Lupus Site - a guide for lupus patients and their families

Personal stories 1
Personal stories 2
Personal stories 4
Personal stories 5
Personal stories 6

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"Hi, I'm very grateful to read all these stories and now I am not alone, I am a 46 year old women that has suffered since 1980 with chronic migranes, neck problems, and back pain. My mother died when I was 17 with Scleroderma, which was firsted diagnoised as polymyositis, Lupus, I don't think they knew then. Since then, in 1990 my sister was diagnoised with Chronic Fatigue Syndrome and Fibromyalga, then it was said by the doctors that the Fibromyalga/CFS where secondary to the Lupus, now in 1999 they feel she has Mixed Connective Tissue or Scleroderma. I was diagosed in 1992 after 2 years of being told I was under stress and depressed that I had chronic fatique and fibromyalgia. I still am being told by our Canadian Doctors that this disease does not run in families (I now have 5 familie members with it?) Lupus still has not shown its face however, I now have elevated ESR, WBC, RF still neg. I find this vary frustrating has I call my sister when I develop a new symtom and she confirms its not in my head my symtoms are cold hands and feet, pain in legs, arms , hands,neck, shoulders, and the feeling of hot pokers beinging inserted to my thighs, relentles headaches. Not to mention the profond fatique that strikes to stop you in your tracks. Muscle weakness in my arms, hands, legs to name a few more. I would like here from anyone who has had simalar circumstances @ [email protected]"

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"Hi! My friend decided to bring her laptop over to surf the web and I'm very thankful we fell upon this site. I'm 28 years old, and have 2 beautiful daughters [3 & 2]. I was diagnosed at the age of 13 with SLE. Like many of you ladies, I became frustrated with misdiagnosis.

In reading your stories, several of you were advised not to enter into childbirth as was I. Much to my physician's chagrin, I trusted my higher power and proceed to have a family. Friends and family really do have a shielded understanding of our disease, therefore thinking that we are fine and healthy, but yet, we still suffer the trauma of fatigue, aching joints, hair loss, etc..

Many of my close friends forget that I have this disease because I appear to be so energetic, carefree, everyone's shoulder, and I never complain about the disease, because my everyday phrase of power is "why not me?" as opposed to "why me?". At 13, my parents were told that I wouldn't live to my later teen years... then to mid 20's.. then I was told not to attempt childbearing, which has been the cliamax of my life thus far.

If I can humbly offer any advice, optimism is the key. Endure and conquer the deepest and decaying crevices, to enhance the success of experience of the horizon at the peak of the mountain of life. A quick reiteration: Why not me?, not, why me?.

Please feel free to e mail me to discuss more positive affirmations at [email protected]" Regards! Rachel

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"I was just diagnosed with systemic lupus today. It has been a long battle of 4 months of fever, unbelievable weakness. I spent most of the summer in the hospital with Docs really not knowing what was going on. I only had high fever severe head pain, and a seizure that evening. my blood work was almost normal with a slightly elevated white count. But as the fever continued my blood work started to change with an increasing sedimentation rate. c reactive protien and albumin level that just about fell to nothing. I started swelling up like a balloon and the pain in my joints, mostly my knees wrists and fingers was horrible. As I look back now and what i know about Lupus I have had had rashes and other symptoms for qwite a while. I live alone and I feel scared, but I have my lord that will help me through and I will get involved with other support systems. It was so great to read these other storys and share feelings with others. What wonderful and strong people we are and are becoming!!! May god bless you all. I welcome mail from others [email protected]"

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"hi i was diagnosed with sle in june of 1998 i thought i had carpal tunnel and was living with one virus after the next a major flare came on at my job i was a bartender at a casino which i loved to do. all of a sudden my feet started swelling and my hands also by the time i left work i could hardly drive the next day i was in a wheelchair and couldnt even walk i had just changed doctors because i didnt think the doctor i was with was helping me felt like he was keeping me sick well the new doctor took one look at me and ordered test for lupus and then sent me to a specailst right away my doctor ran more test and confirmed that i did indeed have lupus. i was so scared and was out of work for twelve weeks and then just two days a week upon returning i guess giving up my job has been the hardest thing i've had to endure except for the pain which is relentless. i currently am taking 5mg predisione, 600 mg of plaqunil , 2400 mg of motrin,folic acid, potassium, duretic,vicidion,methoderate a shot weekly given by myself and 40 mg paxil for depression, i really hope someday to be in remission and pray for it daily. i have a good support system a wonderful husband daughter and two great grandkids who i rely on to be there for me. i take care of my grandkids now because i was giving up on life after i had to quit working this is my second 12 week leave and my doctor says i must not work anymore that i gave it my all and i have to think of my health now. everyone keepthe faith and with enough prayer and faith maybe this is the year for a cure. if you would like to talk please e mail me at [email protected] again thank you so much for listening."

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"I have been trying to find out what is wrong with me for over 3 years. I have known that my joint pain and fatigue are not normal for a long time. I have the same problem many of you describe, I look fine. Only those closest to me know how much I have been through. I have lost wonderful jobs due to my health problems. I have been told all my health problems are in my head. I am taking medicines for atrial fibrillation, and now I have had a red rash for over a month. I have had a low grade fever and terrible fatigue and joint pain. My rash started on my face and was very red and hot. I can not find any documentation of a rash like mine on my arms and legs and trunk. It changes from day to day even hour to hour! My doctor is waiting for my lab work to see if I have Lupus. I also will feel relieved if it is diagnosed so I won't feel so crazy. I fear the test will come back negative. I know that sounds sad, but I don't want to be back at square one. I have had every other blood test done for a disease with these symptoms, and they have all been negative. I feel very confused because at times I feel so good, then boom! I am so tired and hurting that I just have to lay down. I have a wonderful husband who is almost running our house and raising our child alone since I have been so sick. My 2 year old can not possibly understand why mommy can't play. Still, I am determined to keep my job and go on with life the best way I can. I have had to learn patience and acceptance. Hardships can teach you lessons you would have never learned. I am very lucky and am glad to have found these personal stories. I am a nurse and am very familiar with the medical side but could not find many firsthand accounts of how to cope with so many common misconceptions("you look fine to me," "if you quit thinking about it you would feel better," "you are too young to be sick") Thanks to all who shared." Troubled in Texas.

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"Hi, my name is Tonya and I'm 17. I've just been diagnosed with systemic Lupus about 3 months ago. The way the doctors discovered that I had it was because of the tanning bed. I was laying almost everyday for Prom and I thought it had just burnt my face, brcause the butterfly rash appeared. The doctors did test after test and couldn't figure out what it was, they said it was normal and that was that. Later it got worse, nothing helped and I started feeling bad all over. We went to a dermatologist and did a lot of tests, finally he discovered I had Lupus.

Now I'm on medication and I'm doing fine. There are some days that I feel like I'm actually dying, it's really scarey but it's something you have to deal with. I'm just thankful I have medication now to help keep it under control.

Special thanks to my mom and dad for being there always through good and bad times!!! I love you two very much!!! Thank you!!!!!"

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"When I found this site it was like I was reading things I had written. But instead they were strangers telling my story.I am currently waiting for my lupus test results. I have been sick for about five years.I have had the dumbfounded looks from my doctor,I have been sent for thearpy.I was dx with FMS 5 years ago.I have had a "mild" stroke, and been in pain. I am sick and tired of being sick and tired. I would like to know how the doctors think I am suppose to get of rid of stress in my life. Do you all know anyone without stress in their lives?I am 34 years old, I have a wonderful husband of 17 years, I have a 14 year old son and an eleven year old daughter.My mother is battling breast cancer, and is not winning the battle.Add to that I feel exhausted and hurt all of the time.Why in the world would I be stressed?It is really sad when you hope that your blood work comes back abnormal. Atleast if the blood work is abnormal, that means that I am not.Thanks to all of you who have shared your stories here. It has really helped me relize that I am not just "stressed", but there are others who really do understand. Thanks for letting me vent these built up frustrations. Take care of yourselves. Thanks,Karen."

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"I have been diagnosed with Lupus for a year and a half, though I have had Lupus symtoms for many years. I managed to have three children despite having antiphospholipid antibodies. Surprisingly this showed up as abnormal antibodies during my pregnancies, and I was told it was due to a mix of bloods, which it most definately was not. I think that you should always ask questions of your Doctor or specialist, as you know your body better than anyone on the planet. I was off work as a secondary teacher for a year, and I never thought I would ever work again. I am now back working as a job sharer. Time is a great healer, eating well, sleeping well, walking in nature does your heart good, loving others, spiritual beliefs, supplements if they help, meditation,having a special someone to talk to. Try not to dwell too much on the past nor to think too far into the future. We are on earth for such a short time that we have to make the most of our lifes. People are often very afraid of your illness, and I have found that many people cannot empathise with you beacause their are few signs of illness. I have found now that I no longer tell everyone about the Lupus I live with, I only share it with a well chosen few. When people retort on how well I look, I usually say that I myself cannot understand the disparity between the way I look and the way I feel. This makes people more at ease and more relaxed about your illness. What this illness has taught me is a sense of joy. I stop to consider life more, laugh at little things, enjoy moments that used to pass me by. Every little thing that someone does for me, or I do for them, means so much more. Of course I have some black moments where I have a good old cry, but I remind myself when I'm feeling bad, "This too shall pass" . Take care of yourself, be kind to yourself, you can become a really special person living with an illness like Lupus and have a richer life than others who do not suffer as you do."

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"After suffering from pains in my arms, legs, hand and generally all over my body, tiredness and generally feeling unwell all the time for the last 15 years, it was a great relief to have been diagnosed with SLE, this was discovered via blood tests and other symptoms associated with SLE. I was constantly worring as to what the problem was, especially when my GP kept saying it was all in my head!! The only problem I have encountered is that the Consultant didn't seem very interested in my case due to the fact that at the time I saw him he said it was in remission!! Then again they are very busy people and I feel I don't have a severe case of SLE. I have found out more information with regards to the SLE via the internet. A big thanks to all who contribute."

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"I am a 25 yr old woman -- I have been very sick for a long time -- and am starting to feel much worse. I go to a teaching clinic for resident doctors, as I do not have insurance. I would really like to know how to get the doctors to listen to me and help me. I have incredible pain in all of my joints, am extremely tired all the time now, have periodic numbness on my face and hands, chest pain (costal chondritis), and get a frequent sore throat. In addition, I am retaining fluid in the hands, face, and feet the lymph glands on my neck are visibly swollen.

Don't mean to bum anyone out with this message -- I just need someone to hear me, and understand, I guess. I am very, very grateful to all of the people who have been sharing their stories -- it's a great help to me. *** How can you get the doctors to listen without assuming you're suffering from "Hysteria." Any thoughts/advice would be greatly appreciated. Thank You!!!!!" Gabrielle, St. Petersburg, FL. (you can use my name & location. :-) )

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"I have found that by working to achieve something each day - however small, helps avoid depression, which in turn helps with the lupus. Easier said then to achieve sometimes!"

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"I have had for the past three years been told that my platelet count was low. Finally, two weeks ago a new family doctor ordered some test. The tests suggest that I have lupus. I haven't had any symptoms yet although I do notice very slight muscle aches from time to time. I am really scared as I am not sure what to expect. I just had the test results and possible dx revealed to me yesterday. Since I heard, I have been reading as much as I can about this disease and trying to become as educated as I can.

I am hoping and praying that I will be fine and that all of us that are suffering from this disease will really find "the light at the end". My husband and son are also quite scared and I am asking all my friends and family to keep me in prayer as God is the ultimate "healer". I hope I can help someone else sometime in dealing with this or any other illness. God bless us all.

Thanks for allowing me to share your stories and to share mine although it appears that I am a babe in the woods and not have the experience with the disease so many of you have. Please pray for me and I will do likewise." Judith

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"Hi, I am 42 years old - have had Lupus since 1991 - I had two major surgeries/two surgeons - The doctors think this is how it happened - Too much for my body to endure - One doctor said do it - one said that's crazy - well I choose the wrong route and had both - I have suffered greatly - got fed up with all the medicines making me so sick and after a recent severe flare up just started on Vioxx yesterday and already can tell a difference. Fatigue is a killer for me - Have major problems with my chest killing me as though I am having a hear attack and hardly able to walk with my feet and legs if I sit for any length of time. I have found with God's amazing grace I can make it though - I am an only child - my parents passed away - one in 93 and the other in 97 so it's been a tough bout but I have a wonderful supportive husband and one 14 yr old son that could not be better to me. Would love to hear from some of you at [email protected]. May the Lord richly bless you and yours and he does me and my family daily..Lupus in NC."

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"My heart breaks for each note that I read here today. I praise God for each and every person who suffers through lupus. I've been there, shared that and suffered. I had two very small children when I was first diagnosed. There were times when the baby would scream and I couldn't pick her up fearing my aching joints couldn't support her. I too was on heavy doses of cytoxan and prednisone. Frightening changes in my character. For those of you who know the Lord, know that He weeps when you weep, suffers when you suffer. Thats what the cross is all about. Look up Isaiah 53:5 then Matthew 8:14-17. He does heal. My kidneys were shot. Today I have absolutely no scarring or blood protein loss. The doctors are calling it a miracle. There is no trace of lupus or any trace that there has ever been. It is not in remission it is gone and it is documented. Does God heal YES! I pray for each of you who suffer. That He may touch you with healing and with His presence. Trust in Him."

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"This is the first time I ran across this site. I first began experiencing symptoms shortly after an auto accident. My wrists began to hurt, which they thought that maybe I tried to brace myself during the accident. But then progressed to my fingers hurting and swelling. In the mornings, I had to run my hands under hot water just to be able to straighten them out. Then, I began to have lightening bolt pains running up the back of my legs which no one could explain. Unexplained fevers, muscle and joint pain, and unrelenting fatigue came. I was treated for carpal tunnel, then dx with scleroderma, then mixed connective tissue disease, then finally reduced to just lupus! I originally started the antibiotic therapy(Dr. Brown's), but got much sicker. I ended up in the hospital needing a blood transfusion. My hair became baby fine and started falling out. Normally afraid to get on the scale because I easily gained weight, I was now afraid to get on the scale because I kept losing (50lbs) in all. My sense of taste and smell got all messed up and everthing was making me nauseated. Since there was kidney function involved, the prednisone was increased to 40mg daily and I ended up gaining 80lbs! I completely lost my sense of taste and smell, and it did some weird things to my mind. I was hospitalized for depression, and nothing seemed to help. It wasn't until my dosage began to be reduced that I finally felt better. The funny thing is, all the docotors I dealt with - not one asked me when I began to have these problems. If I would have said "within a week of starting the high dose of prednisone", I think it would have been a clue. I ended up on Cytoxan for a year and felt really good. Unfortunately, because of my labs, I have to go back on it again for another year. It has been a long haul, but I was able to go back to work. The cytoxan treatments leave me really fatigued and red blotches on my face, but other than the treatments and follow up bloodwork, I haven't missed much work. The relief from pain was a miracle! I am now on 5mg prednisone, 400mg Plaquenil and Evista (hormone replacement). All I can say is that the help of a knowledgeable doctor, help and prayers from my family, friends and church, and the grace of God got me where I am today. There is light at the end of the tunnel although sometimes you feel to weak to get to the end. Life is good! You have to be informed and take care of your health and health care decisions. Thanks for letting me vent!"

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"I was 13 when I was diagnosed. The doctor thought I had leukemia. I am 31 now and have had 2 kidney transplants, cataract surgery on both eyes, and a total hip replacemnt 2 years ago. Even after all that, I finally feel almost human. My mother calls me her "bionic daughter". I am unable to hold a full-time job, but I volunteer for the Red Cross in my county and I love it. I feel needed. For the newly diagnosed, there is always a light at the end of the tunnel."

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"This is a response to the person who has pain in the ribs (costochondritis) I am 34 yrs. old and have had a pain that is right at the bottom of my ribs where they meet in the center. The pain usually happens if I am on my back when laying down and feels like a tremendous pressure that goes through to my back. If I happen to take a deep breath it's even worse. the pain can be excruciating. This has been going on since I was 15 and doctors have never been able to give me a reason.

Over the years I have had many problems with aching joints and muscles, migraines, swollen glands (including parotid), earaches, chest pain, hair loss, a red scalp, and bouts with total fatigue and exhaustion. My doctors have just started doing different blood tests and have found that I have Sjogren's, a high rheumatoid level and are now doing checking for Lupus.

It's very frustrating to have all these different things going on with your body and the doctors telling you that you appear to be healthy and that it's just stress. I began to feel like these were just things that I had to accept because it didn't seem like anyone was ever going to try to delve deeper to find out why these symptoms were there. I'm thankful my doctors finally have."

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"This has been most frustrating, but I am thankful that through it all I have learned to take each day and make the most of it with a thankful heart. "

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"I started with symptoms of SLE when I was 4 years old and was then diagnosed with Sle when I was 7. At that time any available information was usually all doom and gloom which made it very difficult for my parents to come to terms with my having SLE. I'm now 31 and it's brilliant to see positive pages like this appearing on the Internet." Cheryl. [email protected]

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" I have the lupus anticardolipin syndrome along with lupus. Medication I am on is Coumadin, Azulfadine and metoprolol. The Coumadin if for Deep Vein Blood clots. The Azulfadine is for my lupus arthritus and has completely (95%) cured my joint and muscle pain from head to toe. It is a miracle drug for me. The metoprolol is for extreme tachycardia. I thought my heart was racing some of the time but it turns out it was racing all the time. I had gotten to the point where I could not go outdoors on a hot day without immediately getting very sick. (short of breath, dizzy, chest pain etc.) After every cardiac test there is they finally found out that my heart races all the time. The medication for this has also been a miracle. My heat problem is almost gone and I can go up a flight of stairs without gasping".

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" I was diagnosed with Lupus in 96, but I had many symptoms since 13yrs old. I am now 40. I have a very good Dr. I've been on IV's with steroids and robassin for the last yr. I have a husband who tries to be supportive and 2 boys 5 & 10.

This disease has turned all of our lives upside down. The constant pain, weakness, inflammation, photosensitivity has kept me depressed enough to be in a mental hospital at the beginning of this year. My attitude has gotten better but we hate what this disease has done to our family. New Lupus people take it 1 minute at a time, know your not alone."

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"I was dianosed with Lupus 10 yrs ago...it was diagnosed due to a major stroke, my platlet count was down to 6, It was nearly fatal..

I had joint complaint before the stroke and went from Dr to Dr.. trying to explain what was wrong..at each instance I was informed it was all inside my head, go home and take a panadol....

I began to bruise very easily...to the point of when I was admitted to the hospital, the nurses asked my boyfriend (now husband) if he had assaulted me. My joints were aching...I was 21 at the time. Feeling tired all the time. I just wanted to sleep..was this 'normal' was my thoughts at the time.

Finally I went to see a female Dr who new there was somthing wrong and ordered some blood tests..unfortunatly it was too late, that night I had the stroke but still managed to get into the car and drive myself over to my parents house.

My father called for an ambulance....that was a long time ago...bvut I still remember things as if they happened yesterday.

I still see a rematologist only once a year now. Am still on prednisolone but a very small dose. Have got a weakness in my arm and leg but I can walk and use my right arm a little.

I havn't had another flare up since then...although I still get the butterfly rash and aching joints. I have 2 lovely daughters who are 4 & 3 now. and live life to the full. you only live once and after reading some of your stories I am lucky that I have not/ do not have another flare up."

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"I'm 36, I was diagonised with Sle in Sept. of 1992 after years of going to different Drs. This is Sept 23, 1999, now the Dr. said it is Lupus Profundus. In april of 1999, I started hurting very bad, but thank God I had 15 wonderful months with no pain. My husband doesn't understand that in the morning I'm still very tired....My hair is falling out real bad, but again Thank God for wigs!!!!!!!!!!!!!! In the town I live in there is no place to get wigs but I found a great place in a town 80 milesaway. I got to this site looking for information on Lupus Profundus.......... Anyone that has Lupus if I can give them any advice one thing is to trust in God he will be there through it all, my faith as seen me through it all!!!!!!!!!!!!!!"

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"I was diagnosed with Lupus in 1991. After a few months I decided that the doctors did not know what they were talking about. I felt fine. In 1995 I had my one and only son. Soon after, I had to eat my words. The Lupus came back and came back strong. I had just quit my job and had started back to college. I almost did not make it the first semester, but kept pushing. At the beginning of the second semester, I had a liver infection caused from some of the medication that the doctor was trying. They continued to change it until it began to help. I have one year left of college and pray every night that I will be strong enough to hold on a little longer. Nothing means more to me than seeing my son grow up and getting my college degree. If you are suffering and your joints hurt, take it from me, you can do it. Hang in there, that good day is coming !!!!"

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"When I exercised regularly and had a healther diet, I was in remission and felt the healthiest I ever felt. The original doctor that diagnosed me was a dinasaur and told me I should never get pregnant because I would die. Of course, since then I had a doctor who was more up-to-date and I had a fairly normal pregnancy with only minor complications. "

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"I was diagnosed in 1981 and had a full flare in hospital that year, i was very scarry, i could not see for one week, could not walk for three weeks, had central nervous involvment, my kidney almost totally shut down all during my 8-9 week stay in hospital. thanks to my doctors, family, freinds i came out of there pretty good, did not have to go on dialisis, was on pretty high steriods for a while, had to work part-time for 8 years. i have had minor flares, i work full time and feel iam really doing great, something you could not have convinced me 15 yrs ago."

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"I sometimes feel as if I've been in a car accident i.e. am stiff, joints ache, sluggish, head feels funny, dizzy, dull headache, confused. Some days I get up feeling sluggish and have a dull headache and as the day wears on I feel a little better. I also have been diagnosed with ankylosing spondylitis because I have low back pain and neck pain plus bouts of uncontrollable diarrhea and GUD. I am taking Sulfasalazine and the diarrhea is under control. My gastro doctor never checked me for Lupus when nothing he tried (plus tests) helped the diarrhea. The only thing that did help was taking Questran which I no longer take since the Sulfasalazine works."

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") I was diagnosed with Lupus at the age of 25, although once I new what the symtoms were I realised that I had actually suffered from it since at the least the age of 16. I was so relived to actually have a diagnosis and be able to tell people that I had Lupus and that one of the symptoms was fatigue. So many people though of me as lazy! That is the main problem that I suffer from, I can cope with the rashes and the joint pains, but not having the energy to spend quality time with my family is most distressing. I have tried aromatherapy but have been told that Lavender heightens the immune system, and I find that I always feel worse if I use it."

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I hadn't heard of Multiple Connective Tissue Disease, but it certainly sums up all. I am seeking disability, having been let go of my job of four years as an office manager and bookkeeper, due to my illness. I am also an insulin-dependent diabetic. I currently have no income, and will probably be evicted. People look at me and don't see anything broken, so no one believes I'm so ill.

No doctor wants to treat my complicated problems. One in the emergency room said YOU NEED A QUARTERBACK TO HANDLE ALL THESE PROBLEMS! No, just regular people like myself who care enough to tell their very personal stories. I read every one and it felt like talking to my best friends. THANK YOU ALL!"

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"I was sick during all of my childhood until about the age of 14. I was diagnosed with Lupus, but at the time there were none of the current tests (I was born in 1969). My mother was told either that my symptoms (high and frequent fever, nose bleeds, flu-like aches, pleurisy, fatigue, blood in urine, infrequent rashes after sun exposure) were psychosomatic, Lupus, and even accused her unjustly of child abuse. I had a two-three month attack when I was 18. I am now almost thirty, and have felt well (despite a need to sleep 9-10 hours a night, plus naps) for over 10 years. In addition, my parents were never very communicative, and prefered to tell me that I was "fine" even when I had these symptoms. Although I have not had any of the symptoms, I still wonder if I am in a long remission, or if these symptoms were something of the past, never to be seen again. Is there a risk if I decide to have a child? Is it too late to have any definitive answers, now that I do not suffer? Is there anything that I can do, healthy as I am now, to answer some of these questions? Please respond to: [email protected]"

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"It's been 2 months now since the doctor's suspected that I have lupus. The unrelenting pain day in and day out has been very difficult to deal with. I am still trying to cope with the possibility that I have this disease, and at the same time I sometimes tell myself " maybe I don't." I am very scared and I have no one to talk to. Because of my not feeling well most of the time, no one wants to be around me. I am very fortunate though to have my wonderful and supportive husband and daughter who love me very much. If it were not for them, I really donot know what I would do. It has been encouraging to read the experiences on this website and "thanks" to all of you for sharing such personal and no doubt painful info about your lives. Knowing that I'm not alone and reading about your experiences really helps me to cope. Take care of yourselves and best wishes to all of you."