I haven't gotten an official diagnosis yet, but it's looking like Lupus SLE [positive ANA, positive Double Strand DNA, high Rheumatoid factor]. I'm not in pain (except for my kidney) but I'm tired all the time and very stiff.
I'm married and have three kids - 16, 10, 9. My mother and grandmother are dead. I live far from where I grew up, far from what few family and friends I have. I'm scared and I feel more alone that I ever have. I keep telling myself to be strong, but it's so hard.
I'm holding on tightly to the hope that once I see the Rheumatologist and start medications, that I will have more energy and feel more normal.
I know how it feels to feel lost and alone. It’s a scary journey to reach a final diagnosis, and for me it took almost a year for the drs to take me seriously. Seeing a rheumatologist is what saved me. Through extensive blood work he then diagnosed me with SLE & Iv been on medication for about 9 months. The first month or so after treatment my body was having a hard time adjusting and I didn’t feel much better. My dr told me the medication I’m on (hydroxychloroquine) would take serval months to start working. It’s been a long journey with it’s ups and downs but I can honestly say that i don’t know where I’d be if it wasn’t for the medication. As time goes on you will be able to listen to your body to know what’s best for you. If you need rest/time out of work- take it. Overdoing it will cause more harm than good. Surround yourself with good people who will keep your spirits up in the meantime. I wish you the best of luck at the rheumatologist! God bless!!
Thank you for your support! I finally have an appointment with a Rheumatologist about six weeks from now.
My biggest problem is exhaustion - does the hydroxychloroquine help with that?
Any suggestions on how to make it through these last few weeks before it's official?
jennifer greene said:
I know how it feels to feel lost and alone. It's a scary journey to reach a final diagnosis, and for me it took almost a year for the drs to take me seriously. Seeing a rheumatologist is what saved me. Through extensive blood work he then diagnosed me with SLE & Iv been on medication for about 9 months. The first month or so after treatment my body was having a hard time adjusting and I didn't feel much better. My dr told me the medication I'm on (hydroxychloroquine) would take serval months to start working. It's been a long journey with it's ups and downs but I can honestly say that i don't know where I'd be if it wasn't for the medication. As time goes on you will be able to listen to your body to know what's best for you. If you need rest/time out of work- take it. Overdoing it will cause more harm than good. Surround yourself with good people who will keep your spirits up in the meantime. I wish you the best of luck at the rheumatologist! God bless!!
Hi, It does take 2 to 3 months for the plaquenil to start helping, and help with the fatigue. Other things you can do for the fatigue, is have your Vit D checked. I take 5,000 IU daily, and my Vit D was still low, its part of the lupus, and low D can increase your fatigue. Lupus is also dehydrating, so drinking water is important. This is something I struggle with myself.
Hi ladies, im new to the site but not to lupus, I thought I might be able to give some advice. To help with my fatigue I try to get as much rest as possible also like the other ladies suggested the vitamins will help a lot but rest is key to lupus and staying on top of your doctor’s appointments. Hope this helps, god bless you all.
Well welcome to the group!!! Once you figure out/get an official diagnosis and get on the appropriate medications, I think you'll begin to feel less scared. I know it took a little over a week for me to be diagnosed after ruling out other options, but I definitely felt a sense of some type of relief because then you know what you're dealing with, you can do more research on it, connect with others who also have the disease, etc. I'll be honest though, even with medications, you may feel better energy&normal-wise, but there will still be days when you'll feel down and out. You can be fine one day and completely opposite the next. You can try b-12 supplements & see if that helps with the energy. I think to feel alone is normal, as much as it sucks to say this. Even though I know that I have family and a couple of friends by my side, I still feel alone for whatever reason. Maybe it's because I actually have no friends or family with Lupus, that I actually feel alone because despite them trying to empathize, I'm not sure they will ever truly understand what I go through. But that's why I find this site to be amazing, because I can talk to others who can relate to me and have gone through these similar, if not the same, experiences. Hope you have a great day and best of luck with everything!
Welcome to the group...they are amazing people here to help and understand what you are going through. You can, vent, cry, ask for help and we all have been there and get it. Research as much as you can to know what you are dealing with. If you can, see if you have a local support group. We don't have one here anymore, but this one is great. But if you do have a local one, you'll make friends that are going thru the same thing. I met several people from the one years ago, and we still connect, and get together when we're able. It's nice to talk to someone, face to face. Good luck to you, and feel better.
Thank you for the advice. I take a multi-vitamin that has 1000 IU of D3 - is that the same?
Trisha said:
Hi, It does take 2 to 3 months for the plaquenil to start helping, and help with the fatigue. Other things you can do for the fatigue, is have your Vit D checked. I take 5,000 IU daily, and my Vit D was still low, its part of the lupus, and low D can increase your fatigue. Lupus is also dehydrating, so drinking water is important. This is something I struggle with myself.
Thank you for the advice. It seems like all I do is sleep these days! I'm taking vitamins and drinking lots of water. I still feel like a slug :-)
lupussuperwoman said:
Hi ladies, im new to the site but not to lupus, I thought I might be able to give some advice. To help with my fatigue I try to get as much rest as possible also like the other ladies suggested the vitamins will help a lot but rest is key to lupus and staying on top of your doctor's appointments. Hope this helps, god bless you all.
Thank you for sharing your experiences with me. It helps to hear that other people have the same problems that I do. I'm definately looking forward to that official diagnosis and with it, some sort of treatment options. Currently, I take a multi-vitamin that has 6mcg of B12 and a B Complex supplement that has 15mcg of B12. Is that enough to make a difference or should I increase the dosage?
lynn4545 said:
Well welcome to the group!!! Once you figure out/get an official diagnosis and get on the appropriate medications, I think you'll begin to feel less scared. I know it took a little over a week for me to be diagnosed after ruling out other options, but I definitely felt a sense of some type of relief because then you know what you're dealing with, you can do more research on it, connect with others who also have the disease, etc. I'll be honest though, even with medications, you may feel better energy&normal-wise, but there will still be days when you'll feel down and out. You can be fine one day and completely opposite the next. You can try b-12 supplements & see if that helps with the energy. I think to feel alone is normal, as much as it sucks to say this. Even though I know that I have family and a couple of friends by my side, I still feel alone for whatever reason. Maybe it's because I actually have no friends or family with Lupus, that I actually feel alone because despite them trying to empathize, I'm not sure they will ever truly understand what I go through. But that's why I find this site to be amazing, because I can talk to others who can relate to me and have gone through these similar, if not the same, experiences. Hope you have a great day and best of luck with everything!
My Vit D is D3, but mine is a higher dose. I planned on taking this temporarily to get my levels up, that has been 6 months at least. I just had it check a month ago, and I'm still low... Good advice is to have the blood work done, and then you have a baseline for your Vit D level and decide with your doctor if this is enough...
Idioskosmos said:
Thank you for the advice. I take a multi-vitamin that has 1000 IU of D3 - is that the same?
Trisha said:
Hi, It does take 2 to 3 months for the plaquenil to start helping, and help with the fatigue. Other things you can do for the fatigue, is have your Vit D checked. I take 5,000 IU daily, and my Vit D was still low, its part of the lupus, and low D can increase your fatigue. Lupus is also dehydrating, so drinking water is important. This is something I struggle with myself.
