I'm new here, and am hoping this is the group for me :). I've been on a couple other Lupus boards but haven't really found the support or help.
I won't bore you with the milllion details that brought me to where I am, but long story short, my family doctor has diagnosed me with Lupus with the high positive ANA and the symptoms, but especially my history. She sent me to a rheumatologist who did the bevy of blood work and it came back with another even higher ANA, but negative DNA and my Lupus panel was 'satisfactory'.
When I went in, I was having horrible joint pain as I was out the entire weekend before with my kiddos who I can't keep out of the sun (I'm a single mother too). He started me on Neurontin for the joint pain and insomnia, but it only worked for the insomnia for the first few days. Now I'm dealing with a rash on both of my arms when I'm outside even for just a couple minutes getting into my car.
I'm keeping a journal of all my symptoms, as they seem to change every day. Once one get better, another comes on full force. I just don't want to be dismissed by my rheumy because of the negative blood work as I have by all the doctors in the past. Any advice? Sorry this is long.
Please don't be sorry you've explained and vented what's happening and want advice.
"Ann's" given you excellent advice already about protecting yourself and keeping covered up where the suns concerned and regarding picture's always the best as i do that and print them off before i go.
I have DLE refering the skin and i can only be in the shade 10mins in heat and a flare breaks out like you've had it, it sounds like when a flare as gone another is arriving usually you can get a small break from it....from a couple of days to 2wks is ok for a flare but if you ever stretch into 6wks or more then you need furthur treatment as it's turned into a chronic flare and can be more serious.
Regarding your insomnia, that can happen naturally or Lupus can cause it in patients...keep taking down notes and what your doing and hopefully you'll get either a med to suite your skin properly or something for both...your skin and joint pain.
Welcome momma! I am so glad u are here! This group will defnetly give u tip and support u all the way! I think u are very smart about keeping track of everything. Taking pic as ann said is also very helpful! Keep youself covert from the sun. Use skin sun block. After u go above 50 SPF the protection really doesn’t get any better no matter what the companies say. Also zink and titanium oxide sun blocks are very good and longer lasting then others. The price of the sunblock doesn’t matter. Cheep is just fine. Also there is a new thing called sun garde. U add it to your washer and it gives your clothes sun protection. U also want to watch for fluorescent lights. They hurt my eyes and give me headaches… Plz if u have any questions or need to vent don’t always cut it short. Trust me we post long blogs and storries all the time. And some responded are quite long in size!
Great advice ladies. Thank you. I try to rest when I can which is usually when my kiddos are asleep or resting. I have a 5 year old girl and 8 year old boy. I've been on the search for more maxi type dresses for the summer and a cute hat, but haven't found the hat yet :)
This board seems very supportive and that's exactly what I've been looking for. I look forward to getting to know you guys more. Take care and big hugs :)
You seem to be working in the right direction, having a rest when your children do because at their ages they're quite hypo.lol...I got my primmed hat from a sports shop so i dropped on.
Yes we all supoort one another well and that's what you need and it will be lovely getting to know you also Jenn.
Love Terri xxx
momma2mm said:
Great advice ladies. Thank you. I try to rest when I can which is usually when my kiddos are asleep or resting. I have a 5 year old girl and 8 year old boy. I've been on the search for more maxi type dresses for the summer and a cute hat, but haven't found the hat yet :)
This board seems very supportive and that's exactly what I've been looking for. I look forward to getting to know you guys more. Take care and big hugs :)