View Full Version : I need some answers/help

06-07-2009, 06:08 PM
Im 16 (almost 17!) and for the past five months ive been in bed. unable to move, so unbelievably tired. about three weeks after this started i began to get such bad muscle pains, in my back and my calves. I couldnt stand up it was so severe. It was like i ran a marathon without any training, and then woke up the next day, to experience all that pain. It began to worsen. I gained weight, despite eating next to nothing (because iwas sleeping all day,) and being on a strict diet. later, i began to notice a migrane like headache, that wouldnt go away, even after taking all sorts of pain killers. Small Fevers were an every day ordeal. I have sharp pain in my knuckles, knees, and ankles, and it hurts to bend them. everyone of my joints aches.
Which brings me to my point. I am convinced i have lupus. my parents are skeptical. My mom thinks its all related to this disease ive had all my life which makes me faint. I dont believe taht at all. Why would something ive had ALL my life, sudden.....Continued

06-07-2009, 06:09 PM
...ly take a turn for the worse!
Since i had mono (when i was 14), ive noticed a bizarre sensitivity to the sun. If i have been out in the sun for more than an hour, i begin to get nauseous, and very tired. I am very pale, but nobody else i know that is pale like i am, has something like this.
I would like to get an opinion on this. Where should i go from here? I have appointments to go see a rheumatologist, but the information i need could take months, or even years. Im going away to the school of my dreams next year, and i want to not be hindered by this. I want to find out what i am suffering from, so i can begin treating, and feeling better. From what ive heard, lupus treatment is not always successful, but i belive, if i know what iam suffering from, that will be the first step to treatment.
Please can someone lend a hand, and tell me their opinion. Do you think lupus is a possibility? tell me your stories! it might give me some more hints. WHat do i do after seeing a rheumatologist? any hints to dull the pain/exhaustion?
Im willing for any help you have
Much love

06-07-2009, 07:13 PM
hi j marlor first thing i suggest you do is keep a record of all your symptoms to take to your rheumatologist, i spent 5 months in rehabilation last year i could not walk severe fatigue headaches and bad aches and pains was very sensitive to sun had weight gain because i was so inactive have always been larger but this made it worse. the only way they found out i had lupus was by having special blood tests and ruling everything else out ask your doctor to do the tests it cannot hurt at least you might get the answers you need.

06-07-2009, 11:46 PM
Hello. I am so sorry to hear that you have been feeling so bad. My main symptoms have been severe joint pain and fatigue. But these are symptoms of many diseases (including the autoimmune diseases of which lupus is one). It is good that you have made the appointment with the rheumatologist and if they are good they will run plenty of tests to make a diagnosis. But I will warn you that the diagnostic process can be tricky and takes time for some people. I myself do not have a definite diagnosis. But a good doctor should help treat to treat your symptoms even if they can't make a definite diagnosis. One of the best suggestions I have gotten here is to write down my symptoms and questions I want to ask the doctor so I don't get forgetful or intimidated. I would strongly suggest reading the sticky notes in the different forums as this may help answer some of your general questions. Good luck and I hope you feel better soon.

06-08-2009, 06:05 AM
I agree with Kim...make careful notes about your symptoms (not just the ones that are obvious...REALLY listen to your body), and SEE A RHEUMATOLOGIST. I started having Lupus symptoms when I was 16...and never saw a Rheumatologist until I was 30. Of course, it took him all of two weeks to figure out that I have Lupus and Rheumatoid Arthritis. HOWEVER...I had been tested for Lupus before with no luck. Sometimes it takes a while for things to show up. I'd all but gurantee that you have some sort of mixed connective tissue/autoimmune disease. See a rheumy sooner than later. I wish I would have!!

Best of luck and blessings to you...

06-08-2009, 06:34 AM
Hello Jess,

I'm Rob, and I was diagnosed with Systemic Lupus Five years ago. Many of your symptoms do indeed sound like the typical ones that many of us experience. I've always been sun-sensitive, but I started having flu-like symptoms after only a short exposure-around 15-30 minutes. I would run a low grade fever, get joint pain, all sorts of strange symptoms. I agree with the others-document your symptoms in a journal or notebook. Write down anything unusual. You are going to see a Rheumo-that's a good first step. Be assertive with the Rheumo and your Doctors, and don't be afraid to seek a second, even a third opinion.

One practical thing you do right now, is to minimize your sun exposure. It's cheap, easy, and certainly will do you no harm if it turns out you don't have Lupus. SPF 50 sunblock, a wide brimmed hat, and light long sleeves arre the way to go.

Have you tried taking any NSAID's for your pain? Much of what you are describing sounds like pain from inflammation. The OTC drug Aleve contains Naproxen which is a decent NSAID, I take it when needed, and it does help me with joint pain. You may want to try it if you have not already. If you try it, make sure it will not have any bad interactions with any meds you may already be taking-a good Pharmacist can help with that. NSAIDS can cause an upset stomach, so you need to be cautious of that as well.

Most importantly, be persistent and trust you own body and what it's telling you. If you think something is going on with you health-wise, trust your instincts and seek help for the problem. Don't let anyone suggest you are a hypochondriac. You have real problems, and you need real answers.

I certainly hope you do not have Lupus, but, if you do, know that there are many of us who live fulfilling lives, and thrive despite the disease. I hope you can find the answers you need. Welcome to our group.


06-08-2009, 11:22 PM
i'm sorry to hear that you are feeling so yucky. Most of my problems started very quickly and I was in the hosptial for 5 days. I couldn't move my hands or feet at all. When I tried to put any pressure on my feet or hands I would be screaming in pain. When I saw a Rhumy in the hospital she ran tests and that is how i found out about thie issues i have.

06-09-2009, 10:09 AM
hi jess,

you have already received great advice and sincere welcomes from some of our members. I just want to add that while making your list of symptoms, include any symptoms you have had in the past as well as any you are presently experiencing. Lupus symptoms are intermittent and are not always existent when we are actually in the drs. office.

Staying out of sun, taking NSAIDS are both ways to reduce symptoms, however, many members have changed their diets to eliminate any red meat. Also, get plenty of rest, fatigue is a huge obstacle to living with lupus, so make sure that sleep becomes a priority for you/

Yes, get into a rheumatologist ASAP....and please try to see one that is recommended by others, because there are some really depressing drs. out there who have zero compassion. You might want to check with your local lupus foundation chapter to see if there are rheumies that they suggest. Also, if you see the dr. and don't get good vibes, then try another.

As far as school plans....keep your dreams and go to school. If this is lupus, you will learn to live with it, and we will help you. Keep reaching for the stars.

06-11-2009, 02:00 PM
I was just always getting sick with one virus or another. Then a Dr. said I had the classic butterfly rash. I was in my early 20's then. I was unofficially diagnosed with lupus when I was around 31ish. My Dad has it. He was officially diagnosed back in the 1950's when few Drs. even knew what it was. So far, he has lived to be 90 years old and is still with us. I tell you this because a lot of people think that you can't live a long life, if you have lupus. It depends on the person and how the lupus affects them. It is a very individual disease, although fatique and joint pain are the main symptoms common to all of us. At times, the illness will flare though.

06-11-2009, 06:47 PM
Hi Jess
I am so sorry you feel so horrible, I don't have a Lupus Diagnoses yet, But I do have an RA diagnoses I have since 9/11, I can't add on much more then any of these fine folks have, except keep going to a Rhumy Doc until you feel comfortable, listened to and respected by this person make sure they listen to you if they don't keep looking for one who will. people with our type of diseases have to become pushy at times so remember we are always with and support you.
I hope you start feeling better soon.
Ginlyn :grouphug::thumbs-up: