Reply To: Tips for fluctuations

Thank you for the tips. I am really struggling with the unpredictability of the disease.

Walter I was wondering what curcuminoid supplement you use and the topical chinese oil? I have tried topical cbd products with minimal relieve. I think the brand that has worked the best so far for me is Charlottes web. Topical capsaicin to me feet seemed to make things worse.
I really wish I could get some sleep but I have two young children ages 5 and almost 2 and it has been really hard. I have been contemplating the cold showers but I was concerned about passing out due to my autonomic nervous system involvement. I think I may try this but work my way up slowly. It is interesting you mention exercise causing the disease to come on with vengeance. I was a runner before this disease and after my initial symptoms settled down and the dx was still unknown I ran a road race. Shortly after that I caught a mild cold and bam flared up and haven’t been the same since. At least with that flare up my neurologist promptly diagnosed me. I have been on ivig and then transitioned to sub q iv. Up and down on the prednisone and have tapered down. We have discussed additional treatments but with coronavirus we decided to hold off for now. Overall I am in a better place then I was last year when hospitalized, but nowhere back to who I was. Still hoping to get there some day, but also realize I may not. It has been hard letting go of who I was, but just trying to focus on what I can do instead of what I can’t