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New to app and Lupus

Nov 05, 2014 7:43 PM

I just got diagnosed Friday. started meds that helped but made insomnia worse. Doc told me to half steroid dosage and pain is right back. Is this life now?!

Nov 06, 2014 2:05 AM

Welcome on board. There are many friendly people here to talk. We hope you enjoy your time with us.

Kind Regards,
CatchMyPain Support

Mar 21, 2015 11:35 AM

Hi folks that still might be out there..

Mar 21, 2015 12:58 PM

Lupus welcome to our group, there's a lot of compassionate people here who are going thru daily struggles with pain. We are here to listen and help each other as much as we can. You can vent , rant as much as you want and you won't offend us. Will keep you in my thoughts and prayers.

Mar 21, 2015 1:04 PM

DanS How is your day going ? My day has been dealing with a lot of pain in my shoulders, arms hands and fingers, back of head,neck all the way down to tailbone and across both hips thighs knees and burning bottom of feet. Other than that it's been a good day, I'm getting to spend time with one of my granddaughters which is always fun to do. Don't get to do that very ofton.

Mar 21, 2015 2:09 PM

Welcome to our group Lupus. You'll find only support here, no criticism, no judging you because you can't do what others think you can.

I don't have lupus that I know of. I just got started on thyroid meds for hypothyroidism. I have fibromyalgia, osteoarthritis and many other issues. They're trying to identify what's going on with my immunity; MS, Lyme's, Lupus category things. I finally get to see an endocrinologist next month. And if what I read is true, that she's an internal med as well, she may become my PCP. She is in a practice where they treat diabetes & metabolism also. You'll find many of us are having issues with our PCPs.

I'll be praying you get your treatment worked out. I'm sure its going to be an adjustment. Its my opinion that we are all going through grief, from who we were & what we use to be able to do, to what our health will allow us to be now. We all will be here for each other for the up & down days.

Dan, I hope you're doing well. Haven't heard from you much. 🙏🌼

Mar 21, 2015 5:13 PM

Flappsy that's great about the endocrinologist I hope she will listen to all of your problems. Get you on some good meds to help control everything.

Mar 21, 2015 9:28 PM

Hey FlappsyLady, you mentioned you just started thyroid meds... I'm on Levothyroxin or Synthroid if you will. I wad diagnosed 15 years ago with Grave's Disease and they took my thyroid. I'm on 200mcg of Synthroid every day and it took them almost 2 years to regulate my levels so I could function. After they took my thyroid, I was falling asleep everywhere at the drop of a hat. It was frightening, I couldn't stay awake. At one point, right before I stopped working (almost 10 years ago) I fell asleep at the wheel coming home from work and crashed head on into someone who was waiting to pull into their driveway... The saving grace was that she was stopped so we were not seriously injured. I know when my levels are off, all kinds of things go wrong. My anxiety is uncontrollable, I have hot flashes and chills and then I'll be sweating and freezing at the same time, I get the shakes from nerves, I shiver, cry and I also get depressed and agitated. I hope you're not having any of these issues. If you are, know that when you're leveled out, the symptoms will stop. Just thought I'd pass that information on to you.

Mar 23, 2015 7:31 AM

AlwayZ, I do have some of those symptoms. I've had thyroid symptoms for years but it wasn't until other doctors started saying the thyroid abnormalities that showed on a myelogram & ultrasound & blood test that my PCP started me on levothyroxine. He commented, "But I still don't think you have it (hypothyroidism)." When I mentioned how frustrated I was about his attitude to the psych doc he said something must be going on with the other doc because that's not like him, then he stated, "With what I'm seeing on these tests & blood work, and your symptoms, giving you a pill isn't enough. You should be under an endocrinologist because its likely you have something else going on too." He referred me, thank God!

Lupus, I hope you had a good weekend adjusting to your meds. I wish I knew more about how my husband's cousin copes with it so I could pass her ideas along to you. She's had lupus for over 20 years. Have a blessed day! 🙏🌼

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