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serand4
03-15-2011, 06:07 PM
I'm trying so hard to push past all of the inconveniences of these disorders but the fatigue is just killing me! I don't get any energy until around 5:00pm. I'm on a total of 60mg of prednisone just so I can move at all and while it usually helps my pain, too, but not now. I don't know if I'm just in a really long flare or if I'm barking up the wrong tree. I feel like I'm missing something because regardless of what I do, I seem to get worse, not better. I heard there is a new med out for us. Let's all say a prayer that it's our answer!!

ritzbit
03-15-2011, 06:20 PM
Are you one any sleeping medicine? I CAN NOT sleep at all without taking Flexeril, which is actually a muscle relaxant. It really helps me sleep. I've also been having a lot of trouble sleeping since I started taking prednisone lately and have learned it causes insomnia and I had to up my dose of Flexeril from 10mg to 30mg to get anywhere near the same kind of sleep I was getting before. Maybe you could talk to your doctor about giving you something to help you sleep for now.

tgal
03-15-2011, 06:20 PM
He There,

THe new med is called Benlysta and if you do a search within this site you will find several topics about it. It won't be for everyone but it will help some and it also leads the way for several more meds within the nextt few years.

As for the flare, some of them are just really long and didn't you just start on plaquenil? If so it takes about 6 months to start working. The meds we have don't always work quickly but they will eventually help some

SandyR
03-16-2011, 07:10 AM
I'm trying so hard to push past all of the inconveniences of these disorders but the fatigue is just killing me! I don't get any energy until around 5:00pm. I'm on a total of 60mg of prednisone just so I can move at all and while it usually helps my pain, too, but not now. I don't know if I'm just in a really long flare or if I'm barking up the wrong tree. I feel like I'm missing something because regardless of what I do, I seem to get worse, not better. I heard there is a new med out for us. Let's all say a prayer that it's our answer!!

You're definitely standing at the right tree. In fact you are in a forest filled with these trees. There are several people on here who battle fatigue during the day - I personally think it's one of those sun sensitivity things. I have that problem too. It's really a problem when I am up till 1am and have to work at 9am. Makes for a long way to 5pm. Then around 7 or so I am filled with energy again most of the time. It's very frustrating. It's also changed the way I function even on the weekends. I am much more likely to rest and relax or sleep until mid day and then be up but not really active until late afternoon and then it's full swing till I hit the wall sometime between 11 and 1 or 2 or 3. Very frustrating. I'm standing there barking at the tree with you.

serand4
03-16-2011, 10:40 AM
Thanks guys! I do take sleep medicine though I'm not sure it gives me good quality sleep. I decided last night to try to really stick to a specific dose and keep toughing it out in hopes of setting a sleep pattern. The daytime theory is excellent, too! I don't know why I didn't put that together!

Tgal, my rheum took me off of the Plaquinil when she decided I didn't have Lupus. As the song says, "If you could see me now!" I'm working to get into a new group of rheum docs and will hopefully get on a med that will give me some relief. The weakness in my legs and arms still scares me a lot as I read that Lupus attacks the tissue in the spine and that's what causes the weakness. Who knows? I'm doing a bit better at not borrowing trouble.

SandyR
03-16-2011, 11:33 AM
Thanks guys! I do take sleep medicine though I'm not sure it gives me good quality sleep. I decided last night to try to really stick to a specific dose and keep toughing it out in hopes of setting a sleep pattern. The daytime theory is excellent, too! I don't know why I didn't put that together!

Tgal, my rheum took me off of the Plaquinil when she decided I didn't have Lupus. As the song says, "If you could see me now!" I'm working to get into a new group of rheum docs and will hopefully get on a med that will give me some relief. The weakness in my legs and arms still scares me a lot as I read that Lupus attacks the tissue in the spine and that's what causes the weakness. Who knows? I'm doing a bit better at not borrowing trouble.

we'll just have to become vampires.

ritzbit
03-16-2011, 12:50 PM
we'll just have to become vampires.

Lol I just had this conversation with my physical therapist the other day.

GoodDog
03-16-2011, 04:25 PM
Do you know if you're anemic? I am and I suffer terrible fatigue from it. Like you, my legs and arms are so weak I can barely walk or brush my hair. My back muscles hurt so bad after standing a few minutes that I'm forced to quickly sit. Maybe check your blood work and see if any are low. Just a thought. i hope you get copies of all your blood work. I think all of us need to do that and keep track of it for ourselves. I put mine on a spreadsheet so I can see if there's anything I need to bring up to my doctor. I download it to my Kindle and take that with me to appointments.