I just saw a new neurologist that I really liked and was very kind! I was told that he does not see patients for sjogren’s disease or other autoimmune diseases but would see me for neuropathy issues. He believes very strongly that I have Small Fiber Neuropathy. I’m having many tests now. Does anyone else on this sight have this and might want to discuss it?
I so understand. I was trying to get into a different Doctor at mayo but haven’t been able to as yet. Mine retired at mayo leaving this month. Between my ileostomy issues completely prolapsed pelvic floor and sjogrens dryness everywhere, fatigue facing each day and weakness with walking and 4 to 5 hours of sleep is challenging.
I so understand. I was trying to get into a different Doctor at mayo but haven’t been able to as yet. Mine retired at mayo leaving this month. Between my ileostomy issues completely prolapsed pelvic floor and sjogrens dryness everywhere, fatigue facing each day and weakness with walking and 4 to 5 hours of sleep is challenging.
My doctor told me even if test were negative I still had it. Sending me to another neurologist in phoenix also recommended a book called Small Nerves Big Problems by Todd Levine and others.
I just saw a new neurologist that I really liked and was very kind! I was told that he does not see patients for sjogren’s disease or other autoimmune diseases but would see me for neuropathy issues. He believes very strongly that I have Small Fiber Neuropathy. I’m having many tests now. Does anyone else on this sight have this and might want to discuss it?
I too have SFN. I have had it for almost 50 years. It a long time to get a diagnosis that matched my symptoms. I’ve tried several antidepressants, gabapentin and Lyrica, with no changes in my symptoms. I take Alpha Lipoic Acid, and I’m not sure it helps. But it’s so helpful to have a diagnosis after 45 years of fear and anxiety from not know what I have. I’ve made some lifestyle adjustments; primarily around the amount of time I can spend on my feet each day. Being on my feet for more than 4 hours a day is very painful. Otherwise, I’m good.
May you figure this out and find a plan that works for you.
I too have SFN. I have had it for almost 50 years. It a long time to get a diagnosis that matched my symptoms. I’ve tried several antidepressants, gabapentin and Lyrica, with no changes in my symptoms. I take Alpha Lipoic Acid, and I’m not sure it helps. But it’s so helpful to have a diagnosis after 45 years of fear and anxiety from not know what I have. I’ve made some lifestyle adjustments; primarily around the amount of time I can spend on my feet each day. Being on my feet for more than 4 hours a day is very painful. Otherwise, I’m good.
May you figure this out and find a plan that works for you.
Thank you so very much. It is helpful to have a Doctor finally give you a diagnosis. I so appreciate your reply. Most of the meditation has not worked for me mostly because of my stomach or ostomy problems. I’m trying to except my new normal at 78 and the only way I can is completely rest and do nothing during the worst hours. Not sleeping at night doesn’t help but concern about safely of even taking a fourth of sleeping aid scares me. I get up many times because of my ostomy and poor bladder’s control. Thank you so much for the replies. .
Thank you so very much. It is helpful to have a Doctor finally give you a diagnosis. I so appreciate your reply. Most of the meditation has not worked for me mostly because of my stomach or ostomy problems. I’m trying to except my new normal at 78 and the only way I can is completely rest and do nothing during the worst hours. Not sleeping at night doesn’t help but concern about safely of even taking a fourth of sleeping aid scares me. I get up many times because of my ostomy and poor bladder’s control. Thank you so much for the replies. .
Sleep is a challenge, but it has been since my adolescence. I take Zolpidem. I have for 20+ years. The only problem I have with it is occasionally eating if I leave food out. So I don’t. I’m 72, and for the most part, I’m quite content.
Sleep is a challenge, but it has been since my adolescence. I take Zolpidem. I have for 20+ years. The only problem I have with it is occasionally eating if I leave food out. So I don’t. I’m 72, and for the most part, I’m quite content.
I just saw a new neurologist that I really liked and was very kind! I was told that he does not see patients for sjogren’s disease or other autoimmune diseases but would see me for neuropathy issues. He believes very strongly that I have Small Fiber Neuropathy. I’m having many tests now. Does anyone else on this sight have this and might want to discuss it?
@tiredoldman This statement is the only thing I could find on SFN and cold:
“The symptoms of small fiber sensory neuropathy are primarily sensory in nature and include unusual sensations such as pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations. Since SFSN usually does not involve large sensory fibers that convey”
This is from Johns Hopkins medical journal on neuropathy
Is this cold sensitivity something new for you? Have you spoken with your doctor about it?
I have small fiber neuropathy and when your nerves are damaged in your skin, your body’s sensations to hot, cold, touch, pain, etc. are altered (heightened sensitivities, lesser feeling/numbness, new painful reactions, etc.). Your body’s communication network from brain to spinal cord to peripheral nerves (including small fibers) is not working normally so you get different signals and reactions to things. Small fiber neuropathy can affect much more than just skin, too.
I just saw a new neurologist that I really liked and was very kind! I was told that he does not see patients for sjogren’s disease or other autoimmune diseases but would see me for neuropathy issues. He believes very strongly that I have Small Fiber Neuropathy. I’m having many tests now. Does anyone else on this sight have this and might want to discuss it?
I have several auto immune including high antibodies for Sjogrens. I was having weakness down my whole right side / dominant side. Kept telling rhuemy to no avail . Biopsy done of upper and lower leg which confirmed small fiber nueropathy. Also confirmed by Johns Hopkins
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I so understand. I was trying to get into a different Doctor at mayo but haven’t been able to as yet. Mine retired at mayo leaving this month. Between my ileostomy issues completely prolapsed pelvic floor and sjogrens dryness everywhere, fatigue facing each day and weakness with walking and 4 to 5 hours of sleep is challenging.
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1 ReactionMy doctor told me even if test were negative I still had it. Sending me to another neurologist in phoenix also recommended a book called Small Nerves Big Problems by Todd Levine and others.
-
Like -
Helpful -
Hug
1 ReactionI too have SFN. I have had it for almost 50 years. It a long time to get a diagnosis that matched my symptoms. I’ve tried several antidepressants, gabapentin and Lyrica, with no changes in my symptoms. I take Alpha Lipoic Acid, and I’m not sure it helps. But it’s so helpful to have a diagnosis after 45 years of fear and anxiety from not know what I have. I’ve made some lifestyle adjustments; primarily around the amount of time I can spend on my feet each day. Being on my feet for more than 4 hours a day is very painful. Otherwise, I’m good.
May you figure this out and find a plan that works for you.
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Helpful -
Hug
2 ReactionsThank you so very much. It is helpful to have a Doctor finally give you a diagnosis. I so appreciate your reply. Most of the meditation has not worked for me mostly because of my stomach or ostomy problems. I’m trying to except my new normal at 78 and the only way I can is completely rest and do nothing during the worst hours. Not sleeping at night doesn’t help but concern about safely of even taking a fourth of sleeping aid scares me. I get up many times because of my ostomy and poor bladder’s control. Thank you so much for the replies. .
-
Like -
Helpful -
Hug
1 ReactionSleep is a challenge, but it has been since my adolescence. I take Zolpidem. I have for 20+ years. The only problem I have with it is occasionally eating if I leave food out. So I don’t. I’m 72, and for the most part, I’m quite content.
I wish you the best.
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1 ReactionThank you for your response.
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1 ReactionDoes anyone know if Small Fiber Neuropathy can cause cold sensitivity in the legs?
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2 Reactions@tiredoldman This statement is the only thing I could find on SFN and cold:
“The symptoms of small fiber sensory neuropathy are primarily sensory in nature and include unusual sensations such as pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations. Since SFSN usually does not involve large sensory fibers that convey”
This is from Johns Hopkins medical journal on neuropathy
Is this cold sensitivity something new for you? Have you spoken with your doctor about it?
-
Like -
Helpful -
Hug
2 ReactionsI have small fiber neuropathy and when your nerves are damaged in your skin, your body’s sensations to hot, cold, touch, pain, etc. are altered (heightened sensitivities, lesser feeling/numbness, new painful reactions, etc.). Your body’s communication network from brain to spinal cord to peripheral nerves (including small fibers) is not working normally so you get different signals and reactions to things. Small fiber neuropathy can affect much more than just skin, too.
-
Like -
Helpful -
Hug
2 ReactionsI have several auto immune including high antibodies for Sjogrens. I was having weakness down my whole right side / dominant side. Kept telling rhuemy to no avail . Biopsy done of upper and lower leg which confirmed small fiber nueropathy. Also confirmed by Johns Hopkins
-
Like -
Helpful -
Hug
1 Reaction