View Full Version : not new, but definately lost!

06-02-2009, 09:08 AM
Hi there. I am not really a new member. I have posted in the past, but it has been a while. I am feeling more and more lost and confused and alone.
My name is Kim. I was diagnosed with Lupus in 2004 but had symptoms for about 5 years before that. I am a 38 year old mother of 3 and a registered nurse working in a very busy pediatric ER. My initial symptoms were extreme fatigue and whole body swelling. I recently found out from a cardiologist that the Lupus has damaged my peripheral blood vessels causing the fluids in my body to leak into my tissue. There is no way to reverse this damage and I will be swollen with pitting edema the rest of my life. The swelling also causes severe headaches and neurological deficits such as peripheral numbness and other problems with being able to walk and use my arms the right way. My arms and legs sometimes have a mind of their own and sometimes my brain does not want to send a message to them to move. Now I am having severe joint and bone pain. I am on blood pressure meds because my blood vessels are damaged causing hypertension. I am on Plaquenil as well and have been on numerous diuretics that were worthless.
The problem I am having is that my rheumy keeps telling me my labs are "within normal limits for a person with Lupus". I am confused by that. How can my labs be normal but I feel more and more lousy every day? She has actually told me that the symptoms are all in my head.
At one point I was picking fights with my husband hoping that he would leave me so that he and my kids did not have to see me go through this. When that did not work, I told him I was filing for a divorce because I did not love him anymore. This was not the truth. I was still in love with him, but I was so affraid to let him see the strong, independant woman I once was falling apart, suffering and needing help. I am happy to say we are doing ok now, and he is trying harder to understand, but there is no way anyone that does not have this disease could understand.
I feel so lost and alone. I know I am headed for a wheel chair and I am so confused about what to do. It is driving me absolutely crazy that I am being told my "labs are normal and should be feeling fine". I feel like I am losing my mind. I can't sleep because it hurts so bad. I can't eat because I am so upset.

06-02-2009, 10:25 AM
First off...thank you for sharing all of this. I was in tears reading how much pain and suffering you are going through...SO SORRY! I know sorry doesn't help but I understand your frustration/uncertainty and what you mean by feeling alone. I said the same thing to my sister about 2 weeks ago and she tried to reason with me about it. Like you said, people who don't have Lupus have no clue as to the daily emotions we go through and it makes no sense to us or anyone else but we do go through these emotions and feelings and they are our feelings and emotions which are NOT DEBATABLE! This is what I tell my family and friends. I know I shouldn't feel this way but I do and my feelings and emotions are not debatable so back up off me with your reasoning. That is why I find so much comfort being part of this site. Everyone understands and can/does relate. I hope you decide to join the site as I would certainly love to keep in touch with you.
I am so happy to hear your husband is still there supporting you and trying to understand. I think sometimes it is hard for those without Lupus to understand it all as sometimes they don't see the symptom's etc.
As for you...Please don't claim anything that isn't there. You are not in a wheel chair so please don't start envisioning yourself in one. I would get a second and third opinion and tell that other doctor to go play on the freeway as the pain you feel is not in your head its on your body and physically you know how you feel when you are doing great and when you feel ill. Again...your feelings/emotions are not debatable no matter how NORMAL is....Even with Lupus...Normal? That is an oxymoron if you ask me! Normal Lupus????

06-02-2009, 11:11 AM
hi kim,

i remember when you joined, actually we joined about the same time. I am so sorry that things have gone down hill for you so quickly, sounds like you have been through pure hell the past few months.

i understand you trying to run your husband off, i have considered and tried the same thing, but now i am so happy that my guy did not listen to me. His presence affords me the opportunity to forget about my disease, and enjoy a few things in life....it is like a temporary escape. Try to enjoy a few laughs with your husband, and allow yourself some time when you are not totally consumed with the medical issues you are facing.

have you seen an edema specialist? My daughter deals with edema because of breast cancer. She went to a therapist, and has learned how to lessen the edema, and how to treat herself whenever the swelling occurs. I don't know if it would help in your situation, but it has really helped her.

i would certainly consider getting another opinion, it is hard to believe that there is nothing that can be done to help you. Also, sounds like you need to change drs....i can't understand how a physician who truly understand lupus and the many attached conditions would ever say anything is in our heads.

as far as lab results, we all face the dreaded "labs look ok, must be your lupus" causing the symptoms....i don't have any great words of wisdom for this, but unfortunately, this now appears to be a part of our lives. try not to worry over this, and please let these lab results just roll on by.....

hope you keep in touch, this group has been a tremendous help to me, and i know others will be along who can provide some specific information on what you are facing with the damage to your peripheral blood vessels.

06-02-2009, 04:12 PM
Purple Butterfly;
I, too, remember when you joined WHL. It has been quite a while since we've heard from you and I am so sorry to hear that your symptoms have escalated. You've been given some good advice about dealing with others who do not understand and about seeing an edema specialist. My other piece of advice would be to get another doctor. Apparently, this one that you are dealing with knows very little about the true nature of Lupus and therefore, you need to find a doctor who has some understanding about the disease. Especially given the fact that, far too often, patients suffer terribly with symptoms while their lab tests are supposedly normal. This is one of the truly henious attributes of this disease. So, you are not alone in this area.

Lupus is characterized by abnormalities in many laboratory test results. These abnormalities are different for every patient and they vary significantly during the course of a patient’s disease. The evaluation of an individual’s lab tests are only part of the characterization of Lupus. Lab test results are to be considered along with the patient’s history, AND observable symptoms in order to determine the diagnosis of SLE, its course, and the treatment regimen.

All laboratory values must be interpreted in light of the patient’s PRESENT/CURRENT status, other correlating laboratory test results, and any coexisting illnesses. I am not sure what lab tests your doctor was referring to, however, an interpretation of ALL of the following tests should be considered, along with the other characterizations I have mentioned, before a doctor should tell a patient that their Lupus is or is not causing their symptoms:
1) Anemia
Tests for anemia includes those for hemoglobin, hematocrit, and red blood cell (RBC) count. In addition, the levels of iron, total iron-binding capacity, and ferritin should be tested. At any time during the course of the disease, about 40% of patients with SLE will be anemic. The anemia may be caused by iron deficiency, GI bleeding, medications, or autoantibody formation to RBCs. However, about 50% of Lupus patients have a form of anemia in which the concentration of hemoglobin and the size of the RBCs are normal. This is called normochromic- normocytic anemia, or “anemia of chronic disease.” Autoimmune hemolytic anemia, with a positive Coombs test, is much less common.
2) Leukopenia and Thrombocytopenia
Abnormalities in the white blood cell (WBC) and platelet counts are an important indicator of SLE activity. Leukopenia, a decrease in the number of WBCs, is very common in active SLE and is found in 15–20% of patients. Thrombocytopenia, or a low platelet count, occurs in 25–35% of patients with SLE.
3) Measurements of Autoimmunity

The presence of certain autoantibodies have diagnostic value for SLE. The most specific tests are those that detect high levels of these autoantibodies. The most common and specific tests for autoantibodies and other elements of the immune system are listed first. Unfortunately, when these values read as normal, too many doctors discount other indicators of active Lupus:

A) Antinuclear Antibody (ANA)
A screening test for ANA is standard in assessing SLE because it is positive in close to 100% of patients with active SLE. However, it is also positive in 95% of patients with mixed connective tissue disease, in more than 90% of patients with systemic sclerosis, in 70% of patients with primary Sjögren’s syndrome, in 40–50% of patients with rheumatoid arthritis, and in 5–10% of patients with no systemic rheumatic disease. Patients with SLE tend to have high titers of ANA. False-positive results are found during chronic infectious diseases, such as subacute bacterial endocarditis, tuberculosis, hepatitis, and malaria. The sensitivity and specificity of ANA determinations depend on the technique used.

B) Anti-Sm
Anti-Sm is an immunoglobulin specific against Sm, a ribonucleoprotein found in the cell nucleus. This test is highly specific for SLE; it is rarely found in patients with other rheumatic diseases. However, only 30% of patients with SLE have a positive anti-Sm test.

C) Anti-nDNA
Anti-nDNA is an immunoglobulin specific against native (double-stranded) DNA. This test is highly specific for SLE; it is not found in patients with other rheumatic diseases. Sixty to eighty percent of patients with active SLE have a positive anti-nDNA test. For many patients with anti-nDNA, the titer is a useful measure of disease activity. The presence of anti-nDNA is associated with a greater risk of lupus nephritis.

D) Anti-Ro(SSA) and Anti-La(SSB)
These immunoglobulins, commonly found together, are specific against RNA proteins. Anti-Ro is found in 30% of SLE patients and 70% of patients with primary Sjögren’s syndrome. Anti-La is found in 15% of lupus patients and 60% of patients with primary Sjögren’s syndrome. Anti-Ro is highly associated with photosensitivity; both are associated with neonatal lupus.

E) Complement
Complement proteins constitute a serum enzyme system that helps mediate inflammation. Complement components are triggered into an activated form by such immunologic events as interaction with immune complexes. Complement components are identified by numbers (C1, C2, etc.). Genetic deficiencies of C1q, C2, and C4, although rare, are commonly associated with SLE. A test to evaluate the entire complement system is called CH50. The most commonly measured complement components are the serum level of C3 and C4. These tests are particularly useful in evaluating kidney involvement and in monitoring the disease over time.

F) Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP)
Tests for ESR and CRP are nonspecific tests to detect generalized inflammation. Levels are generally increased in patients with active lupus and decline when corticosteroids or NSAIDs are used to reduce inflammation.

G) Antiphospholipid Antibodies (APLs)
APLs are autoantibodies that react with phospholipids. Recent data indicate that APLs recognize a number of phospholipid-binding plasma proteins (e.g., prothrombin, ß2-glycoprotein I) or protein-phospholipid complexes rather than phospholipids alone. APLs are present in 30–40% of lupus patients. A positive APL test plus the presence of arterial and venous thrombosis and thrombo- embolism or recurrent fetal deaths or thrombocytopenia is called APL syndrome. APL syndrome affects about a third of lupus patients with APLs (10–15% of all lupus patients). APLs and APL syndrome may also occur in patients without lupus (primary APL syndrome). APLs are detected in the following three types of laboratory assays.

H) Syphilis Serology
Certain blood tests for syphilis may be falsely positive in lupus patients. Chronically false-positive VDRL or rapid plasma reagin (RPR) tests may occur in patients with lupus. Cardiolipin, a phospholipid, is a component of the antigenic mixture used in these assays. More specific tests for syphilis, such as the fluorescent treponemal antibody-absorbed (FTA-ABS) and microhemagglutination-Treponema pallidum (MHA-TP) assays, are almost always negative in lupus patients without syphilis.

I) Anticardiolipin Antibody (ACA)
Sensitive enzyme-linked immunoabsorbent assays (ELISA) using cardiolipin as the putative antigen are commonly used to detect APLs. In patients with APL syndrome, most antibodies detected in anticardiolipin ELISAs are directed against cardiolipin-bound ß2-glycoprotein I.

J) Lupus Anticoagulant
Lupus anticoagulants are APLs that inhibit certain coagulation tests, such as the activated partial thromboplastin time (aPTT), dilute Russell viper venom time (dRVVT), and kaolin clotting time (KCT). Although the antibodies act as anticoagulants in these laboratory assays, they are not clinically associated with hemorrhage, but with thrombosis and other manifestations of the APL syndrome. Most lupus anticoagulant antibodies are directed against prothrombin or ß2-glycoprotein I.

4) Tests for Kidney Disease

Several tests can be done to assess a patient for kidney disease.

A) Measurement of Glomerular Filtration Rate
The glomerular filtration rate is a measure of the efficiency of kidneys in filtering blood to excrete metabolic products. Typically this is done by collecting a 24-hour urine sample for measurement of creatinine clearance. Impairment of renal function by lupus nephritis results in reduced levels of creatinine clearances.

B) Urinalysis
Urinalysis can indicate the presence or extent of renal disease. For example, proteinuria can be a reliable indicator of renal disease. The presence of RBCs, WBCs, and cellular casts, particularly red cell casts, in the urine also indicates renal disease.

C) Measurement of Serum Creatinine Concentration
Creatinine is a waste product of muscle metabolism that is excreted by the kidney. Loss of renal function as a consequence of lupus nephritis causes increases in serum levels of creatinine. The concentration of creatinine in the serum can be used to assess the degree of renal impairment.

D) Kidney Biopsy
Kidney biopsy can be used to determine the presence of immune complexes and the presence, extent, and type of inflammation in the glomeruli. Diagnosis of the extent and type of inflammation may help to determine a treatment program for lupus.

06-02-2009, 04:12 PM
My post was too long, so I had to do it in two posts:

I realize that this is a lot of information. However, I wanted you to be armed with knowledge so that, the next time your doctor says that your lab results are normal, you can ask her to tell you EXACTLY which tests are normal and ask her for the results of any test mentioned above that she did not include in her analysis. You can then ask her to run the other tests and/or give you the results of the other tests and remind her that Lupus CAN be active even in light of normal lab results because there are so many other indicators that she should consider!

I wish you the very best and I am so happy that you are with us again. Remember, you are not alone and we are here to help you as much as we can.

Peace and Blessings

06-03-2009, 01:55 AM
Thank you all for your help and support. It is great to be back with people who actually understand how it feels to be dismissed and misunderstood.
I had no idea that there is an "edema specialist". This is a new road for me to investigate. I am also thinking about joining a Lupus research trial at a large hospital where I live. The medication is an oral chemo drug so I am a bit hessitant, but I am willing to try anything. I have been offered strong narcotics by my rheumy in the past but have refused them because I work nights, have three small children and am a nurse. I am very affraid of addiction (especially knowing that 1 in 3 nurses will eventually become addicted to some form of drug). I feel like I should iknow more about the disease being a nurse, but the whole thing has me confused and upset.
Anyways, as for my labs, my ANA, CRP and ESR are slightly elevated, but my compliment panels are opposite of what they should be for a flare (according to my rheumy). I saw a nephrologist about a year ago and had a bunch of tests and scans done. I found out that my left kidney is polycystic and not functioning but my right kidney is ok. The doc said my left kidney was probably like this since birth and has nothing to do with Lupus. As a precaution, he took me off all NSAIDs. I do spill some protein, but they don't seem to be very concerned with this. The cardiologist said my heart is fine but my peripheral blood vessels are damaged beyond repair. I was also refered to a neurologist because I have these "staring spells" and because my arms and legs keep going numb. He said that I am too old for abscence seizures and that the staring spells do not mimic compliment seizures because I have no other body movements with them. He said I am "just daydreaming" and refused to test me for anything. I had an MRI to rule out MS since some of my symtoms seem to mimic MS. This was normal as well. Also, I seem to lose peripheral vision from time to time and had a thorough eye exam done. I was told that it is just changes related to aging (I am only 38) and that me and the visual field scan don't get along so I should not have it done again. My rheumy put me on Ultram, which has been completely worthless and in fact seems to increase the "staring spells" I have. I have done several rounds of prednisone, and it seems to work for about a week and then I am right back to where I started. Plus, I get very mean and angry on steroids.
I am meeting with a friend of a friend who has Lupus and actually saw the same rheumy I see. She fired her for the same reason and found a new rheumy that she loves. I will let you know what happens. For now, I am not giving up the fight, but the battle is hard!!

06-03-2009, 03:46 AM
Staying positive when we feel so poorly is truly one of the most difficult challenges. We all struggle to fight our way through each day. Glad you came back here to look for support. It is here for you. Definitely look for second opinion/new doctor. You deserve to be treated with respect and you deserve to be heard. I can't tell you the number of times I have heard "well, your labs look fairly normal" during a time that I was feeling particularly lousy. My response was, "Ok. however, I still feel lousy. I'm not kidding. I'm not a hypochondriac. I'm not a drug addict. I'm not crazy. Now that we have that out of the way, what can we do to address what is going on?"

Your doctor may decide not to treat you ever again because you decide to stand up for yourself. Or, you may decide to fire your doctor. Or...you may get his or her attention and make some progress. Either way, refuse to be stuck in a situation where you feel helpless and hopeless. You deserve a physician who will be a partner in your health and well-being. Someone who will help you make the best of a difficult situation, so you can focus on finding enjoyment and pleasure in the wonderful people with whom you share your life.

I wish you well,


06-03-2009, 04:50 PM

I am so sorry that you are hurting so badly. Just keep up your fight, and don't stop until you get answers. It took 16 years for my Lupus tests to come back positive, and even now, I'm WNL and still feeling lousy. If your rheumy is so blase' as to ACTUALLY SAY that your symptoms are "all in your head," I'd throw them to the wind and find a new doc. What a creep. You deserve better.

So glad you have you around...I'm fairly new, but I think we'll be good friends. I used to ba a pediatric radiographer in a very busy trauma ER. ;) Looking forward to seeing you getting better and getting to know you!


06-03-2009, 07:30 PM
hi purple butterfly,

wow, you have really been fighting a hard battle. seeing so many drs. in itself is difficult, but really tough when you feel bad.

i am so glad to hear about your upcoming meeting with the friend of a friend. you say she loves her dr., this could be the answer to most of your problems. a good dr. is crucial to a winning team....congrats, and please let us know how it goes.

06-04-2009, 02:04 AM
Thanks for all of the encouraging words and thoughts. I met with the friend of a friend and we have so much in common. It turns out she has a son the same age as my oldest and they were in scouts together in first grade. WOW, what a small world. Not only that, her symptoms are much like mine. She gave me the name of her rheumy, who happens to be the head of the department at one of the largest research hospitals here in Ohio. I will call him today for an appointment. I am feeling less and less alone now, but still a bit lost. She let me know, as well as all of the wonderful people here that I have met, that the pain is very real and it is not all in my head.
I do have a question for all of you though....do any of you have nervous system involvement and if so, what are your symptoms? I was told that Lupus does not affect the nervous system, but I am having symptoms that seem to stem from the nervous system.
Thanks you all for your love and understanding!!

06-04-2009, 04:38 AM
hi purple butterfly,

i don't know who told you that lupus does not affect the nervous system, because it does, and many of us suffer from various central nervous system involvement. However, it is very difficult for a MRI to show anything.

so glad about your new friend....friends lessen lonliness

06-05-2009, 09:12 AM
Hi Mountaindreamer;
I was told by two different rheumy's that Lupus does not affect the nervouse system. The only reasoning they can give me for the numbness and tingling in my extremities and the constant headaches is that the severe swelling I have has placed pressure on my nerves.
Here is another kick in the pants. I started to diet about two months ago (lost about 4 pounds and then nothing). Anyways, I was at work last night and I had my diet soda with me and one of the attendings I work with that knows I have lupus saw the soda can. She told me that artificial sweetners can cause big time flares in people with Lupus. Wonder if that is why I have been feeling worse and worse. Has any one else heard of this or had a problem with diet soda?

06-08-2009, 07:47 PM
Hello Purplebutterly;
I am going to give some information about how Lupus DOES INDEED affect the nervous system. I will also give you some websites for further information. Perhaps you can print these up and give them to your misinformed doctors who, obviously, do not know much about Lupus.
Also, there has been a lot of information bantered about regarding Aspartame and Lupus flares. Many believe that this artificial sweetener causes many problems for Lupus patients. Since nothing has been scientifically proven, many of us have chosen to eliminate any food products that contain aspartame.

Here is the information about Central Nervous System involvement with Lupus:

People with lupus do experience signs associated with the body's nervous system, such as: headaches, confusion, difficulty with concentration,
fatigue, occasional seizures or strokes.
The central nervous system (CNS) consists of the brain and spinal cord.
The peripheral nervous system is comprised of nerve fibers that supply the skin and muscles with the power needed for sensation and movement.
The autonomic nervous system helps to regulate spinal nerves and peripheral nerves, and innervates, or supplies nerves to, the internal organs.
How Does Lupus Affect The Nervous System?
The nervous system requires an uninterrupted flow of blood to supply its tissues with oxygen and nutrients necessary for normal functioning. A number of possibilities have been suggested to explain how lupus may cause the many symptoms of nervous system involvement:
Nerve tissue may be damaged when antibodies attack nerve cells or blood vessels; Nutrients and oxygen are delivered through blood vessels that feed the brain, spinal cord and nerves. If blood flow is slowed or interrupted, the cells of the nervous system are injured, unable to function normally, and symptoms develop; The symptoms that occur vary depending on the location and extent of the tissue injury.

Signs And Symptoms of Central Nervous System Lupus:

Central Nervous System (CNS) Vasculitis - CNS vasculitis is inflammation of the blood vessels of the brain. It is the most serious form of systemic lupus. CNS vasculitis is characterized by: high fevers, seizures, psychosis, meningitis-like stiffness of the neck.
It can rapidly progress to stupor and coma if not aggressively managed. Seizures occur when injured or scarred brain tissue becomes the focus of abnormal electrical discharges. These seizures may be a one-time occurrence or a persistent problem. Anti-convulsant medications are used to prevent seizures by controlling the brain's abnormal electrical discharges.
CNS vasculitis usually requires hospitalization and high doses of corticosteroids. CNS vasculitis occurs in up to 10 percent of all lupus patients It is the only form of central nervous system disease that is included in the American College of Rheumatology (ACR) criteria for defining SLE.

Cognitive Dysfunction:
At some point during the course of their lupus, up to 50 percent of lupus patients describe feelings of confusion, fatigue, memory impairment, and
difficulty expressing their thoughts. This collection of symptoms is called cognitive dysfunction and is found in people with mild to moderately active SLE. These symptoms may be clearly documented by neuropsychological testing, and a newer neurodiagnostic test called the single positron emission computed tomography (SPECT) scan shows reproducible blood flow abnormalities.
The reasons for these symptoms are not known. It may have something to do with changes in how a group of chemicals known as cytokines are handled or may be related to certain parts of the brain not getting enough oxygen.

Lupus Headache:
People with lupus can experience headaches which are unrelated to their lupus, i.e., sinus headache, tension headache and bone spurs from osteoarthritis. However, approximately 20 percent of patients with SLE experience SEVERE HEADACHES which ARE related to the disease and these are known as lupus headaches. The lupus headache phenomenon is similar to migraine and may be seen more often in people who also have Raynaud's phenomenon. SPECT scans indicate abnormalities in blood vessel tone or the ability of a vessel to dilate or constrict. Lupus headaches do not usually respond to treatment for migraines. They usually respond to treatment of the underlying disorder (Lupus), although corticosteroids are occasionally useful.

Here are some websites that you can go to for further information:


I hope that this information is helpful to you and that you can use it to educate your doctors in order to demand that they listen to you and provide appropriate treatment for your symptoms. I wish you the very best!

Peace and Blessings

06-17-2009, 02:27 AM
Hello to all of my Lupus family. I wanted to share an update with you. I have finally found a rheumy that was able to answer my questions and give me some direction. He does not have the greatest personality in the world, but he listened to me and believes me about how lousy I have been feeling.
I saw him yesterday for the first time and though the wait was two and a half hours, it was well worth it. He told me that though my most recent blood work (2 months ago) shows that I am not in a flare, the disease is still very much active. He also told me that I have fibromyalgia and Sjogren's Disease. These account for my huge array of symptoms. He has increased the Plaquenil, put me on a medrol dose pack, lasix every other day, flexaril and said that he would be willing to give me a shot of kenalog if needed. He drew more labs and wants to see me again in 6 weeks but said that if I am not feeling better in 2-3 weeks he wants to hear from me.
I finally feel like my symptoms are not in my head and that I can fight a little longer against this disease.
Thank you all for your love and support.

06-25-2009, 07:03 PM
i know your having a rough time right now, but you need to remember that you are alive and have 3 wonderful kids that you want to see growup. your kids and your husband will just be glad to have you in there life and you and can still have a wonderful life living thru them. i have had lupus for over 27 yrs and you have highs and you have lows but one thing for sure i try to make the best of it and live my life thru others so that i feel i fit in. will be praying for you and your family that you can all find a good harmony and enjoy life together.

06-25-2009, 07:05 PM
[QUOTE=alchapman42@yahoo.com;53512]i know your having a rough time right now, but you need to remember that you are alive and have 3 wonderful kids that you want to see growup. your kids and your husband will just be glad to have you in there life and you and can still have a wonderful life living thru them. i have had lupus for over 27 yrs and you have highs and you have lows but one thing for sure i try to make the best of it and live my life thru others so that i feel i fit in. will be praying for you and your family that you can all find a good harmony and enjoy life together.the world is what you make of it. if it doesn't fit you make alterations.