hardy-har-har! (Hey if I can’t laugh at my self who can I laugh at right) seriously though all kidding set aside, the 2 I forgot were cognitave fog, and family/friend social lepardcy…
My orignal post was on Mindy Wolff’s discussion about how eveeyone manages pain.
Let go of the anger. It is what it is. Very important to listen to own body and act accordingly. If you are having a good day take advantage of it and accomplish tasks on list or just take day and enjoy it. Pace yourself and rest when needed. I too know how difficult it is to be unable to do things used to do. But it is important to ask for help when needed. It not we overdue and pay the price. Take one day at a time.
Rest and rest and more rest. If you have a lupus trigger of flair, listen to your body, you overdid something. Use the time to catch up on movies, reading a book and stop letting your mind play games with you. You are sick and thats it. What were you doing before when you were having a cold or flue? You stay a day or two in bed. Do the same with your flairs. The biggest mistake I made is to make list of stuff that needs to be done. If you can't do anything on that list you feel like a failure to yourself and your family. What I've learned is to wake up and see what my bodies tells me what I am capable of doing. If this means only dusting today, thats what I am doing. If you feel down, do something you like to do, example reading, playing computer games, etc. Try this, you will feel the difference
Here you go Heather. Your original post.
Permalink Reply by Heather 6 hours ago
Hi guys! I want to jump in if I can since I’m having insomnia (what else is new lol), my pain level has been so high lately but I’m literally hours away from running out of my fmla for like the next 6 months and I’m so physically exhausted and this round/flare not only has brought the bad pain, and exhaustion but depression…and weepyness from all the prednizone . I never wanted to throw in the towl before, or just curl up in a ball and die some days I have been so miserable between the pain, depression and sadness at the loss of all the things I can no longer do and at our age am so angry and frustrated and feel so cheated that it has been stollen/robbed/taken from me and I can’t even go be mad and tell off the person who did it cause it is my own stupid dumb immune system!!! AAAARRRGGGHHH. SOBB! I keep hearing about pain clinics, is that something your rheumy refers you to? Also I’m going thru a divorce right now so my predinzone overweight moon face is really down in the dumps and my sister gets married sturday, but I didn’t get to be in the wedding party because -are you ready for this - I have lupus so I to sick to ask and they didn’t want me falling down in the pictures or ceremony etc… its my only sibling and its her only wedding! Like what do I have a cane for? A fashion statement! I have Lupus not missing legs! All this has made me even more stressed and the more the stress then suddenly TA-DA!!! You guessed it Cognative fog so bad that I can’t even do the simplest of task since I’ve returned to work off short term disability…which makes me even more inadiquate…how do all of you deal with the pain, depression, muscle weakness, sadness, family leprasy syndrome and cognative fogs?
Heather said:
My orignal post was on Mindy Wolff’s discussion about how eveeyone manages pain.
I have to think about this one a bit. I am still reeling from the emotional pain you are dealing with about your sister's wedding. That I truly can not understand at all. My sisters and I would never do that to one another. We would have someone push a gurney down the aisle for our sisters to be there as witnesses if need be rather then leave one out. Dear God, I am sooo lucky to have them and my brother!
Even part time work is impossible when I am in a flare so I am at a loss but then I am of retirement age too.
I will keep you in my good thoughts and prayers. I truly wish I could be of more help.
remember the movie Alien? well that is how on bad days i tend to think about my body...like an Alien is in it. BUT...remember main woman in it too and how strong she was, following her gut instincts and willing to fight for that small child etc? well i like to think i can get butt with the SLE like she did in Alien! visualize all bad stuff slowing down ..good stuff fighting it etc..lol!
Actually, i started journaling long before having diagnosed lupus and that greatly helps me. Something about writing it down instead of saying it makes it more real. I realized, yes lupus can be a pain but it also made me slow down appreciate the bugs in my garden as well as the flowers!
I had to change my position at work so I could handle assignments from home via computer that were less time sensitive. Now I am able to complete work tasks while in my pajamas , from my bed and at all hours of day and night . I still put in a 40 hour work week but it is on my schedule. This also helps to work from home so I don’t waste precious energy taking a shower, drying hair and putting on makeup which on my bad days can be exhausting.
For past year, doctor switched me from lyrica to plaquenil to ease pain. This has worked for me. Never been on prednisone and sounds like I don’t want to.
My biggest issue is the fever which just drags me down and acetaminophens nor ibuprofens alleviate the fever. Any tips on how to combat the low grade fever?
Oh, I so like that last part....appreciating bugs in the garden. Yep, I started doing that a long time ago too...noticing the small and seemingly insignificant things all around us.
siskiyousis said:
remember the movie Alien? well that is how on bad days i tend to think about my body...like an Alien is in it. BUT...remember main woman in it too and how strong she was, following her gut instincts and willing to fight for that small child etc? well i like to think i can get butt with the SLE like she did in Alien! visualize all bad stuff slowing down ..good stuff fighting it etc..lol!
Actually, i started journaling long before having diagnosed lupus and that greatly helps me. Something about writing it down instead of saying it makes it more real. I realized, yes lupus can be a pain but it also made me slow down appreciate the bugs in my garden as well as the flowers!
I get fevers, too. If I have a fever and pain I’ll take ibuprofen for it. If it’s just a fever without much pain I don’t take anything for it.
TN Mom said:
My biggest issue is the fever which just drags me down and acetaminophens nor ibuprofens alleviate the fever. Any tips on how to combat the low grade fever?
You sure are dealing with a lot at once: your lupus, going through a divorce, and your sister not allowing you to be in her wedding because of your lupus/cane. I saw the details in your original post that I copied and pasted for you. (It’s the fifth post down this list.) First of all, belonging to a support group and venting here is a great start. It’s not good to keep everything bottled up. Second, keep in mind that lupus is like a roller coaster. Yes, there are lots of bad days, but you will also have some good days. What worked for me was listening to my body and resting when I need to, taking pain medication when necessary, using a heating pad, reminding myself to appreciate and be thankful for the good days I do get. Prednisone can really mess with your moods. Try not to be too hard on yourself because others don’t know what we go through because of lupus and the meds we take for it. I think the key thing is accepting your new self even if others can’t. When I stopped trying to get others to understand how bad lupus makes me feel I got a certain sense of peace within me. By doing this I empowered myself mentally. I admit that being a part of a lupus support group plays a HUGE part in my adjustment. Reading how others are dealing with the same issues is comforting. Plus I’ve had 5 years since diagnosis to come this far. As far as depression goes, that’s just as hard to deal with as the physical pain we go through. What helps me through that is friends and family, supplements, getting out of the house even if it is just to sit in my backyard, this support group. Don’t forget about anti-depressants, too. For my cognitive problems, I write things down so I don’t forget and I use a kitchen timer while cooking. Just yesterday I couldn’t find my car in the store parking lot again. Hate when that happens! As for your sister not allowing you to be in her wedding, sounds shallow and insensitive on her part. I’m sure in the future she’ll come to regret this decision.
Wow, you just described how I feel!!! I haven't figured it out yet myself. I'm trying to work on being thankful for the things I do have and don't have yet (with regards to the lupus...I'm not as bad off as I hear a lot of people talk). I'm trying to learn what my boundaries are and stay within them...especially important is not letting anyone try to push me outside those boundaries. My family is a big support, expecially because my sister was diagnosed with stage 4 breast cancer and my Dad is fighting some type of autoimmune disorder that just hasn't been diagnosed...they too have gone/are going through many of my same symptoms. I'm trying to learn I really have to take it 1 day at a time and listen to my body. But I'm angry...I hate what lupus has done to me, how it has changed me, what it has done to my family and friends because of the changes I have gone through. I tried so hard to take care of my body and be healthy, then this happens? And I have NO control! I just hate it!!!
If I find any magic answers, I'll be sure to share...and I'm sure you will too. Hang in there!
Sending hugs :-)
Hi Heather,
I read some good advice from others about how to cope, I hope that its helped you. One bit of advice that helped me when I was first diagnosed, is that I had to learn to accept this as the new normal. For me, once I accepted that and stopped fighting it, it was freeing.
I have exhausted my FMLA, and close to exhausting my short term disability. I know I won't be able to return to the work I was doing, and I'm starting a job search now. It doesn't have to get worse, if I make the necessary changes now. If I ignore that I have lupus and keep pushing, it will get worse. One day at a time, is good advice.
I would go! I got phenergan patches about 2 months ago and they work very well for me. One lasts for three days. I don’t ever want to be without them again. I am able to more in a couple of months than the last three years. Good luck to you.br/>
Keepkeepinon said:
Here you go Heather. Your original post.
Permalink Reply by Heather 6 hours ago
Hi guys! I want to jump in if I can since I’m havings. insomnia (what else is new lol), my pain level has been so high lately but I’m literally hours away from running out of my fmla for like the next 6 months and I’m so physically exhausted and this round/flare not only has brought the bad pain, and exhaustion but depression…and weepyness from all the prednizone . I never wanted to throw in the towl before, or just curl up in a ball and die some days I have been so miserable between the pain, depression and sadness at the loss of all the things I can no longer do and at our age am so angry and frustrated and feel so cheated that it has been stollen/robbed/taken from me and I can’t even go be mad and tell off the person who did it cause it is my own stupid dumb immune system!!! AAAARRRGGGHHH. SOBB! I keep hearing about pain clinics, is that something your rheumy refers you to? Also I’m going thru a divorce right now so my predinzone overweight moon face is really down in the dumps and my sister gets married sturday, but I didn’t get to be in the wedding party because -are you ready for this - I have lupus so I to sick to ask and they didn’t want me falling down in the pictures or ceremony etc… its my only sibling and its her only wedding! Like what do I have a cane for? A fashion statement! I have Lupus not missing legs! All this has made me even more stressed and the more the stress then suddenly TA-DA!!! You guessed it Cognative fog so bad that I can’t even do the simplest of task since I’ve returned to work off short term disability…which makes me even more inadiquate…how do all of you deal with the pain, depression, muscle weakness, sadness, family leprasy syndrome and cognative fogs?
Heather said:My orignal post was on Mindy Wolff’s discussion about how eveeyone manages pain.
Laura,
I am so sorry about your sisters attitude! But it is your reaction that really counts. Do something wonderful for yourself that day!
I was dx with SLE in 95, divorced a few years later. This left me alone to oversee the care of my adult child with many challenges. I had to find my new normal, which did not include my family. I widened my support group with friends from church, friends from our local lupus support group and joined lupus groups online.
My fatigue level is high right now, so it is difficult to go out too many times each week. So I found hobbies to do. I do contests and legitimate online sweepstakes, write stories online, do some artwork and learned a few new easy recipes. I am researching Blogging, as I feel this would best suit my situation. I have many life experiences I can write about. My daughter was in special Ed. throughout school. Now I volunteer occasionally and help other families through the special Ed.maze. Living “One Day At a Time” is excellent advice.
Taking time each day just for you is also a good idea. Maybe it will be reading, listening to music or just a nap. I have found this essential.
Lots of prayers and hugs!
Have any of you experience vertigo?Lately i wake up so sick and throwing up hot flashes dizzy yuk!!And i have had lupus after the birth of my first and only son in 2002 every year gets worse.My will to live is gone but my son needs me.I am a single mom and have no life cause i am always sick.I also feel robbed of my life and am very mad when i see my friends full of energy and blah blah blah.Then my doctor acts like he knows what is best when he knows nothing!!Sorry that is how i feel very bitter 
hope you all the best
Jamie, everyone in life is given situations that don 't seem fair. Some seem worse then others. Right now I hope that you find someone that will help you with your physical problems with the vertigo and nausea, etc. and also the emotional issues you are having. Many of us have had to do that and your son needs to have his mom in a better mental and emotional state and physical state. I have been in your shoes and I truly understand your frustration. My thoughts and prayers go out to you. Gentle hugs, Reet
Oh Jamie! Hey girl, hang in there! I had migraines without the actual headache pain from the fibro later diagnosed. Neurologist started me on meclizine for diziness. But what really helped was the verapamil for the migraines. U may be having them and not know. I had a great rheumatologist but it took me almost 10 years of misdiagnosis before I finally got in with the right team of drs. You are NOT ALONE in this anymore!!! Everyone here is here to listen-thank God for that blessing!