| Support groups are best. Knowing your not alone. A safe place to ask questions. Facebook groups are biggest and best. Reddit has a lot too. Various podcasts and foundations.
From these you start seeing patterns in what works for people, how to find doctors. For me. In order of improvement.
Prescription: plaqunial.
Blood thinners. Avoiding flare triggers, Sun, heat, most foods. Diet is huge.
Autoimmune protocol diet is best for me. Similar to keto, etc. Personally I’ll eat a lot of sweet potatoes when I need relief. Safest food I have found. Supplement: Vit D, magnesium, Vit E, fish oil, B complex, CQ-10 turmeric. Autoimmune often means a lot of secondary conditions, or autoimmune is the secondary. Increased cranial pressure is somewhat common with Sjogrens for example. High pressure is brutal on the mind and body. Went from bed ridden in horrific agony all day to kayaking or equivalent every weekend. |
I second the Anti-inflammatory diet and exercise (even just walking contributes greatly). I echo the supplement suggestions and also recommend glucosamine+chondroitin (which happens to lower all-cause mortality significantly).
Red meats (high omega 6 content), deeply fried foods, gluten (plenty of grain alternatives to wheat and corn), uncultured dairy (cheese seems ok, plenty of alt-milks out there), and sugar not from fruit can trigger inflammation for me. I might describe my diet as vegan+eggs+fish (ovo-pescaterian?)
There is a wealth of information online to tailor one's diet. Honestly - this is a diet that everyone can benefit from health wise.