Help... Please :(

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BlackWolf
New Member


Date Joined Jun 2013
Total Posts : 3
   Posted 6/27/2013 7:29 PM (GMT -6)   
I'll start off with my introduction. I'm a 24 year old woman, Caucasian, mother of a 5 year-old little boy and a bunch of fur-babies! I've been having alot of things going on lately and after the most recent issue occurred (swollen lymphnodes behind my ears, side of neck and painless bumps on my scalp that became very painful after my picking at them), I began searching online for possible causes for it. I found nothing that related until one site mentioned Lupus as a possibility. I went to a site about Lupus and began reading the symptoms. Needless to say... I believe in all honesty that I have Lupus. As I was reading, things that have been troubling me for at least 12 years were symptoms of Lupus. I rarely ever go to the doctor so most of the symptoms I have haven't been checked by a doctor. The REASON for never going to the doctor is because they never treated my severe joint paint in the past, they tried to say I had growing pains. I lost my faith in them for not helping me. I am going to make an appointment tomorrow morning as this is really weighing on me and my lymphnodes are absolutely excruciating at the moment. I'd like some input as to how I should bring up the subject so my Dr won't just think I'm a hypochondriac and I'll list all my symptoms in the following paragraph, please also let me know if my symptoms sound like Lupus to you. Thank you, I really need help :(

1. Joint Pain. This has been going on since I was around 12 years old. It started in my knees and now most of my joints are affected... ESPECIALLY my knees. My wrists, shoulders, ankles, hips, sometimes hands and fingers. My knees are so bad now that I stood up from a crouching position this past Christmas and my boyfriend asked if my pants just ripped. It was my knees, they sound like they're tearing when I stand-up and crack and 'grind' when I crouch down. It's become horrible to walk up or down stairs as sosometimes my knees will not 'lock' and they 'give out' causing me to drop and often fall. My jaw often hurts, making chewing and yawning painful and sometimes pops so loudly people in another room can hear it.

2. Light Headed, Passing Out. Whenever I stand up from a crouching or sitting position, I get extremely light headed and come close to passing out, which has happened in the past. In 2007 I used the bathroom, then began waking to the living room and passed out cold. The last thing I remember was my mom screaming as she watched me fall. That was the first time. Now I know when I see sparkles and things start going dark and my ears ring ALOT WORSE than they usually do that I need to get back down before I pass out.

3. Face 'Rash'. I never really considered it a rash because it didn't itch but was warm. I did notice it wasn't 'normal' because no one else had it. It isn't raised or extremely red (unless I go out in the sun) but it's there, most of the time. Looks just like the Malar Rash in shape.

4. Sunlight. Recently, in the past couple of years, I cannot tolerate heat or being in sunlight. I experience extreme fatigue, nausea, my skin feels like it's on FIRE in direct sunlight, the 'rash' on my face gets alot darker and I get red patchy areas anywhere exposed to the sun.

5. Dry Eyes. Enough said. My eyes are so dry it's pitiful, I've even had the lining of my inner eyelids start to peel, from friction I guess.

6. Tinnitus. The horrible ringing, pulsing, and random sounds in my head are absolutely LOUD and I can't remember when they started. The ringing is similar in frequency to a jet taking off. The pulsing is like hearing a heart beat on an ultrasound but is faster than my own heart beat. I sometimes hear people talking when I know no one is around, and sometimes I hear music playing with no singing, even though I know there's no radio on. My hearing isn't the best, if I wear a toboggan I have to leave my ears uncovered to be able to hear what people sitting across from me are saying.

7. Fatigue and Insomnia. The insomnia has been going on since about the same time as my knee pain. It takes FOREVER for me to fall asleep no matter how tired I am. I used to take benadryl to knock myself out until it stopped working. Once I do fall asleep, I sleep like a rock. The fatigue is more recent, this year actually. It doesn't matter how long I sleep, I still wake up feeling incredibly exhausted. I just don't feel like doing anything anymore besides laying around. I am unemployed at the moment, thankfully because I wouldn't be able to work. It's that bad. I'm a very active person, I love to go and do, love to hunt and hike. This sucks, to be blunt.

8. Nose Sores. These arent cold sores. They're painful and annoying. One side of my nose is almost always swollen shut. My nose bleeds alot too. Just the other day I was at the vets office with my litter of Dobermans getting their tails docked and it started pouring the blood.

9. Loss of Appetite. On and off. Sometimes for a couple weeks I just have no appetite whatsoever. At least once a month.

10: Random Bruises. Self explanatory. They just pop up out of no where, mainly on my arms and legs. Sometimes my face around my lower jaw and on my fingers and bottoms of my feet.

11. Depression, Mood Swings. I've had issues with depression and anxiety for a very long time. Lately though it's so bad I honestly DO NOT feel like 'me'. I get these CRAZY suspicions that I know are absolutely absurd but still worry myself over them even though 'the real me' knows better... Hope this makes sense. Hard to explain this one :/

12. I CANNOT take birth control. I don't know if this is related in any way but it absolutely makes me SICK. I can't eat, drink, hell...I can't even smoke a cigarette without puking everywhere. I tried to get Mirana and it wouldn't 'fit'. My GYNO said I'd have to have it surgically implanted. I said the hell with it. I've had a long history of Ovarian cysts as well and I question my fertility for numerous reasons.

I think that's enough, there are more. I have a list of 40 different things but these are the worst. Please let me know your thoughts and opinions.

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1037
   Posted 6/27/2013 11:55 PM (GMT -6)   
I am so sorry you are experiencing these symptoms. I would make a list of every symptom you have in the order it bothers you. Then show this to the doctor. I actually sought out my diagnosis. I was very sick and after tons of tests no one could figure it out. I did tons of research. I found Lupus and so much fit. I went to my GP and asked for the test. But I did have a previous relationship with this doctor and I also told them symptoms.

After the test my GP did came back as a possible Lupus case I was sent to a rhemitologist. I had a list of symptoms just like I am telling you to prepare. There is no one test for Lupus. They do several blood test, maybe a urine test, and then see if you have a certain number of symptoms out of eleven criteria. Hope this helps.
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

BlackWolf
New Member


Date Joined Jun 2013
Total Posts : 3
   Posted 6/28/2013 1:49 AM (GMT -6)   
Thank you very much for your reply. I have already prepared the list, which like I said has literally 40 different things on it. I do need to put them in order though. I swear, when I read about Lupus it's like all the pieces of the puzzle came together and I saw the picture finally. I feel, deeply, that I have Lupus. I hope to God I'm wrong but in all honesty I don't believe I am. I'm worried the doctors will ignore me like they've always done, I really have no faith in them. I know that probably seems kind of rude but literally every Dr (besides my current one who I've only seen once in the past four years... I really RARELY go-to the Dr) I've ever seen have either tried to tell me I'm too young and it's in my head or just tell me to take Tylenol and deal with it. I begged one Dr in high school to help with my insomnia. She told me to quit partying all night and go to bed. Yeah. I told her what I thought of her, walked out and never went back. I wasn't partying. I had a part time job I got a week after I turned 16 and was working at least 30-40 hrs a week (yes, against child labor laws I know.) and still going to school. There were times I didn't sleep for 2 days at a time. I needed help and none was given, she didn't even try. This is only 1 of the multiple instances like this. Tylenol doesn't help, no matter how many I take. Neither does Ibuprofen, Aleve/Naproxen, Aspirin, Ultra, Tylenol 3, Lortab (5, 7.5, or 10). I've taken all those and the pain wasn't even dulled. The only thing that ever helped was when I had to have my tonsils removed, I was 17. They prescribed me Percocet 10 after I had to be hospitalized for dehydration. The Lortab liquid they prescribed didn't really help alot and I couldn't eat or drink and went to work and school the day after my surgery. Needless to say, after work and school for a few days and not eating or drinking I was in pretty bad shape. I'm sorry I ramble alot... My main point is how do I bring up the subject without seeming like a hypochondriac or seeming like I'm just in search of pain killers? The town I live in is like OVERRUN with drug addicts so I don't want my Dr to just assume I want drugs... I hope you guys can understand what I'm saying. I can't articulate things as good as I used to... My concentration and thoughts are 'broken' sometimes. It's really hard for me to even explain things anymore and I've almost developed a stutter... Those are other things that have been bothering me as well... I'm a mess :(

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1037
   Posted 6/28/2013 1:34 PM (GMT -6)   
Please do not take this the wrong way but if you split your post up into paragraphs more people will respond. One thing that I think is very important is to never ask a doctor for pain meds.

Tell them exactly what you have told me. "I have been suffering since I was x years old. No doctor has taken me seriously. Because of this I am apprehensive of going to the doctor. I am constantly in pain of suffering with several of these symptoms on this list. I have no quality of life. I can barely get out of bed. I am too young to feel way."

But don't make it like you are reading a script or they will think you are a drug seeker. Speak from the heart. Also if the first doctor does not help you go to another. Keep trying till you get help. ( I do not mean help as pain killers. I mean help as in tests to determine if you have Lupus). You are your own best advocate. One thing you can do if your insurance will allow and the doctor in your area allow is to call a Rhemi and make an appt.
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

BlackWolf
New Member


Date Joined Jun 2013
Total Posts : 3
   Posted 6/28/2013 5:34 PM (GMT -6)   
Lol! I would never directly ask for pain killers, I'd rather not take them anyways. I honestly don't care about pain killers as long as I get help. I've lived with the pain this long, it is getting worse, but I'm sure the pain won't kill me. I honestly didn't know I could call a Rheumatologist... I'll have to speak with my insurance company. I acquired and appointment for this coming Wednesday at 11 am. I'm praying she will take me seriously. Ended up crying myself to sleep, again, last night over my now GROSSLY enlarged lymphnodes. I can't even turn my head left, right, up, or down. I've had swollen glands before but never felt like this. They feel like bees are inside stinging me every second, I'm just so frustrated. Also, I'm writing from my cell phone so I do apologize for not having paragraphs, I'm doing the best I can. I don't have a computer, I have no use for one really. Thank you for all your help, I do have a little more confidence now. It's nice to have a little support lol!
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