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.
Omg Kim I was recently diagnosed with small fiber neuropathy and before the diagnosis my life has been a complete nightmare and still is. I’m disheartened to know that although you eat right (which Im working on now), that it hasn’t helped. For me its like a burning itching fiery sting of about 90% of my body. It started as an itch all over and when I get nervous, hot, angry, extremely happy( Laughing really hard) physically active or pretty much excited in any way. Its now hitting me in my sleep when I am dreaming. It affects me every single day whether it be mild or devastating. Been on Gabapentin and Lyrica but nothing helps but cooling gels bio freeze creams ice water and I use ice packs when I sleep. I truly understand where you are coming from. It took years for all the doctors I’ve seen to figure it out. I hope they find a way to help you because I wouldn’t wish this on my worst enemy.
Hi, I have also just been diagnosed with small fiber neuropathy and they did my final test was a test for Sjogrens disease where then cut into the inside of you inner lip and take out some tissue to analyze in the lab. The most common side of Sjogrens is dry mouth and dry eyes, that is a bit tell on this. If you do have it, there at least are some treatments for it, so that would provide hope. I you haven’t had this test maybe you should.
Same here as well. Getting really hard to walk sometimes. Feels like the bones are coming out the bottom of my feet. Started in one foot now in both feet and legs and to my waist. starting to get symptoms in my hands. Can’t seem to get pain meds. what does everyone do for pain? On top of this I have heart disease.
Idiopathic here also. 12 years in. Also have CRPS. Quality of life is not good. Would love to bounce ideas off of knowledgeable others. I’ve been through a lot – I’ve been to many places nation-wide… no one has answers … but I read A LOT in the literature, and I have several ideas…
Hello, is anyone still on this site. I’m suffering terribly with this . Both hands and both feet are 24/7 pain . What is helping, has anyone gotten better? I went 10 months with them telling me it was pinched nerves. I’ve had two shots on my neck, iv steroids. Gabapentin with terrible d at use affects. A new neurologists says I have small fiber poly neuropathy. It’s extremely painful. I feel no like this stole my life I don’t know how to live with this. My neurologist wants me to go to UCSD however can’t get a first consult until 9/28/. Welcome help suggestions
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.
I have terrible idiopathic SFN. I cannot go on much longer. Please help.
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.
Omg Kim I was recently diagnosed with small fiber neuropathy and before the diagnosis my life has been a complete nightmare and still is. I’m disheartened to know that although you eat right (which Im working on now), that it hasn’t helped. For me its like a burning itching fiery sting of about 90% of my body. It started as an itch all over and when I get nervous, hot, angry, extremely happy( Laughing really hard) physically active or pretty much excited in any way. Its now hitting me in my sleep when I am dreaming. It affects me every single day whether it be mild or devastating. Been on Gabapentin and Lyrica but nothing helps but cooling gels bio freeze creams ice water and I use ice packs when I sleep. I truly understand where you are coming from. It took years for all the doctors I’ve seen to figure it out. I hope they find a way to help you because I wouldn’t wish this on my worst enemy.
Hi, I have also just been diagnosed with small fiber neuropathy and they did my final test was a test for Sjogrens disease where then cut into the inside of you inner lip and take out some tissue to analyze in the lab. The most common side of Sjogrens is dry mouth and dry eyes, that is a bit tell on this. If you do have it, there at least are some treatments for it, so that would provide hope. I you haven’t had this test maybe you should.
I have idiopathic as well. Total nightmare!
Same here as well. Getting really hard to walk sometimes. Feels like the bones are coming out the bottom of my feet. Started in one foot now in both feet and legs and to my waist. starting to get symptoms in my hands. Can’t seem to get pain meds. what does everyone do for pain? On top of this I have heart disease.
Idiopathic here also. 12 years in. Also have CRPS. Quality of life is not good. Would love to bounce ideas off of knowledgeable others. I’ve been through a lot – I’ve been to many places nation-wide… no one has answers … but I read A LOT in the literature, and I have several ideas…
Hello, is anyone still on this site. I’m suffering terribly with this . Both hands and both feet are 24/7 pain .
What is helping, has anyone gotten better?
I went 10 months with them telling me it was pinched nerves. I’ve had two shots on my neck, iv steroids. Gabapentin with terrible d at use affects. A new neurologists says I have small fiber poly neuropathy. It’s extremely painful. I feel no like this stole my life I don’t know how to live with this. My neurologist wants me to go to UCSD however can’t get a first consult until 9/28/.
Welcome help suggestions