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Small Fiber Neuropathy: What helps?

Neuropathy | Last Active: May 17 2:03pm | Replies (284)

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@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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Replies to "Hey Guys I have been diagnosed with small fiber neuropathy in September of 2016 foot and..."

Hello @ronnieanderson -- Welcome to Connect. I have small fiber peripheral neuropathy which mostly effects my feet and a little above my ankles. I only have numbness with my PN, no pain so I'm fortunate that way. You might want to read through the following discussion for others with similar bladder symptoms:

Groups > Brain & Nervous System > Small Fiber Neuropathy
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

I'm tagging the following members have posted similar symptoms to yours and mentioned bladder problems -- @lisadog33, @brie87144, @steeldove and @changegonnacome, do you have any suggestions for @ronnieanderson?

John

Ronnie, hello. Botox does wear off after about 6 months (my mom had the same injections). There might be another reason for trouble voiding. You are also describing pins and needles pain all over your body. I had those same pains and symptoms from cervical stenosis. Having spinal cord compression in your neck can cause the same symptoms as it happened to me, a having spine surgery at Mayo, fixed all of that. If no one explored the possibility of a spine issue for you, that might be another place to look particularly if you have had a whiplash in your past that could have damaged your spine. Trouble voiding would be the earlier stages and incontinence would be later stages if it is caused by spinal cord compression. You could also have an un-diagnosed spine problem at lower levels that could be a contributor. Have they checked for diabetes?

@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!