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Posted By : Butterflake - 4/23/2017 11:57 AM
Hi Everyone. When I stopped Benlysta I had a few weeks where I felt fairly well. Now Lupus has come back with all it's symptoms and flares. Currently I am spending about 20 hours each day in bed and I'm waiting for improvements. How long do you spend in bed?
Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : NanaBee - 4/24/2017 9:51 AM
Hi Butterflake, When I am flaring I barely move. I usually don't stay in bed, but move to my recliner and that is where I stay for the whole day. I get too achy if I stay in bed too long. I know how frustrating it is not to have the energy to move. I also spend a lot of time sleeping when I am flaring. I just had a steroid injection and it helped for about 5 days. Now I am exhausted again. Hang in there and try to just relax.
MCTD, Fibromyalgia,Pulmonary Hypertension, Pulmonary Stenosis, High Blood Pressure, IBS, Degenerative Disc Disease, Depression, Anxiety

"No matter what happens, God is in control. He is God, I am not, what a relief!"

Posted By : Lisabeans - 4/24/2017 10:28 AM
I don't spend much time in bed - although I need to. I do spend a lot of time on my reclining chair and nap alot. With 4 kids and a sick husband I have to force myself to stay awake and take care of things. I am also working 2 days a week plus various showings on other days (I am a realtor) and teach CCD classes on Wednesdays (which I have missed quite a bit this year). I hope you get some improvements soon!
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Lynnwood - 4/24/2017 10:29 AM
Even with my "quiet" Lupus, I find I spend about one day every 2 weeks or so in bed. And I do the best with at least 9 hours of sleep a night.

When my Lupus was more active, I often spent the day in bed, after 10-12 hours of sleep. I found I felt better mentally if I managed to get up, shower, put on clean clothes, and move to the couch... but that wasn't always possible.

So sorry you're down at this time of year, Butterflake - I hope you can move to the living room and observe the spring soon. Hugs.

Post Edited (Lynnwood) : 4/24/2017 1:23:21 PM (GMT-6)


Posted By : 10bmd10 - 4/24/2017 11:49 AM
On a routine week, I usually work 45-50 hours a week, but make sure I sleep at least 9 hours a night on weekdays, and 10-12 hours a night on weekends. IF I keep up that sleep schedule, I find I can still survive a demanding job.

.... but... then I do silly things like last weekend staying out to 6AM because I was in NYC and it was my bday. I'm still paying the price for that (but it was totally worth it!)

Overall, I think I've ALWAYS needed more sleep than my peers. I've always seemed to be the one sleeping later, taking more naps, etc. Now that I have a Dx, I just am adamant with myself and others that I get at least that 9 hours during the week and 10-12 on wkds... this wkd was the rare exception.
January, 2017 - Doctor is toying between a UCTD and Lupus diagnosis

Plaquenil, 200mg since January 6, 2017

Gluten-free since January 5, 2017 - I don't have celiac, but doctor advised it might help with the lupus/UCTD

Posted By : Butterflake - 4/24/2017 11:18 PM
Hi Everyone. Thank you so much for the replies. Nanabee your SLE seems to be closest to mine. It's comforting to know that someone else spends their flares resting just as I am inclined to do (pun intended). I must say that my two cats love that I'm in bed so much. They sleep on my bed and have accepted me as one of their own.

Lynnwood thanks for the ideas of encouragement and the Hug 😊 I set my alarm so I will get my fat bottom out of bed and get dressed. I sweat so much that I must take evening baths or sit in my shower chair. I haven't stood in a shower in years because of my poor balance and now knee pain.

Lisa beans I am so sorry that you must push yourself every day. I'm sure that you are exhausted all the time. I hope that your family appreciates you!

We've always been told that the symptoms of every Lupus patient is different and I hope that's the case with you 10bmd10. I hope that you will always live a close to normal life. Yes, I am jealous!

I hope more Lupies chime in because I find it interesting and received some good ideas. I wasn't in the market for a recliner but it sounds nice. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : cilly - 4/25/2017 1:41 AM
about 12-14 hrs a day ,but whe flaring then more.

Once A month or so i an sleep 2 days straight but i don;t and keep alarm as its bad for heart .

when i am better i try to walk or stand .

Latey my balance is off too..
Cilly

Posted By : Butterflake - 4/25/2017 7:27 PM
Cilly be careful with your balance. I've fallen many times, mostly in my house because I only use my cane or walker when I go outside. Just be sure to reach out and grab something if you feel unsteady. That's much less embarrassing than falling in public.

I find it interesting that you sleep 2 days straight a month. It's like you need to recharge. Maybe if I recharged monthly I wouldn't flare so badly. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : MrsC207 - 5/1/2017 7:22 AM
Anyone have advice on how to help your husband understand why you're in bed most of the day when you are not feeling well?

Posted By : Lynnwood - 5/1/2017 10:04 AM
MrsC207

You may want to have your husband read "The Spoon Theory". Here is the link: /cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Molly74 - 5/27/2017 4:13 PM
This is my first post and I want to share a couple of things that have helped me over the years. I was diagnosed with lupus, sjogrens and raynauds when I was 55, I am now 74. I was in remission for quite awhile and I asked my rheumatologist if I could reduce to 200 mg plaquenil generic daily. I have learned that common sense needs to be my guide. Sometimes I forget to check in with myself and how I really feel. Sleep when you need it if you can. Don't expect most people to understand your disease. See a good naturopath for info on diet. Some foods are really bad for lupus sufferers. I have muscle aches and joint pain that have improved with different eating habits and exercise along with a different bed. I have skin flares when I forget to use sunscreen and cover myself for Sun. I talk to my dog when I am having a bad day. Hope you all have a great weekend!

Posted By : Butterflake - 5/28/2017 3:58 AM
Welcome to our forum Molly74. I have lots of GI problems that put limitations on what I eat. I must limit gluten and must take Lactaid to eat yogurt. At least I have finally reduced yogurt to one serving per day. I've found that granola with lactose free milk helps my GI issues some.

I've never been in remission. I get an IVIG infusion each month because my body doesn't make enough and after being off Benlysta infusions for a few months Hubby and I decided it's time to start them again.

It always makes me happy to hear of Lupies who manage a reasonably normal life and your common sense approach is something from which we can all benefit. I hope that we hear from you often. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Furrow - 5/28/2017 5:19 PM
Butterflake said...
Hi Everyone. When I stopped Benlysta I had a few weeks where I felt fairly well. Now Lupus has come back with all it's symptoms and flares. Currently I am spending about 20 hours each day in bed and I'm waiting for improvements. How long do you spend in bed?
Love, Butterflake
Whenever I have to do something and my body just isn't working I take Adderall. It's a miracle energy pill that makes me feel normal again. I use them very sparingly however. Only when I absolutely have to.

Posted By : Butterflake - 5/29/2017 5:39 AM
Hi Furrow. When I have a medical appointment (and I have many) I take Provigil. If I take it daily I quickly develop a tolerance so like you I only take it when I must have an energy boost. I None of my docs ever suggested Adderall, but I can certainly see that it would increase your energy! I wonder if I could occasionally take it switching with the Provigil? I'll ask my rheumy and my shrink. Thanks Furrow! Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Dustmite - 7/3/2017 10:18 PM
Hi Butterflake. I go to bed at 9 pm and get up at 5 am on the weekdays and on the weekends I usually sleep in until 7:30. For the days I'm feeling tired, I try to get my most important things accomplished by breaking the jobs down. Sometimes it takes an entire day for what would be a couple of hours worth of work. Then I try and crawl into the shower. When I'm flaring I try not to stay in bed. I drag a pillow and my favorite blanket and sleep in the recliner. An idea for purchasing a recliner. Go to Goodwill. A lot of times you can find a chair in decent shape for around $30. Then stop by Walmart and buy a chair cover. Your investment will still be less then a brand new chair. I found this site in December when I was first diagnosed with lupus. This site is wonderful for getting ideas. I found out last July I have stage 3 kidney disease. My kidney are only working at about 50%. So I use the lupus and kidney sections whenever I have questions or need a little support from those who are going through what I am. God Bless You. Dustmite.

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