Hi johnnie! Welcome!

I can't speak for everyone, but being tired is a very common complaint among people with lupus...Even those that have mild sle. Have you spoken to your rheumatologist about this? Has it gotten worse?

I know there are things that I do to help with the tiredness. I take a nap every afternoon. However, I know that this isn't possible for everyone...

I also try to take a relaxing, hot bath once or twice a week where I just quietly regroup.

I hope this helps! Hugs,
ladybrannon

Hi all!! I'm a newbie at this forum, but I can't tell you how nice it is to find others who are going through some of the same things I am. It makes me feel just a little bit less crazy!

I'm a napper too. I just can't function a full day without resting. It makes me feel a little bit like an old woman, but I keep telling myself it's this stupid disease and not just age.

I am not diagnosed with lupus, but have a sister diagnosed with it who thinks I have it. I can very much relate to your tiredness.

I find when I eat a meal with just a meat or protein and a non-starchy vegetable (cutting out breads, cereals, potatoes, rice, or pasta) I do better afterward. If I eat something higher in carbohydrates, then I feel very nappish within a couple hours afterward. Like today I had cinnamon roll for breakfast and I feel wiped out. I used to feel like I could barely function after eating a sandwich on wheat bread when I used to work in an office. When my husband went on a modified adkin's diet I discovered I felt more energy coming back (before that I felt very tired). The diet got a little boring so we fell off of it recently, and I had starting to wonder what was wrong with me again. I feel worn down and i'm still under 40! Thank you for bringing the tiredness up, because you helped me remember what helps me. I hope this helps you and everybody listening with the tiredness! Take care.

Lynne, so eating just protein helps your fatigue? I'm not much of a meat eater which may be part of the problem, huh? I don't feel full unless I have some carbohydrates...Bread, potatoes, etc. I might try modifying my diet for awhile though and see if it makes a difference. What else do you use to fill up on protein? Is there some other option than meat to build a meal around?

Thanks for the info!

Well...So much for my tiredness. Just a few days after posting about my tiredness I developed a butterfly rash and joint pain. I saw my rheumatoligist today and he confirmed that I was having a flare. He gave me a cortizone shot and said if not feeling better in a week he will start me on plaquenil. I think I was in denial because it has been so long since I have had a flare. I am really angry and want to cry. Sorry for complaining when so many of you are having a lot rougher time than me. I have never heard of giving a cortizone shot. Have any of you?

Hi johnnie!

Yes, i've had steroid shots...I've also had ivs for a blast of steroids to try to knock me into remission!

i do hope you feel better!

Hugs,
ladybrannon

Johnnie,

please don't feel guilty for venting because someone else might have it tougher than you right now. Trying to find out who's in the worst condition at any given point in time is an exercise in insanity and really completely useless. The point is, I guess, vent, holler, yell, do whatever makes you feel better. We've all been there and if we haven't we will at some point in the future. It's the nature of the beast.

I'm sorry you're having a flare, but thank god you have a rheumy who will listen to you, see you and then actually treat you! Hallelujah!! That's a miracle in itself. a good doctor is one of your best weapons in fighting this monster. Yes, a cortisone shot is something my doc has tried on me too. We've also gone the route of being on steroids for awhile to see if we could get things under control.

Hang in there and keep us posted, ok? I hope the shot gets you up and feeling better asap!

Marta54-

beans have protein. Lots of it. Try having vegetarian chili or black bean burgers. There's also tons of stuff in the frozen section of the grocers -- I am assuming you already know this -- and gardenburgers aren't so bad. I usually get the _gardenburger_ variety.

You might consider talking to a nutritionist too about what other items have protein in it.

I know that when I make my hubby beef stew I throw in a ton of mushrooms so I pick out the beef and horde the mushrooms.

I, however, loved pretty much anything that goes moo baa or cluck cluck.

Clarebear

Clarebare,

thanks for the information about beans and other sources of protein. Seeing a nutritionist might be a very good idea. I don't have a great diet by anyone's opinion. My appetite comes and goes and there are times when nothing tastes good except an oreo and a coke! I do love mushrooms though and could probably get to like a vegetarian chili.

The next time I go grocery shopping i'll look for some black bean burgers and other items in the frozen food aisle. A friend of mine goes to the health food store once or twice a week so i'll tag along and see if I can find a better source of protein there.

Thanks so much for the suggestions!!!

To all of you, thankyou for the encouraging support. Yes, I am very lucky I have a great rheumatololgist. I am feeling slighty better this morning.

I'm glad you're feeling better today. Do keep us posted though, even on a not-so-good day. We all need support on the good days and the bad ones. I just hope that this is the first of a long string of "feeling better" days for you.

Here's hoping!!!!

I went back to my rhuemotolgist yesterday. It has been two weeks since he gave me the cortizone shot. I was feeling better but still some fatigue and some achy joints. He examined my joints and asked lots of questions. He ordered a bunch of blood work. I am really confused because now he says he doesn't think it was a lupus flare. Says the cortizone should have helped. It did somewhat! He thinks I am depressed and gave me lexapro. I am already on wellbutrin. Now wants me to take both. I am certain its a flare because of the butterfly rash. (one morning only) also, lupus fatigue is like no other. The joint pain is in my hands knees and feet. Yesterday I had joint pain in the joints closest to my fingernails on my hands. Two weeks ago it was also in my knuckles. Yesterday was only one knee, before it was both. The pain comes and goes throughout the day, and so does the fatigue. I told him all of this. Two weeks ago I had this horrible pain in the back of my neck and up into my head, that is gone. I am really confused by what he told me yesterday. He showed me some of my past years bloodwork. Always before my ana was positive, in 2002 and '03 it was negative. Didn't know this could happen???? I am on vacation this week and am just taking it easy.

I went back to my rhuemotolgist yesterday. It has been two weeks since he gave me the cortizone shot. I was feeling better but still some fatigue and some achy joints. He examined my joints and asked lots of questions. He ordered a bunch of blood work. I am really confused because now he says he doesn't think it was a lupus flare. Says the cortizone should have helped. It did somewhat! He thinks I am depressed and gave me lexapro. I am already on wellbutrin. Now wants me to take both. I am certain its a flare because of the butterfly rash. (one morning only) also, lupus fatigue is like no other. The joint pain is in my hands knees and feet. Yesterday I had joint pain in the joints closest to my fingernails on my hands. Two weeks ago it was also in my knuckles. Yesterday was only one knee, before it was both. The pain comes and goes throughout the day, and so does the fatigue. I told him all of this. Two weeks ago I had this horrible pain in the back of my neck and up into my head, that is gone. I am really confused by what he told me yesterday. He showed me some of my past years bloodwork. Always before my ana was positive, in 2002 and '03 it was negative. Didn't know this could happen???? I am on vacation this week and am just taking it easy.

Johnnie --

a very good friend of mine in texas also has negative results and her doctor says she doesn't have lupus. She's had lupus for about 4 years as far as I can remember (if you are reading this my friend please refresh my memory).

Test results are always very iffy. Lupus is one of the hardest diseases to pinpoint because it mimics other diseases and vica-versa.

It is never a bad idea to get a second opinion; even if the test results are the same another doctor may think something differently. Ask your current doctor to give you a copy of your medical records and bring them to whomever you get a second opinion from.

Glad you are taking it easy on your vacation; even if you are working non-stop it is always good to take time off even if your job won't allow it (if they won't allow it then maybe it is time for them to start allowing it). Having a day off once in a while to recuperate is much better than being laid up in the hospital with more severe difficulties.

Hope I was helpful,

clarebear

It is so difficult to wrangle your way to a diagnose that sticks with your symptoms. It seems like doctors, even...And maybe even especially.... Really good ones, take their time in diagnosing lupus and other auto-immune diseases. The diseases mimic each other, they throw random weird symptoms at you for no apparent reason and when you're feeling crummy everything seems to hurt.

It is incredibly annoying to be patted on the head and be told that you're "just depressed". First, depression isn't a "just" sort of a disease. It can knock you flat. The irritating part for me is that because many of the autoimmune diseases show up prevalently in women, sometimes it's pooh-poohed off as depression. If a man walked into a doc with swollen joints, body aches that knocked him flat and extreme, mind numbing fatigue, he'd be treated aggressively and he wouldn't be told that he was "just depressed".

Please understand i'm not slamming doctors!! I'm not! But it took me a long, long time to find two who would work with me through a 15 year long disease progression. I grew tired of being told I was depressed or that I needed hormones. I finally decided I had to find a doctor who was tuned into me! That wasn't easy, but well worth the effort.

The docs are sending me to mayo asap. I feel so lucky to find docs who would say "hey, I don't know what this is but we better find out!" and didn't let their ego get the best of them. Thank god!! There are lots of good doctors out there, you just have to find one that's right for you.

Good luck, and god bless!

I am not knocking my doctor. He has been great. I have gone to him for 20 years. I am only confused by what he told me two weeks ago compared to what he said yesterday. I think he should not have told me anything until my bloodwork came back.

Finding a good doc is a big part of the battle. I'm glad you've got one that has your history for so long!! That can be so important. I hope everything works out well for you and they figure out a treatment so that you're feeling much, much better!! Good luck!

I've been diagnosed with lupus for over 11 years and have had to change doctors, johnnie, and even though my old rhuemy has all the old test and notes, the new rhuemy still said " i'm not sure you have lupus!".

I think lupus should be called the great imitater. Just when you figure it out, it changes up. Don't get discouraged. Keep notes for yourself and for your doctors to see if there are patterns. Those of us with "less severe" or "not serious" lupus, as i've had some nurses and doctors refer to me, meaning not kidney failure or other major organ, are sometimes blown off. But to live with constant fatigue and pain is no laughing matter. To not be able to walk in the sun, is living like a vampire. So when someone tries to make you feel as if you are blowing things out of proportion, remember you have a whole web site of friends standing behind you for support!

Good luck,

mia

Very helpful post mia! It's so frustrating to be treated like there's nothing wrong with you just because you don't have a tumor or a broken bone or something tangible for a doctor to deal with. I went to a doctor not long ago who didn't believe that fibromyalgia was anything more than a way for middle aged women to watch tv all day. I'd hate to wish anyone ill health, but it might do this doc some good to walk around in the shoes of someone who deals with fibromyalgia on a daily basis. He might change his tune!

I've been waiting and waiting for the insurance company to okay a diagnostic trip to mayo. The doctors here have reached a point where they don't understand the blood tests and why whatever I have isn't responding to the traditional lupus therapy. The insurance company is acting like this is going to be a trip to disney world for me. Hardly! It would be nice to know what the heck is wrong and figure out how to treat it but I don't think that qualifies as a ride on space mountain!

Anyone else have any experience with the mayo clinic in rochester???