
Reply: Diagnosis
Hi, I'm 22 and I've been on Plaquenil / Hydroxychloroquin Sulfate for 7 years...
Posted by Lupussufferersince15
Hi, I'm 22 and I've been on Plaquenil / Hydroxychloroquin Sulfate for 7 years now it has gotten my lupus to a steady point where we can control it. I've been on pain meds for 7 years also, I started with Darvocet for 5 and then that was taken off the market due to it causing rapid heart rate. I quit it cold turkey no withdrawals or anything, all I used it for was to take the edge off the pain at night so I can sleep. Now I'm on Flexeril and Vicodin. I'd say try some lower dosed pain meds and see what works for you. If you need to take them daily like me, then do so and just follow up with your doctor.
Also the whole family thing, I was diagnosed at the age of 15 and last year or the year before my Grandma was diagnosed with Lupus. I believe strongly that there is a genetic link to this disease. Oh and when I started with symptoms all I had was joint pain so like tikitembo said not all of the symptoms need to be there to get checked.View Thread
Posted byLupussufferersince15
Also the whole family thing, I was diagnosed at the age of 15 and last year or the year before my Grandma was diagnosed with Lupus. I believe strongly that there is a genetic link to this disease. Oh and when I started with symptoms all I had was joint pain so like tikitembo said not all of the symptoms need to be there to get checked.View Thread
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Reply: Arthritis in feet??
I have problems with my feet a lot. It isn't as bad as yours sounds, but its...
Posted by Lupussufferersince15
I have problems with my feet a lot. It isn't as bad as yours sounds, but its mainly when I've been on my feet nonstop with no rest. I'm in college so I'm always on the go and it wears my body down. Maybe try a muscle rub like biofreeze on them some time it could help with some of the muscular pain.View Thread
Posted byLupussufferersince15
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Reply: Bumps on hands and random tendonitis
My rheumatologist told me that the bumps on my hands are from the rheumatoid...
Posted by Lupussufferersince15
My rheumatologist told me that the bumps on my hands are from the rheumatoid swelling that comes with lupus. And it will eventually go away on its own once my flare up is done.View Thread
Posted byLupussufferersince15
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Reply: How Do You Describe Your Pain?
Hi I'm 22 and I've been dealing with Lupus for 7 years now. When I'm...
Posted by Lupussufferersince15
Hi I'm 22 and I've been dealing with Lupus for 7 years now. When I'm describing my lupus I get the question what's it like. I stop and try to think, then I go on to explain that my joints swell and hurt. My body aches all the time, there isn't a minute of a day where I'm not in pain. People start to realize when they see me struggle to get up because my knees are acting up. I look like an 80 year old woman who's healthy but aged enough to where her joints don't work as well anymore. Or when I'm walking in a way that hopefully won't jar my body too much, they ask me if I'm okay.
There are many times I've said "Yeah I'm fine, I just feel like I got hit by a bus before I woke up this morning that's all. I'm just waiting for the pain meds to take a little bit of the edge off. I'll be okay." I get worried looks and find myself reassuring them that I truly will be okay. It seems to hit them all at once when they first realize a little bit of what its like. Afterwards though they'll help me get up from a sitting position if my knees are locking, they'll pick up the heavy stuff that I can't lift sometimes, they'll even open the water bottle that apparently was sealed by the Hulk.
I've read the spoon method now and I might use it sometime if the time presents itself. It's a very good visual way to describe it. Most people don't realize that I have Lupus until I tell them, apparently I hide the pain well. One day though I'll need the spoon method when someone doesn't comprehend my other ways of describing it.View Thread
Posted byLupussufferersince15
There are many times I've said "Yeah I'm fine, I just feel like I got hit by a bus before I woke up this morning that's all. I'm just waiting for the pain meds to take a little bit of the edge off. I'll be okay." I get worried looks and find myself reassuring them that I truly will be okay. It seems to hit them all at once when they first realize a little bit of what its like. Afterwards though they'll help me get up from a sitting position if my knees are locking, they'll pick up the heavy stuff that I can't lift sometimes, they'll even open the water bottle that apparently was sealed by the Hulk.
I've read the spoon method now and I might use it sometime if the time presents itself. It's a very good visual way to describe it. Most people don't realize that I have Lupus until I tell them, apparently I hide the pain well. One day though I'll need the spoon method when someone doesn't comprehend my other ways of describing it.View Thread
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Reply: Question for a Dr.
Thank You! I'll ask my Rheumatologist about it on Wednesday, to be sure that its not from the lupus and that it won't get worse.View Thread
Posted byLupussufferersince15
Thank You! I'll ask my Rheumatologist about it on Wednesday, to be sure that...
Posted by Lupussufferersince15
Thank You! I'll ask my Rheumatologist about it on Wednesday, to be sure that its not from the lupus and that it won't get worse.View Thread
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Reply: Bumps on hands and random tendonitis
I'm glad I could help a little. Just remember even if you are diagnosed with...
Posted by Lupussufferersince15
I'm glad I could help a little. Just remember even if you are diagnosed with lupus, there are medications to monitor it now. I hope you can get this figured out so maybe you can stop suffering.View Thread
Posted byLupussufferersince15
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Reply: Question for a Dr.
Thanks for the comments. I wasn't sure if it was just me or not. I'll make...
Posted by Lupussufferersince15
Thanks for the comments. I wasn't sure if it was just me or not. I'll make sure to bring it up at my next appointment later this month.
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Posted byLupussufferersince15
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Question for a Dr.
I just noticed that my toenails are kind of rippled. Could this be from my...
Posted by Lupussufferersince15
I just noticed that my toenails are kind of rippled. Could this be from my lupus? I'm in a mild flare up right now from the weather changing and stress. I just want to know in case I need to get it checked out further.View Thread
Posted byLupussufferersince15
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Reply: Bumps on hands and random tendonitis
I was 14 and I had injured one knee the year before and needed surgery....
Posted by Lupussufferersince15
I was 14 and I had injured one knee the year before and needed surgery. Everything was fine but then a year later a lot had gone on and it was a really stressful and emotional time for me. I started having all kinds of joint pain. They tested me for everything, lyme disease, arthritis, rheumatoid arthritis, lupus, everything under the sun.
It took more than one test to check for lupus for me to be diagnosed. They drew blood and only 2 out of the 4 tests came back positive at first, but the pain kept getting worse and spreading then I had the bloodwork done again and they found the lupus test positive that time. My numbers were crazy out of whack. I didn't even think about the bumps occurring during stressful times. I just had my finals and a death of a close family member so that could have triggered it to.
I take on alot and keep myself busy so that I live my life the way I want to instead of letting the lupus control me. Don't be too scared, there are treatments, I've been on different medications for 7 years now and my lupus has flares but we're controlling it.
Go see a rheumatologist and just tell them your symptoms, don't tell them you think its lupus, that way they can do all the tests in case it isn't lupus. There are so many conditions that are cousins to lupus and have similar symptoms that you don't want to risk a misdiagnosis.View Thread
Posted byLupussufferersince15
It took more than one test to check for lupus for me to be diagnosed. They drew blood and only 2 out of the 4 tests came back positive at first, but the pain kept getting worse and spreading then I had the bloodwork done again and they found the lupus test positive that time. My numbers were crazy out of whack. I didn't even think about the bumps occurring during stressful times. I just had my finals and a death of a close family member so that could have triggered it to.
I take on alot and keep myself busy so that I live my life the way I want to instead of letting the lupus control me. Don't be too scared, there are treatments, I've been on different medications for 7 years now and my lupus has flares but we're controlling it.
Go see a rheumatologist and just tell them your symptoms, don't tell them you think its lupus, that way they can do all the tests in case it isn't lupus. There are so many conditions that are cousins to lupus and have similar symptoms that you don't want to risk a misdiagnosis.View Thread
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Bumps on hands and random tendonitis
Hi Everyone, I'm new to this and don't really know how this will go. I've had...
Posted by Lupussufferersince15
Hi Everyone,
I'm new to this and don't really know how this will go. I've had Lupus since I was 15 and I'm now 22 I've never really had problems with rashes unless I was really stressed. But lately I've been getting these lumps on my fingers and they look like blisters, but they aren't fluid filled. The bumps are solid and hurt to touch. And they don't look like warts. I've noticed them on my hands a few times before but just recently I got a really big one on my big toe. And there are now more of them at one time on my fingers. I don't know what's causing it and what I can do to stop it. It seems to happen when I have flareups in my hands and now my feet but it isn't always timed like that. Does anyone have similar symptoms or know a treatment? Also I get tendonitis randomly I was told this was from my lupus but recently it hasn't gone away like it should and I don't know what to do. Its hard to explain to people why I can't straighten my finger because the tendon is locked up and its painful. Any tips for how I might be able to get rid of this?View Thread
Posted byLupussufferersince15
I'm new to this and don't really know how this will go. I've had Lupus since I was 15 and I'm now 22 I've never really had problems with rashes unless I was really stressed. But lately I've been getting these lumps on my fingers and they look like blisters, but they aren't fluid filled. The bumps are solid and hurt to touch. And they don't look like warts. I've noticed them on my hands a few times before but just recently I got a really big one on my big toe. And there are now more of them at one time on my fingers. I don't know what's causing it and what I can do to stop it. It seems to happen when I have flareups in my hands and now my feet but it isn't always timed like that. Does anyone have similar symptoms or know a treatment? Also I get tendonitis randomly I was told this was from my lupus but recently it hasn't gone away like it should and I don't know what to do. Its hard to explain to people why I can't straighten my finger because the tendon is locked up and its painful. Any tips for how I might be able to get rid of this?View Thread
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