I know I am new and I am sure this is part of this, but sometimes I struggle whether the fatigue I am feeling is just because of the flare I am in or because I am sick again. It seems unreal that just sweeping my kitchen floor and vacuuming my living roomm can make me need to take a nap! I am on antibiotics for bronchitis again, but it is day 3...

Do you guys with SLE have such fatigue when you are "flared"...now remember, I have had a +ANA and a high SED rate but am waiting on further testing when I see the rheumy for the first time in March. My pattern of the ANA was smooth and I have now had at least 4 most-likely six of those
criteria listed above.

How do you handle the frustrating days? I am very frustrated that that simple chore wore my out!

I have had fatigue on-and-off for 4 years but this fall/winter has been the worst, which is why I think the possible disease has been found.

So, how do you guys handle it? Is it my body saying "rest" or do you just fight it and clean the whole house?

And JVEE how in the world have you gotten to a state where you never hardly get sick anymore. What causes remission in lupus to occur? That is my goal for sure!:blob_fire but today I feel....:(

Thanks...your lupus newbie,

dj

Hi. I'm sorry you are feeling so worn down. I attribute my improvement not to "remission", but to being on PLAQUENIL. This week I hurt, am tired & have oral sores again. So I got out the Orabase paste (for the oral sores).

I understood from your previous posts that you aren't on any medication. Is that true? Thinking of you, Vee

You are correct, Vee, I am not on any medication directly related to lupus because I have my first rheumy appointment next month. I do take some natural things like DHEA, B12, Omega3s, progesterone, and there is only one NSAID I can take because Vioxx ruined my stomach years back. I also recently added a vitamin D3 combo tablet that has zinc and selenium which is supposed to help your body's immunity act properly and not turn on itself. I don't know if it has helped very much.
The testing has not determined the exact inflammatory/autoimmune process that is going on in my body (it was my dentist who found mine because of the benign oral lesions).

I am sure today I am just fighting something so it is adding to the fatigue...I am sure that is a very common thread in this forum, but there are times I am so tired of being tired and ready to begin to get some relief! So, forgive me for grumping...there is not many places you feel you can do that, as probably many of you can attest to as well.

But I am going to fight with all I can to get as much of my life back as possible! I am in that limbo stage where your internist doesn't want to do further testing and is just taking care of the symptoms and having my first appointment with the specialist. Hard place...don't have definitive diagnosis, can only put Band-Aids on things it seems.

So, even on the medicine, you still have days that involve fatigue? You said you are still have painful weeks but that you don't get sick much? At least that would be an improvement. I guess each person has differing levels of disease.

Thank you so much for your reply. I hope that by our posts someone who is more shy is encouraged, because I really do feel isolated right at this moment and am very glad I found this sight.

I think the hardest feeling is that you are a "burden" on your family, that everyone around you is tired of hearing it, and you can never "be yourself", i.e. tell how you really feel, so you walk around wearing a mask the "I'm fine" mask all the time or you don't get out at all.

I'll just bet that most of you go in and out of times like this if I am to understand lupus correctly. I know I have done the isolated thing for sure and I was a very outgoing, complete people person and now I just don't want to get out cause it takes so much energy...

Is it just that I am in the beginning stages and I will learn how to cope or do those of you who do very well, have you pulled you yourselves up "by your boot straps" as we say here in Oklahoma and push on through...

Thank you, Vee, for responding...I am sorry this is such a downer...I know that one day I will be able to offer encouragement and support. But today is a struggle day. I hope this is for emotional support and how to learn to live with this thing called lupus as well.

Dear DJ, After I finally became aware that my local drs. suspected lupus, I made it a point NOT to take anything extra, like OTC's, herbs, supplements, etc., other than Advil. My thought was that I wanted them to see me "bare-bones". But whether this approach helped or not, I don't know. What did help: a fine rheumatologist, affiliated with a big-city teaching hospital. (I was ANA-negative, which isn't common. Talk about diagnostic limbo! :eek: )

Are you familiar with Dr. Daniel Wallace's lupus hardcover? It's available in most libraries & bookstores. He does mention a few of the things you are currently taking, but not in great detail. (FYI, another good author: Dr. Robert Lahita.)

Yes, only a subgroup of my old problems rear up. In over six years, not one trip to hospital or ER & I call that progress! Interesting, this winter my husband got every "bug" that's gone around. I didn't. Instead, I hurt, got very tired, and my blood levels headed closer to anemia again. My immune system seems "good" enough to block this stuff but still "bad" enough to create lower-level flares. But compared to how I was before, I'll take it!

Hang in there, OK?! I hope the weeks go quickly for you before your March appt. Again, I'm glad you found the group here. Bye for now, Vee

Dear DJ, After I finally became aware that my local drs. suspected lupus, I made it a point NOT to take anything extra, like OTC's, herbs, supplements, etc., other than Advil. My thought was that I wanted them to see me "bare-bones". But whether this approach helped or not, I don't know. What did help: a fine rheumatologist, affiliated with a big-city teaching hospital. (I was ANA-negative, which isn't common. Talk about diagnostic limbo! :eek: )

Are you familiar with Dr. Daniel Wallace's lupus hardcover? It's available in most libraries & bookstores. He does mention a few of the things you are currently taking, but not in great detail. (FYI, another good author: Dr. Robert Lahita.)

Yes, only a subgroup of my old problems rear up. In over six years, not one trip to hospital or ER & I call that progress! Interesting, this winter my husband got every "bug" that's gone around. I didn't. Instead, I hurt, got very tired, and my blood levels headed closer to anemia again. My immune system seems "good" enough to block this stuff but still "bad" enough to create lower-level flares. But compared to how I was before, I'll take it!

Hang in there, OK?! I hope the weeks go quickly for you before your March appt. Again, I'm glad you found the group here. Bye for now, Vee


Vee,

I had wondered if I should be taking those extra until I saw him....don't want to mess us any blood tests...There was one other anolmaly on my original blood test that my internist didn't seem to think was significant but of all I have read, it may be...I had a love MPV or mean platelet value...granted it is not completely in the tank, but it was low and when I asked him about it, he sort of blew it off. I know it has something to do with our immune systems though. Also, all of my blood counts were in normal but all "low normal" if you know what I mean...they were riding the fence between normal and low but I am thinking a rheumatologist would look at all my blood work differently than he would. He had a positive ANA and a high SED rate and that was enough to get him to refer me.

I just had a crazy neurologist tell me that it was because I had taken any pain meds at all, what started off as normal migraines are probably now because I have used pain medications for them....boy was I upset after that appointment! I told my internist and he was very upset at that neurologist and the fact that he did not even consider lupus as a contributing factor to them. He is a good doctor to be sure and I feel lucky to have him (internist...not sure if I will go back to the neurologist) ;) .

Anyway, it sounds like you have had quite a ride. I am learning this is not an easy disorder to live with and there are varying levels of disease and involvements and even types.

Thanks for the book suggestion. I actually already bought it! I told you I was going to fight this thing and you know knowledge (well, correct knowledge) is power!

Talk soon and thanks for all the uplifting words! I am feeling better already knowing this place exisits!

Diane

Diane, MCV is "mean corpuscular volume", a measure of the size of red blood cells. While there are *multiple* reasons for this test being elevated or depressed, one is anemia. Some types of anemia can elevate MCV, and other types lower it. Why I know actually know this one: my MCV goes off, even now. My B-12 and Folate levels were too low for years, suggesting the vitamin form of anemia.

If I'd realized many of my problems were (probably) related, I'd have kept copies of all my labs, to offer them to new drs.

On taking supplements: I'm a "less is more" person for another reason, too. Over many years, I was given Rx'es that either didn't help or made me feel worse. And I was given horrible & sometimes cruel advice. e.g., Get rid of your dog. :mad: Have a hysterectomy. :mad:

Well, must go & pat my little DOG. :D Bye for now, Vee

Hi,

When I've been in flares, I've had pretty severe fatigue. I could sleep all day if I let myself but the worst was the general body fatigue. My muscles felt like I had just done a triathalon without ever training for it. It's deep, burning, muscle pain all over. It was hard to go up just one or 2 steps on a staircase. When I was given prednisone to try for the first time..it totally eradicated my fatigue & I was even able to exercise fairly hard without soreness. My fatigue even went away when I had epidural steroid injections for a spine issue. I have been on plaquenil for quite some time and it definitely helps.....I still get fatigue, but it's much milder. I've also had some flare ups , but they were milder and didnt last long. The flare ups mainly occured after a course of medrol dose pack and after my injections wore off (and after this, my flare & fatigue were horrible...but again only lasted about 2 weeks, probably due to the plaquenil)

I see that I am coming a bit late into this discussion. I found it by googling "lupus fatigue." So now I've registered so that I can weigh in on this HUGE topic for me.

First, Diane, let me tell you that you are not being "a downer." We are all suffering pretty similar things, here, and nobody but other lupus sufferers understand the frustrations. They want to; they mean well, but they don't. so of course you are supposed to come here and tell us exactly what you're feeling. (Although I'm new on this board, I was a member of another board for a very long time, so I know the ropes.)

Now, since I was diagnosed in late 1982, I can give you some long-term perspective -- although I do so with the caveat that no two people's lupus evolves in the same way. When (or if, but probably when) you are finally diagnosed, you can first breathe that sigh of relief most of us felt when we were finally told we weren't crazy, that there really was something wrong with us. My lupus was diagnosed six years after the onset of symptoms. I spent a good part of that time trying to get to the bottom of what the heck was wrong with me! As an admitted Type A perfectionist, I couldn't STAND having my body put limits on me! I had already married, had two kids, designed and built my house, and was now in college, and had lots of plans for the future. Suddenly it seemed like I was tired all the time, and just couldn't get my body to do anything anymore. Oh, let's not forget that I was also a dancer, having performed in an off-off-Broadway children's play, as well as a semi-professional film, and had just spent a year competing in figure skating! Even as a married woman, I greeted every Spring with a hand-spring and cartwheels on the front lawn! Now I couldn't do any of that, and I wanted answers. I wanted answers so I could fix it, and get back to my life. Little did I know that my life would never be the same, again.

So, for six years I dragged myself to my classes and to work, pushed myself through all the weakness, and just dropped dead asleep when I got home, and didn't understand. Until I became very ill, spent three weeks in the hospital undergoing a myriad of tests, and finally emerged with my diagnosis. The first thing my second husband had me do, is write and sign a declaration that I would start LISTENING TO MY BODY, and allowing IT to dictate what I could and could not do. After a year of recovery, and on high doses of prednisone and Plaquenil, I was able to return to work, and I will say that I did all right for quite a number of years. I changed my career, and did very well in my second career as a contract interior designer -- a job I kept for eighteen years (and I'm still officially listed as an employee) -- and even returned to grad school, although during that time I had my flare-ups and set-backs. I should say that all of my employers were always terrific in their understanding of my illness, and making allowances for me. Even before the ADA was passed! Frequently, I just wouldn't be up to doing anything, and then I had to stay home. That is a part of living with lupus. All in all, however, I thought my illness wasn't really interfering with my life, other than the weight-gain do to the prednisone. That was hard to bear, and still is. I have WAY too much ego to be carrying around all this weight! And yet, here it is.

I guess the big change came when my rheumatologist thought I might do okay without the meds, and took me off the prednisone first, and many months later, the Plaquenil, too. For a while I was all right. Then the fatigue started creeping in more and more. Often, I would have months of debilitating fatigue, and one day, I'd find myself doing more stuff, and realized I was doing better! And then a few months after that, I found it too hard to get out of bed again. This went on for a number of years, each period of unfathomable fatigue lasting for six months or so! During those bouts, I would live on the couch, because coming downstairs was okay, but I just couldn't make it upstairs again. If I wanted to have any chance of feeding myself while my husband was at work, I had to live downstairs. Well, I am now in another one of those bouts. This one has lasted more than two years now. I am doing my best to not get completely discouraged, and am on SSRI's to help with that. I am fortunate in that I have always been creative, and am able to keep myself busy and entertained on my laptop, doing digital graphics and animation on the web, and posting my results on a board of like-minded people. I'm even writing tutorials! This also keeps me from having OTHER creative ideas -- ones that would require a great deal of energy to complete. But although I get my typical elbow, knee, hand and foot lupus pains once in a while, they are not my greatest complaint. It is the fatigue that is completely debilitating.

I don't even want to call it "fatigue." The word implies prior exertion. This is an inner weakness that is there from the moment you wake up until you fall asleep, and I'm sure, it's there while you sleep, as well. It is a weakness that makes every movement a chore. It's a weakness that makes you say, when you have to go to the bathroom, "All the way over there!?" It is a weakness others don't understand. Even our best friends, who were there during my years of confusion, during the period of diagnosis, who were so supportive during my struggles with the illness, are starting to wonder whether I've just become a hermit because I want to be. That is not the case -- I HATE being so impotent! There is nothing I'd rather have than the normal-human amount of energy to just do whatever comes into my head! We have a subscription to the NYC Ballet -- best seats in the house on a Saturday night -- and I miss more than I can attend. And when I do go, I pay for it for at least a week! I have made so many things in my life, and now, I think of these things, but can't make them. There is a full-sized Santa still waiting for his suit. That's just one of many things. I want to go back to my summer painting workshops in Woodstock -- but I don't have it in me. This is NOT by choice, and I wish more people understood that.

My Rheumie says that lupus fatigue is frustrating for her, too, because there's nothing they can do for us. Since I am holding steady otherwise, and the disease is not snowballing, she doesn't want to put me back on prednisone. She says it's just another part of living with lupus. (Sigh....... )

So, when you, Diana, feel like this weakness you are feeling is really getting to you, take heart, you are at least not alone. Now try to get others in your life to understand you. A very difficult task, to be sure. I just hope you get diagnosed soon, so that you can stop living in limbo.

I hope this has been of any help to you, at all. Perhaps not the news you wanted to hear, but I understand that. I was in your place, once. It's still hard for me to accept, even after all these years. In my own head, I'm still a young, vibrant, strong, THIN, and capable young woman! Ah well.

All my best, my dear!

Gigi

Hi GiGI and Diane,
I too am in the process of being dx. I was started on plaquenil after my labs came back positive ANA1:320 speckled and having joint pain, mouth sores that won't heal and fatigue. The plaquenil has helped with the fatigue, I take aleve for pain(sometimes helpful) and a B-complex vit. for the mouth sores (recommended by DDS) With these issues somewhat under control My big problem now is Brain Fog, I forget what I am trying to say, I can't find the right words, I drive past my intended turn or destination and I am having trouble spelling. I can look at a word and can't tell if it is right. I go back to see rhuemy in April so I will discuss if not cleared by then. Does anyone have this problem?

Blessings

june

June, How long have you taken Plaquenil? It takes some months (4 to 6) to reach its full effect. I hope you keep improving. I had the brain fog too, and I hated it, and still feel it during flares. (Ugh!) Bye, Vee

well ive had lupus since i was 11 years old( im 29). my lupus is in remission but i still suffer from being fatigued. so, it doesnt neccessarily mean that youre having a flare.
yes! winter is always the worst. i know i went to a orthopedic doctor one year and he said that taking hot showers in the morning helps. i try and soak alot with bathsalts and candles for relaxation. try stretching everyday too.
but days that im fatigued, most of the time i fight it! i dont want to get used to being defeated by this illness. but then i have my days when im like, no, no, no! i cant do it today. today....i have to rest.

Yes, June, you sure do have many of the important symptoms of lupus. And actually, lots of lupus patients have brain fog. I don't don't know if it's always associated with CNS (central nervous system) involvement, or whether it can also be due to other things, but that is one possibility. And Vee is right, it takes about four to six months for the Plaquenil to kick in, so I hope when you are there, it will be alleviated. I would think that in remission, your brain function should return to normal.

And lupusolider (sorry, you didn't sign your name), I'm sorry to hear that you've had lupus for so long. It must have been very hard for you to have to deal with a serious illness at such a young age. I'm also glad to hear you are in remission! Good for you! Sorry you're still having fatigue, but it's common in lupus for the fatigue to continue even in the absence of all other lupus symptoms and manifestations. The medical establishment is very bewildered by that fact, and is looking for a reason. I applaud your outlook, and commend you for not letting the illness get you down. But I also want to caution you to not overdo it -- especially when something exciting is going on that you want to be a part of, and you're not feeling up to it. By pushing yourself, you are able to do what you do only by putting stress on your adrenal glands, forcing them to pump the adrenaline (epinephrine) and cortisol that you're supposed to be using only in a "fight or flight" situation. This is STRESS to your body, and we know that stress is one of the triggers of flareups. So please, do listen to your body -- and OBEY!

Gigi

Hi, I would like to ask GIGI what finally made the doc put you in the hospital? I am having such a terrible time right now, my blood work is not completley positive for lupus, it is borderline positive.(this is what I;m told by one doc). I have all the symptoms but also have fibromyalgia(diagnosed 14 years ago). The fatigue and joint pain is so bad now I can hardly walk and I have a 4 year old so I cannot just lay down. I am now at the point where I am afraid to go out with him for fear of collapsing. Of course he doesn't understand and shouldn't have too. I have a doctors appointment on Thursday and just wondering at what point do they hospitalize you? Do you get answers and tests done quicker? I cannot go on like this much longer as it seems to be progressing rather quickly and supposedly fibro doesn't do this. Any help would be great from anyone, it's just that I saw Gigis post about the hospital so thought I would ask. I don't like hospitals but I like this alot less. Thanks all.
Kara

Ah, dear Kara. Whew! You are going through hell. I am so terribly sorry to hear that. I'm happy to answer your question.

Here is the sequence of events that landed me in the hospital. After the six-year weakness that impelled me to seek the answer to my problem, including a two-day series of tests that concluded in a diagnosis of hypoglycemia (which I thought was THE answer, and I followed by an eight-month diet of high protein and unprocessed carbs), the incident with the eyes and the sulpha drops followed. At one point, I put both of my elbows on my drawing board to ponder my work, and was surprised to find they both hurt. Trying to hold my technical pen was hard, since my fingers were getting too thick to bend properly, and the hands were hurting, as well. And when I attempted to paint the legs of my drafting board, my knees were in such pain that I put pillows under both of them. Walking up the stairs caused me to really "feel" my knees. I knew something systemic was happening, but I had trained myself to NOT be a hypochondriac, so my response to all these alarming symptoms was to do nothing.

A good friend kept telling me to see a doctor, and I'd agree, but do nothing. Then she dragged me over to a doctor friend at a party, by my wrists, and put my hands under his eyes. He looked at them, felt them, and told me to go to my doctor right away. His wife pulled me aside to inform me that her husband was the antithesis of an alarmist, so that if he said to, I had better! And yet, I still did nothing. Finally, my friend had enough, and pushed the button on her phone to our neighbor, a doctor who was the medical director of a local hospital. I made an appointment to see her at the hospital. The first time, she just sent me to the lab to have blood drawn. I left the hospital, went to my car, and fell asleep for hours. That evening I received a call that they would need more blood, that there had been some troubling 'liver' readings. Needless to say, during all this time I was having a harder and harder time dragging myself anywhere. The next morning, I was unable to go anywhere. I had washed my hair during the night, wrapped a towel around my head, and fallen asleep. I asked my husband to call the doctor to call off the appointment. He said, no, I was going, even if I had to go with a towel around my head and in my bathrobe. So he took me, and I was a mess. The moment I got into my neighbor's office, I threw up on her floor. She called the lab to come to me (and someone to clean up the mess). So they drew more blood. By the end of the day, she called again, and said she didn't want to put me through that again, but that more blood was needed, and she'd bring vials and draw blood herself, at my house, that night.

By the time she got there late that night, she was suspecting lupus, but she didn't tell me. I found that out, later. She examined my hands and elbows. My elbows were huge, swollen, red, and HOT to the touch. The inflammation was raging through my body. She found a huge ulcer in my mouth, which I had already found with my tongue, although it was surprising to me because it was painless. I'm sure it wasn't surprising to her. She told my husband to take me to a closer hospital (her hospital is for geriatric patients), to the emergency room, and that she was calling in a rheumatologist, who would admit me that night. That was how I ended up in the hospital. You have to become deathly ill!

The first thing that happened to me there is that I continued to go downhill. I was nearly in a coma, except that I was still conscious. I could think in my own head, but couldn't really deal with, or talk to, anyone outside of me. It was at that time, when I was more weak than I ever thought anyone could be, that death was the most seductive thing I had ever felt. I longed for it in a sweet way, not a scary way. If the images of my two young sons, and my bereaved husband, hadn't kept appearing in my mental viewfinder, I am certain I could have just 'let go,' and gone.

The rheumatologist got me an IV as soon as I got there, and they pumped me full of antibiotics and cortisone. They wanted to apply a two-front approach, because the diagnosis wasn't firm -- so they hit me with all of their artillery. After three weeks, the rheumy came and sat on my bed, and said, "We finally have a diagnosis." And I said, "Good." And she said, "No, not good." And then went on to explain everything to me. Had my head in a spin.

I sincerely hope you don't get as sick as that, in order to get your diagnosis. Do remember that it takes an average of six years for most lupus patients to be diagnosed, so don't be surprised that it's taking a long time. It's simply very difficult. Any time you get a negative result, it doesn't mean you DON'T have lupus, so they have to keep testing. And there is no definitive test.

Best of luck, Kara!

Gigi

Thank you Gigi, I'm so sorry to hear all you had to go through to get diagnosed. You were very lucky to have such a good friend and husband. I do not have this kind of support, my husband gets impatient and thinks there is a magic pill out there somewhere that I am just not looking hard enough for. Even as he watched me on Sunday unable to get up and down the stairs without terrible pain and then saw me rubbing mineral ice on my knees(he said wow your knee looks swolen) Do you think he got off his but to take the dog out? This also requires stairs. I don't even say anything anymore, what's the point? So I took the dog out and went to bed, shut the door and didn't come out till I heard him making dinner. I don't say much to my friends anymore because I always hear "oh I have days like that too, you need to get out and do something, take your mind off it" What mind? I can't even think straight in that kind of pain and fatigue and the effort it takes to explain is just not worth the energy I already don't have. I used that last night to help my son use a scissor and had trouble with that. He finally took it and said I can do it mommy, it;s easy. And watching him it was easy for him, just hard for me. I go to my doc tomorrow, Is there anyway to get just one pain free day? My house is a disaster and my son is bored. It hurts when he cries for his father or even his grandmother because they are fun to be with. I will have to push myself today for his sake as he is a very sensitive kid and picks up easily when I'm feeling really bad and it scares him. Thank you for the support, I will try to check back later.
Kara

Kara, I can well imagine how terrible it must be to have a husband who doesn't understand. I know how often I've been grateful to mine. The truth is, I don't think I would be here anymore if it wasn't for him. Your situation sounds pretty bad. If the stairs are already too much for you, and if you can't use the scissors, then you are where I was just before I went downhill even faster before diagnosis. If this isn't treated right away, it will snowball. If you remember your high school biology, when the immune process starts, it draws complement to the area which increases the immune response. So there is a snowballing effect. This is very helpful when the body is fighting a virus, or bacteria. The extra fire power will help kill the offenders. But when the "offender" (not really, just perceived to be by your immune system) is your own tissue, nothing is being killed -- and there is always more of it to stimulate the immune response! That's why you need prednisone, or something, to suppress the immune system. It's far from being a perfect remedy, of course -- when your immune system is being suppressed, it means that it also isn't there when you DO get a virus. That can become dangerous. Prednisone also has its own side effects, ranging from possible cateracts to osteoporosis, but I was on it for sixteen years, and am okay. Also, if you are put on prednisone, your doctor should tell you that you MUST take it exactly as prescribed, at the same time each day (you produce different levels of certain hormones at different times of the day), and that you can never go off it by yourself... you have to be weaned off. That's because when the adrenal glands get cortisone from outside, they don't need to produce any, so they kind of go into hibernation. They have to be stimulated back into action by the slow weaning process. If you're on high enough dosages, you should also wear a MedicAlert bracelet or necklace, because if you're ever subjected to huge amounts of stress, with your adrenals not working, you could go faint, go into a coma, and need a cortisol injection to bring you back. I hope I didn't get way ahead of things, but from what you say, you've already got quite a bit of inflammation -- disease activity -- going on in your body. They really have to hurry up with that diagnosis. Even if your doctor just suspects lupus, he or she should treat it, regardless of your getting a written diagnosis.

I want to suggest that you bring your husband to the doctor appointment. (He can take the time off from work, given that this is a family-health situation! My husband went with me to every appointment, and for a while I was going twice a week!) Take him with you into the examination room. Let him see how the doctor examines you, and the questions you will be asked, and let him hear your questions and the responses. And if you can manage to tell the doc that your husband suspects you are malingering, I'm sure that he will get an earfull! By now, your doctor knows you have some kind of auto-immune disease, so even if there is still a reluctance, or not enough lab evidence, to support the lupus diagnosis, her or she can tell your husband that you are sick, and what you need from him, and how he should be helping you. That is not a guarantee he will, of couse, but at least you will have the testimony of an expert witness!

And now to address the thing about this that gives you the most pain -- your little son. I'm so sorry you got sick just at this time in his life. Unfortunately, this is when lupus strikes women -- as young adults. Me too. My sons were a little bit older, but they still needed me. Luckily there were two of them, so they had company and could entertain each other. (And unfortunately there were two of them, looking after them was like looking after five boys! They managed to get into a lot more trouble with two heads to think of things to do.) Now is the time to get some help. You need a mommy's helper, in the form of a young girl, who will come over after school, and basically play with your son. Many women hire one so that they can get some housework done. You need someone to play with your kid. Don't worry about him spending time with someone else, he's never going to bond with anyone the way he has already bonded to you. He can use the diversion; he can use the mental challenges of game-playing; he can use the social interaction. It's all good. And it will give you time to rest without guilt. You really need this. And you pay her no more than you'd pay a babysitter. You must do this for yourself, Kara! Maybe you can bring it up at the doctor's appointment, to get his/her response in front of your husband.

Please, insist about his going with you, and insist on the mommy's helper. These are two small things that will help you during this difficult time. If you get some support from your husband now, maybe the additional rest (and lack of STRESS!) will help ease you into remission, and then he'll have his wife back. If you remain stressed out about it, and if you keep pushing yourself for your son's sake, you will only get sicker.

All my best, and good luck, tomorrow!

Gigi

Dear Dmarieok I was Diagnosed one year after highschool with lupus and am tired all the time .IHave Red on my face all the time ,but the docters havent told me anything.I dont know what to do
Sweet Friend

Dear Sweet Friend,

You sound very sad and bewildered. We can all understand that, so you've come to the right place. I'm not quite sure what you mean when you say that doctors won't tell you anything... Sorry about that; it's just that most people who say that are waiting for their doctors to finally give them a diagnosis. That's why I'm confused. If you already have a diagnosis, I have to ask myself, what is it you want to be told? Are you being treated for lupus? Are you on medication? If yes, what kind of meds are you on?

I'm so sorry that you are feeling bad. I am tired all the time, too. And weak. I do understand. How old are you? You said you were diagnosed a year after high school -- was that two years ago, ten years ago, twenty years ago? Just need a frame of reference.

Well be glad to help you any way we can... Looking forward to hearing back from you!

Gigi

Gigi, thank you so much for all the advice and kind words. I find it amazing and, well sad that I can get this much support from a stranger but not at home or from friends I have known forever. Maybe my husband is just in denial? You know pretend it's not happening and it will go away? I prefer this to the alternatives anyway. Well I'm babbling-too tired to concentrate right now and have to get ready for the doctor. I don't even know what to say to him anymore either or if there is more bloodwork he should be doing. I already have high anti- nuclear titer, speckled ana pattern, very high igm (828, normal is 48-271) and anti-nuclear ab is equivocal. I don't know what all this means but will try to get better explanations today. Any idea what else I should ask for? Thanks again.
Kara

Dear Sweet Friend,

You sound very sad and bewildered. We can all understand that, so you've come to the right place. I'm not quite sure what you mean when you say that doctors won't tell you anything... Sorry about that; it's just that most people who say that are waiting for their doctors to finally give them a diagnosis. That's why I'm confused. If you already have a diagnosis, I have to ask myself, what is it you want to be told? Are you being treated for lupus? Are you on medication? If yes, what kind of meds are you on?

I'm so sorry that you are feeling bad. I am tired all the time, too. And weak. I do understand. How old are you? You said you were diagnosed a year after high school -- was that two years ago, ten years ago, twenty years ago? Just need a frame of reference.

Well be glad to help you any way we can... Looking forward to hearing back from you!

Gigi

Oh, shoot, Kara, I am sure I'm responding too late for your doctor's appointment! I was writing to Sweet Friend, and fell asleep next to my laptop (I'm living on the couch.), and when I woke up, I thought I hadn't sent it yet, so I submitted my reply. To my surprise I found I had double-posted it! Sorry about that, too.

Look, this is all new for your husband, and your friends, and I'm sure they are all still in denial. Don't you, on some level, also still wish it couldn't be true? The difference between them and you is that you feel what's wrong with you every minute, and they don't. To them, you still look like the same person -- they don't have the "benefit" of feeling what you feel. So you can give them a bit of a break, at least by understanding that this is hard to accept.

Once they REALLY get it, I'm sure they'll be more understanding. The best way to speed that along is to educate them. I think all lupus patients have to educate others in their lives about the disease. This will be easier when you have a firm, written diagnosis. And even then the disease is hard to explain, because it takes so many forms. There's always somebody who knows someone with lupus who is working and looking fine (even if only on the outside), so they might not understand your weakness.

I hope you get your diagnosis -- like TODAY! It will certainly help get that comprehension process going! Not to mention make you feel less dazed and confused about what's going on with you. And, by the way, you get more understanding here because we all have the same thing, and we've gone through the same problems you're going through. That's all. Don't think less of the people in your life who haven't -- this is all new to them.

Let us know what the doctor said, okay?

Gigi

Hi Gigi, You're actually not too late because I'm going to make an appt. now for a rheumotologist. My doc today says I'm in a reaaly bad flare and offered a 7 day course of steroids to get me through it but said I would most likely crash after that and end up worse so decided against it. He did order more blood work to see where we are at though I just don't understand what the tests mean(prev. post) and I guess you're right about the people in my life not understanding because it's happening to me and I sure don't understand it. I'm supposed to get some rest and take it easy, well we'll see how that goes. Any info on the tests I mentioned previousley? Sorry spelling is off tonight. Going to try to sleep now.
Kara

I'm very glad to hear that your doctor is sending you to a rheumatologist, Kara. That's the first step to finding out what's wrong with you, and the right doctor to do so, if you have lupus. Your positive ANA is a very good reason to suspect you do, although other auto-immune diseases show positive ANA tests, too. I also have the speckled pattern, incidentally. I can't tell you what the igm test is you referred to. And since I'm not allowed to put links to another site here, I've tried to do some research for you, but to no avail. The site that used to give actual numbers for lupus test results is no longer active -- at least at the address I have. However, at least I found you a list of tests used in diagnosing and monitoring lupus:

Albumin
ANA
ANCA (antineutrophil cytoplasmic antibodies), P-ANCA (perinuclear) C-ANCA (cytoplasmic)
Anti-Cardiolipin (Anti-Phospholipid)
Anti-DNA
Anti-Ro/SS-A
Anti-Sm antibodies
Blood Urea Nitrogen (BUN)
CBC
Complement studies
Cholesterol
CPK
Creatinine
Creatinine Clearance
Differential Neutrophils, Lymphocytes, Monocytes, Eosinophils, Basophils
ENA (Extractable Nuclear Antigens)
Erythrocyte Sedimentation Rate (Sed Rate, ESR)
Immunoglobulins (IG)
Iron
Rheumatoid Factor
White Blood Count (WBC, Leukocyte count)


I have no reason to believe your rheumatologist won't know to have these done, however. I'm sure all of these will be ordered, and possibly more. My rheumatologist often uses the sed rate to see how I'm doing, although it tests only for a general level of inflammation in the blood stream, and is not lupus-specific. A common cold will also elevate the sed rate. From what I know, a level of 5-20 is normal for women. My lowest, since my diagnosis, has been 35. When I'm very ill it's between 65 and 90+. Those numbers are just some guidelines to help you gauge what they mean when your sed rate comes back. On your paperwork it might be referred to as "Erythrocyte Sedimentation Rate," or even have the name "Westergren" in front of it.

But that's for monitoring illness. For diagnosing, the ANA, anti-cardiolipin, anti-DNA (especially ds-DNA -- double-stranded), anti-Ro/SSA, anti-SM are very helpful. These are all antibodies people with lupus make to their own tissues. Your immune system isn't supposed to make antibody against self! It's supposed to attack only foreign microbes. All people with auto-immune diseases make antibody to their own tissue. It's the hallmark of these diseases. I don't know anything about that ANCA test on the list. Maybe it's a newer one.

Kara, please consider what I said about insisting your husband join you for your appointment with the rheumatologist. You do not have this disease by yourself -- everyone you know will somehow be affected, to varying degrees. But your husband is involved in a huge way, so he needs to be there!

Please rest and take care of yourself. Stress and sunlight are triggers, so avoid them if possible. Let us know how it went, okay?

All my best,

Gigi

Me too for the hideous fatigue, brain fog, memory loss, inability to articulate thoughts, getting lost while driving home, and having a spouse in total denial. It took 2 years before he stopped suggesting that I just needed to "get out and get a bit of exercise and sunshine." When I began the horrible year-long flare I'm in now - I also had to take to the couch. Could not get up the stairs, could not take a shower sometimes for a week! It sucks! I began thinking that crazy astronaut lady may be onto something with the diapers.

Anyway, there is no way to paint it in a positive light - the limitations are hard for the patient to accept and near impossible for anyone else to understand who doesn't have these symptoms. The hardest part for me is the unpredictable nature of the symptoms because it has made working impossible for the past year - I never know when I can't get off the couch until I wake up that morning and can't get off the couch!

I must say it is comforting to know I'm not alone, and I appreciate the comments of others posted here. I do not have children, just pets, and decided last year that I would simplify my life by whatever means necessary to lessen the impact of the disease. For me that included kicking my spouse to the curb. His denial - watching TV in another room while I thought I was dying on the couch and my sister took care of me - made me very angry. And I had a constant nagging guilt for not being a fun mate to bum around with anymore. He did nothing to assuage my guilt and not much to help me recover. With lupus, for me, I feel like I'm fighting for my life - or my quality of life anyway - and anything that detracts from that or complicates my mission had to be cut out. So try not to feel too bad about losing your friends who don't understand - that is their failure - not yours! Same with family - just because they're relatives does not mean you have to tolerate the insensitive ones.

Now that's a rant! I feel better already. Thanks for letting me share. Now I'm going to watch the Daily Show and have my daily dose of laughter - which is absolutely critical!!!

Let us all feel better!!!

Jennifer

LOVED your post, Jennifer! You write a lot like I do -- I don't know too many other people who use words like "assuage" on a regular basis! And I also totally agree with the need to bring lots of humor into your life. I've always had that, and I love to laugh. I'm the type who makes others think they're really witty, because I laugh so easily. :D

I could also have written it because I'm also on the couch, can't go upstairs, etc., etc., but I probably referred to that somewhere else. The only thing I haven't done is kick the husband to the curb, because this one has been pretty good about it. Especially in the early years, when I really needed him. He took of a lot of time from work to take care of me (this was before there was a law!), cart me to doctors, etc.

The only thing I'm really wondering about is that since you can't work, and you chucked the spouse, how you are supporting yourself? I hope I'm not being too personal, but I've often wondered what would become of me if my husband wasn't here.... I hope you'll say -- since this is all very anonymous, anyway....

Thanks in advance!

Gigi