I got diagnosed in June with Lupus.
I was put on Topamax for headaches and Plaquenil 400mg once a day.
I did very well till about 3weeks ago. Since then I has been very very frustrating. I am having pain, fatigue and constipation. My pain has esculated to the point that it hurts my muscles when I sit or lie down and my joints when I stand or walk. I feel like I need a nap by 10am and 2pm. I am a wife, mom of 2, work part-time night shift and in grad school. I have no time for extreme fatigue. My wonderful husband picks up a lot of slack and let’s me rest as much as possible.
I’m only 31yrs. I’m not ready to have to slow down my life.
Thanks for letting me vent. Any suggestions in how to deal???
Hi there. First off I wish I could give you a big hug! I can relate very much to how you are feeling, as I am going through a lot of the same symptoms. I too take Topamax for headaches, and Plaquenil. I started having a flare up 3 weeks ago as well. It's very frustrating!
It sounds like you are a go, go, go type of person and I am very sorry to hear how much this is affecting your life! It's hard for me to have good concrete suggestions as I'm dealing with a lot of the same stuff, but I can say that taking things one day at a time helps. I know that sound cliché but its so very true. And another thing is resting when you need to rest, and making sure that you really listen to your body. I know it's hard to rest, and it can feel frustrating to nap when you have so many things on your plate but it's so crucial with lupus to get sleep, and rest your body.
I think when we are first diagnosed with lupus, we go through a grief process (I was diagnosed over a year ago, and I'm still going through it). It's hard to accept that our lives will change, and we will have to change how we go about the everyday tasks, but it's important to. You have to give yourself time to accept the changes in lifestyle, and go through the emotional process.
Maybe you could look at the day to day things you have to do and see if any of them are things you could put off for now, while you are flaring? Maybe prioritize? Just a thought.
Sorry if I'm rambling and not being helpful. But my heart goes out to you, and big hugs! I'm here if you ever need to talk!
Liz
Yes , you are right it is a grief process. I am still trying to prioritize each day. It is for sure a learning process. THANK you for thoughts and kindness
Mandy.
lizzieg84 said:
Hi there. First off I wish I could give you a big hug! I can relate very much to how you are feeling, as I am going through a lot of the same symptoms. I too take Topamax for headaches, and Plaquenil. I started having a flare up 3 weeks ago as well. It’s very frustrating!
It sounds like you are a go, go, go type of person and I am very sorry to hear how much this is affecting your life! It’s hard for me to have good concrete suggestions as I’m dealing with a lot of the same stuff, but I can say that taking things one day at a time helps. I know that sound cliché but its so very true. And another thing is resting when you need to rest, and making sure that you really listen to your body. I know it’s hard to rest, and it can feel frustrating to nap when you have so many things on your plate but it’s so crucial with lupus to get sleep, and rest your body.
I think when we are first diagnosed with lupus, we go through a grief process (I was diagnosed over a year ago, and I’m still going through it). It’s hard to accept that our lives will change, and we will have to change how we go about the everyday tasks, but it’s important to. You have to give yourself time to accept the changes in lifestyle, and go through the emotional process.
Maybe you could look at the day to day things you have to do and see if any of them are things you could put off for now, while you are flaring? Maybe prioritize? Just a thought.
Sorry if I’m rambling and not being helpful. But my heart goes out to you, and big hugs! I’m here if you ever need to talk!
Liz
I weaned off topamax and now take excerdrin migraine I take ultram for pain. The topamax made me feel forgetful and confused. I have been suffering for about 5 yrs. I am now 41 and my symptoms are getting worse. I find if I get adequate sleep and rest I do better. Weather change has slowed me down lately. Good luck and stay positive.
Thank you so much for all your suggestions. Hearing others going through the same things gives me hope. I am really struggling right now.
Ann A. said:
This stuff might be helpful