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ain, I had seizures/jerking sensations/fatigue and a crampy-achy feeling especially in my legs after one of these episodes. Who has this or something similar going on and can explain what the frosting IS GOING on, because doctors keep saying oh it's lupus or something but I would like to know why it's happening. My lupus is being used as the diagnostic trash can 😞 if you get what I mean
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Members rallied around someone experiencing dangerously low blood pressure, seizure-like episodes, and fatigue, frustrated that lupus was... Read more
I am so sorry you are going through hell with zero doctor support. It makes me want to go to your doc with you and make them listen AND hear you! Sending love, prayers, and healing vibes to you💜
I sure hate that!! I'm hoping you are feeling some better?! 🩷🦋
@A MyLupusTeam Member good idea. So many endocrine disorders can overlap lupus. Lupus related vasculitis can damage the adrenal glands. I had a full workup years ago but definitely am due to see an endocrinologist again. I have PCOS which is a metabolic disorder that came in my case with non-alcoholic fatty liver disease.
@NatashaDunkun this sounds a whole lot like my sister who has Addison's Disease. Please waste no time having your cortisole levels checked and other diagnostic criteria for Addison's. She lost a ton of weight and felt like this too her sodium and potassium was both out of wack. She is taking cortisol now and is controlled pretty well.
My youngest sister was diagnosed with Lupus a couple of decades ago, and people used to tell her that it was all in her head, and many believed that she was looking for attention. I now experience many of the symptoms that she was experiencing years ago, and already been diagnosed with Multiple Sclerosis, I never expected that I also had Lupus. I had always attributed the issues that I experience to Multiple Sclerosis, but today I know differently. I can empathize with those people who experience pain in their feet during the night. I woke up this morning with the sensation that my right foot was burning 🔥 😫. I haven't been prescribed any form of steroids yet, and I'm trying to avoid taking them. Several of the natural and "organic" remedies have been working for me, and I'm a firm believer in how they have helped me. My eldest son was given prednisone when he was very young and he had some severe reactions to using it. I know that they do help many people, and I'm not going to ever be judgmental about what works for them. If it works for you then please continue using them. I realize that the products that I'm taking now, won't work for just everyone. I only discovered this site earlier this week, and already I've learned so much from being a part of this group. Thanks to everyone who has contributed to this site.
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