I have Sjogren’s and small fiber neuropathy. I eat very healthy, don’t drink or smoke. I’m wondering how you can help heal my small fiber neuropathy? I have it on 90% of my body. Currently I am in debilitating pain and bedridden. Also, I am 5′ 9″ and weigh 130 pounds. Currently do an infusion every month called Benlysta, Cellcept and take pain medication as Lyrica or gabapentin did not work. All this started two years ago with four strokes in one week, had to get a stent put in my carotid artery. I’ve been hospitalized 27 times and in the ER 57 times in two years.
If you care so much, why is information only sold? Why is it not given freely? I was diagnosed with SFN nine years ago through skin punch biopsies, stating it was idiopathic. My life has spiraled downward ever since. I developed gastroparesis due to vagus nerve damage and was on feeding tubes into my intestines for two years. I have chronic uti’s and an inability to urinate adequately, for which I’m having surgery this week. I suffer chronic dry eye, dry mouth, and hypothyroidism. When I exercise, which I do so I’ll continu to be able to walk, increases my neuropathy because damaged nerves are trying to work. My balance has been affected, causing me to walk with cane or walker. I have many doctors who are treating all the above, but there is no collaboration among them.
I have Sjogren’s and small fiber neuropathy. I eat very healthy, don’t drink or smoke. I’m wondering how you can help heal my small fiber neuropathy? I have it on 90% of my body. Currently I am in debilitating pain and bedridden. Also, I am 5′ 9″ and weigh 130 pounds. Currently do an infusion every month called Benlysta, Cellcept and take pain medication as Lyrica or gabapentin did not work. All this started two years ago with four strokes in one week, had to get a stent put in my carotid artery. I’ve been hospitalized 27 times and in the ER 57 times in two years.
If you care so much, why is information only sold? Why is it not given freely? I was diagnosed with SFN nine years ago through skin punch biopsies, stating it was idiopathic. My life has spiraled downward ever since. I developed gastroparesis due to vagus nerve damage and was on feeding tubes into my intestines for two years. I have chronic uti’s and an inability to urinate adequately, for which I’m having surgery this week. I suffer chronic dry eye, dry mouth, and hypothyroidism. When I exercise, which I do so I’ll continu to be able to walk, increases my neuropathy because damaged nerves are trying to work. My balance has been affected, causing me to walk with cane or walker. I have many doctors who are treating all the above, but there is no collaboration among them.
Mine is idiopathic aa well.. sorry to.read this but you are not alone. I EXERCISE -too..but gosh wish there was a cure but keep believing.
I have idiopathic as well. Total nightmare!