It’s officially been three months with a lupus diagnosis. I was just wondering how do you determine what triggers your flares? I feel like I’m always in pain but I’m not sure if being in pain is indicating a flare or just what my life has become. How did you learn about your triggers? It’s been quite a struggle dealing with the pain. It’s extremely frustrating not being able to do certain things I once was able too. I wake up every morning at about 3:00a.m because the pain in my back gets so severe I can no longer ignore it. Should I be concerned or is this something normal?
Hi Brittany
My triggers are changing weather, and exposure to sunlight, I wake up several times during the night with pain from laying too long on one side or the other. I'm going to get mattress pad to ease the discomfort when I get back to work. I will snuggle with extra pillows to comfort me, when I'm having difficulty getting comfortable. Sometimes placing a pillow between my knees helps my back. Discuss this with your doctor, and keep a journal to track your symptoms.
Hugs
Dx around 2 yrs. Liver issues so unable to use pain killers. Ice Pacs on knees & hips & scalp help a lot.
Have you tried a body pillow? I have an awesome down one that I sleep with. I put it between my legs and hug it (I sleep on my side.) I got mine on overstock.com. I think it was about $100 but I have had it for 8 years and it is nowhere near time to replace it.
Finding out what tiggers your flares is trial and error. The main ones for me are sunlight, heat and pushing myself too far. From what I understand sun exposure is a tigger for most people with Lupus.
Hi
I shouldn't complain but I had a terrible weekend between the FATIGUE and the diarhhea and now my stomach is really bothering me.again. I try to push myself but I can't. I'm thinking about calling the dr but I don't know which one to call, PCP, Gastro, or rheumy??? . I'm not in pain anywhere. I;m thinking about going Gluten free Does anyone know how long you have to be on that diet before you see results?
Cindy
Hi Cindy,
I had a problem with milk, and I switched to almond and/or coconut milk blends. I saw immediate relief. I would think you'd see some improvement soon. Gluten is hidden in a lot of foods, read the labels well. I changed to whole grains, and I feel better. Except yesterday my husband bought donuts, and of course I had to have some. I'll be feeling that today : (
freightliner said:
Hi
I shouldn't complain but I had a terrible weekend between the FATIGUE and the diarhhea and now my stomach is really bothering me.again. I try to push myself but I can't. I'm thinking about calling the dr but I don't know which one to call, PCP, Gastro, or rheumy??? . I'm not in pain anywhere. I;m thinking about going Gluten free Does anyone know how long you have to be on that diet before you see results?
Cindy
I’ve started a journal and have started keeping my medical records. The last flare I had I was in the hospital with a fever of 42 and I couldn’t move at all. So I’m just wondering whether my flares will always be something similar to that or whether my flares can be different. I’ve used the body pillow. It does help a little with the pain but I still find myself having a lot of back pain. The weight gain from the prednisone probably has some part in it.
Brittany, I know it’s hard to come to grasps of this lupus thing. Pain is of the flare/ symptom, i could be weather change, exposure to the Sun, and even swelling as well. Lupus is part of the arthritis tree. Make sure u put all of your symptoms, the things your eat eating in a journal, then let your rhemy know during next visit. That care of yourself and don’t be discouraged.
Hi Trisha.
I bought a gluten free eating book. I think I'll give that a try but I will try that almond or coconutmilk blend. That's if I get enough energy to go out again today. A trip to barnes and noble was enough for the morning, and its only 4 miles away.
I guess I better start reading.
Thanks for your help I really appreciate it.
Have a good day
Cindy
Hi Cindy,
take a look at the Gluten-free group. I know that after this weekend, and eating wedding cake and bread (which I have cut out except for gluten-free) I have had some of the worst stomach upset, with all of the terrible things that I have come to expect from gluten. I stopped eating gluten nearly a year ago...when diagnosed, and truly almost immediately felt relief. If you go to the bottom of the group page, under members to add pages you will find some seriously good recipes. It's also much easier today to find good recipes, cookbooks, and already made foods than even a year ago. On the plus, even with high doses of prednisone I have continued to lose weight. I know a lot has to do with the disease, but weight gain was one of the reasons I didn't want to take prednisone. Avoiding gluten has been much easier and after a year is much easier than in the beginning. My husband has even learned how to bake and use all of the flour blends. He hasn't given it up, and still has stomach issues. With high doses of CellCept, pred and Plaquenil and ibuprofen, anything I can do to make stomach better is worth it.
Have fun with it, I know you will enjoy. And, if you want some ideas for starting etc., just PM me.
Hugs,
DeAnne
freightliner said:
Hi
I shouldn't complain but I had a terrible weekend between the FATIGUE and the diarhhea and now my stomach is really bothering me.again. I try to push myself but I can't. I'm thinking about calling the dr but I don't know which one to call, PCP, Gastro, or rheumy??? . I'm not in pain anywhere. I;m thinking about going Gluten free Does anyone know how long you have to be on that diet before you see results?
Cindy
Hi Brittany,
We all have different triggers, but there seem to be some that affect all of us to some degree. Like Trisha weather and sun affect me, but also sitting or standing in one position for too long. Because my kidneys are so severely damaged, hard floors, walkways etc hurt.
I have a temper-pedic with a down topper which is helpful. I sleep on my side and at times putting a pillow behind and slightly under my back helps immensely.
Keeping a journal, especially in the first your, is always helpful. Your own body is your best indicator. Take notice of things that you may not have before...how do you feel after going to the store. I simple trip for some is a complete drain for me between sunlight through the windshield and the walking through a grocery on hard surfaces, requires a 2 hour nap after.
You will get the hang, hon. We all have had to. You will get frustrated, but then you will find a way to do things that works for you specifically.
Good luck and good health,
DeAnne
I thought the back pain was caused by the lupus. I didn’t know there could be other reasons and specialists I could see for it. Thanks for the insight. I’ll have to speak to my family gp about a referral.
Brittany
I actually didn’t think about requesting my reports. I guess I should start collecting them from now on. Thanks for the advice, it’s very helpful. The diagnosis is still pretty new and very confusing at times.
Brittany
Hi
Britany
Get use to "very confusing at time". That is the "norm" for us. I was diagnosed only 1 1/2 yrs ago and i'm confused all the time. Always get copies of blood work and test just incase you change drs.
Stay Positive
Cindy
Thanks I’ve requested reports and will now keep copies; I didn’t even consider doing this. I also want to thank you all for your advice on the toppers. I recently got my topper delivered and so far it’s been working well. I can finally sleep through the night thanks again.
Personally my triggers are sunlight, cold, not enough rest and certain foods.
I get back and hip pain, and the body pillow suggest below is a good one. I don't always sleep through the night, but I do get a better rest, and it helps ease the pressure.
I also found a heating blanket helps a lot with me. I keep it on low through the night. In the morning, when i am usually in the most pain, I will turn it all the way up and wrap myself up in it for about 20 minutes. It helps losen up the stiffness in my joints and makes for better mornings.
I have a body pillow and it works wonders. I will have to look into the heating blanket. Thanks
MamaMarshall said:
Personally my triggers are sunlight, cold, not enough rest and certain foods.
I get back and hip pain, and the body pillow suggest below is a good one. I don’t always sleep through the night, but I do get a better rest, and it helps ease the pressure.
I also found a heating blanket helps a lot with me. I keep it on low through the night. In the morning, when i am usually in the most pain, I will turn it all the way up and wrap myself up in it for about 20 minutes. It helps losen up the stiffness in my joints and makes for better mornings.