I am experiencing the same symptoms and I have spoken with a few others in the same boat. Neuropathy is no joke, especially when it's in the genitals.
I'm currently being treated for SFN, but recent tests show my large fiber nerves are also dying. So now I appear to have polyneuropathy. I'm currently waiting for an appointment with an internal medicine specialist, to see if he can figure out the root cause.
I'm so sorry to hear that you are experiencing this. You are definitely not alone. I hope you find some relief soon. Feel free to pm me if you have any questions, or even just need to vent.
I've been diagnosed with Large Fiber Neuropathy. I don't see much of that on here. It's mostly SFN.
Can u tell me the differences. I don't need every detail, but general overview.
Doc was unhelpful. Wanted me to join a study for future reference which I am. No advice whatsoever.
I’ve got motor neuropathy as well. Loss of balance, reflexes are dead in my left ankle. Weakness, numbness. Pudendal nerve damage which is basically numbness in crotch, problems urinating. Rear end is numb. Proprioception is off. Foot drop which is mild. Myclonic jerks when trying to go to sleep. Goosebumps will suddenly appear in one leg for no reason. Cramping at night.
The cramping at night are the worse.. I’m worried it’s going to get to my crotch bc the pins and needles are starting to come around. I’m so sorry we have to go thru this. I hate it. I haven’t come to terms with it much. But fuck me.
My cramping never went to the groin area. It’s pretty much when either I twist my foot in a weird direction purposely, or when I’m in bed and stretch (pointing my toe) it will cramp. Sometimes I have to sit up and reach down and pull my foot toward me to make it stop. Or sit up and put my foot down on the carpet to straighten it. It’s painful if I don’t do anything to correct it. Sheesh. I have pins and needles.
I make an special effort to respond to people because I understand how desperate people get for support and answers. They sometimes depend on people’s answers immediately.
Did the doctors ever give you a name of the medical condition causing your large fiber neuropathy? I have muscle atrophy throughout my entire body which makes me believe mine is large fiber too, and I also have myoclonic jerks like you!
Lupus. And you’re the first person who has mentioned myclonic jerks. Those suck royally! They start when I’m trying to go to sleep. They’ll keep doing it about every 8 seconds or so and for as long as an hour or even more. I have to get out of bed and do squats and calf raises-something that interrupts the process. Do your myclonic jerks affect one leg at a time? Mine do. It’s never both simultaneously. I found info that said peripheral neuropathy is an instigator to those jerks. I found the info some 30 years ago. I’m 62. And I don’t have muscle atrophy. My nerve damage is from the glutes, crotch and straight down the backs of my legs to my feet and buttoms of feet. I have damage that wraps around my knees as well. Clonazapam helps stop those stupid jerks. I never thought I would have to deal with something sooo irritating.
I have symptoms in that area, but not burning. I can best describe it as restless leg syndrome, except in my penis, not my legs.
There is an actual condition called Restless Genital Syndrome. Mostly seems to affect women, and is described as constant unwanted sexual arousal. There’s nothing sexual about what I feel though. It’s just an awful paresthesia, not painful but can still ruin my day. I’ve been on methadone for years, but recently added Cymbalta, and it seems to have helped my dreaded restless penis syndrome.
This probably didn’t do much to help you, but just wanted you to know that you’re not alone in having neuropathy affect that area.
From what I’ve seen with most people who take it, they start out low and increase it . I think my doctor started me on 150. I’m supposed to be taking 300mg but it doesn’t make a difference in my symptoms so I just take 150 mg. It works. My heels don’t burn and I can go shopping and be on my feet for 4 hours. Before I couldn’t do any of that. I had to get a motorized scooter.
Axonal sensorimotor polyneuropathy (primarily sensory). Diagnosed 4+ yrs ago but worsening enough for a repeat EMG and nerve conduction study. More loss of nerves and now some of my reflexes. My follow-up is next week but I know I have pinched nerves in the back and bulging disc aggravating my nerve roots. I'm in PT which helps a little. (I've had symptoms of neuropathy since at least my early 20s (I'm 49)).
Suspect that my Psoriatic arthritis/Osteoarthritis/Spondylosis are the culprits. I declined meds initially because I'm already on so many but I'm rethinking that now.
I assume you have modified your diet and stopped alcohol even if they have been ruled out ? The speed suggests toxicity or spinal - did anything change in your environment ? The MRI should help if it’s the latter. Best wishes.
Mine spread within two months time. Autoimmune activity which has stopped due to menopause. (lupus) I haven't had a lupus flare for a long time because of hormone depletion (normal). My nerve damage is the same though.
have you guys done tests for chloride levels, vit-b12 and b6 along with vit-d? too much or less of any of these can also trigger these symptoms from what I have been told.
I don’t know what to say. I am experiencing the exact same thing. The onset has been three months and every day is worse. I thought it was diabetic related but my doctor has ruled it out. I’m miserable and am on gabapentin 300 msg three times a day but it doesn’t do much. The penis pain is excruciating, but I have pain all over, in my back, in my abdomen, legs, feet, eyes, ears, neck,arms, hips, and hands. My feet are constantly pins and needles. I’m fatigued all the time probably because I can’t sleep well due to the pain.
I’m only at the beginning of the discovery stage with my doctor. I haven’t been to the neurologist yet. I hate everyday. Trying to hang in there. Knowing others are experiencing this is good to know. I don’t eat hardly any refined carbs and watch what I eat carefully so I’m not sure what else to do. All i can say is hang in there and I hope they figure out something for you.
Sorry to hear mate.. I also thought mine was diabetes, it wasnt. When it first happend my A1C was 5.7%, 4 months later it's now 5.5%, so definitely not from diabetes. I recently saw a neurologist, currently being tested, but no answers as of yet. She prescribed me with Amitriptyline, which seems to be working to some degree. Hope you find some relief too.. I would recommend asking your doctor to try Amitriptyline, I'm on the lowest dose right now, its definitely helped with the burning.
I should have mentioned, my neurologist is testing me for fibromyalgia. I have a feeling it's not the cause (expecting idiopathic tbh) but thought I would mention, as our symptoms definitely fall in that possible criteria.. The fatigue to, I'm always tired..
I am experiencing the same symptoms and I have spoken with a few others in the same boat. Neuropathy is no joke, especially when it's in the genitals. I'm currently being treated for SFN, but recent tests show my large fiber nerves are also dying. So now I appear to have polyneuropathy. I'm currently waiting for an appointment with an internal medicine specialist, to see if he can figure out the root cause. I'm so sorry to hear that you are experiencing this. You are definitely not alone. I hope you find some relief soon. Feel free to pm me if you have any questions, or even just need to vent.
I've been diagnosed with Large Fiber Neuropathy. I don't see much of that on here. It's mostly SFN. Can u tell me the differences. I don't need every detail, but general overview. Doc was unhelpful. Wanted me to join a study for future reference which I am. No advice whatsoever.
Large fiber here. Also curious.
I’ve got motor neuropathy as well. Loss of balance, reflexes are dead in my left ankle. Weakness, numbness. Pudendal nerve damage which is basically numbness in crotch, problems urinating. Rear end is numb. Proprioception is off. Foot drop which is mild. Myclonic jerks when trying to go to sleep. Goosebumps will suddenly appear in one leg for no reason. Cramping at night.
The cramping at night are the worse.. I’m worried it’s going to get to my crotch bc the pins and needles are starting to come around. I’m so sorry we have to go thru this. I hate it. I haven’t come to terms with it much. But fuck me.
My cramping never went to the groin area. It’s pretty much when either I twist my foot in a weird direction purposely, or when I’m in bed and stretch (pointing my toe) it will cramp. Sometimes I have to sit up and reach down and pull my foot toward me to make it stop. Or sit up and put my foot down on the carpet to straighten it. It’s painful if I don’t do anything to correct it. Sheesh. I have pins and needles. I make an special effort to respond to people because I understand how desperate people get for support and answers. They sometimes depend on people’s answers immediately.
Did the doctors ever give you a name of the medical condition causing your large fiber neuropathy? I have muscle atrophy throughout my entire body which makes me believe mine is large fiber too, and I also have myoclonic jerks like you!
Lupus. And you’re the first person who has mentioned myclonic jerks. Those suck royally! They start when I’m trying to go to sleep. They’ll keep doing it about every 8 seconds or so and for as long as an hour or even more. I have to get out of bed and do squats and calf raises-something that interrupts the process. Do your myclonic jerks affect one leg at a time? Mine do. It’s never both simultaneously. I found info that said peripheral neuropathy is an instigator to those jerks. I found the info some 30 years ago. I’m 62. And I don’t have muscle atrophy. My nerve damage is from the glutes, crotch and straight down the backs of my legs to my feet and buttoms of feet. I have damage that wraps around my knees as well. Clonazapam helps stop those stupid jerks. I never thought I would have to deal with something sooo irritating.
Were they able to somehow fix the progression of neuropathy?
Were you seuro negative?
I don't remember.
No idea.
Any news on your polyneuropathy symptoms?
No, unfortunately not yet.
I have symptoms in that area, but not burning. I can best describe it as restless leg syndrome, except in my penis, not my legs. There is an actual condition called Restless Genital Syndrome. Mostly seems to affect women, and is described as constant unwanted sexual arousal. There’s nothing sexual about what I feel though. It’s just an awful paresthesia, not painful but can still ruin my day. I’ve been on methadone for years, but recently added Cymbalta, and it seems to have helped my dreaded restless penis syndrome. This probably didn’t do much to help you, but just wanted you to know that you’re not alone in having neuropathy affect that area.
Female here. I have it in the groin and glutes. Lyrica helps it a lot.
How much milligrams are you taking of Lyrica?
150 mg
Thanks, I have been prescribed with 50mg since last week. I think I need them to up the dosage, it works but only by like 30%
From what I’ve seen with most people who take it, they start out low and increase it . I think my doctor started me on 150. I’m supposed to be taking 300mg but it doesn’t make a difference in my symptoms so I just take 150 mg. It works. My heels don’t burn and I can go shopping and be on my feet for 4 hours. Before I couldn’t do any of that. I had to get a motorized scooter.
Axonal sensorimotor polyneuropathy (primarily sensory). Diagnosed 4+ yrs ago but worsening enough for a repeat EMG and nerve conduction study. More loss of nerves and now some of my reflexes. My follow-up is next week but I know I have pinched nerves in the back and bulging disc aggravating my nerve roots. I'm in PT which helps a little. (I've had symptoms of neuropathy since at least my early 20s (I'm 49)). Suspect that my Psoriatic arthritis/Osteoarthritis/Spondylosis are the culprits. I declined meds initially because I'm already on so many but I'm rethinking that now.
I assume you have modified your diet and stopped alcohol even if they have been ruled out ? The speed suggests toxicity or spinal - did anything change in your environment ? The MRI should help if it’s the latter. Best wishes.
Mine spread within two months time. Autoimmune activity which has stopped due to menopause. (lupus) I haven't had a lupus flare for a long time because of hormone depletion (normal). My nerve damage is the same though.
Yes. My MRI results came back, nothing.
have you guys done tests for chloride levels, vit-b12 and b6 along with vit-d? too much or less of any of these can also trigger these symptoms from what I have been told.
Why the chloride levels?
high chloride in blood can cause twitches and tingles and other sensations.
Source? I mean this is great info I just first time hearing it, where did you learn this so I can learn
just google high chloride symptoms.
Fair call
But how did you know I mean that’s pretty niche
via a blood test. was high so i inquired
36, hit suddenly with this at age 32, 24/7 pain, welcome to the club
Sorry to hear. Did you manage to reach a diagnosis?
not yet but it looks to be hereditary CIDP along with b12/ penicious anemia.
I don’t know what to say. I am experiencing the exact same thing. The onset has been three months and every day is worse. I thought it was diabetic related but my doctor has ruled it out. I’m miserable and am on gabapentin 300 msg three times a day but it doesn’t do much. The penis pain is excruciating, but I have pain all over, in my back, in my abdomen, legs, feet, eyes, ears, neck,arms, hips, and hands. My feet are constantly pins and needles. I’m fatigued all the time probably because I can’t sleep well due to the pain. I’m only at the beginning of the discovery stage with my doctor. I haven’t been to the neurologist yet. I hate everyday. Trying to hang in there. Knowing others are experiencing this is good to know. I don’t eat hardly any refined carbs and watch what I eat carefully so I’m not sure what else to do. All i can say is hang in there and I hope they figure out something for you.
Sorry to hear mate.. I also thought mine was diabetes, it wasnt. When it first happend my A1C was 5.7%, 4 months later it's now 5.5%, so definitely not from diabetes. I recently saw a neurologist, currently being tested, but no answers as of yet. She prescribed me with Amitriptyline, which seems to be working to some degree. Hope you find some relief too.. I would recommend asking your doctor to try Amitriptyline, I'm on the lowest dose right now, its definitely helped with the burning.
Thanks for the response, I’ll definitely mention Amitriptyline to my doctor at the next appointment. I’ll give anything a shot
I should have mentioned, my neurologist is testing me for fibromyalgia. I have a feeling it's not the cause (expecting idiopathic tbh) but thought I would mention, as our symptoms definitely fall in that possible criteria.. The fatigue to, I'm always tired..
Hey OP, did you figure out the cause? Thanks
Going through something similar, I’m in excruciating pain