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I found out about 2.5 weeks ago that I’m in stage 3 kidney failure. I have never had a drink/drug, or smoked. 98% positive I have lupus, not fibromyalgia. I am also certain it’s in my brain. I have the off balance, headache, vision issues, exhausted, oversleeping, insomnia, clumsily moving around self.
I’m extremely scared because I’m 44, I have an 18 year, a 6 year old, and a 7 year old. I know nothing about lupus. Is there anyone who could take some time?
Thank you
Sorry about your kidneys. That's the one thing that really scared me when I was first diagnosed but after 40 yrs so far lupus hasn't messed with my kidneys. As for your other symptom, I have that. They did a nerve test and that was good. Sent me to a neurologist who specializes in movement disorders. He determined I have myoclonus & put me on Clonazapam because I am allergic to the other meds. I totally understand how awful this is. Even on Clonazapam that doesn't stop the cramps & jerking. It makes better but still its horrible when it happens. With me it happens all over my body. Mostly in my arms & legs though. I can happen any time day or night. If it were RLS it would only happen at night & it would not involve any other part of your body, from what I've read. I got one of those massage guns & when it starts up I use that on whatever is cramping or jerking. That does help. No offense meant, but it is so nice to hear someone else with the same problem.
Welcome @A MyLupusTeam Member. First I want to say that I am sorry that lupus is attacking your organs. Sadly, it is common among many of us. Secondly, stage 3 lupus nephritis is NOT kidney failure. It means that your kidney function is moderately declining. To share some hope with you, I can tell you that I have lived with my kidney function being stable at stage 3b for several years. With treatment, it is currently down to stage 3. Discuss your concerns with your doctors. You and your nephrologist will decide together what treatment is best for you to help keep your condition under control. As for your other issues, stay on top of your rheumatologist to refer you to the appropriate specialists to treat them. Take someone with you to your appointments to help you advocate for yourself.
You have us now to help you navigate this new journey. We have all been where you are and understand your fears and concerns for yourself and your family. I am adding you to my team to keep in touch with you. I will gladly answer your questions. We have a wonderful group of caring and understanding friends here for you to connect with. Please don't hesitate to reach out to any of us to support you through this crazy unpredictable thing called lupus. I am sending you a virtual hug right now.
I'm sorry to hear about your diagnosis and the challenges you're facing. Here are some key points from my knowledge base that might help:
- Lupus Nephritis and Kidney Disease: Lupus can affect the kidneys, leading to lupus nephritis. This can progress to chronic kidney disease (CKD) and, in severe cases, end-stage renal Show Full Answer
I'm so sorry for what you're going through! I don't have kidney failure but I have RLS and know how miserable that is. Several things that help me with that is taking iron, magnesium and potassium, also rubbing my legs with lavender and frankincense essential oils as well as a magnesium lotion kinda takes the edge off. Praying for you!
I hope you find a doctor that works I just dropped my family doctor cause he said I was getting complicit and lazy knowing I have lupus, he said that when I asked him about my weight gain
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