first I know I need to rest and I really try but it's hard with little kids. any who lately if I'm having a tired day I notice by bed time in in everything pain like 8+. I'm only on plaquenil and topamax So nothing for pain and I don't know what to do. It's too the point I hurt so bad nothing can touch me and nobody. I also can't sleep which is making for a VERY vicious cycle. I go back to my rheumatologist the 18 th but until then does anyone have any advice? and sorry all I seem to do is since on here makes me feel awful!
Have you tried the NSAIDS?? Like motrin or Alleve For some it is a wonder drug and very effective in pain relief- which if you can get the pain under control then you can sleep better then if you sleep better you will have a better tolerance for pain Many rheumy's will advise over the phone too- worth a shot
I agree with poobie - I would try Motrin if you can tolerate NSAIDS ok (and only if you've never had issues with ulcers, GI bleeding, etc... or any kidney problems). Be sure to take it with food. That might be enough to get you through until your appointment. It works well for pain and inflammation. It's never a bad idea to check with your doctor first, so you may want to just give the Rheum a call. Maybe they'll have you try something different.
Hello yes i have the same problem. A professional told me he thought my kids act up because i am sick i cannot take plaquenal because it made me more tired and sick currently i take tramadol for pain and take warm jacuzzi baths i also drink boost energy drinks they are $ but worth it since i am sensitive to everything its the ones for healthy jounts build miscle and a healthy brain good luck
I empathize with you. I find the pain getting intolerable by late afternoon, am always grateful if I can pull supper off. There isn’t much you can do with young ones on board but forge ahead, looking back if i had to do it all over again though, I would say I would have asked and accepted help more. If perhaps a mom or sister wants to take the kids for an afternoon, let them…arrange play dates with friends or neighbors. May sound crazy but have a laundry party. Let someone bring over their laundry with their kids and as they give you a hand keeping an eye on the kids, you sit on the bed or couch and fold their laundry when it comes out of the dryer. Even if it’s just one load of towels. And the added perk is you get to visit with your friend at the same time., some friends and I used to do meal preps together. Each person brings enough ingredients for both families for the dish ( say a meatloaf ), another brings items for a tuna casserole. Then get together while the kids are in another room with Uncle Walt Disney, and together prepare both dishes. Again you have adult companionship time, you get two meals for each family ( double the recipe if possible so you can each freeze a meal for later) of course this doesn’t take the pain away…more ideas to simplify life and manage through the child raising years… Tweak these to however it works for you. My point is we have to sometimes think outside the box. I made a lot of excuses like I didn’t have any family that lived close, etc. I let ignorance and pride get in my way too often and it does not help anyone. Certainly didn’t make my life easier and if I was in so much pain that I was miserable I couldn’t be the kind of mom and wife I wanted to be. Check with your doctor, it seems you are on minimal meds. The Motrin sounds like the best idea, be careful with Aleve…about 50% of those who take it have severe reactions to it. Vimovo which is a relatively newer med (similar to Naprosyn) seems to have good results for pain relief. Need a script but it’s non narcotic., Lyrica ( non narcotic but it is a controlled substance script) is helpful for fibromyalgia pain but it can make you feel a little dopey, perhaps you could take just at night and it would help you get some rest. I hope these ideas help. You are now on my prayer list. Raising children and running the household with Lupus is beyond understanding but I was blessed to have one son after many lost pregnancies. I would gladly go through the pain, exhausting days all over again. Motherhood has been my life saver! God bless, Peace & Love ~Maré
My mom comes out once a week and I try to do the bulk of my grocery shopping done them. everything else I try to do when my oldest is at school. I'll have to work on getting meals in the freezer. the laundry is always the last thing that gets done it seems like. I really can't wait until the 18th hoping for more answers!!!
Sorry you're having so much trouble! How long have you been diagnosed? Have you tried acupuncture? Epsom salt foot soaks help with pain believe it or not! Also try the Turmeric that everyone has been talking about - it's good for the inflammation which causes all the pain. Like I posted just awhile ago - I have started the Anti-Inflammatory diet this week and already feel a difference! Are you eating alot of carbs? I found myself eating potatoes these past couple months (they just tasted really good for some reason) and was not feeling very good. Google anti-inflammatory foods and you'll be amazed!
Taesra,
It is so difficult to break the pain cycle once it comes on. If you are not seeing a pain management doctor, perhaps it's time to consider seeing one. I agree with Mare that you seem to be on a very minimal amount of medication to take care of the pain. I started seeing my pain mgt doc after an accident. The interesting thing is is that when other docs asked about my pain, it was much more mild than what would have been expected based on my test results. My body, unknowingly, was getting the pain relief for the Lupus as it was getting the relief from the spinal damage after my accident.
That said, I would be careful of nsaids as I used to take them first (prior to my prescription pain meds) and did not realize the damage they were doing to my kidneys. I had my first biopsy in November and am already at stage 4 renal disease. This is why I recommend seeing a pain management doctor as their specialty is making sure your pain is handled without causing damage to organs and still allowing you to lead a somewhat normal life. I take neither Nsaids or Tylenol (liver damage). I was told in no uncertain terms to take my meds when prescribed, even if I wasn't in excrutiating pain. This was so that pain could not take hold, leaving me where you are now.
I also use HeatWraps (love them) for pain relief as well as an oversized heating pad purchased from a company in Battle Creek, MI. It is about 3 ft long and 1 1/2 feet wide. It pulls moisture in from the air and I go nowhere without it (it's been a lifesaver). If ou can drive, even at your corner drugstore you should be able to find natural remedies that contain things such as Valerian, Kava, Melatonin, etc. They really do help. One thing my Pain Mgt doc told me that I will never forget; Like a diabetic needs insulin a sufferer of chronic pain needs medication to help with quality of life and there is absolutely nothing to be ashamed of. I know that we feel we have to "beat" this, but how to you beat what can't be seen? So many other parts of your health WILL be affected if the pain is not reduced, BP, digestion, sleep, muscle cramping, stress - all of which are triggers for a flare.
Another thing I used to do when my children were younger (when I was injured) was to turn housekeeping into a game. Winner chose desert, or got to pick the DVD to watch, etc.
I hope some of this information was helpful, and you can always email me.
DeAnne
I suffer from the same evening pains. I have had Lupus for over 15 years and the only way I was able to take care of my 3 boys was prednisone. Now after years of use I have AVascular Necrosis of the bone (knees and hips) I’m 46 years old but I saw no other way to stay active in my kids life’s. I did try several different meds but this was the only one that aloud me some relief. Good luck, sending prayers your way.
Hi, try a heating pad - that's what help me when the pain is really bad. sometimes the pain meds. don't help me they just make me sleep. Make sure that you let your doctor know about the pain , hope that he/she give you some....Beverly L.