Medical Questions > Conditions and Diseases > Lupus Forum

Newbie Looking For Advice From Someone That Understands!

Hi everybody, im so happy I found you and it couldnt come at a better time. I have been feeling very scared and hopeless latley with all thats going on with my health and its hard for people to understand me, which I can understand. . Im sorry if this gets to long but I really need to vent. First let me start by saying that I am 24 yrs old and mother to a beautiful 9 mth old boy. When I was 14 after 3 years of watching my mother go from Dr. To Dr. With a list of symptoms always to be told that it was in her end and nothing was wrong with her I too thought that maybe she was faking it, I used to get so mad when she would promise to take me somewhere only to end up crying in bed that she didnt feel good, that she was going to die, and that nobody beived her nor did they care. Then the day came that she ended up in the hospital with shortness of breath the drs coulndt figure out why she was having such a hard time breathing so they decided to perform an open lung biopsy. My mom so so scared she said she had a feeling that something was going to happen but we told her she was overreating and she would be fine to make a long story short she never made it out of the operating room - she passed away during this simple procedur. It was the worst day of my life and I still live with the guilt of not beliveing her and secretly resenting her for being sick all the time. I learned that we must trust our bodies even if the tests are coming back normal and every one around us thinks we are just hypercondriacs because ultimitly we now better. Like my mom, she would always make comments that she thought she had some sort of autoimmune disease and that stress made her sick. After having an autopsy performed it was determined that she died as a result from her lungs honeycombing due to sclerederma. She was right all along, she knew something wasnt right, that her body was failing. Jump to today, about 4 weeks after my son was born I started feeling sick my main problems were my bones wouldhurt real bad it almost felt like some one was hitting them with a hammer. My muscles (mainly in my thighs and upper arms) hurt real bad and my skin and hair would hurt to touch. I overall just felt like something wasnt right I felt sick all day and it was extra hard on me because my son would only sleep 2 hrs at a time. My husband worked 15 hrs a day and I have no family so there for I had no help. It was a very difficult time for me. I went to the Dr. Who with my family history decided to test my ana he called a couple of days later to tell me that it was positive and that I needed to see a rhematologistbut not to be to concernd that could be caused by my pregnacy. The rhemotolgist who by they way looked and acted younger then me said that I didnt have enough symptoms to diagnoise me with anything and said that he was 99% sure that it was a result of me having the baby and told me to come back in 6 mths to be retested. I figured this was good news and that all this would just go away. We were in the process of relocating to tennesse (from florida) when I went back to the dr to be rechecked still having symptoms with new ones as well,( my eyes felt like sandpaper and I had just been to the dentist to find that I had 17 cavaties!!) he ordered more labs but told me that my symptoms were probable a result of caring for my child. He called me 2 days before I left for tennesse to tell me that my ana had gone from 1:80 to 1:640 and that I tested positive for sjogrens syndrome and neede follow up care as soon as I arrived in tennesse. I immediatly went to the grief I felt when my mother died and how groing up with out her drasticly altered my well being. I took this as a death sentence I picturd my son learing how to ride a bike with me not around to see it happen. I thought how my husband would tell him about what kind of person I was and how much I loved him. I cried and cried and cried. When I got here 3 months ago I got hooked up with an amazing rhemy at vanderbilt hospital and I feel like I am in good hands with him he told me that he suspects that I could have lupus but only time will tell. He gave me plaqunil in the mean time for the sjogrens it took me 2 months to finally get enough nerve to take for fear of the side effect and the fact that in some crazy way thought that maybe if I eat well and take vitamins this will all just go away. My husband finaaly convinced me to take it since its obvios the other things arent working -at all. Ive been on the medicine for a couple of weeks and my appt. With the Dr. Is on tues. But im wondering if anybody has experienced the same symptoms that I have. Every month at the same time they start it happens 1 week before my period and the week that I actually have my period. So its 2 weeks out of the month that it feel sick and it hits me like a train, all the sudden after feeling well I start to get dizzy and so fatiged I sometimes have to beg my body to move my whole body achs and I get this feeling on my skin like its been rubbing together (its hurts to touch) also my hair hurts to touch but only on one side and my ear on the same side burns on the inside I get terrible headachs and a feeling like something is stuck in my throat- it drives me nuts. Also any kind of loud noises startles my brain it feels like it jerks and I get twitches in my fingers and what feels like my organs (very strange feeling) im wondering if maybe my nerves are being affected? This mornig I attempted to exercise I was on my 5th squat when my legs just gave out it was so scary since that never happened before then this afternoon me and my husband were shopping when all the sudden I got so dizzy it was hard for me to but one foot in front of the other we had to leave the store my husband wanted to take me to the hospital but I told him no once I got home I went to lay down I felt like I was choking. It felt like something was just stuck in my throat and I was so nause and dizzy it felt like I had spent the day drinking and was feeling the aftereffects the room just wouldnt stop spining I finally feel asleep and felt a little better when I woke up. I wonder if what happend when I was working out had anything to do with it. Im just so sick and tired of feeling this way I feel like a burden to my husband and sometimes I feel angry that he questions me like "how can you feel so sick, your were fine yesterday" and I feel like maybe my son would be better off without me instead of having to go through the ups and downs. I remember how I felt towards my mom and it would kill me if he felt the same. Please. Any advice or support would be be really helpful. Once again im sorry this is sooo long I do feel better getting this out. Thanks for listening :)
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replied July 4th, 2005
I Hear All of What You Are Saying
:shock: I am in shock. I think reading your post made me feel like I am not alone. I am new here and have just been browsing looking for the right time to say something.

All your symptoms I too have been experiencing. You didn't mention any itching or skin rash? I have them awful. My arms are beginning to look like hamburger from so much scratching. The sores are like little holes with raised edges. When I scratch, instead of alot of bleeding, I have clear stuff like that of a blister ooze out.... Gross hugh?

I am 33 and had to have unexpected open heart surgery last september to replace a damaged valve. They told me the valve appeared to be damaged from a disease or rheumatic fever. Both of which I never had. Over the past two months since some lab work showed positive ana and high protein in my urine, I think we are leaning towards a diagnosis of lupus. I need to find a rheumy doc now so I can get a definate diagnosis and maybe they can do something to make me feel a little better.

List of symptoms>
*raised rash on my forehead thought they were wringworm/s. Size of a quarter began in jan. 05. Also itchy bumps on forearms that are the size of bites,they feel ho sometimes inflamed with pain to the touch and then comes severe itching.

*fatigue- noticed in feb. 05 and has progressed. I can't drive more than 5 min. I fall asleep on the toilet, in the office chair(once I fell to the ground), standing up in kit(husband found me with eyes closed). Any time I get still I fall asleep but jerk when going to sleep. I never wake up feeling rested and like I had a full nights sleep. I also wakeup wet from sweat. Staying busy and energy drinks is what keeps me awake.

*chest pain and short of brath began in early 04. Finally doc said open heart sugery needed immediatley to replace stenosed mitral valve and releive pressure on my lungs. Done in sept 04. Still have weird pains when I breath deeply.

*tounge is always raw and hurting. Sometimes it gets like ulcers that are painful. Teeth have become so sensitive that anything cold sends chills down me and hurts really bad. Sugary items are painful to eat. Like my mouth is full of cavities.

*swollen lymph nodes in my neck and a couple under my arm.(not painful) but my throat stays sore in a weird way. Sometimes there is something stuck and it feels awful to swallow.

*i have started to notice thtat the sun makes me more tired and an overall uneasy feeling of exhaustion. I also tend to itch more.

****** :? Sorry I just cought myself asleep :? ******
*certain areas ache severly . Tailbone has been inflammed and very painful for 2 years. I moan in pain from sitting to long. Swollen huge painful joint on my big toe. Bottom of feet hurt often. Knees, wrist and fingers hurt often. Sometimes my fingers go numb and tingle.

*abdomin pain sporadically appears and is so bad I can not move or stand straight. I also swell in my abdomin. I am a small frame person of about 112 pounds and sometime the swelling looks like am pregnant and my weight will increase by about 5-7 pounds.

Sorry to ramble on about me but I thought it might be helpful to know if any of us experience the same thing.

I have so many questions.I don't really want to go to the doc, I am sick and tired of being sick and tired. I do know that ultamantly I will never get better without seeng a specialist.

Please anyone reply with any advise or tell me what you think about the way I feel.

Pj ...I hope you start to feel better and also I hope you get the answers you are looking for. Email me any time and we can maybe begin to help one another.

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replied October 1st, 2006
Hi guys!
I can relate too, and believe it or not I am a nurse, lpn. I started with the following s/s halfway through school: swollen, inflammed, painful joints in hands, knees, ankles and wrists...In fact my fingers have begun to contort, extreme fatique, dizziness, wt loss, night sweats, enlarged lymph nodes everywhere, thinning hair and increased shedding, kidney stones and gall stone in mass production, fainting episodes....I went through a battery of tests and family dr said my igm and igg through the roof..Then tested me for parvovirus and said...That's it and s/s will continue for maybe a few years. Well we moved to ky and it has been 3 yrs since then and I finally went to dr about 2 mnths ago. They thought lymphoma, bipsy negative. I finally went to uk to see immunologist and internal Dr. I also just got the butterfly rash about 2 days ago. The dr assured me no cancer, but definitely something autoimmune especially since I suffer from pneumonia every few months. He is really thinking lups and he took 9 viles of blood and did a ua that showed protein. He assured me he would look at every autoimmune and rheumatology test there was and meanwhile I asked for prednisone and ultram as had alot of success with those meds in the past, mostly the prednisone, if I take that I don't need the ultram...But steriods not good long term.
I don't mean to ramble...But point is this...I couldn't take it anymore....Pain, extreme exhaustion and dizzy spells right in front of my pts...I found the immunologist in my health insurance book and knew that a university clinic/hospital would be my best option. I went in, gave him my s/s and med hx and told him that I needeed answers now and tx now as it was affecting my entire life, and that I couldn't take care of people unless I could take care of myself...Tired of dr's looking for one thing at a time...I felt that a broad spectrum study needed done, and that if I lost anymore wt I would be in big trouble and I had no appetite and was literally forcing myself to eat and then not able to eat much....I said enough is enough...I want answers and if you don't want to find them don't waste my time, I will go elsewhere...He was very understanding and assured me he would run all tests and start trying me on different meds to get me some relief....You need to be your own advocate because no one else will! If you don't you will suffer needlessly like me for years until you don't even remember what good health and pain free living is. Even if you have to go through many many dr's, it's worth it. Don't be affraid to get your own records and labs and look at them, its imperative. You will find a dr out there that will help you, just don't wait until you are just this side of sanity. I will add that family dr in past did run one ana test 3 yrs ago that was neg...Come to find out that doesn't mean a thing, had I known then I would have pressed on...Hang in there, and be your own advocate....Say enough is enough!
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replied March 4th, 2007
Looking For Someone Who Understands
I understand,I recently started making a list,bare with me,here goes:
vaginal flaring(no stds -ever)extreme fatigue,sensitivity to light and noise,sleep problems,MOOD swings,anxiety,panic,depression(clinical)i rratablity,sore mouth,mouth ulcers,earaches,nightsweats,shortness of breath,chest pain,no or little interest in sex,chronic sore throat-tonsilitis-ongoing,dental problems(resulting in removal of 3/4in.of exterior jaw bone & tissue,frequent abcess',little concentration,memory loss,face&arm redness &burning,pain in abdomen,ovarian cysts,back pain above hip bone,hip problems,blanching and pain in hands and feet-often little or no feeling,shaking/tremors,heavy painful prolonged periods(11-16 days)thirst,sunburn look on arms(upper) and face/ears,discoid lupus(diagnosed) ,eye ulcers(rim)&nerve damage....not sure if I missed anything!I feel like a car crash!!Lets not forget all the pain and nausea too. (I forgot weight loss 5'9''& 104lbs from 152 lbs).Want to slap the next person reading labs that say''well,on the whole,everything seems fine!! Is anyone else having trouble with their diagnosis? Many of the meds they have tried caused a bad reaction within hours,so even injections are not working anymore-urgh!
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replied June 21st, 2010
Lupus Treatment?
im the same way. except im only 16 and
i just recently got diagnosed with lupus.
im always tired and my ribs and stomach also
swell up. its horrible because im a teenager
and i should be able to do things but i never
feel like im rested enough to do anything. I've
been suffering through these symptoms since i was
about 14. anyone know what kind of doctor i should
go to or whats the best possible option for treatment
for a young teenager that still needs to be able to
live life? Write me.
thanks- xoxo emily bonham
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