Lupus Site - a guide for lupus patients and their families



Personal Stories 2


"I was finally diagnosed in April of this year with Lupus and Fibromyalgia. I also have Raynauds and some CNS symtoms. However it took me a year and a half to get the diagnosis. So I was relieved just to have it and know that I wasn't crazy. I think the worst thing for me has been the lose of my independence and spondaetity. I was recently told I couldn't drive because of the CNS problems and couldn't go back to work. This has been hard emotionly for me to deal with these loses however, I have drawn closer to my family and to God because I've had to learn I can't do it all. I have to say that I need help and that I need God to give me strength to keep going and not give up. I think besides the lose of independence the fatique and the numerous pills plus the occasionally brain fog bother the most. The pain has bad as it is doesn't bother me as much as not being able to think right or having the energy to do so or just looking at all those pills everyday. So I guess for the emotional part right now is harder. That is why I have to stay dependent on God and my family. Because the physical is hard but not as hard as accepting that for today I need help from others to function. However I have to remind myself the end is not here yet. Thank you for letting me ramble and vent as well as see I'm not alone."

"My lupus was diagnosed when my rheumatologist put me into hospital by giving me a sulfa drug! I had been diagnosed with having rheumatoid arthritis (I had a positive rheumatoid factor and C-reactive protein test). I HAD suggested to my consultant that I had lupus (I felt I had many lupus symptoms) - he decided, however, to put me on Sulphasalazine (Salazopyrin) for rheumatoid arthritis BEFORE doing any tests for lupus. It was only after I flared REALLY badly and had to have an ambulance to hospital that I realised that sulfa drugs should be prescribed with caution to lupus patients. I feel angry that my consultant failed to test me for lupus before putting me on these drugs. I realise that some of my blood tests were not in line with lupus 'norms', but that's lupus for you - it can be unpredictable. Needless to say, I have now changed my consultant. I'm angry and feel I should have taken my case further - many of my lupus symptoms were, I feel, exacerbated by that sulfa-induced flare. Five years on, my condition is, I'm pleased to say, fairly stable."

"I have found that Having B12 and B6 injections every 3 weeks are a great help. I find some of the old energy that I had before I had Lupus. I also take Doxycycline every day, this has kept flares at a mimimun. I also take Noni juice which I have found helpfull. I also run a group threaphy program at my home every month."

"I was diagnosed with S.L.E about 13 weeks after the symptoms occured. Luckily the only symptoms I had were the butterfly rash and abdominal pain. It hit me hard when I started reading about lupus, as the only information that stuck in my mind was negative. I developed lupus after taking the contraceptive pill for 3 years. Consequently I was taken off the pill, and put on chloroquine tablets for a month. These affected my liver enzymes and I am currently on no medication. I am trying to have an optimistic attitude, because the positive aspects of the disease seem to out-weigh those which are negative."

" I am a 37 year old female who has SLE. I became sick after my first child was born, My husband of 19 years has been great. God knew what he was doing when he sent him to me.I know how your readers feel, I had 3 miscariage before my last child was born and we were lucky to have her. I guess thru all my sickest what keeps me going is my husband and my children, doctor told me years ago that I would only have ten year of life to live since I have heart, kidney, invovement. I have told my doctors that this disease was not going to rob me of my life. I plan to live a long time. I wish everyone on your reader the best of health and a long life."

"I am a female, 49 yrs. old and the mother of 5 children. Their ages range from 27 to 14 yrs. old. For at least the last seven yrs. I went to my primary care dr. complaining of severe fatique, muscle aches, joint aches and generally not feeling well. I would leave his office with the same diagnosis. I was getting older and should expect a few pains now and then. In the last 10 yrs. I have endured kidney stones at least 7 times, a broken ankle, pericarditis (which I was hospitalized for) many kidney and bladder infections, and hypothyroidism. Finally, he decided to appease this old lady and ordered special bloodwork done. When the results came back, I was sent immediately to a rheumatologist. She did more bloodwork and diagnosed me with systemic lupus, sjogren's syndrome and severe osteoporosis. This diagnosis came about 2 yrs. ago. My lupus has not gone into remission yet. I currently take plaquenil, Imuran and painpills for the lupus. I take synthroid for the hypothyroidism, fosamax and calcium + vitamin D for the osteoporosis. I have had pluncton plugs inserted in my eyes for the sjogren's syndrome. I must have a drink with me constantly because the sjogren's causes my entire body to feel dry. I have had to quit my job and apply for disability. I can no longer think very clearly and must rest at all times. My life has changed quite a bit. Right now I am currently trying to lose an unwanted extra 80lbs. caused by being on prednisone for over a yr. I really need someone to talk to. If anyone would like to write to me my email address is Thanks for your concern."

"Just keep smiling. Be thankful for every day that is given to you. Even though sometimes the pain may seem unbearable, there are so many people out there who are in far worse shape than you. But my biggest thing is to just keep smiling. Oh, sure ... plenty of times I get real depressed. Those are the times I want to just sit and cry because the physical and emotional pain become overwhelming. But then I try to think how lucky I am to be able to enjoy life, as limited as that enjoyment is at times, and that I can still love and be loved."

"I am a teahcer, I played softball against the Seniors for three hours. I stayed out of the sun as often as possible but I later my eyes became swollen and my dry I got worse. I love coaching but it is getting harder to continue. Phyiscally, emotionally and socically. People don't understand and think that I just want attention or that it is just in my head. I am tired of sharing with people around me because it is usually more draining to explain than to say quite."

"Lupus has helped me learn to live life from hour to hour, day to day. This year of remission has made me keenly aware of the world around me -- my family, my home, my church. I have done things I normally wouldn't do such as white water rafting just because any day I could go back to not being able to easily get out of bed or even walk around. I rely on God for strength and endurance and I thank Him for allowing me so many pain-free days. I have enjoyed your website. Keep up the good work."

"Apparently I have had Lupus since I was 24, multiple miscarriages, joint pain and muscle aches discounted because we thought it was the flu. These were intermittent and not for long times. In my 30's I began loosing hair, to a baby fine thin. I currently am 57 and have been diagnosed with Lupus. I had a virus in January 1999, since then everything magnified, my diabetes was out of control, I devloped swollen lymph nodes, and had intermittent fevers with no reason. About 6 weeks ago I developed double vision and photosensitivity suddenly, saw a neuroopthamologist who then ordered an MRI and CT and found clots in the sinus cavities, I was then referred to a hemotologist, multiple blood tests were run and have been recently diagnosed with lupus, and am being referred to a rheumatologist. Chronic fatigue is extremely frustrating I work and it is all I can do to get through the whole day. I am in bed by 8:00 pm every night, and there is some days I have to come home at lunch to rest, so I can complete my day. I am a registered nurse and nurse manager of an emergnecy department and need my energy and abilities. So far no medication has been prescribed hopefully as time goes on I will go into a remissionThank you for the information you have gathered."

"Lupus patients must remember that they are responsible for their own health. Do no rely on the doctors/medical professionals to act in your best interests. You must remember the drugs to which you have allergies, you must remember the last time you had a flare and you must never let them insist you are "doing fine" when you are hurting. The medical professionals, however well meaning, do not have to go home and live your life. Most do not know the burning pain of joint involvement or the overwhelming fatigue that greets you in the mornings when the rest of the world is having their morning coffee."

" I was diagnosed as having lupus in January 1998. Prior to this I had suffered very severe joint pain and swelling in my hands/fingers and later on my elbows. I couldn't understand why this was happening to me. I couldn't open tins, flush the toilet, pick up the kettle - simple everyday operations became very difficult. I felt that at work people thought I was being pathetic - I couldn't knock on a door or put peg figures on the board that we use to update our sales figures. In 1997 A new trainee doctor had been working at our practice and had done some tests on me for this joint pain. I had been given some antiinflammatory drugs to 'blast' the swelling - diclofenac or something! - but these had no effect. After about the third set of tests returned he told me he thought I had lupus and I was referred to a specialist. At that time I was horrified. It was one of those situations where you wake up all happy and ready to get on with life and suddenly remember about this 'thing' that you have and a big knot forms in the pit of your stomach. I was referred to a rheumatologist who performed some tests and decided it was probably not lupus but a strain injury of some kind (my husband and I are building a house, so I had been doing quite a bit of manual labour). However, a year later I was at the point of despair. I walked into the Doctor's surgery and, in tears, explained how I felt that I had the hands of an old lady (I am in my early 30's). Again he referred me to the rheumatologist and this time she was able to conclude that I did indeed have lupus. It explained the tiredness that I had complained of for years (being told I was in a rut was my previous Dr's diagnosis) and it also explained apparantly why my skin appeared blotchy. It was felt that at this stage there was no real need for medication as the anti-inflammatory drugs didn't seem to work and I would rather avoid drugs for as long as possible until I truly have to have them. However, something interesting developed in that I had been on the contraceptive pill for about 9 years and whilst going through the process of being diagnosed I had ceased to take it for an unrelated reason. My ESR count prior to stopping the pill had been high. A repeat ESR about a month after stopping had reduced considerably. I mentioned this to the specialist and my GP and, although they stated that there was no evidence that lupus was Pill related, I wanted to pursue this. My joint swelling had reduced and I had not had the debilitating tiredness. A couple of months later the ESR level had fallen again, although less this time. At the time of writing, I have had no further joint problems since stopping the Pill, and I am still doing some building work. Although it might be purely coincidence, for me I am as certain as I can be that the Pill had been a trigger for me."

"For quite a long time the doctors were treating me for a variety of illness, and I felt did not take me seriously - I began to feel that I was becoming a hypercohndriac, then one time my blood was sent of for testing although the doctor had not requested a test for Lupus - they tested it aanyway. It came back positive. The feeling of relief that at last they knew what was causing all this pain etc gave me some way of dealing with the situation and that I was not going mad at all. Although I still have a lot of pain etc., At least I can deal with it and rest when I get a flare up. If you are diagnoised with Lupus, try and get as much information on it as possible as this will help you to deal with the situation and understand your body a lot better. I still believe that many doctors do not have as much understanding of Lupus as they would have you believe so it is up to us to keep in touch and support each other and pass on any relevant information we can."

"The most important factor in treatment of Lupus is to maintain a postive attidute, follow your doctors instructions, and learn the symptoms of lupus. Listen to your body and learn the warning signs of a flare. Do not give up or give in to a flare. Educate others about lupus. Get plenty of rest and when overcoming a flare gradually increase your activites. Avoid extreme stress and overdoing it. Listen to your body."

"I have had various symptons going back over twenty three years, they appear to have been triggered by my first pregnancy. But, I also had rheumatic fever as a child. I was only diagnosed in early 1997 after having everything ranging from miscarriages to two heart attacks, renal failure (only 25% working now)and so on. I am still only 44 years old but what the heck, there's always someone else worse off." Hazel

"In 1991 I had the anti-cardiolipin test and the results were 75. Prior to the testing I had several miscarriages (later a total of eighteen ) fevers,allergic reactions to where my my face swelled up,itched and also ran a fever. My whole body was itching to the point where my legs were purple and blue,when I went to the dr's office he asked me if my husbanb had beat me, well,he didn't it was from the itching. Shortly thereafter, I was having kidney problems,the dr ran a urinalysis and found alot of protein in the urine as well as red blood cells. He ordered a 24 hour urinalysis and I don't remember what became of it but, the next week when I went back he repeated the urinalysis, the results were negative and he said "what kind of medication did I have you on" and I said none. It was really bizarre, it just cleared up on it's own as well as other strange events. There's many more events that have taken place but I wouldn't have the time to write it all. Although, I will tell you in November of 1997 I was diagnosed with Arrhythmogenic right Ventricular Tachycardia Dysplasia and the following month had a defibrillator and was placed on a beta blocker. The only test that showed the disease was the MRI,the echo didn't and neither did the ekg. Like I said there's more but to much. If you would respond I would greatly appreciate it."

" I have been diagnosed with Lupus Profundus. I have had 15" of muscle taken out of my right hip. I still have infection in this area all the time. I am unable to take the medication for Lupus. I wish that one day we will have a cure, or reason."

"The hardest thing about having lupus for me has been that I look healthy. In the beginning, no one but my family believed I was in pain all the time."

"It took over 20 years to diagnose me.I felt I had it all along.The doctors would say yes then they would say I did'nt have it. It's like make up your mind already. It's my life we are talking about."

"The absolute worst part of my story is the beginning, when I couldn't find a doctor who knew what was wrong and that made me feel like a liar and also questioning myself if I really felt as bad as I did. Once I got beyond the ignorance of the medical field and found a Dr. who knew what tests to perform and put the puzzle together, that is when I finally felt better, so to speak. Now it's just dealing with the rollercoaster effect of my own body and trying to keep a handle on all the aspects of the diseases, and trying to live a normal life. All I ask is that I can raise my three children and keep on working with a good attitude and not letting the small stuff bother me. Dealing with the pain is hard enough, I no longer care about what used to matter. I go with the flow and hope for the best. Laughter and slowing down to appreciate the small things in life are important to me now and always will be."

"I am 35 years old, I have been diagnosed with SLE lupus, antiphospholipid syndrome, Raynaud's syndrome, Fibromyalgia. The Drs. sometime call it "overlap syndrome". They have tried everything to get me into a remission, but they retest after I start feeling better and find that all of my "numbers" are still the same. I am very lucky at this point that I have no internal organ damage that has been detected. I refuse to take any narcotics, and "I try to just take one day at a time". Know that you are not alone in this fight,and consider every day that you "normal" a small victory.TAKE CARE!!!"

"I suffered with many symptoms for 15 years. It wasn't until I had a sore toe and foot that a doctor looked at my total history that I was tested.I suffered many years thinking that I was crazy, I would love to make this disease more known so that no one else would have to go 15 years without a dx."

"This is a troubling disease, to say the least. At least one good thing has come of it though, and that has helped me to put things into perspective. Health and family is number one, career (stress induced, self-imposed necessity) is number two. I have had to find ways to alleviate stress, to become creative, with little exertion at times. For me gardening has become a real source of joy and of introspection. With patience and imagination it has become a family time of gathering, talking, sharing and spending quality time together. I call it my healing garden. God gives us creation for our enjoyment. This has caused me to slow down and to take notice of all of His creation."

"Diagnosed 2 weeks ago after 3-4 years of being treated for connective tissue disease. Currently trying to recover from my first flare, hopefully it will never happen again. I left a VERY stressful job 3 months ago to join my husband on his professional bowling tour, very big and exciting step for me (25 yrs. old). This treacherous flare up started the first week out. Had to go to the emergency room in Dallas, they treated the swelling with cortizone and sent me on my way. 2 days later I couldn't walk, sleep, bath or feed myself. We spent an entire day on the phone contacting many specialists in the Dallas area, but NO ONE would see me. No one could even tell us if what I was going through was consistant with lupus or when/how I could get through it. Finally I flew back home to Oregon where I got in to my Rhuem and have a much more positive outlook on this disease. I'm still on a rollercoaster ride with this flare up, but reading other personal experiences helps me see that there really is alot of other people dealing with this same disease and I can learn alot from them, I am not alone. My Dr. says that I will be able to travel with my husband again when I get better, looking very forward to it. You can live a normal life with this, just need to be healthy and in-tune to your body."

"The worst and most frustrating part of thie disease, for me, was pre-diagnosis: feeling very sick and being told that nothing was wrong with me or that I had psychological problems. I began to doubt my own sanity. It took me 15 years to find a doctor who really listened and knew what I was talking about. I lay the blame partly on HMOs (doctors have very little time to spend with patients) and on the way the medical establishment treats women (as if we still lived in the Victorian Age and we all suffer from "vapors"!). Although I am pretty sick right now with Lupus Nephritis, I do have hope, and honestly, that's because my disease has a "name" and I can research it and find out concrete facts."

"CNS involvement has been the most difficult for me to accept. Kept telling Doc's I was having cognitive problems and they patted me on the head and said "depressed." Finally, a neuro-psych eval confirmed my suspicions and added that problems in no way due to emotions or mental health problems but I am still nowhere. Neurologists are the worst for having "a good ole boys network" and closing ranks around their erroneous diagnosis. Would like to take out 1/2 the EGO they walk around with."

"I have S.L.E with severe thrombocytopenia. It was suggested by several doctors that I have my spleen removed. The splenectomy was done, this did not improve the platelet count at all. PLEASE SEEK OTHER ADVICE BEFORE SUBMITTING TO THIS PROCEEDURE "

"Being a healthcare professional, it was more difficult NOT knowing what was causing my symptoms prior to my diagnosis. It is frustrating to anyone to not have an answer to their "what is wrong with me" question, especially if YOU are a healthcare professional yourself. After 5 or 6 years of testing, a dx of SLE was finally confirmed. That was in 1982. I was able to continue work & my other activities until 1989 when the "roof" fell in on me. I have been disabled since then & NOW have to battle with SSA (Social Security Administration) to PROVE to them I remain disabled. The stress that battle adds to my body is nearly unbearable. Add to that the possibility of losing, not only my only income, but also my ONLY healthcare benefits & it is a frightening thought."

"I was sent to Rheumatologist at the age of 18 years after being in a serious car accident. It was thought I had RA. After extensive blood tests I was told never to take birth control pills or have children because this could bring on the Lupus. I did not believe my parents or the doctor. I thought he was nuts. I went to a chiropractor for seven years to alleviate any aches and pains I had which I figured was from my accident. This is now 20 years later and I have had abnormal blood tests for the past 8 years and periodic bouts of fatigue, skin rashes, migraine headaches, muscle pain. I have been seeing an Enivromental Medicine Specialist for approximately 2 years. He has me on "ribes nigrum" to support my adrenals and T-AD+ by Genestra as well. I take calcium and vitamin d, Panax Ginseng Combination #2 by Genestra and a good multi- vitamin + acidophilus supplements. I was diagnosed for food sensitivities and chemical sensitivites and put on a Candida Diet ( that was hard but, I felt alot better). I progressed to drops to desensitize myself . He perscribes various supplements as I need them. I have felt generally much better. At my last visit to the Rhuematologist my WBC had dropped and I was having a flare up. He wanted me to try Plaquenil 200mg one tablet on odd days , two on even days. I have just started on this medication but, I do not like to take drugs. I am worried about the effects on the eyes. My doctor says that only two patients in 10 years have had to be taken off this drug. I am more skeptical. It's benefits take up to one year to see if they help at all. I am lucky because I have a very mild form of this disorder. My doctor finds my case interesting but, I think I do so well because I am proactive in my healthcare and have been following a natural foods diet. Food is our best medicine. I must tell you that I have five children. They range in age from 16, 14, 13, 11 and 4 years old. I did not heed the advice I was given. I am now 37 years old and am usually in good health. I had my appendix taken out two years ago because the doctors in Emergency thought I had appendicitus. I did not but, I had a inflammed appendix on the outside which was not blocked. I have had another attack this fall of the exact nature and the doctors thought I needed my appendix out. When I told them no can do it's gone. I was told it had to be a female problem. I again proved them wrong . I had tests and everything was normal. The pain in my lower right side gone once again. These were the only episodes that sent me to hospital. I am going to see my EM doctor and try to find an alternative medicine for my inflammation. I was told that the inflammation in my body is what causes my blood levels to drop. All I want to do is keep healthy and keep on with my interests and family. I also see a chiropractor once a month and I am studying homeopathy and natural health and related issues to keep up with the lastest health care."

"Hi, my doctor is pretty sure i have lupus but all my test are showing negative.My legs ache mostly after i have rested or in the mornings and so do my arms and hands. My fever ranges from 102 to 104. I lost 14 lbs and can't gain it back. I lost that weight in a month. I am tired all the time and i Hate It!!!! I don't have any pain killers so i suffer steady. I did go through 7 weeks of remission but now it is back. I have alot of protein in my urine but that is all they know. if anyone has icq i would like to chat. Just let me know that you have lupus. my icq #14118299"

"My brother died 2/28/97 of complications arising from his 15+ years battle with a combination of Systemic/Discoid Lupus Erythematosus, Cirrhosis, Non-Hodgkins Lymphoma, Pleurisy, Alcoholism-Nicotine Addiction (He quit both 13 years ago but they had already done their damage.). Our whole family was with him at the moment of his passing. It seems odd now that I was diagnosed with "his" disease of SLE. I don't have all his contributing factors but I do have bulging spinal disks, RSD and Fibromyalgia. He was my Big Brother that I was just starting to know - and now in a strange way I feel I know him better. I do have some of his symptoms and although sometimes I feel so guilty because I'd look at him and he didn't "look" sick, I know now just how much pain he was in. I always thought he would leave family outings, gatherings, etc and not clean up his yard and just lie on the couch because he was somewhat lazy, and/or didn't want to be with the family. Oh, God, I am glad I wasn't one of those people who just blurt out what they are thinking about someone because now I would feel twice as bad. Now I know all the reasons for things he would not do. Now I see just how brave and what a hero my Big Brother was and can feel some of what he went through. Even though I feel guilty as hell for what I thought about him, I am so very glad we got closer towards the end and I got to see my Big Brother's softer side. Although some days it makes me miss him all the more because I never really got to know him. It was strange, when I talked to my sister-in-law his widow, last week and mentioned my diagnosis. She kind of chuckled and said she knew for about 5 years that I probably had SLE. She said because my symptoms since 1988 (when my symptoms began) had been so close to his when he was first diagnosed. She said she didn't want to scare me by telling me her thoughts. Well, I'm not scared, at least not most of the time - it's just hard learning to take one day at a time. Lupus is not by any means a death sentence. Research is finding a lot of type-A workaholic, perfectionist personalities tend to be diagnosed with it. It could be coincidence or could it be our body's way of forcing us to slow down and smell the roses? Only time and more research will tell."

"I had trouble staying pregnant. Came home from my honeymoon 20 yrs ago pregnant...My first child is now 16. Those 4 1/2 yrs were hell. My body rejected 4 pregnancies. I was in the hospital more than not while they (the OB's) tried to get input from other doctors as to why I was killing these fetuses. I must have hit a small remission for the pregnancy that rewarded me with my daughter.... Have had kidney problems the whole time....Have the related high blood pressure. Have had Seizures relating to nervous system deterioration. Have had a "mild" stroke. Have Reynauds severely in cold weather and the butterfly rash in varying severities along my journey. Currently take Blood pressure Meds and Water Pill along with Phenobarbitol to ward off seizures. Have found that my mind is helped by daily dose of Bee Pollen. Use several herbs as nutritional supplements. I am currently in remission, take very good care of my skin, and try to get as much rest as possible. My body craves about 10 hrs/day....I can get 8 daily, then try to treat myself to naps on weekend."

"It's been 8 years for me to cope with LUPUS. And there's still more another hundred years (if I can live that longer)for living with LUPUS. I admit it's not easy. It's extremely hard. It gives me excruciating pain. It's bring me unimaginable surprise (such as avascular necrosis, CNS problem). My study is messed up. My friends left me. This is just a few example of LUPUS destruction. Yes, I'm angry..but does mad, angry, sad can change everything that you have right now...???!!! So far, nothing has changed. Unless I'm mad, everything is fine. I've been in remission right now. It's so great..I've never felt like this since I have LUPUS 8 years ago. It's all because of my patience and the most important thing I didn't blame myself..I didn't get mad. I try my best to put my mood in a good mood. Medication is important, but without good mood, is useless."

"I have found that sharing with others whether in face to face support groups or through web sites like this helps to understand this strange and unpredicable disease. Also so many of the symptoms are not given credability by doctors and then when you realize how common they are among other lupus sufferers, it makes one feel reassured. Doctors have trouble with a disease that breaks all the rules, but so do we."

"I greatly appreciate being the longest time in remission  [10 yrs] of my lupus with only one big outbreak of this disease. I am taking no medication for years and live a very normal life and am now in my 71st year."

"I am a 33 year old black woman and have suffered from lupus from the age of 14. Before my illness, I was a very active teenager, in fact, I was a promising athelete and represented England in junior cross country and also played in many tennis tournaments, if it hadn't been for my illness, I believe I would have gone very far. As a consequence of lups, I also have chronic renal failure and have to dialyse 3 times a week and also hip replacements in both hips as a result of all the tablets I was given to try and contain the lupus. I am on the transplant list and have been for 8 years. Despite all my problems my motto is "LIVE LIFE TO THE FULL", because I believe that even though I may not have all of my health, I believe in making the most of what I have. I still manage to do weight-training, though not so much as my hips now need replacing and are quite painful at present, I am also starting yoga classes and work full-time. I have a good social life and very good support from my family and friends. People often can't believe how ill I am some times as I'm always smiling and laughing and I sometimes wonder myself, but I think the reason is that life is too short to just sit and mope and feel sorry for yourself, before you know it your life is over (and unfortunately, I've seen a lot of death in my life up to now, especially on the Renal Unit where I dialyse - and it's not just old people!) So, don't think if only..., think right, what can I do to make the most of my life while I can still do most things, and just go ahead and do it!"

"After being on Plaquenil for 4 months, my lab work showed improvement and my fatigue and joint pain has lessened."

"Altho all the blood tests are still showing rheumatologist is treating my symptoms just as if the tests were positive. And after 11 years of having a diagnosis of RA, now even those tests are negative.Never mind that I have swollen joints, reddend joints, pain, and all the rest that goes with RA. Even tho the blood tests for SLE are negative, my Rheumotologist has suspected lupus for 3 or 4 years. I just don't fit nicely into all the questions. This summer I had a rash that covered my extremities, trunk, back,neck, and scalp. It was very red, large round places, which itched like crazy. Even the dermatologist was not sure how to diagnose this. A biopsy was inconclusive.The 2nd dermatologist finally gave a diagnosis of an "idiopathic connective tissue disease, consistant of thos with discoid lupus" The rash lasted from May to August. I still have occasions where I itch and break out. The worst is my scalp, there are several bald patches, where hair cannot grow where the lesions were. My joints ache terribly, but due to the rash the Rheumatologist is hesitant change any medication. We just keep upping the Predisone.I have difficulty breathing....seems my chest just does not want to expand properly. My palms and feet are reddened, for no reason at all.The fatigue is the worst part...not being able to do the usual or normal things. I try not to have more than one activity for a single day. It is too exhausting to go to the doctor, the grocery, put the groceries away, and cook all in the same day. Lots of days I can't think of the correct word to use, or get terribly confused.I now have lists everywhere to remind me of things. ha! I don't know if this is the sort of information that you can use for your survey. I am a female, 52 years old, live in the south east. I read everything about these diseases that I can find. We must be able to take care of ourselves.And educate ourselves."

"Herbs DO NOT WORK. Science is helping me other faith on this one and I am glad. Also, my weight has been like a roller coaster varying with small medical flukes that I seem to have."

"I have been physically not right for about 5 years. I have had many symptoms of lupus prior to diagnosis, but they happened slowly over a long period of time and syptoms are still appearing. I started becoming ill when I lost my father back in 1993. I was seen by counselors, therapist, psychiatrists, you name it. Even though I was feeling totally awful nothing was showing up in any diagnostic tests. I thought I was going crazy! I actually started to believe maybe it was nerves or in my head. Until one day I went to the GYN doc and they did a full exam. Including a chest xray...I dont know what made them include this but Im glad they did. My heart was enlarged. It all started from there. My story is very long so I will just tell you it has been one thing after another and Im still developing new symptoms. Thank you for the opportunity to tell SOME of my lengthy story."

"I was diagnosed with SLE 10 years ago. Over the past two years I had more joint problems and increased the meds. Recently I had a positive RNP test and now the doc says it looks like Mixed Connective Tissue Disorder because of the Scleroderma like symptoms. I have a positive ANA and recently had an abnormal SPECT Brain Scan. I'm scheduled for a spinal tap this week and should find out if it is CNS related. I wish that I did not have a diagnosis because I like to change jobs every few years and that is no longer possible. The Lupus diagnosis is a big red flag with the insurance companies."

"My symptoms started with pain in my wrists and forearms. The doctor told me I had carpal tunnel and gave me wrist splints. Then I developed pain and severe swelling in my feet, ankles and lower legs as well as my knees. The doctor told me I "had anemia and just wasn't eating right." I took iron supplements and ate liver but didn't improve. Finally went to another doctor and was immediately referred to a Rheumatologist who diagnosed me as soon as he got the first blood test back."

"I know this sounds crazy, but try it - it works!!!! (at least for me) I've been a lupus patient for 12 years now and the past two years have been the easiest for me with regard to pain in joints and muscles. I've even held my platelet count "normal" for this time period too!!! Yea, no pred.... A friend recommended that I try magnetic therapy - I checked with my drs and they all said - well, it can't hurt to try - so I did. If you can, look into Nikken ( Everyone is different but I'm convinced. Hope it'll help someone else. PS. I don't have a connection/interest in these products except that they help me.... good luck"

" I was diagnosed with SLE in 1991, after my platelet level dropped to 6 while I was pregnant. At that stage, I already knew I had thalassaemia minor, ITP (thrombocytopenia)and endometriosis (another autoimmune disease) ... but no one ever mentioned lupus before. I believe I've had SLE since at least 1987 - but then it was just some undiagnosed ailment. Since then I've got to add other long medical names to the list, like: antiphospholipid antibody (or Hughes) syndrome, fibromyalgia, raynauds. After a while I learnt that naming the ailments and measuring symptoms is only a small part of the problem. Living with lupus is a huge learning curve, even today - for me, my partner, my family and friends. Dealing with lupus seems to be too much for most employers: I learnt the hard way and took antidiscrimination action against my employer, a trade union organisation. My partner has been my greatest support. But I know women with chronic illnesses like lupus and endo whose partners did not cope, and left. We're supposed to be the ones who care for others, so who cares for us? Over a couple of years I got my great health care team together: a GP a rheumatologist (and other necessary specialists) in a public hospital the naturopath, the tradtional chinese doctor and the chiropractor. I couldn't ask for better, but it wasn't always the case. I take control of my health care decisions. This means sometimes disagreeing with doctors. But it's my body, my life, and most people are intelligent enough to take control. The problem is overcoming the intimidation that often goes with professionals who like to be the boss. And finding reliable sources of information. A well meaning person once told me people with lupus are often cranky. Of course we are, just like anyone else with huge problems to face. In my case, losing my capacity to work full time is one of the biggest blows. Mind you, I've learnt to face life with greater realism and patience. I've learnt that there was much I missed by being a workaholic and constantly looking after everyone else. There are some hard lessons, too. Like discovering that many people can't handle hospitals and illness. Like parents who don't understand (I'm 38). Missing people by being at home too much. And well meaning friends who stuck around, but then blame normal emotional reactions on drug side effects. Not that I lead an unhappy life. In some ways, I am freer than ever before. I helped start a local lupus support group, so now I can share info I've learnt with others in similar situations. This year, since I can't work, I'm going back to university part time. In 10 years of trying to have kids, I've just had miscarriages - but I am close to my nieces and my friends' children. Life is about more than that - and one thing living with lupus has taught me is it's worth living to the full (with rest breaks!)."

"I was 11 when I got sick and 13 when dx. I have mine own web page with my story and my moms at you see my mom died from sle in July of 97 at 53 and I have just found out I have the same heart problems at the age of 27 I am doing my best to get out awareness of this disease so others don't have to suffer like me and my mom. My best advice is to take each day as it comes and to know there is always someone worse off than you so hold your chin up and know that tomorrow is another day and it might be the day of the cure. Much love to you all who suffer from this disease Shawna (p.s. you can post my name and the address I don't mind at all)"

"Since 1974 remission, I have not had any of the newer testing. For me finding out that how I felt had a name was an immense relief. It was not all in my head. For the first time in my life I felt validated. Someone believed me. Everyday was a new adventure. A painful one, but here I am. Today everyday is a new adventure, a painful one but here I am."

"I was diagnosed with Thrombotic Thrombocytopenic Pur Pura in 1987, Then rediagnosed in 1993 with lupus, fibromyalgia, arthritis, raynauds, and a few others that I can't remember the name of :-). I also have migraines. I have had several strokes and a long string of mini-strokes so I have a problem with brain fog. I can't be outside for more then 15 -20 minutes even with a sun block on or I get a terrible blister-like rash. Okay, enough of that. Right now I'm not doing to bad. No major flares in a long time."
" 'remission' is not the same as symptom free for me. It just means the symptoms are fewer and more tolerable. Fatigue is usually not that much different from when I am in a flare. Probably the main improvements during so-called remissions are in the areas of positive mental attitude (which is tested during a flare), pain levels, quality of sleep, and brain functioning (during a flare I would describe it as though there is a thick fog in my brain, during a remission it is more like a mist)."

"Diagnosed 2 weeks ago after 3-4 years of being treated for connective tissue disease. Currently trying to recover from my first flare, hopefully it will never happen again. I left a VERY stressfull job 3 months ago to join my husband on his professional bowling tour, very big and exciting step for me (25 yrs. old). This treacherous flare up started the first week out. Had to go to the emergency room in Dallas, they treated the swelling with cortizone and sent me on my way. 2 days later I couldn't walk, sleep, bath or feed myself. We spent an entire day on the phone contacting many specialists in the Dallas area, but NO ONE would see me. No one could even tell us if what I was going through was consistant with lupus or when/how I could get through it. Finally I flew back home to Oregon where I got in to my Rhuem and have a much more possitive outlook on this disease. I'm still on a rollercoaster ride with this flare up, but reading other personal experiences helps me see that there really is alot of other people dealing with this same disease and I can learn alot from them, I am not alone. My Dr. says that I will be able to travel with my husband again when I get better, looking very forward to it. You can live a normal life with this, just need to be healthy and in-tune to your body."

"I must have a very mild case of lupus. My primary care physician first started investigating lupus when I mentioned that my face had changed color several months previously. (I'd always been yellow-pale and suddenly looked slightly wind burned all the time.) I never would have thought the facial change was symptomatic of anything and was quite surprised when she suggested more tests for lupus. Of course, I had this image of lupus patients as women who made up aches and pains to avoid having to face life. It was very hard for me to think of myself with this disease."

"The first manifestations of my lupus appeared when I was 9, by the time I was 16 I had been labeled as psychosymatic. I was not finally correctly diagosed until I was 27 - 18 months after my daughters birth: After the 2nd attack of pericarditis (both near fatal). While the Cardologist was telling me about antibodies to DNA and negative reactions to my bodies basic DNA - my immediate response and the only one that made sense of this mess was that I had AIDS - and that I had killed my baby. The prononcement with attendent boredom (I was no longer an interesting case) that I had LUPUS, was a great relief. Then followed a month of trying to come to terms with this thing, even though my mother and sister were RN's the information we gathered scared the stuffing out of us. My first appointment with a rheumatologist was a cerebral game of snap, ie Q. My hair was short and thin, was this because it tended to fall out. A. Yes I brought Draino forntightly otherwise the Bathroom sink blocked. Q. Did I drop things small & heavy A. Yes the latest being my Babe. and on and on. I found, I was constantly and overwhelmingly angry in the next two years as at each turn we learn another piece of the puzzle. I had spent my teenage years drugged to the gills with a combination of tranqilizers and finally the 'care' of a shrink - and all for something chemically wrong. My mother is my mainstay and support, my daughter my delight - my condition, now part of my life - mostly background noise which now only occasionally pushes its self to the front - my last serious flare was 3 years ago. My GP and present rheumatologist fantastic support. One of the most positive forms of self help I have found is TM, along with PRN antiflamitories & Tryptanol to help me sleep. When I told an old school friend two months after I had been told, that I had been told I had LUPUS - I was amazed at her reaction. Which can only even with hindsight can only be taken as rage. She said that I wasn't to use this as an excuse to dominate those around me and to promote my self interest. I was completely baffled and very upset - it had been a long distance phone call and she was an old and still a dear friend. She rang me back an hour later and explained - her mother who we all knew was a very strange kettle of fish, had Lupus. That it was a deep dark family secret. Suddenly her mother made sense - Once it had taken her mother a week to visit her in hospital when she had had her appendix out. We were all in boarding School in Central Queensland - not the best place in the world to have LUPUS. Their house was always dark, her mother always seeming to be ill and wrapped up in her self. This has always been an important object lesson to me, in two ways. 1. I attempt to educate people at every turn as to what LUPUS is to me, if I had know my friends mother had LUPUS those first months would not have been so terrifying. 2. I also attempt not to let it take over my life and that of my family's and hopefully very rarely hog centre stage. Thank you for this opportunity."

"I feel the SLE diagnosis explains so many weird things to do with my health over the past 10 years."

"My flare-ups are mainly stress related, I was diagnosed in 1991 with SLE, after my parents and brother died. My main symptoms were muscle and joint pain, headaches, skin rashes, fatigue, and mouth ulcers. At the time I was only given Ibuprofen for the pain, but no other medication prescribed. In March of 1997, I was diagnosed with CAH, Chronic Autoimune Hepatitis, and was given 75mg Imuran and 10 mg Prednisone, this helped my joint aches and I was feeling all perky. I was taken off all pain killers except 2 tylenols a day if needed for pain. In December I was weened off of Prednisone. My joint and muscles pains have started again. My liver is functioning fine with out the Prednisone but now I am taking 100 mgs Imuran. I have been told that my liver problems are not related to my lupus, I am just very confused that I cannot take any medication for my lupus because it will affect my liver. I wish that we had a Lupus Clinic in the South Texas area, that could handle all of our problems, becuase it gets very frustrating to see so many doctors."

"I had been a lupus paient since 1985. At first, I thought it was not as serious a sickness it may seemed to sound. However, when my doctor explained further, I was totally in distraught and lost - an incurable disease...and for life. I was in my worst mood swings and my family suffered much too. I refused to take medication & my condition got worst. It seemed everything lose its appeal & life at first was colorful suddenly became balck & white. My mood was better described as stormy & rainy and full of upheavals too. My family suffered in silence of my bad temper and got worried of my condition. My teachers visited me & encouraged me to carry on studying for my "A' Levels. Together with the help my my classmates, I slowly regain self confidence & hope. Howver, the greatest hope came from GOD. HE brought me out of misery. Life was never the same when I came to know GOD as a loving, merciful GOD. In fact, before I was a believer, I had tried so many ways to find out is there a real GOD? After my earnest prayers, GOD spoke to me and I was moved. My condition got better each day, and I began to look forward for a fresh day each night after my prayers. GOD had planted back the joy into me again - I was so thankful for His mercy upon me. Till now, I am still under medication , predisolone, adalat, imuran, cocicine, allupurinol, Tramal, calcium D, Cozaar, Plaquenil...though quite a huge chunk, I believe GOD see me through each time I popped them in my mouth & believe one day He will put a stop to all these. All the pains will be gone and I know GOd will not let His children suffer... I am still looking forward for that day...hope u too !!

"I was long thought to be suffering from inflammatory arthritis and Reynaud's as a result of a traumatic experience six years ago, but due to sudden appearance of blood in urine this year, proper tests were undertaken for the first time and I was diagnosed with SLE. I had a kidney biopsy to determine damage done and was put on the lowest dosage of steroids to help correct the situation, last September. Due to my positive response to this medication, my dosage has already been reduced to 12.5 mg. per day and I have back my old energy and feel in remarkably good health. No shortage of breath, no tiredness, colour in my cheeks and warmth in my hands mean so much. I was so tired!! If you are in any doubt as to your prognosis from your doctor and feel something isn't right, insist on a blood test - it could make all the difference. My specialist thinks I will make a full recovery as I am quite strong, but after six years of medication I am glad to hear it."

"I dont know how others feel but I know that just doing my job takes all of my energy how do people work and keep house and shop and cook when I feel so tired all the time. I have a good attitude as far as I dont let anyone know how bad I hurt and keep smiling all day at work. I know someone out there can find a cure for Lupus and we will have a chat line of remember how I used to feel. Hang in there and keep smiling. Any susgestions for time management and how do all that I have to do will gladly take advice .Love to All"

"I would like to know if this raynauds sydrome ever gets any better its driving me crazy!!!!!!!!"

"am not in remission however controlling the SLE and FM with specific diet and medicinal herbs plus other lifestyle adjustments and much prayer."

" I will never, ever take a pain-free/fatigue-free day for granted ever again!!!!!" [in remission for 2 mths]

"I have many, many Lupus symptoms and a positive Lupus skin biopsy and positive RO tests. My doctor said he cannot diagnose SLE without a positive ANA so I am going without any treatment. Is this common? Should I accept this as proper?"

"I was diagnoised last April with Lupus although I believe I have had this most of my life, Things just make sense now. I have had a very difficult time with meds . Mostly Plaquenil. We have tried everyway to get to a full dose but I just can't tolerate it. I have been on upto 60 mg of Prednisone but as soon as I get close to 5mg I start to feel bad . The inflamation comes back and my skin is horrible . I just turned 41 in Oct. but feel81 some,most mornings. I have two very active kids and I feel like I'm letting them down plus my husband works out of town is only home one weekend a month. He has Hepititis C and has been in remission for a year after a year on interferion. His life stood still for that year that is just trying to get through each day one day at a time. I am thankful for your inf I am! still trying to get to some kinda terms with this. I am headed to my doctor tomarrow to do something. I have been so sick through the whole holiday season and i am tired of it. Thanks for the chance to unload some of this. "

"I have suffered wih pain in my ribs (costochrondritis) off and on for probably 20 years. My current flare has lasted now for 3 years, 7 months. I have never heard of anyone having this that long. The only way I can describe this is like my insides are turning to stone. When I am lying down or sitting, putting pressure on my side, it feels like I am sitting or lying on rocks. My one doctor suspects Scleroderma. My current diagnosis is mixed connective tissue disease. I would really like to know if anybody experiences this symptom."

"after a Very long hard painful road, I am finally in remission. Dr. said I was the worse case ever seen up here. I was not expected to survive much less go into remission. Kidney involvement etc. Found a dr. who would treat me with the goal of getting well. He attributes my "miraculous" recovery to 3 years of Cytoxan (IV), NO more steroids, and a deep faith on God. You can LIVE with lupus. I do! "

"The long road to receive a proper diagnosis is frustrating and expensive. I've had to settle on treating symptoms as they appear instead of treating the body as a whole. It's time our medical schools educated these new doctors on intervention instead of bandaid medicine."

"I am currently watching with interest new research concerning cns involvment in lupus. I have been told by my rhuematologist that cns involvment is so rare that it doesnt happen. I have suffered two minor strokes which have all but been dismissed. I would be interested to know of other peoples experiences in this area."

"I was diagnosed at 14 at the beginning of 1991 and have been on all of the above drugs since February 1991. Learning to cope and understand was one of the hardest things I have had to do, especially at such a young age but now I've discovered that there is more to life than disappointments and just take each day as it comes."

"I first showed symptoms of Lupus at 6 yrs and was diagnosed at 8 yrs. Therefore, many of the "symptoms" really didn't occur until later on. I took prednisone from 6-16 yrs and was medication free until I was 42. We know that for the last 14 years I was very mild, but out of remission."

"I have been diagnosed, currently , with Mixed Connective Tissue Disease. My former diagnosis was nonspecific lupus like auto immune illness. I have some characteristics of Lupus. I have had Positive ANA, thrombocytophenia, fatigue, painful joints, vasculitis and complement cataboloism, unbelievable hives, petechia's and once protein in my urine. Mixed Connective Tissue disease seem to be the new place that they are putting people who are sick but do not fit all the criteria of one of the autoimmune disorders. It is evident that they do not have diagnosis down yet. "

"My major complaint prior to diagnosis was fatigue and headaches. I also had rashes on my legs and swelling of my legs and lips. I went to several doctors and was sent for tests, but they could never find anything wrong. Then I got a new doctor who is very knowledgable regarding lupus. My symptom at the time was the swelling of my lips which were not swollen by the time I got in for my appointment. However, he sent me for a test for lupus and I was also diagnosed by my rheumatolgist in October, 1996. I was allergic to Plaquenil, but was doing well on a low dose of Prednisone until Dec. 1997. It was then that I began to have vertigo 24 hours a day every day. My family doctor said that he suspected I had lupus cerebritis and sent me for several MRI's and blood tests. Then I began to also experience a numbing feeling in my tongue so my rheumatolgist sent me to the neurologist who said that my eeg indicated that I was having seizures. I was then prescribed Tegretol which I found out that I am also allergic to and went into the hospital with visual hallucinations, vertigo, headaches, and high fevers. While in the hospital, I had a spinal tap which confirmed the diagnosis of lupus cerebritis. I was prescribed 60 mg. of prednisone and have since gained 50 pounds. The dosage has been reduced gradually since April, 1997 and as of Jan. 1999 I am on 9 mg. I also began Imuran at that time. I was home from the hospital for about 10 days when I passed out on the couch. I had been having these spells preceded by a rapid heart beat and chest pains. Luckily, my husband was home on vacation and took me immediately to the hospital. I had many tests on my heart and the cardiologist wanted me to have a stress test. Since I was on Coumadin, I had to have Vitamin K shots to thicken my blood before they could do the test. I passed the stress test, but after it was over, I told the doctor I felt like I was going to pass out. That's the last thing I remember until I came to with the cardiologist beating on my chest doing CPR. I almost died that time and feel lucky to be alive. I was then diagnosed with tachycardia and bradycardia. I now have a pacemaker for when my heart forgets to beat and take medication for when it beats too fast. I have been off work since Dec. 1997, but hope to return to work in August, 1999. I am on disability at the current time. Thanks for your interest in my story. "

"I was diagnosed ten years ago within six months after symptoms appeared at that point. Since I have been able to trace my symptoms 30 years and was always told I would "outgrow it". I use a lot of alternative measures to treat myself."

"I've been diagnosed in 1994 in Brazil, i came to the USA in 1995 and then developed localized Scleroderma (Morphea) wich since then has been active. It's hard to say if I was ever in remisson: My hair has never stopped to fall since I first had a bald spot! "

"My diagnosis is "CTD with Lupus Like Symptoms" - supposedly because a) not enough pos. lab results b) insurance coverage. As my husband considers possibly moving on to another job, I am actually becoming thankful that I do not have a "definite diagnosis". Unfortunately that doesn't change the character of my illness. I do have a website that has a description of my 4 yrs before a partial diagnosis and general information about lupus."

"When I was diagnosed I had been non-functional for a year.I became very depressed because I thought I would always be that sick or maybe get worse.Two and a half years later I am much better. I want to encourage the newly diagnosed that as bad as they feel, it doesnt last for ever. You may feel terrible for a year or two but then get well again.Today I cycled 11 miles and feel great. If your doctor isnt wonderful (most arnt) keep looking for one that is,it makes a lot of difference.Dont try to educate every ignorant person who dislplays stupidity,thats their problem not yours."

"One comment I would like to make is that by all means, if one doesn't get any answers from their physician when you have lupus like symptoms, definately get a 2nd opinion! It took me two years of complaints to my doctor, who all but told me it was all in my head, before I had another doctor do a simple ANA test and found that things weren't quite right!"

"I am a 48 year old male who started with lupus symptoms of myocarditis in September of 1977. I had Sjogren's and joint and muscle primarely until January of 1995 when I started with lymphoetec pneumonitis. I am in my 20th case. I was in the hospital 100 days in 1997 and 90 days in 1998. I now have Lupus Nephritis and migraine/vascular headaches."

"I seemed to be much better following menopause and the problems that currently bother me most are Sjogrens and Fibromyalgia. I am doing the guaifenesin therapy for Fibromyalgia and find that it really helps my Sjogrens symptoms."





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