CommunityMemberde9757 Member
This is a YouTube video I did on this subject. My channel is Rare Chef. I also have a podcast on their called Rare Connection. Their is both and audio and a visual version of the podcast.
https://www.youtube.com/watch?v=g8XBUssuB2k&t=177s
CommunityMemberde9757 Member
CommunityMemberde9757 Member
CommunityMember034ce6 Member
fleeting sensations: feeling like the skin is crawling, electric shock sensation, or twitching.
Jessica Hanson Moderator & Contributor
Gina Miller Moderator & Contributor
Thank you for your share. May I ask what rare disease you are dealing with?
Hugs,
Gina Miller
RareDisease.net
Team Member
CommunityMember990d59 Member
My daily struggle with fatigue and muscle weak ess has been an ongoing invisible struggle. Most people don't understand my disorder and frankly some people are unsympathetic to the problems in causes.
Jessica Hanson Moderator & Contributor
CommunityMemberebda6d Member
I would say that fatigue is the hardest part of my life and not being believed that I'm exhausted and in pain. I'm not lazy, I am just trying to survive. I had guillian barre syndrome and I have congestive heart failure. Nerve damage.
Gina Miller Moderator & Contributor
Thank you so much for sharing your personal experience of living with invisible illnesses. It sure takes a lot of self-compassion to deal with the judgements that can come our way!
Wishing you the best as you continue along your healthcare journey,
Gina Miller,
RareDisease.net Team Member