View Full Version : Help!! I'm new

09-24-2006, 06:41 AM


I began to have symptoms last December when my fingers swelled and became very painful. I had been having mouth sores, joint pain, and fatigue for a while but the doctor I was seeing put it down to stress. I went to see a Rheumatologist with my fingers and he was very concerned when he found out I also had an elevated ANA, CRP, and ESR. On exam I also had Raynauds and Livedo. I have been on 400 mg of Plaquenil a day + Prednisone with only partial relief of my symptoms. Still have a lot of fatigue and pain. I've had my hip injected twice since April and my knee injected once. Luckily for me though I don't seem to have major organ involvement. My doc just upped my Plaquenil to 600 mg a day and is threatening to put me on Cellcept. I'm having a really hard time emotionally with all of this because I used to be really active and now I just can't be - I don't have the energy. I have 2 children aged 7 and 9 and I feel like I'm cheating them because when I get home I'm so fatigued. I have a very stressful job which I love and work about 50 hours a week out of necessity. My husband doesn't get it and thinks this is something which is easily fixed. All in all I'm just really scared!

09-24-2006, 10:47 AM
Hi Hooversomom :lol:
Most of us here truly understands your fears and your frustration. I know how debilitating the fatigue can be and how you can feel as if you are letting everyone down because you can no longer do those things that you once were able to do.
You are not alone, we have all been where you are. One of the best things that you can do for yourself and your husband is to become knowledgeable about this disease, its symptoms, its medication and its treatments.
First, Lupus is a chronic and life-long disease. Your husband needs to understand this. The disease can get better and some people even achieve remission (those are times when the disease is not active). But Lupus NEVER goes away. You will have good days and bad days. No one can predict when the good days will happen and no one can predict when the bad days will happen. One of the most common (and frustrating) features of Lupus is the relapse/remission syndrome.
There is no cure for Lupus, but there are medications and life style changes that you can make that will help you to manage the disease so that you can live a relatively normal life style. Some of the lifestyle changes include taking recuperative rest periods so that you do not aggravate the fatigue. You will need to avoid the sun, eat healthy and try to get some form of daily exercise. Mostly, you will have to portion out your activities and plan them very wisely. Instead of doing several things in one day, you may find that you can only do several things in a week.
There is a lot of information on the web to help you understand Lupus, there are also many good books that you, your husband and even your children can read so that everyone has a good understanding of your Lupus and how and why you must make the lifestyle changes that you are going to make in order to be as healthy as you can.
You can also always come here where someone will always be willing to answer your questions, offer you support and comfort and let you know that you are not alone.

I wish you the best
Peace and Blessings

09-24-2006, 03:31 PM
I can understand the stress of trying to work a high-stress job and still try to find time for your family - for years my kids spent about as much time at my job as I did - I was lucky to have on-site day care and as they got older I had a great family support system to help. But I can tell you something from my own experience - Wonderwoman didn't have lupus! The older the kids get, the harder it becomes to juggle their needs with your schedule. Sooner or later something has to give, and too often it's our health. As women we feel an obligation to care for and nurture our families, and it's hard to take time for our own needs. But you have to take care of yourself in order to be able to take care of others.

Maybe it would help to take your husband along on a doctors' visit, or attend a local support group meeting so he can lesarn more about the disease.

CLEAR Kendra
09-24-2006, 07:52 PM
I too can relate. My husband and especially his family had a very hard time understanding. They used to say things like we all feel bad sometimes you just have to push through it. It made me feel so alone and even question myself. I spent a lot of years thinking there was something wrong with me because I just couldn't "push through" the way others could. I have now realized there was something wrong with me but it wasn't in my head. They have since realized that it is not the same for me and they have all apologized for not understanding before. My husband has become the most amazing supportive person I could imagine. Sometimes it just takes some time and education.