Lupus help!

Hi bigsanfer and welcome. I'm so sorry to hear that you have been so sick and that your doctors are telling you that you have lupus. All of that can be a lot to take in and try to deal with. I have to say that I think mono was the beginning of most of my health problems too. First of all, I give you so much credit for trying to walk and stay in shape through all of this - it's really hard to exersize when you are in a lot of pain and have fatigue. Just a word of caution though - listen to your body and don't push too hard. I had to learn this the hard way. If you are having a pretty good day and you want to walk at a brisk pace, then go ahead, but if you are not feeling well and want to walk, take it at a more gentle pace, otherwise you risk going into a flare where you can't exersize at all. I used to be a runner and ran a lot of races just for fun, but I loved it. After getting lupus symptoms I was able to jog some, but eventually had to give it up. Now that I'm finally on a good combination of meds and am feeling a little better I'm trying to exersize again by just doing some light walking, but if I push too hard I will have a major setback. Having this disease at any age is hard, but I'm really sorry that you are having to deal with it at such a young age when all you should be doing is enjoying your life and doing the normal teenage things. A lot of us here have talked about how we go through a lot of grieving when we get sick because so many things in our lives change and a lot of us have had to give up some things we enjoy, so I think some sadness and some anger are pretty normal. There is hope though - hope to feel better, hope for remission, and hope that you will find new things you enjoy. One question I have about your meds is your plaquenil dose. Most of us are on 400mg of plaquenil and wouldn't do well at less. Sometimes people who are very small and don't weigh much have to be on lower doses, so that might be why you are only on 200mg. Your doctor probably has a reason to have you at 200mg, but it might be worth asking him/her about it. Also, were you told thatn it can take a while for the plaquenil to build up in your system. Sometimes it can take six months or more before you start to notice it working. Has your doc ever talked to you about any anti inflammatories or any other meds for the pain you are having? Hang in there - all of this can be overwhelming at first. This forum is a great place full of wonderful and supportive people. Please ask any questions you have and know that we are here for you whenever you are going through a rough time. Take care

Hi bigsanfer . . . welcome to the forum! There is a great saying about pain caused by inflammation . . . . Attack it! Don't chase it. In other words . . . if you wait till its bad, the naproxin/advil/ibuprofen . . . whatever . . . will not work as well. Sometimes you need to take anti-inflammatories 3-4 times a day to stay "ahead" of the pain. When you control the inflammation, you have a way better chance of controlling the pain. But . . . as always . . . make sure you have your Dr. 's permission. Blessings!

Hi,

It's especially difficult at the beginning of treatment because the docs are trying to find the right "cocktail" of meds. A lot of trial and error and lots of aches and pains in between. I'm so sorry you are going thru this at such a young age.. but on the flip side, getting a handle on it now may
prevent more problems down the line.

Sounds like you are doing all the right things.. keep moving as much as you can without tiring yourself out. Do remember sun protection since we are heading into Summer now. Sun exposure can cause flares as well. Be sure to mention ANY new symptoms as they can relate to your meds, or not having a handle on disease.

Take care..

Ti