What's part of Lupus and what's not?

I'm new to the Lupus diagnosis. I don't know what's part of Lupus and what's not. I was diagnosed with it last year. My rheum. had me on predisone 5mg until last summer when we saw that plaguenil was doing good so now I only take predisone when I have flare ups.

But for the last 3-4 months I'm either constipated or have diaherra. I also have nausea and headaches and so so tired. Is this all part of Lupus or is it something else? Every day I wake up and wonder is this going to be a good day or a bad day. Generally it's a I don't feel good day.

Can anyone help me out? How can I get energy as I don't seem to have that either. I have 2 teenage boys and I feel like I will miss out on them growing up if I don't find some energy.

Thanks any comments will be well appreciated!

Lupiegirl

Have your b12 checked. And ask if you can take extra. Be careful about excessive caffeine, I have noticed it can be counter productive. Take naps when you can. I have a 13 yo

Dont worry all of us go through the part of trying to figure out what is or not lupus..... you still are going to get sick like everyone does....or most people.

It kind of sounds like IBS since you are going back and forth. You might try product jaime lee curtis it is type of yogurt...also greek yogurt is great for it as well..has more probiotics that help balance good stuff needed in your intestines.

You might stay away from breads or anything that has excessively high fiber as that also can set it off...you could also have gluten problem going on as well...there are a lot posts on it and how to deal with it..so search on it. Here or on internet. That and IBS, irritable bowel syndrome.

If it does not stop i call your doctor and they can talk about possible problems .. i am so sorry it is not fun....but odds are not lupus so that is good. always check with your doctor. good luck

Yes, food allergies can also be present and cause your symptoms.
Your Dr. is the best one to talk to about lupus flare symptoms.
Feel better soon. Gentle hugs.

Hi Lupiegirl

I believe this is part of lupus. I have the constipation/diarrhea and for me I think the plaquenil has something to do with it. For a long time though, I thought this was a side affect from my gastric bypass.

The fatigue is difficult for me as well. I'm recuperating from surgery now, but when I was working, all my energy got me thru the work day, and I would come home and crash. There was no more energy left for home and family. Even now that I'm home healing, I still get exhausted. And my husband takes care of everything, housework, the dogs the shopping... But just getting up to go to doctors apt and physical therapy, and I'm exhausted.

I have to accept that fatigue is part of my life, and the more I try to fight it, the more it increases for me. I don't have the energy to do it all, but I can do the important things.

Lupiegirl, this is our $64,000 question... which symptoms are due to lupus, and which symptoms may actually be due to some other condition, such as fibromyalgia, autoimmune hepatitis, Hashimoto's thyroiditis, etc., etc. or even an infection such as Lyme disease. (I know how confusing it is... I have seven different autoimmune diseases plus Lyme disease, Babesiosis, Ehrlichiosis, and Bartonella, plus fibromyalgia)

Whether your gastric symptoms are due to lupus or not, you should try to follow the "autoimmune diet", i.e., be gluten free and dairy free if at all possible. Also, you should avoid soy and corn, because in the US those are genetically modified, and bad for EVERYONE!

Because of the fact that if you have one autoimmune disease, you are far more likely to have others, you should see how you feel on a gluten free diet. It may be celiac disease or non-celiac gluten intolerance. I was told for decades that I had "IBS", it turned out to be celiac disease. If I had stopped eating gluten in my twenties rather than in my forties, I might not have developed some of the other AI diseases that I now have. :(

Here is a great guide on how to go gluten free: http://glutenfreegoddess.blogspot.com/p/how-to-go-g-free.html

Best wishes!

JoAnn

Lack of energy is the number one complaint!! Unfortunately there is no magic cure for that ;(
As for your stomach issues it could be the disease or the meds or something else all together. Don’t make the mistake of assuming everything is just the lupus. The lupus may be the underlying cause but it could be something treatable. I had the same issues and went to GI specialist and it turns out I had reflux and gastritis. The reflux did not present in the usual way and I had no idea I had it. The gastritis was caused by all the meds I take but it did need a very intense and expensive round of antibiotics. I also had a cluster of precancerous polyps. Point is you never know so please listen to your body and get it checked. Hope this helps. Good luck and welcome!!!

I too suffer from diarrhea due to Lupus and have been for the past 6 years, but when I take my perscribed plaquenil, it is even worse. I can't take it and get through work, so I have stopped taking it. My dr suggested I go off for a week then take a smaller dose and slowly build back up to the recommended dose, but I can't take it at all without having to literally run to the restroom over and over through out the day. I don't know what to do now. I sympathize with you. :|

Lupiegirl,

It is difficult to say what is and isn't part of the lupus diagnosis...I believe that Tez_20 said "lupus never comes to the party alone". I haven't forgotten that so while it may not be exactly lupus, it could very well be an effect of it. Many of us suffer from anemia (in fact that is what started the search on me that led to lupus), low iron can make you SO incredibly tired. Do you crave ice? I would watch snow on the television and my mouth would water, lol. Also, Katherine is exactly right to have your B12 checked and if it is too low you many need a couple of shots. However, B12 is available in a sublingual tablet. My PCP did tell me that B12 is one of those vitamins that expels anything that unused by the body.

I would also start keeping a journal of what you eat and how you feel after you eat it. I put the high points of an article for people that suffers from IBS, and they recommend peppermint capsules to help with cramping.

So to sum:

Check B12, Iron...keep a journal to see what may be aggravating the situation. Try peppermint capsules as well as probiotic digestive aids. I have done all of that as well gone gluten-free most of the time, but occaisionally it can't be helped. There is a group tab at the top of the page for members that would like to eat a more allergy & gluten free diet. There are wonderful recipes and I try to add more every day.

I do hope that some of these ideas help you.

Feel free to PM me for some more ideas.

XXX,

DeAnne

I believe these symptoms are part of lupus, as I have them all. I also have 2 teenage boys and feel like they deserve better.....I am always out of energy!

Give yourself a break when you feel like this because you can't help it. Your true friends (and hopefully family) will understand as well. Just let them know you are doing your best with what you have.

I will be praying for you!

Jenniferforhealing

Lupiegirl, have you thought about trying to find out which foods you are allergic to that can cause Contipation and diarrea. What I did was I placed myself on a gluten free diet because mose people who have an Auto Immune disease is allergic to gluten, it is an plant protein additive that is mostly added to bread, wheat and is used as a thickner and emulsifir in alot of processed foods that we eat. I have been on the diet for 3 months now and I feet 80% better I do alot of my shopping at the health food stores because most of them have a complete gluten free aile in their stores. You may want to talk it over with your Dr. but I don't see how it could hurt you to try it.

I think that you should go gluten free just because it irritates our Lupus condition. I bake my own gluten free bread I make sure that the flour is either Brown Rice or Corn flour because there is no gluten in either of them.

Lupiegirl, have you discussed this with your doctor? I would start there. Many things can cause diarrhea, some serious, some not. Depending on what your doctor thinks may be causing it, he/she can give you dietary suggestions and you can discuss OTC supplements with him/her.

Personally, I avoid probiotics, along with anything else that "boosts the immune system" or "supports a healthy immune system". I'm on an immunosuppressant - the last thing I need is a boosted immune system.

Good luck and feel better.

Sharon

Hi, have your doctor to check your iron level that might be low....Beverly L.

Kind sounds like IBS...which could be caused due to stress of worrying about having lupus.

This is really more something your primary doctor or you can read about IBS (irritable bowel syndrome) on line and see if it fits your symptoms. BUT even if it does, still tell your doctors because you do not want drugs that can set it off.

One thing, i would not take pred pills every time i flared. Have you ever had dog with allergies or any friends? well one thing that helps is pred pills but it also kill your dog because it is so hard on their kidneys. Every time you take even just one week at low dose, takes over 6 months to get it out of your body...what a Endocrinologist told me who was testing me to see if my body was still producing it on it's own since i had been taking it off and on for years. Also, my brother who also had been on it as it was only thing to keep what ever auto immune disease he had( since kid in 50's to 80's when he died) bones of late 60 yr old in his mid twenties.

I worked through a lot of flares and of course if flare becomes life threatening you do not have choice but if it just matter of bed rest and eating well...than i say do not take them.

Energy...huge one, anemia but i have always been more tired with it. I get a good day at most now 10 days a year.....in my younger years it was few a month other wise it is just having lupus. I had to pick what fun things i did and learn how to say sorry but i just cannot or i get so sick i cannot get up.

So your kids are more than old enough in high school to be taking care of their rooms, laundry and meals except maybe dinner and even that every person could have night to cook including your husband. Go out one night or take out one night. Everyone should be helping with house and yard work as well.

If you are trying to work as well as do it all.....no way person with lupus even mild lupus can do it all for very long. So you might need to trade down to smaller house for lower house payments or not buy new cars very often...and if kids want designer name they save up and buy it themselves. So if you do have job...you can give up to rest more at home... it really did help me most when i did leave my job...just was very hard since i loved it and i liked being able to support myself....hurt my self esteem to leave it but improved my health and made life for all more enjoyable.

Actually, my friends most of them, tended to raise their kids like that when both parents worked. I did a lot more than what i am saying here when i was in high school plus had part time job. I still did plenty of fun things.

In fact one of closest friends i recall her 8 yr old did not have clean shirt and complained one am before school...she reminded him that his laundry was his responsibly and guess he had to wear dirty shirt....he never did forget again lol!

So this way you can rest more....and you will still have more than share of house work unless you can afford to hire maid...people to wash windows etc. If you have that luxury where you can afford to hire house person to help with meals and house work than by all means do it so you can nap daily.

I was better when i was able to try and nap daily and rest at home as i needed. I would put on show and do stuff during commercials than rest... or read a book and read a chapter to rest than do half to hours worth of work...but keep resting all day...and by 7 pm at night i was exhausted. I went out at night but rarely...but i was more morning person and i normally did not get home from work till 7....often so tired i just wanted to get bed.

In group, this is normal problem i discovered..some do more after work where i tended to do more early in day .....than i rested by 1 pm i have to start really watching it. I did go out dinner or movie nights with friends a few nights a month but not too often. I also ate so very healthy and tried cook most of my meals except lunches at work..but ate healthy and often tried to nap there.

If your kids activities are taking away so house work suffers ...well than just explain that you want to go and be part of it and all of them just need to help out a bit more. I get if you been doing it all than it is going to be overwhelming for your sons....in long run you will be making them more prepared when they do live on their own or just go off to college.

Hopefully you are wealthy and just can afford to hire people! You know money cannot makes us healthy but sure can make life a lot easier especially when one has chronic disease!

I am sorry....i know it not fun to say i am sorry but today i just cannot do it...and sadly there will be those days. I know breaks your heart inside but in positive way...you are teaching your children how to take care of themselves which is something very few us were taught....how to put ourselves first when sick.

I wish you best of luck and some things like prescription folic acid, primrose oil did help me a bit. Sure there are some teas that might help too....i know i saw some new ones that i plan on trying.

Thank You all for your replys. It has help so tremendously to hear from each one of you as there are times I feel so alone in this.

I am by far not weathly so having a house cleaner is out of the question. :) But I do make my teenage boys pick up after theirselves and load and unload dish washer. The house is not as clean as I'd like it but I'm learning to not live with that "spotless" house which is a challenge for me.

I have an oilfield business with my husband so I do work everyday but my hours are flexible and I don't do much but sit at the computer most of the days. I can take off if I need to. I just hate to do that cuz I feel I'm not holding up my end.

I just so wished I could go back to normal. Where I was able to ride 4wheelers with my family and go camping with a tent. Have energy to do all the things we all use to do together as a family. Now I don't even have the energy to THINK about doing any of that. My boys know when I'm sick as they always ask "are you not feeling good?" when I'm lying on the couch. I just don't want their memory of me being sick all the time.

I have been not taking Predisone cuz I do not like the side effects even though my rheum told me it's such a low dose. I still gain weight. If I hurt bad enough I take Ibuprofen and that gets me through.

My husband is pretty good about understanding to an extent...But after complaining about being sick and hurting for days in a row I can tell he just doesn't get it! I don't say much to my in-laws or my family as they really will not get it...I have an in-law well a couple of them that play wolf all the time with their health that when I say something to my mother-in-law she just states that it's nothing and I'm not as sick as her 2 daughters. Which are not even sick they just want attention. So I don't say anything around them.

Today has been a good day. Not much pain! Still problems with the bowels...now that is getting old...lol...My oldest son has a BasketBall game 45 mins away tonight so I'm sure I will be exhausted by the time I get home. But that is worth it to me to watch my boys play their sports!

Again thank you everyone for your comments and concern I truely do appreciate it!!!!

Hope that you remain doing and feeling pain free. Yes having children have memories for them in their adult like , and we do try to give them good ones to remember!!! But they do understand sometimes Better than adults do of things that is going on !!!! That's were the peace comes in -smile . Give them time that you can and do the things that you can with them , and most of all , make sure you talk with them as much as you can , about what they are going through and what you are going through !!! It helps believe me -i have adult kids (3) and it was hard for me to at the beginning of this LUPUS stuff -now 2 years ago as of Feb.7. But of course we made it through the moments -it took time, but we are doing it !!!! Hold on !!! ...Beverly L.