Lupus Forum - Seventeen In a Seventy-year Old's Body? Erg...advice?

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Q: Seventeen In a Seventy-year Old's Body? Erg...advice?

asked by: milanka on June 3rd, 2006

New User

Hey... I feel awful for bothering you all, but I need some...Advice? Or something like that.

I'm seventeen years old, and i've been ill for the past few years, but it has only been unbearable recently. I have terrible joint pain, just this awful...Sharp aching? I don't know how to describe it, but it's all over my body and all seems to hit me at once. When this happens it feels like I have the flu- i'm feverish, completely foggy, and I just generally feel ill. I usually get a rash, but that's probably from fever? It's raised and hive-like, but not really itchy at all. I've had canker sores and nose sores since I was a kid so I don't think that's useful diagnostic criteria for me. I just can't stand this anymore. I'm so tired, you know? The aching is so intense and the swelling and discolouration is embarrassing. Sometimes I can barely walk because my hip hurts so much and I had to use a cane last summer because the pain in my hip and foot of one leg made it difficult to walk. I'm also always sick. I was hospitalized with pneumonia (awful!) and it seemed to spark another episode.

My pattern seems to be 1: feel slightly ill. 2: wake up tired. 3: sometime that day get hit by a really bizarre flu thing, feel faint, etc. 4: wake up with terrible joint pain and swelling. Does this make sense to anyone???

(if it's noteworthy at all, it was my mum's cane (she has ms) but that isn't something that would be passed on anyway.)

i'm asking you fine people because I know you probably had to deal with the difficulties of diagnosis and apathetic doctors. Every time I see my doc he hems and haws and tells me my bloodwork was normal, everything they tested for was negative or too low to be important and there's nothing to be worried about. He put me on naproxen just recently and it doesn't seem to make much difference at all. He said if the naproxen doen't help by the time the prescription runs out then he'll give me something else, and if that doesn't help he'll refer me to a rheumatologist.

I mean, something isn't right here...I don't know what it is, but i'm seventeen- I shouldn't have trouble opening drinks or holding a pen or having to go to bed at eight in the evening because i'm so tired, right? I'm beginning to think my doctor is useless, but it's impossible to find another in this town... I don't know what to do if the naproxen doesn't make it all better. This is so confusing.

I really, really appreciate any replies or advice.

Replies(8)

momkat

replied on June 6th, 2006

New User

Re: Seventten In a Seventy-year Old's Body?

Hey...I know exactly how you feel. I'm 17 as well and I have had all the same things as you. It sucks I know. You really need to push your doctor to sending you to a rheumatologist. This past november I couldn't take the symptoms anymore either. My rheumatologist did a bunch of test and found out that I have a disease called systemic lupus and lupus nephritis. If you have any more questions or just want to chat sometime about it just send me back a reply.

22inNEPA

replied on June 18th, 2006

New User

You're Not the Only One ...

If it makes you feel any better, i'm going through somewhat of the same situation. Although i'm 22. I had an awful rash all over my face, arms, legs and chest so I went to the dermatologist. She then ran a blood test to rule out lupus. My bloodtest came back showing that I had an elevated level of ana, this was late may, just about the time that I started getting awful, aching joints. To the point where I didn't even want to wake up in the morning because my shoulders hurt so bad. She recommended that I see a rheumatologist, which I did this past friday. He seems great and I really think that he's going to get down to the cause of this. My rash is gone, although I also haven't been in as much sunlight as I had been before. So that could be why. But anway the rhuematologist is running 13 different blood tests to check for things such as lupus, sjogren's, hepatitis c and many others ... I recommend that you see a rhuematologist as well.

Petiesperson

replied on June 18th, 2006

New User

Yeppers thats exactly how I felt when my lupus was active. Thankfully I have been in remission for two yrs.

Pay close attention to your nutrition. Cut out all processed foods, soda, artificial sweeteners. Don't use a microwave.....Microwaves destroy nutrients. You need all the nutrients you can get from your food. Get as much rest as you can. Eat whole foods.....Lots of fresh veggies and fruits......If you like meat try chicken, turkey and fish......Cut way back on red meat.

Hang in there......I know its tough......{{{hugs}}}

pam murphy,b.S.,rrt

rowdy161

replied on June 25th, 2006

New User

Seventten In a Seventy-year Old's Body?

I am a 45 year old male living in australia, I was diagnosed with sle when I was 19, it took 3 years for somebody to diagnose it. I could not work at all, lifting a plastic tea spoon was too hard, and walking was almost out of the question. I lost 22 kilograms in 4 weeks, and my parents were told to get to the hospital I was in by the end of the week, as the doctors did not think I would survive past the end of the week. I was filled full of every drug known to mankind, and had mega doses of prednisone every day. After feeling that I could not and did not want to go on living, if this was all life had to offer, and contemplated taking my own life, I realised that I had been to hell already and that life could only get better. I stopped taking all medication, and fought through the constant pain, I gradually forced myself to start walking a little more each day and trying to gradually build up my strength. My biggest help was my mum ( god bless her )
i returned to work about 18 months later, and have not had any symptons since I was approximately 24 years old.
I have been left with severe liver damage and renal problems, but these are nothing compared to the pain I went through with my lupus.

Petiesperson

replied on June 26th, 2006

New User

Ooooooohhhh I have to say. Though nutrition and supplementing with glyconutritionals helped me immensely and I thank god every day for the two years i've been in remission....No one should stop taking their medications willy nilly......

As my nutrition-status improved I worked with my docs to gradually titrate myself off my meds. If you have a good doc ....He/she will work with you in this way. If not find yourself a new doc!

Wishing you wellness and joy,
pam murphy,b.S.,rrt
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dax

replied on July 21st, 2006

New User

It most definitely sucks to be feeling unhealthy at a young age. I'm 23, male, and I was diagnosed with lupus last year, and i've probably seen the doctor more times this past year than the last 10 years combined. And it's not like I was unhealthy before. I always ate healthy and stayed very fit, I was a reservist in the military. But the saying goes, **** happens.

Naproxen is just pain killer. Like advil advanced. Doctors are somewhat hesitant to put you on corticosteroids. They want to be absolutely sure that is the right decision.

I remember I went through extreme exhaustion. Somedays I would sleep for almost 15hrs in a day, almost consecutively. My pillow would be full of hair when I woke up. And for a brief period, I would always seem to have a constant fever. Nothing huge, but my forehead definitely was warmer, and stayed warmer, than usual. I also had this constant pain in my left abdomen for like 3 weeks. I thought my spleen was rupturing or something. And yes, the joint pains.

The joint pains. I initially thought it was my just getting carpal tunnel (i'm a computer science student). While it was primarily in my fingers and wrists, I did get pains in my knees too. But looking back, it definitely was part of the bigger picture.

I still believe the best medicine is within yourself. Be as healthy as possible. Try to eat whole grain instead of flour. More fruits and veggies, less meat. Less microwave, more cooking. Less oil. Try to sleep earlier. They say your body's melatonin is higher earlier in the night, which promote healing. Milk... I dunno... I've stopped drinking milk and moved to organic soy. But there can be a whole discussion about whether if milk is good or bad for you. Up to you on this one.

And of course, exercise. I know it's tough. I remember when I first got out of the hospital, I was physically unable to do a single situp or pushup. I would also get constant headaches for staying in a vertical position for too long.

Well this thread is a couple months old. But do try to push the doctor's. Only you know your body. I had raynaud's phenomena for the longest time and only until I pushed hard enough so he would do every single possible blood test which resulted in him sending me to a rheumatologist. (this was before I experienced the things in the above paragraphs though)

sillylupie

replied on July 30th, 2006

New User

Female, 29yrs old, diagnosed with sle about 3 yrs ago, had a serious flare early this year, was hospitalised in icu for 3 days, quite alone in a foreign country. It only makes me appreciate life even more.

Don't despair my friend, I know it sux to have all the joint pains, fever and feeling malasie all the time. Worst still, if you have to handle office politics! Stress can trigger flare, in my case, alcohol too. Also, do not ignore any symptons (like fever, dizziness, blurred vision, feeling cold!!), seek medical attention immediately! In my case, I was ill for three weeks (seen the doc twice, antibiotic did not help), all I wanted to do was sleep, hoping to feel better the next time I wake up! I missed work several days, and finally I took a taxi to a hospital (in thailand), told the doc that I am sick, feeling so very cold, shivering, and guess what? My blood pressure was down to 40/60 (something like that), my white blood cells count was down to a critical level (something like 0.7), I was admitted to the ward immediately! I really felt like I was going 'somewhere' else!
Anyway, I survived...

That was my very first lupus flare!!

Yes, painkiller has become my sort of my daily 'supplement'. I have tried everything from panadols, neurofen, naproxen, mobic, bextra, ... All for the reason of being able to go to work! My predicament in life! And trust me, office politics is only adding stress to this mad mad world of mine!

So, milanka, I hope you read this and be strong!!! (i am still trying to be stronger!!!!)

with love, sillylupie

SarahRL11986

replied on September 15th, 2006

New User

Yea, i'm 19 years old and you should go see a rheumatologist as soon as you can. Otherwise if your regular doctor does any blood tests on you have her/him check your thyroid and you ana levels, because I had thyroid problems and a really high ana and then I got recommended to a rheumatologist because of those 2 things and my severe joint pain that was so bad sometimes I couldn't even undress myself, I couldn't unbutton my own jeans, or pull of a sweatshirt on my own. But the rheumatologist didn't get the lupus right away because it was never truely active for the 1st 2 years I was seeing her, but she always watched for it because she couldn't figure out why I was always feeling like crap and the joint pain and everything, and finally when the lupus did flare, she caught it, in more then enough time.

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