My name is Mercedes and I was erroneously diagnosed with "Severe Depression" when I was 13 years old. I spent five years taking antidepressants, benzodiazepines, barbiturates, antiepileptic pharmaceuticals… well, a bunch of harsh meds that didn’t do me any good. I have battled with joint and bone pain since I was a toddler, and started to feel very fatigued as a teen. I was then correctly diagnosed with Lupus when I turned 18 years old (for some reason, doctors never asked me to get some blood work during those hellish five years). My lupus is quite uncommon (doctors tell me), because it affects my brain (Central Nervous System) before any other organs. This is why I have so many psychiatric-like symptoms. I had anorexia a couple years back, and although I am better today, I still struggle with making poor food choices. I try to keep a healthy life, but any advice and help I can get will always be truly appreciated because I occasionally feel quite lost and powerless.
Thank you for taking the time to share your thoughts. (:
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MerB90
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Gosh Mercedes, it sound terrible to have had to go through all this!
But the brain is an amazing organ. When people have nightmares, they experience physical effects on the body: youtube.com/watch?v=cLqjK3d...
So as part of healing, maybe you can benefits by training your brain too...into releasing the right hormones (natural happy drugs lol) to help heal you from inside. God Willing.
The research on properties of water also indicates that talking to water makes it behave differently, since our bodies are made up of water, this may help too, but the catch is, you have to mean every word of it and say it aloud!
Brain food: Walnuts? I love them, have some every time I feel I cannot think fast.
Dear Rubina, thank your for this! I agree, the brain is incredibly powerful. I'll try to drink more water (everyone tells me I should, but I'm just not too good at following that rule), and walnuts are delicious, I'll make sure to incorporate them into my diet (:
I'm sorry but there is no research for this. Even Dr Emoto admitted the experiment he did was flawed as he only presented photos he found the most impressive or striking. This is a myth which keeps getting perpetuated. Yes, water is good for us and we don't drink enough of it. No, a glass of happy water isn't going to cure you 🙄
SLE hit my Kidneys and joints first - Stock standard path - but I didn't have much outward signs of illness when I when my SLE started - age nine - no rash - no redness or swelling of the joints. (Diagnosed at 15) Now 49.
I've had some neuro involvement over the years, and recently found out that damaged peripheral nerves can cause your stomach not to work as well as it should. 'gastroparesis' I recently had a delayed gastric emptying test to see whether this was going on with me.
The symptoms are very similar to anorexia. With me it felt really unpleasant to eat - I'd feel faint and foggy headed after eating- bit of refux - just nasty. Didn't want to go near food so I could continue to think strait.
A gastro Doc told me certain foods can make the actions of the stomach slow down with gastroparesis. especially sugars & carbohydrates. Stick to mostly white meats too.
Possible you should ask your Doc about this one ?
I'm taking Creon to help with the digestion. (Digestive enzymes in a pill)
X
ps. One of the best ways to grow new neurons is to learn new stuff. Neuroplasticity is at its most effective when you do this.
I didn't know of gastroparesis. I don't usually feel faint after eating, but I have definitely felt foggy headed after eating, especially after eating sugary foods. I will ask my rheumy about this condition, and if I might have it, because to be honest, I often have a super bloated stomach, even if I don't eat too much and is making me miserable.
Thank you for sharing your journey with me and I do hope you're feeling better!
xx,
M
Man. That’s another new symptom. Never knew it could affect the brain like that. Food is hard for me anyhow. Nothing sounds good. I’m 6 ft tall and got down to 159. I’m pretty vain so depression kicked In over my appearance. I love this site because I see I’m not abalone.
I see this post is a few months old, but I wanted to say hi, as I also have CNS Lupus, which like you, was told was pretty rare. And, like you, spent much of my adolescence and early adulthood being treated for depression, anxiety, and an eating disorder (anorexia like you). At ~23 I was diagnosed with temporal lobe epilepsy. I can’t even remember how many different medications I’ve been on over the years…
However, when I was young, the only other symptoms I had was joint pain and skin lesions. So, like you, they never ran any comprehensive tests and TBH, I doubt anyone back then would have thought it an autoimmune problem.
Throughout my 20s and now into my late 30s, more symptoms appeared, but it wasn’t until about 3 years ago when it all came together (and fell apart a the same time!). I guess I was very lucky in that it didn’t strike me until now, but I am still wrestling with a whole host of symptoms and trying to figure out what I can do to make it better.
What I really want to convey in my reply is that I completely understand where you’re coming from. Having your brain and central nervous system attacked and out of whack can be really debilitating. As can living a post-eating disorder life with an autoimmune disorder. I can’t even put into words how much it messes with my head some days.
As for the sugar thing - if you can avoid it, do as much as possible. It messes with the gut and the brain. I have found that too much can really make many symptoms worse. As for the brain, you probably already know that a low sugar/carb diet is best for management.
I wish you well on your journey and feel free to DM any time
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Recently Diagnosed with SLE and looking for help.
Does Lupus improve over time or get worse? 
Professional with Lupus?
If your on Hyroxychloroquine read what i found out on Lupus UK
