So confused and so tired!

General
1

I have had the diagnosis of lupus for about two years. That means I got it (diagnosis) when I was 66 years old. It was during a time after two major colon surgeries (with a colostomy), diagnoses of hypothyroidism, autoimmune hepatitis, and diabetes. It was like my immune system went nuts and tried every way possible to destroy my body.

So, the last 2-3 years have been a whirl of doctors and medications. Through it all I have been incredibly fatigued. Also in pain. One specialist sends me to another, etc. I saw a brand new rhuematologist on Friday. He is outside of my normal medical system (Allina). I took the last six months of medical info with me, including lab and exams.

During the appointment, he said that having lupus diagnosed at my age was very unusual..was I sure I had lupus?!! I pointed him to the lab results and the diagnosis by another Rheumatologist he knows. Then as I listed my symptoms, he kept saying that they weren't lupus connected. And yet, as I read here, all of my symptoms are also talked about as being part of lupus. I don't know what to do. He wants to run a bunch more tests which is OK, I guess. He does seem determined to get to the bottom of what IS wrong..at least he's not acting like I'm some mental case. So frustrating! I tell my friends that I am not feeling good and they get really tired hearing that. I get tired saying it. Does this disease ever stabilize? Will I ever feel like living again?

Susan

2

Susan,

Unfortunately the first couple of years after diagnosis are a "whirl-wind" of docs and labs, etc. I know this is scary not "knowing" what exactly is going on. If you are not comfortable with your Rhuemy get another one, now. You shouldn't have doubts about the care you are getting. Yes, there are instances of Lupus going into remission for years and some cases of people that NEVER have "flares". Although, it's not that often, it does happen.

As to being diagnosed at your age...that does not mean that you did not have it for years prior to diagnosis. Most people here will tell you that they knew there was something wrong for years and had many different diagnoses prior to Lupus. The reason is that because it's auto-immune it mimics many other diseases such as pnuemonia, COPD, anemia, proteinuria, stroke, TIA's, high BP...so many symptoms that could be so many other diseases. I have never had a positive ANA which made my diagnosis delayed by years.

Please read the tab at the top of this page that talks about Lupus. I think it will help you understand what you are experiencing. Know that you can come here anytime you are confused or afraid and someone will be here for you. You will find a way and we will be here to help you.

XOXO,

DeAnne

3

Ditto what DeAnne said.

I'm glad your doctor wants to get to the bottom of everything and is taking this seriously. It's so frustrating when doctors don't listen and don't really seem to bother finding answers for you. Once you get some final answers, you will feel a sense of relief. You'll know what you're dealing with and be able to make a game plan. I feel like lupus does stabilize to an extent. You'll learn what your body needs (like naps or frequent breaks) and the doctors will find a medication that works for you (though it can take a few different meds before you find just the right one). There's a ton of good information and support on this website. Make sure you use it because having a group of people who understand what you're going through can be a huge weight off your shoulders! I get tired of explaining how I feel to my husband sometimes so I always come here to vent, cry, and celebrate my little victories.

Praying that you get some answers and relief soon!

-Megan

4

Hi Susan

I was just diagnosed at 50, and I didn't have symptoms reappear until a year prior to that. I believe I had symptoms when I was 13 or 14, unexplained hair loss and fatigue. Then I lived symptom free until now. Tell your rheumie you and I are late bloomers : ) Trisha

5

I was diagnosed when I was 24 and it felt like my word had just fallen apart. I am 49 now and it seems to me that the pain and the tiredness just gets worse. The one thing I do know Is that I will not let this disease beat me. That's not to say that it does not hurt like hell. And yes sometimes it put me down for a few days at a time but I always find a way to get back up and live my live they best I can.

May God Bless all of you that are suffering I pray that things will get better for all of you.

Piewacket

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Dear Susan : my heart goes out to you!! I am 56 years old and I was diagnosed two years ago after 6 of going from one doctor to the next. None of them believed me I had anything at all because all the test kept coming back normal. Even my friends and family were starting to think I was crazy. Worst of all I started to think that too.

UNtil I found a doctor that was knowledgeable and caring. He told me I had Lupus and Sjongren Syndrome. At first I felt relieved to know it was not in my head. I can't imagine what it must be for you to be questioned at this point if you have lupus at all!!!

I spent the last years tying to learn how to manage this decease and I think I finally got to a good point. I went to a clinic in Utah since I don't believed taking lot's of pills will help us. And what i have learned so far is that "AT LEAST FOR ME" to keep this thing under control you need to keep three things BALANCED: YOUR MIND, YOUR DIET, AND YOUR MUSCLE TONE.

The first thing is to stop sharing your daily tortures with others ( very hard and unfair thing to do) learn to use your mind to balanced your body, meditation is a very powerful tool. By not sharing your pain with others you are going to regain authority over what you feel and want and you are going to stop the never ending trying to prove that this not in your head.

If you can't take a few days to go alone somewhere you can learn at home, there are a lot of material in how to use your mind to help you with this desease. The Diet is the most important part of this!!!!

I made the deception of really following this diet after months of feeling sorry for myself and not being able to eat like I used to eat before. Until one day 4 months ago my doctor wanted me to take yet another pill for my Sjongren syndrome. I had dry mouth to the point that my teeth are decaying, scratchy eyes and many more annoying symptoms. That day i made the deception to do this diet to the dot. I CAN'T BEGING TO TELL YOU HOW MUCH BETTER I AM!! i am not stiff in the morning, my left foot doesn't hurt anymore, I am not tired all the time. I am not symptom free but I am so much better!!. I wander what would happen if you would hold going to this doctor and spend more time and money on more testa and try another approach. I DON'T WANT TO BE OR FEEL RESPONSIBLE FOR YOUR DECISION, but I can not stop sharing with others what has done the miracle for me. Maybe next month will stop working, I don't know, all I knoe is that lupus has forced me in a way to take charge of my body and mind. Going to that clinic was the best deception I made. It took me a year exactly to really apply what I have learned there. But there are other wys to do it without spending so much money. The diet is called " THE ANTI INFLAMMATORY DIET" I HAVE POST THIS DIET ON THIS SITE SO IF YOU LOOK FOR IT YOU WILL FIND IT. If are intrested in more I will love to help!!! keep your hope!! I wish you the best Susan.

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Susan, you are going through a lot! I can see why you are so fatigued and in pain - with all of the other conditions you suffer from in addition to lupus. I don’t suffer from the other conditions you mentioned, but I know diabetes can also cause fatigue. It’s such a balancing act trying to keep your glucose levels stable by eating properly and on time and for type1 diabetics using insulin. It takes amazing strength to cope with all you are going through. You must be an amazing woman. I was diagnosed 5 years ago, but know I had lupus long before that. Through the years prior to diagnosis I was told it was “all in my head”, so I believed my doctor. They know more than we do, right? Not always. I’m glad your doctor wants to get to the bottom of this and isn’t treating you like a “mental case”. To this day, my general practitioner doesn’t know anything about lupus, so doesn’t believe any of my complaints are lupus related. My rheumatologist knows otherwise. She’s the expert more so than my general practitioner.
I remember when I was first diagnosed I could count more good days than bad. As the months went by I began having more bad days than good days. Eventually, there weren’t anymore good days. Everyday was filled with pain and at times despair. I also wondered if things would ever get better. It did. I began having more and more good days without the constant pain. Now I’m happy to say most of my days are “comfortable”. It took a few years to get to this point. I still get some pain everyday, but it isn’t constant anymore and comes and goes with less intensity than before. I’ve been able to manage my lupus pain with ibuprofen now. At my worst, I stopped seeing the beauty that we are surrounded with. Now that the pain isn’t constantly consuming me I can notice the beauty we are surrounded by once again like flowers, white fluffy clouds against our blue skies, a star filled night, a beautiful bright moon, a stranger’s smile, etc. Hang in there and keep hoping. Sometimes it does get better.

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I think I'd believe the Rheumatologist before I'd believe a Dr that doesn't know you. It takes a long time & many Dr visits sometimes to get an accurate diagnosis. I would keep a journal of my symptoms & continue seeing a Rheumatologist. There's medicine to keep the disease under control. You just have to get the right combination. It took me a long time to get a Lupus diagnosis & many Dr's visits. After I had my son I got nephritis & was diagnosed with Lupus. Everyone's Lupus is different. I know you feel right now like you'll never get any better. There is hope but you have to work with a Rheumatologist to get your symptoms under control. Don't give up, there's also support groups & this site to help you cope. God Bless

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Hi I am 72 and I am ANA positive since last summer/ I have the fatigue sun sensivity mouth sores rash on legs and arms and hair loss in 2 spots. According to my rhemy I have the worst kind =SLE

I am on plaquenil and my mouth sores are gone and my hair has grown in a little. I am thrilled with just the mouth sores gone. I guess I am in really good shape, for now . I have had a battery of tests including tesed for lyme disease. My white count was high which means infection but no fever My husband had a bad cold 2 weeks ago and of course i got it last week when i was in Vegas with my daughter. I have hypothyroidism but i've had that for 45 years. my pcp also sent me for a stress test and ecco. which came out normal. Last mon my pcp put me on an antibiotic for my cough and i feel alot better. My family and friends are good with my disease, but i try not to complain. I go at my own pace. My husband is very helpful arund the house. Thank heavens

freghtliner

Cindy

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Cindy,

Most of the members of this site do, in fact, have SLE. That said, there are dozens of different symptoms even among patients with the same "overall" diagnosis. Some have organ involvement, some skin involvement (discoid lupus), some lupus psychosis, etc., but all are symptoms of the overall systemic lupus.

Even with SLE, you might go into remission. Although I think people with Discoid Lupus would disagree, Systemic Lupus is the one that has more fatalities linked to it. That is not to say that it is a death sentence.

You will have up and down days. You may have involvement of any or no organs. Every day is a surprise, sorry it's not always a happy one, however it can be. If you couldn't get out of bed yesterday and you can today...that is a win! Celebrate it.

Mind set and positive attitude is absolutely imperative to your good health. It's great that you have a place to "go" when you are feeling off. None of us want to be a burden on our loved ones, but it is difficult to deal with this alone.

You are never alone here. I am thrilled that your mouth sores are gone as most of us know how painful they can be. Also, you are very lucky that you were able to get rid of your cold before it turned into something far worse.

Your white count may be high most times as your body is mistakenly attacking healthy cells as if they were infections. With a normal immune system we would ONLY see this when an infection was present, although that is not the case with us.

Anyway, it sounds as if you are doing well especially for the first year. I am finding that it becomes a bit smoother after the initial diagnosis is made. I am ANA neg so took a biopsy to find mine. Years of no treatment as no one looked further than the blood tests. Owell, can only go forward and celebrate what I CAN do, and not dwell on what I can NOT do.

XOXO,

DeAnne

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I know how you feel my dr.has no knowledge of lupus it is like i am the dang dr.telling him what is wrong only us living with this disease understand.We may look well but is not true.They say to think positive everyone tells me, blah blah blah.But they are not sick just pray i all i do. God bless you:-)

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Actually, he sounds like a good doctor, just reading your past, i actually also thought ..hmm, i wonder if some doctor diagnosed you as lupus as it is easiest and now one of most well known auto immune diseases. It is extremely rare for someone your age to be diagnosed with it and the fact you had auto immune issues already well think there might be more something that well, if treated correctly it get under control and you feel a ton better.

I like to remind people there are now at least 80 auto immune diseases, no one doctor can keep all those straight since many are just slightly different. Best thing is ask the doctor why medically they are thinking that way? Let them talk as they might have reasonable answer. If they cannot answer that question than you know they blowing smoke.

I also than do you have something specific in mind, than how will the treatment be different? If there is no different treatment, than ask why does it matter....if he going to put you through a lot more than a few blood, urine tests. IF the treatment will be same than why put you through all those test that just stress plus cost us? let him answer....if you feel that nothing will change and you personally do not care what it is called...say you cannot see how it will help you by knowing the real name.

So far, every doctor when i put it to them like that and if they did not have any treatment different than what they do for lupus...they said they saw my point and backed down. I told them that if they every think it is something that make difference in treatment i gladly go through it but first i want a good reason to spend the money and be tortured lol!

I don't argue....i just want to know why and what difference it will make. But i have feeling this guy has good reason....so give him chance to explain...and i always just do it if it is just blood and urine. i am talking about biopsies and other more painful or expensive tests.

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Hello there , Don't STRESS!!!!( easy to say than to do !!!, but it works ), the answer to your questions are , Stabilize -YES it does , Living again- No to what THE NORMAL way is for you , but yes if you put effert in the change okay - Yes,( alot of changes come with this-LIVING with LUPUS stuff) hang in there and be a fighter .....talk with you later Beverly L.