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I Was Diagnosed With Lupus Around 2.5 Months Ago. I Am Suffering More Now Than I Was When I Was Diagnosed. Why?

I Was Diagnosed With Lupus Around 2.5 Months Ago. I Am Suffering More Now Than I Was When I Was Diagnosed. Why?

It has gone from my shoulders and knees to also my elbows, my hips, my wrists, ankles and my feet. I hurt 24 x 7. Help! Please!

posted November 26, 2022
A MyLupusTeam Member

I was diagnosed with SLE 40+ years ago when I was 30. I followed Rheumatologists’s advice for 30 years taking big pharma meds to mask symptoms. I kept getting more meds to treat side effects of then current “flavor of the month” meds. In 2008, after 27 years on big pharma meds I began a downward spiral in organ function (less than 25% across the board) that ended at me being two-week terminal stage-IV SLE, April 2011. I stopped big pharma meds and chose experimental therapy with telomerase positive stem cells instead. I have been in remission for 11+ years. This occurred after 29 transplants, 9 of those from donors. My organs are now functioning at about 70%. I changed diet to anti-inflammatory, added anti-inflammatory foods, herbs, spices, supplements; removed triggers for inflammation; added walking to my routine; taking high dose histamines to prevent lupus flares (that are induced with systemic histamine release), and currently taking CN-SP to maintain stasis.

posted November 26, 2022
A MyLupusTeam Member

@A MyLupusTeam Member, this happened to me too. My husband couldn't understand and used to ask me "why are you in such a bad state now, if before the flare you were fine?". I could only say "I don't know."
But the reality is that we are only diagnosed with lupus after we have a flare up big enough that it screws with our immune system completely. So after this big diagnoseable flare up, be sure, your body will not go back to normal. And it may get worse and worse until you find a treatment that balances your immune system.
The objective now is not get back to normal, but to reach remission. Remission is very good, but it doesn't normally mean completely flare-free.
Hope this helps you.
Big hug and love.

posted November 26, 2022 (edited)
A MyLupusTeam Member

Odds are you would have hit this new rough spot even without the diagnosis.
I’m another that can tell you that eating healthy will have a big positive impact. You may still need some meds but likely fewer. With a healthy eating plan you’re giving your body the building blocks it needs. It will greatly reduce inflammation then meds/supplements will take it further.

posted November 26, 2022 (edited)
A MyLupusTeam Member

Unless you change your current lifestyle, including removing triggers and switching to an anti-inflammatory diet, your symptoms will only get worse. Big pharma meds only mask the symptoms and have nasty side effects in their own right.

posted November 26, 2022
A MyLupusTeam Member

I was diagnosed with Lupus in 2000. You have good days and you have bad days. The bad days are lupus flares, when you feel worse. Then too, you may be diagnosed with other crippling illnesses like myself. I have Lupus, Fibromyalgia, and Sciatica. By far, for me, sciatica is the worst because it is nerve pain that radiates from the lower back down one leg or both legs. Talk about pain....I either wind up at the pain clinic or the emergency room. In regards to Lupus, it causes me to be extremely fatigued and it causes a lot of joint pain in my neck, shoulders, back, hands, knees, and ankles. You will feel so bad, and then you will feel better, thus called a flare. Once your rheumatologist gets your medicine in the right dose, you should get some relief.

posted November 26, 2022

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