Small Fiber Neuropathy

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

Hi Dan @jhoops, welcome to Mayo Clinic Connect. Thank you for sharing. It definitely helps when we know we are not alone. I have idiopathic small fiber PN for over 20+ years and only bothered to get a diagnosis a couple of years ago. I am fortunate that I only have the numbness in my feet and a little above the ankles but do not have any pain.

Have you found any treatment that helps you? I don't have to take any medications because they don't have any to address numbness. If you see a post by a member and want to ask them a question just type their @membername and they will receive and email notification.

John

Liked by teetee7

Hi, John. Like John, I have had PN also for over 20 years. My symptoms have always included tingling and pain..It started in my right foot and then my left and now my hands. But it has been a fairly slow progression. I have had severe problems with my bladder and in the last two years my bowels. They have always called it neurogenic bladder and said there was nothing to help me surgically. For a long time, drugs like Detrol, oxybutynin worked quite well. But in recent years the problem has worsened. My current research indicates that PN can also affect the autonomic system and particularly mentioned was the bladder. I will discuss it with my neurologist and post what I find out. If you learn anything more about this, I would love to hear about it.

Peggy

@ronnieanderson

Hey Guys I have been diagnosed with small fiber neuropathy in September of 2016 foot and leg pain pins and needles! Also bladder and bowel pain! Also vision loss! The most annoying part is the bladder pain, feels like I have to irritate ever min and pins and needles all over my body and sharp stabbing pains in the abdomen area! I had Botox injected into my bladder in January 2017 and it helped with the pain and it now wearing off and I am having trouble voiding because the muscles are so relaxed from the Botox! So I am looking for advice! I have been to the Mayo they were no help! Please help any and a help is appreciated!

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@ronnieanderson I'm sorry to hear you're dealing with all these issues!

I'm assuming everyone here can relate to this, but prior to finding my current neurologist (first one was useless) who confirmed SFN with the skin punch biopsy, I felt like a pinball being bounced around specialists for all the different symptoms I was experiencing. Relating to your post, I had pain on voiding, incomplete voiding (it feels like urine remains stuck in my urethra [I've learned that placing pressure on my perineum, and gently moving my hand [continuing to apply pressure] in a wiping motion from back to front towards the underside of the base of my penis helps clear my urethra [basically like squeezing toothpaste from the bottom of a near empty tube]), urge to urinate multiple times during the night (I formally worked in a clean room which required scrubbing in like a surgeon, and dressing up in elaborate garb. To avoid having to keep scrubbing back in, I, and my co-workers would just hold it. I have never been woken up prior to this episode). These urinary tract symptoms arose from irritation due to ketamine (used for my treatment resistant depression and pain). I discontinued the treatment as some chronic users have had such severe interstitial cystitis that they've needed to have a kidney and even bladder removed (it's important to note that some symptoms went away like pain upon urinating and nocturnal urges, but incomplete voiding has stayed). I was referred to a urologist who sent me to a physical therapist who specialized in pelvic symptoms. I was diagnosed with pelvic floor dysfunction and was recommended to do kegels, diaphragmatic breathing for 10 minutes every hour, schedule times to urinate six times a day whether or not I had an urge, and to come back twice a week for PT. PT for pelvic floor dysfunction (and one method used to diagnose it), involved a digital rectal exam (finger, not electronic, haha). I also have myofascial pain syndromes which causes knots/trigger points throughout my body, so I can't say as to whether or not it's related to my SFN or not. Massage therapy helps me with my other knots, but the relief is fleeting, and I decided that I would prefer not to have a stranger's finger inside me twice a week if it wasn't completely necessary. A trip to a urologist, or different urologist for a second opinion or additional treatment options may help. The kegels (not just for women) and diaphragmatic breathing have definitely helped. Because of the level and widespread nature of my pain, it often gets to a level where it hurts to breathe, and as a result I make shallow breaths and it makes my tightened muscles worse. My muscles are so messed up that it took me quite a while to even be able to take a full breath in using only my diaphragm and not the intercostal muscles of my ribs, but the exercise has helped. As was likely explained to you, what tells your brain that you need to urinate are baroreceptors in the lining of the bladder, that as the bladder fills and stretches, triggers the baroreceptors to send a signal to your brain… urge to urinate. Many things can alter this response; drugs, a bladder improperly conditioned such as in a person whose bladder has shrunk from not drinking enough/a bladder that has grown from drinking a lot and not urinating when feeling an urge, and nerve damage/neuropathy like that in SFN. I receive Botox in my neck for migraines and cervical dystonia, but it sounds like it's taken a while for it to wear off in the muscles of your bladder (good for pain, bad for voiding). Of course talk to your doctor or get second opinions, but because of the way Botox works, it may be a bit of a waiting game. In the meantime, talk to your doctor about possibly trying a medication which can cause the smooth muscles of your bladder to contract, and discuss all your medications, supplements, and even food with your doctor and pharmacist. Medications with 'anticholinergic' effects (classes of antidepressants, opiates, and even over the counter antihistamines) cause urinary retention, as does a diet high in sodium and may be exacerbating your symptoms. Alcohol inhibits antidiuretic hormone (ADH, vasopressin), and is why alcoholic beverages cause you to urinate more than usual. Carbamazepine (Tegretol) which is used for neuropathic pain can cause antidiuretic effects as well. Diuretic medications which cause urination and supplements/foods containing cranberry juice/extract are natural diuretics (warning, cranberry juice interacts with some common medications so again, talk to you doctor and pharmacist). Diuretics may not be an option based on your level of hydration, state of your blood pressure, other upper and lower urinary tract symptoms, and other health considerations. When I first started having symptoms, I cut out alcohol, caffeine, spicy foods, and any foods/supplements with a diuretic effect or that were known urinary tract irritants. I still abstain, which is difficult considering I love spicy foods, sugar-free 16oz Monster energy drinks were my main method of treating my severe insomnia, and enjoying a cold beer or nice glass of bourbon or scotch while out with friends, winding down from work, or while watching sports was always enjoyable. It's one of the worse things those of us with SFN can consume though due to it's wide ranging effects from those urinary ones described above, effects on hormones, direct nerve damage, and by causing malabsorption of vitamins especially the B's (in fact, one of the major causes of SFN happens to be chronic alcoholism).

I know this is quite long, but I hope it gave you some ideas of some things you could talk to your doctors about and potentially find some relief! Best of luck and feel better!

I have been diagnosed with small fiber also 13 years ago and I have bowle problems from my meds and bladder from a different diagnosis.

Liked by teetee7

@steeldove

Diagnosed with SFN after a Sweat Test at Mayo in January 2017; took gabapentin even though it did nothing for the numbness in feet and calves but did help with sleep. July 2017 drove cross-county from Massachusetts to Missouri, but by December 2017 I had to stop driving completely as I had no feeling in my feet. Also during the 6-month period, numbness, pain, tingling, etc., spread up both legs and up to my waist. Now using a cane and waiting to have electronic hand controls installed on my car. Having a great deal of body awareness, I've been saying that there's something going on in my very, very arthritic, scoliotic spine. Wasted those 6 months waiting for an appointment with a neurologist at Wash U Medical School, thinking it was easier to get a friend to drive me to St. Louis than to Rochester. But that appointment turned out to be a total waste of time and money. Now working towards getting back up to Mayo (when I can drive there!) to see neurologist and spine specialists and see about a nerve biopsy and possible spinal conditions that could cause my symptoms.

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I was diagnosed 13 yrs ago and I have to be on prednisone the rest of my life along with gabapention. And pain meds. How do you deal with the pain???

Liked by teetee7

@jump

I was diagnosed 13 yrs ago and I have to be on prednisone the rest of my life along with gabapention. And pain meds. How do you deal with the pain???

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Hi @jump, Welcome to Mayo Clinic Connect. You mentioned you have to be on prednisone the rest of your life along with gabapentin and pain meds. I have small fiber peripheral neuropathy but I only have the numbness and there are no drugs that help with it. I take some over the counter supplements but it's not a cure and doesn't make the numbness go away. I do believe they may have slowed down the progression but it's subjective on my part. While I don't have pain with my neuropathy, I have had 2 occurrences of polymyalgia rheumatica (PMR) that were extremely painful and was on prednisone both times but was able to taper off once the PMR went into remission. I think each of us deal with pain a little different and a lot of members here have found different treatments that help.

You may want to read the following discussion and see how other members are dealing with the pain associated with neuropathy.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis and any other treatments you've tried?

Liked by Parus, teetee7

@johnbishop

Hi @jump, Welcome to Mayo Clinic Connect. You mentioned you have to be on prednisone the rest of your life along with gabapentin and pain meds. I have small fiber peripheral neuropathy but I only have the numbness and there are no drugs that help with it. I take some over the counter supplements but it's not a cure and doesn't make the numbness go away. I do believe they may have slowed down the progression but it's subjective on my part. While I don't have pain with my neuropathy, I have had 2 occurrences of polymyalgia rheumatica (PMR) that were extremely painful and was on prednisone both times but was able to taper off once the PMR went into remission. I think each of us deal with pain a little different and a lot of members here have found different treatments that help.

You may want to read the following discussion and see how other members are dealing with the pain associated with neuropathy.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis and any other treatments you've tried?

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I too have had PMR and treated successfully with prednisone. About a year after my PMR was corrected, I can down with neuropathy in my feet and calf’s with dropped foot and numbness and pain. I now wear a brace on m left and it it keeps me from tripping. I am back on prednisone but stopped taking gabapenton without any bad effects.

@jasont

My name is Jason and I have been diagnosed with ISFN. I am a 45 year old male and do not have diabetes. I wish I did not have ISFN but am looking for others to talk to about life. My feet hurt all day every day and have been tested for everything and all the rest come back good. My pain is in both hands and from my knees down to my feet with the bulk of the pain in my feet.

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Hi @jasont. Welcome to Mayo Clinic Connect. This is a great place to meet others and exchange stories, as well as reading information that is posted throughout the site.

I was diagnosed with severe SFN in 2015. (Also idiopathic). I am so sorry you are suffering with this pain. I can relate.

Are you seeing a Neurologist? Have you tried anything topical to try and alleviate your pain? Can you describe your pain – tingling, pains and needles, sharp, sunburn skin feeling, etc.? Do you have any numbness?

Please know that you are not alone. There are quite a few members who have this diagnosis and will chime in and offer support.

Best wishes for less pain over the weekend,

TeeTee

My name is Jason and I have been diagnosed with ISFN. I am a 45 year old male and do not have diabetes. I wish I did not have ISFN but am looking for others to talk to about life. My feet hurt all day every day and have been tested for everything and all the rest come back good. My pain is in both hands and from my knees down to my feet with the bulk of the pain in my feet.

@jasont

My name is Jason and I have been diagnosed with ISFN. I am a 45 year old male and do not have diabetes. I wish I did not have ISFN but am looking for others to talk to about life. My feet hurt all day every day and have been tested for everything and all the rest come back good. My pain is in both hands and from my knees down to my feet with the bulk of the pain in my feet.

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Hi, @jasont, and welcome to Mayo Clinic Connect. You'll note I've moved your post here and combined it with this existing discussion on small fiber neuropathy. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

How do you usually manage the pain in your feet with your daily activities, @jasont? Is there anything that provides some relief?

@teetee7

Hi @jasont. Welcome to Mayo Clinic Connect. This is a great place to meet others and exchange stories, as well as reading information that is posted throughout the site.

I was diagnosed with severe SFN in 2015. (Also idiopathic). I am so sorry you are suffering with this pain. I can relate.

Are you seeing a Neurologist? Have you tried anything topical to try and alleviate your pain? Can you describe your pain – tingling, pains and needles, sharp, sunburn skin feeling, etc.? Do you have any numbness?

Please know that you are not alone. There are quite a few members who have this diagnosis and will chime in and offer support.

Best wishes for less pain over the weekend,

TeeTee

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My pain is everything from burning to sharp lightning bolts to pins and needles to aching. my feet are around 75% numb and the numbness runs up the outside of each leg to my knee. My pain is always and it sucks. Thanks for your kind words and it is GREAT to know that i am not alone ( not that i want anyone else to have ISFN)

@jasont

My pain is everything from burning to sharp lightning bolts to pins and needles to aching. my feet are around 75% numb and the numbness runs up the outside of each leg to my knee. My pain is always and it sucks. Thanks for your kind words and it is GREAT to know that i am not alone ( not that i want anyone else to have ISFN)

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Oh boy, yes. What you have described is what I feel mostly in both hands and both forearms. I also have it in the same areas as you, but my hands and forearms are the worst with the SFN.

You definitely are not alone. And, yes, I wouldn't want anyone else to suffer with SFN.

Were you diagnosed via punch biopsies? Do you see a Neurologist? What are you doing for your pain? At first, topical ointments and lidoderm patches helped, in addition to Gabapentin. (I am so thankful Gabapentin agrees with me – I can't imagine life without it. It helps to take the edge off).

@jasont

My pain is everything from burning to sharp lightning bolts to pins and needles to aching. my feet are around 75% numb and the numbness runs up the outside of each leg to my knee. My pain is always and it sucks. Thanks for your kind words and it is GREAT to know that i am not alone ( not that i want anyone else to have ISFN)

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@lisalucier i take an opioide and Lyrica, which the combo of the two give me some relief, its not 100% but at least i can live life. i have tried some pain creams which also helped but for only 30 minutes or so. i just really wish my Doctors or anyone can tell me why i have this, it is so frustrating that they cant and that there is no cure.

@teetee7

Oh boy, yes. What you have described is what I feel mostly in both hands and both forearms. I also have it in the same areas as you, but my hands and forearms are the worst with the SFN.

You definitely are not alone. And, yes, I wouldn't want anyone else to suffer with SFN.

Were you diagnosed via punch biopsies? Do you see a Neurologist? What are you doing for your pain? At first, topical ointments and lidoderm patches helped, in addition to Gabapentin. (I am so thankful Gabapentin agrees with me – I can't imagine life without it. It helps to take the edge off).

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i was diagnosed from punch biopsy. i tried Gabapentin but it made me very angry and stopped, then they gave me the lyrica which does help some.

I am glad the Lyrica is helping a little bit. Were you suffering with this for a while, prior to your diagnosis? Have you had any injuries, or did this just start happening out of nowhere?

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