Having a difficult time
I am new here and sought this forum on Google. I have SLE and have been diagnosed a with Cold Agglutinin Disease. As a result of my illness I have profound anemia and osteoporosis. I also have diabetes and due to taking prednisone have developed glaucoma in my right eye. I believe I have had lupus for twelve or more years though I was not diagnosed until 2005 after several years of misdiagnosis. I changed doctors several times until one brilliant young doctor, still my primary caregiver, sent me to a reumatologist. After an extensive blood and urine test they informed me I had lupus.
Yesterday I was having trouble getting to sleep. At two or three in the morning, with an old movie on the TV I finally fell asleep. Several times I got up to urinate as is usual. The last time I went to the bathroom I noticed it was getting light through the closed blinds. Happily I was still sleepy and returned to bed. Not more than an hour later I awoke again and laid in bed completely awake so I got up and began brewing some decaffeinated. I turned on the TV, having turned it off on one of my trips to the bathroom, and changing the channel to the news found that Rachel Maddow was on. The clock on the wall said it was seven-twenty. I opened the blinds and it was dark. I had slept from three in the morning to at least six in the evening. This is the first time this has happened to me. So then I looked up this forum to see if anyone else has had this type of extended sleep period happen to them. Thank you for whatever information you can give me.
When I first started on this "journey", over 20 years ago (not diagnosed with lupus back then), I'd go 20+ hours without sleep from insomnia all the time. Very frustrating when you *have* to get some rest for work... I'd go like that for a week or so, then do what you describe, and sleep off and on for 18+ hours, and maybe do that for several days in a row, getting absolutely nothing done. I was diagnosed initially with rheumatoid arthritis.
For me right now, with a combination of 400 plaq, and 10 pred, I wake up nightly at least once, sometimes quite often, in order to pee. The prednisone raises the blood sugar, which the body tries to lower by "washing" it out. I wasn't "officially" diabetic until this past year. Have you had your blood sugar checked lately? Is your CAD primary, or from the lupus, now that you have that diagnosis?
For me, my pcp is a life-saver. If I wouldn't have changed doctors, I would probably have died from Hashimoto's complications... a good pcp makes a world of difference in getting to the right "specialists"... btw, I'm CVID, where I don't make enough IgM and other immunoglobulins. My sister has Waldenstrom's, which will eventually be fatal. In it, she makes "bad" bone marrow, and the side-effect is excessive IgM production, which leads to extreme fatigue and weekness, with severe joint pain. She also has SLE, which complicated her Waldenstrom diagnosis. Not to worry you, and you do have a CAD diagnosis, but don't let doctor's overlook any other symptoms. Stay on top of things, and write stuff down if you have to, or do like I do, and go to the doc with your spouse with their "smart" phone that has the notes and pictures taken for the last month... |;^)
btw, Welcome to WHL
I am 60 years old and yes I have diabetes. The prednisone I take spikes my blood sugar wildly. I am unsure if the CAD is primary or from the lupus. Tomorrow I get my second transfusion of the month. My present hemoglobin is 6.9 or lower. I am going to Stanford Cancer Center next month for a meeting with a doctor who will take my case before a council. I do not respond well to medications whether they are pills, shots or infusions. While I have sleeping pills I resist taking them unless I feel it is necessary to get some sleep. The pills do not help very much anyway. I wish the days were back when I lived my life recklessly, skydiving and riding choppers with wild abandon. I would rather deal with some road rashes than this constant fatigue.
Sleep is one of those things many of us have trouble with. It happens because of the Lupus itself and then is often made worse by the meds. There are tons of threads on here about dealing with the lack of sleep (none of them containing answers). Sometimes we stay up so long that our body gives out and the fatigue takes over and then we hit long periods of sleep. It is a pretty common thing.
Having said that, it is still something you need to talk to your PCP about.Hopefully they can find the right answer to help alleviate, or at least minimize, your problem
It's funny how we are always tired but can't sleep through the night. I can't sleep without aide from pills. I'm 21 and already have osteoporosis too and eye problems but don't really know the full extent really because I can't afford to go to the specialist for it. You know one thing I am glad about me when I first got sick was that it was very obvious that I had lupus. I have the classic lupus, you know with the very prominent butterfly rash, so my primary easily diagnosed me. I couldn't imagine having to go 12 years without a diagnosis that would be so frustrating. I am not saying it's nice to have lupus it just makes things a bit easier to have an answer to your problems.
While I have had lupus for twelve years, since about 2000 but was not diagnosed until 2005. So I went undiagnosed for only(?) five years Mica. In 2003 I was awarded(?) SSI after getting denied twice and getting a lawyer. I showed that I had resigned my job and spent most of my time in bed. I was so excited when finally going to court that I did not sleep for more than a day and a half, my eyes were sore from being up so long and reading to try to tire myself out, I used up a bottle of eyewash. The judge I believe awarded me SSI because I fell asleep in court twice.
Today I got another blood transfusion. I was supposed to receive two units but the nurse punctured the side of the first bag so I only received one unit. They are ordering two or three more units to transfuse me again later this week. Life is on the bleak side for me and my Christmas this year will be a slim one. Even so I wish all of you the best of the season though you may look at this period as just the end of the year. Take care all.
Oh sorry, guess I should have read your forum twice. My eyes read the words but my brain says differently! lol
Originally Posted by fhallock
Thank you Mica for reading and responding. There are times when I am so fatigued and my feet feel so bloated that I might trade my shoes in for boxes.
Hi and welcome to WHL.
I live on the Central Coast - The Monterey Bay.
I don't have diabetes, but I've had the sleep problems and the frequent urination.
I've recently gotten both of them under control. I'm taking Ditropan for the urination, and now I can get by with only one trip to the restroom per night, and sometimes none at all. It makes the dryness of the Sjogren's a bit worse, but it's worth it.
I'm taking Neurontin for neuropathy and it has the happy side-effect of helping me to sleep well. I can't take it during the day because it makes me too sleepy, but I do love it at bedtime.
I hope that you can find what works for you.
One of the reasons I have not been taking Ditropan is I do have glaucoma, magistramarla, and I am concerned that it would complicate the problem. I have gotten used to frequent urination at night as well as during the day. I use feminine napkins during the day placed in my shorts to control the occasional leaks, that is the most friendly term I can use, that happen while rushing to a relief receptacle or terrible enough, when near fountains or running water.