First off, I don't know if I have lupus or not. But after this week's flare up, I'd be really surprised if I didn't.
Aside from the aches & pain, what can I do for the extreme fatigue?? I have 3 young kids ... 8 yr old twins and a 4 yr old. I simply do NOT have time to be tired. This week has been a hard struggle to just barely keep up with everything & simply keep my eyes open. Woke up this morning a little better, but still ... I need to be there for my kids, and not just half way. It absolutely killed me when they would ask for bedtime stories that I was either too tired or my vision just too blurry. :(
Sorry to hear. The lupus is bad enough when you don't have little ones, I can't imagine having little ones besides. Don't you have anyone that can help you. Even if they can do some small household duties. If you lived near me I would help you. I do what I have to do an hope for the best. Do you have a rheumy??
I take Strattera. It's a non-stimulant ADHD medication. It helps pick me up a bit, energy-wise, and it helps with the Lupus fog. I've tried other ADHD medications in the past, but because I don't have classic ADD or ADHD, it made me feel too hyper. I've also tried Provigil to help me feel more alert and stay awake, but that medication made me so sick to my stomach. Strattera can cause stomach upset too, but we did a gradual increase over several months. Typical starting dose for adults is 40 mg, but we started at 10mg, doubling every month. The first couple days were a bit rough as far as nausea, but after that I feel fine. I don't have children, but I have an 8 year old niece. Her Mother and my Mother both sat down with her and explained that I'm sick, and I need to take naps. I make sure I leave my bedroom door open, and I put on a movie or she plays computer games. I leave a snack and something for her to drink next to her, and I tell her to wake me up if there is an emergency. Sometimes I sleep on the couch. If you can, nap when your 4 yr old does. I don't know what your home life is like, so I'm not sure if you work or if your kids are at school or not during the day. The best advice I can give you is to give yourself permission to adapt to your circumstances. Whether that means asking a friend to stop by and watch the kids so you can nap or if the 4 year old is home during the day while the twins are at school, maybe look into a 4K program, so they have some time at school. Don't be afraid to reach out. Some days are always going to be better than others, but if you can have a plan in place for the really bad days, it helps. Good luck to you.
My doctor prescribed provigil for me and it was a godsend when my older boys were young. They are 19 and 17 now and we have our youngest son who is 8. Surprise bonus…lol I tried ADD ADHD meds but they either did nothing or I would get hand tremors. My body is fairly resistant to “uppers” so I have to take more to get a good effect which increases the side effects. I’ve been off of it for the past few months but will be restarting it. I had to tell my doc that I didn’t care what a med did long term but I HAD to function for my kids. I kept a symptom journal for a month and gave that to him as well so he could see what I was talking about. I took 400mg a day which is double the standard dose but it really helped. I hope you find something that gives you energy soon. Gentle hugs, Annemarie
I was just thinking about this this morning. I take pain meds for the constant joint and back pain but the fatigue and sleepiness even after a good night’s sleep is so frustrating. I have so many things I need to be doing, laundry, cleaning, cooking and shopping but don’t have the energy to do even the simplest of these. All I feel like doing is going back to bed and nap. Yesterday I had several things I really wanted to get done and really needed to get to done but ended up going back to bed and sleeping until noon! I’m sitting here right now knowing I have a ton of laundry to do and I’m fighting to stay awake. Think I’ll go take a nap.
Are your 8 yr. olds in school? If they are you probably only have to worry about the 4 yr. old during the day. Can you play 'quiet' games with her until her nap time? Then you take a nap at the same time. The 8 yr. olds are old enough to help you with small chores, that should help a little bit. Can your husband take over in the evenings, so you can rest. I know it's hard to deal with the fatigue...Good luck and feel better.
the older ones are in school, and the 4 yr old does go to preschool, so right now I have a couple hours in the morning. But those hours are always used up in doing the laundry, the dishes, grocery shopping, ALL the stuff I have to get done every day. It's very rare that I'll come home while the kids are at school and rest. None of the kids take naps any more :(
My mil does live close by and she's actually really great at letting the kids go over and play sometimes, but I hate to ask too much. And hubby works a LOT...like 7am til 9pm almost every day. He's self employed, so it kind of goes with the territory. Can't remember the last time he was actually home in time to have dinner with us...usually he gets home right as I'm tucking everyone in.
I have ADD and fatigue with my lupus etc. I used to take Adderall but can't take that type of medication anymore. It was suggested that I try Mucuna Dopa a natural herb. It seems to work quite well for the organization and energy. I tried a few different brands and found that the Source Naturals worked the best for me. I got it on Amazon. They are testing Mucuna Dopa for people with Parkinsons and Alzheimers. My doctor also gives it to her young patients instead of Rx meds.
Just a thought it work's for me. Good luck! I never could have taken care of my kids if I felt this way then. They are in their 30's now so I'm good.
geneva21, I do have days that it's very hard to focus on what needs done. I always thought that I just needed to snap out of it or something...not until recently did it occur to me that there might be a medical type reason. It's like I'll go back and forth between things without really accomplishing much...very frustrating at the end of the day. Or, I get very easily distracted. Does the Mucuna Dopa help with that??
Is it possible for you to divide up your chores? Instead of doing a little of everything every day, maybe focus on one particular chore that day. I have a friend that comes to help me once a week. Do you have a friend that could stop by and help you with your chores? Or maybe you can hand your grocery list off to a friend already going to the store? Could your MIL help you with your chores? Is your husband free on the weekends? How about the kids? If you don't have a dish washer, that might be a wise investment to make. Ideally, my house would always be clean, but it's just too much for me. Pick your battles. Decide what's important, and what you're capable of doing. And be realistic.
Are you going to have an evaluation by a Rhuematologist or have you already? Perhaps you do have an 'auto-immune' disease and might benefit from some medication. With out your getting a proper diagnosis and treatment these 'symptoms' your having might worsen. If I might add a word of caution I suggest your seeing a good Rhuematologist before you start using any kind of medication either over the counter or otherwise. Someone here suggested meditation and chinese exercises(Qi gong of which I am a student as well), these are good suggestions as are many being suggested here in this forum, but I really would caution you to find a good doctor and see what is happening in your own body and go from there. Take care of yourself and be well.
I don't really have someone that I can put that much on...have never asked anyone to come over for help other than when I was pregnant & on bedrest. Husband either works on weekends or we are doing something else; it's go, go, go all the time.
ptpsr ... I have nothing set up to see a rheumatologist. My regular Dr has done a few tests; the first one was the ANA titer which was elevated enough for her to order additional tests ... but those came back normal. I was rather expecting them to be normal, as I wasn't really in the middle of a "flare' (if that's what these are) when I had it done. But they called me on the phone to let me know about those last tests & nothing was really said after that other than to keep track of my symptoms. I do have a follow up apt in November, and I did go back this week and re-took a test but honestly I don't know which one it was.
Honestly I'm nervous to try any kind of treatments because I'm afraid that I won't get a proper diagnosis if I do. But I've heard that it can take years to get a diagnosis & I really don't think I can just suffer through with nothing for years.
Hello, small kids understand stuff way better than Adults!! During the daytime after they settle down try some actives / projects with them -u know cutting out pictures or make crafts and art things that don’t take alot of time to do . Coloring pictures is always fun for kids of that age. Explain to them that some days mom don’t have energy to do ALOT of things and they have to help you out. My grang kids love playing doctor and nurse . When I need something simple they say may we help , and I tell them yes, there are some books that I want but I can’t hold them ,their little face just shine and their eyes are bright with a big smile (that is so beautiful to see). Also have a movie day and let them pick the movies and everyone get on the bed or sofa ( dont forget the popcron and candy)that always help me!!! Hope that you and the kids enjoy , take care and remember that we are always here…Beverly L.
I completely understand. I have three kids of my own and also am a caretaker for my grandma who has dementia. So some days are a lot more of a challenge than others. I do agree with some of the other posts, kids do understand a lot more than we realize. My youngest of 7yrs wants to be a Dr when she is older to help fix me. My middle daughter does extra around the house to help out. I’m grateful to have the support that I have at home and here.
I have a 17 year old, a 10 year old, and a 9 year old. At the height of my symptoms, I was in bed for days at a time. My husband tried to keep up with the household but just couldn't do it. The laundry piled up, the sink was always full, the cat box unemptied. They ate a lot of take out. When my medication started working and I began to feel more like myself, I sat down with each of the kids and explained the situation. They now all make an effort to take care of their own needs and help out with chores. Kids understand a lot more than we give them credit for.
If you're tired, and it doesn't have to be done "this minute", don't do it. Take lots of breaks. Talk to your kids about what you're going through.
I think it depends on your insurance as to rather or not you need a referral. I didn’t need one. My family dr wasn’t too happy that I went around him but too bad. Thanks to going with my instincts it was caught early enough to start medication to slow the progression and I still don’t have any joint damage. I haven’t been given a diagnosis yet but it’s one of four autoimmune diseases. It could take many more years before they’re ever able to determine what it is. I tend to think lupus because of some issues with the sun and flourescent lighting. Check with your insurance. I’ll say a little prayer that you don’t need a referral. Keep us posted.
