I have never heard of such a condition as you mention here in this post. It must be a terribly numbing pain that weakens you, when it persists daily as you have said. I feel and understand what you are going through... And your fighting spirit is highly commendable and worth emulating at all levels. You are an inspiration to many who are dealing with various sorts of ailments, and are finding it difficult to cope, and on the verge of giving up hope. You bring a bright light to their dark despair, so never stop keeping on. Okay.
I want to leave you with a bright light of hope, that if you turn to this light, you will receive healing and full restoration of the body parts affected by this condition. This light i want you to embrace is Jesus Christ. Jesus heals, he restores... He does creative miracles, regenerative miracles, restoration miracles. He is a miracle working God. Believe in God, accept Jesus as your personal Lord and Saviour today, get the King James version of the Holy Bible, and read it everyday from Genesis to Revelation, and you will see the healing wonders Jesus will do in your life. Just Believe, with God nothing is impossible.
I also will be praying for you. It is well with you, in your Spirit, Body and Soul.
Thanks for your encouragement