Very long post! All I ask is that if you’re going to participate in the discussion, please keep it on topic to SFN and read the whole thing!
My story with PFS is like many here, except for one key difference - I have a diagnosis of non-length dependent (equally distributed) idiopathic (they don’t have a cause) small-fiber neuropathy.
I took the drug for 7 weeks in 2018, from Mar 15 to May 7. Within just a few weeks I experienced a significant testicular atrophy. Somehow I didn’t think much of this and continued taking the drug, assuming that if it was this obvious, it must be a common side effect. My doctor assured me it would return. Around week 6 I started to be bothered that there was no change. I also noticed my penis was perpetually in a ‘non-aroused’, sort of shrunken state. This was all weird enough for me and I quit the drug the next week.
Around 6 weeks later, I noticed a bizarre feeling of numbness on my stomach and face. This persisted, and slowly worsened. I felt it extend across my body, arms, down the tip of my nose, etc. All at once it felt like the sensuality was disappearing from my touch. I could still feel light touch, but it had no emotional resonance.
Now I was genuinely freaked out. I became very anxious and over the coming months, as the numb sensation progressed, deeply depressed. This depression was reinforced by each doctor who ignored my symptoms, including endocrinologists, dermatologists, urologists, and most importantly, 2 neurologists. Throughout I never lost the ability to perform sexually, which I realize is inconsistent with the typical presentation, but I do attribute my loss of libido and period of lack of spontaneous erections mainly to my drug-induced and also circumstantial depression.
(One quick aside, though I experienced the clinical loss of sensation later, I have some subtle hints that it was occurring sub-clinically while I was on the drug - namely, I was having sex with someone I hadn’t been with in almost a year, and I actually remember thinking, which seemed very odd at the time - why does her vagina not feel as good? Do I not like her as much?)
My first indication that something was provably wrong was a visit to Goldstein. Although my general opinion of the experience was low, he performed what’s called “Quantitative Sensory Testing”, basically, they vibrate a device on your skin and you mark the point at which you can no longer feel the vibration. They also perform a kind of simplistic EMG on your sacral roots (nerves between your spine and genitals). I was way off the mark on all these tests.
It still took me several more months to find a neurologist who took me seriously. My neurologist told me my symptoms we’re definitely abnormal and there are three places to look: 1. Your brain (MRI), 2. Your large fiber nerves (EMG), 3. Your small fiber nerves (epidermal nerve density test by biopsy).
Strangely, what actually made it all click for me, was this article (https://rxisk.org/pssd-withdrawal-small-fiber-neuropathy/) from Dr. Healy. It all sounded suspiciously familiar, but reading through the comments it was this one that gave me chills:
“I have been doing some literature research looking for polyneuropathy and its causes, especially toxic polyneuropathy. I’m quite sure there is connection especially in regard to C-fibres. My symptoms consist, apart from the whole cascade of PSSD, from numbness of scalp, particular insensitivity to touch – I would say I can identify topographic position of the touch, basic qualities, but any emotional retine is missing – my body is not able to recognize sensual touch, caring, caressing etc. Just plain neutral touch. It is annoying. It has many consequences: I don´t feel my children cuddling with me, my partner trying to engender erotic touch and atmosphere, I don´t feel peeple if they hug me. I’m isolated, cut off my body, cut off any pleasure my body was used to convey before SSRI. I have also particular anosmia, again I can smell something but completely without any affective respond. Fine and subtreshold scent are undetectable not triggering any reaction . My erotogenic areas ceased to generate any thrill and pleasure, the same is with kissing – I used to love kising my partner – nowdays it conveys nothing – sometimes felt even disgusting – it triggers no thrill.”
I had this exact feeling and symptoms. And you may have noticed, I took finasteride, NOT SSRI’s. In fact I excluded the commenters first line: “I´m suffering from PSSD.” We’ll come back to that in a separate post.
Now armed with this symptomology I went back to my neurologist and insisted on an epidermal nerve density biopsy. The test was performed and lo and behold, I had drastically reduced densities:
Test performed by Therapath.
Epidermal Nerve Fiber Density Test
Result Value: 0.4
Low Normal: 6.2 - 6.8
Result Value: 0.79
Low Normal: 4.5 - 5.1
These aren’t just low, they’re almost zero! This was in January of 2019, 7 months after I first experienced symptoms. Since then (today is Aug 4, 2019) it has continued to slowly deteriorate. My entire body has barely any sensation. Touching my own body, my girlfriend’s body, having sex, even swimming or walking in a warm breeze, are all a shadow of what they used to be. I am essentially blind, but to a different sense: touch. But that’s not all, around late afternoon each day the numbness transitions into a numbness + burning sensation. Like a sunburn. Although it fluctuates, by evening of most days I am profoundly uncomfortable in my own skin (this is a hallmark of SFN.). Each night it ‘resets’ and is replaced with a sort of ‘white-out feeling’ in the morning.
It’s truly awful stuff.
Post-diagnosis I had the full battery of blood tests, including the usual suspects (diabetes, B-12 deficiency, Celiac, heavy metals, etc) as well as the rarer (autoimmune, inflammatory, etc). Everything came back negative, hence “idiopathic”.
The reason I bring this to the attention of the forum is this: I would have no direct link to finasteride to substantiate my overwhelming feeling of one, save 2 things:
- The timing of a decline in a number of areas: testicular size, fertility, mental health, free testosterone (more below), AND nerve health is pretty damn coincidental, but even more compelling is:
- There are LOT of symptoms described on this forum that match mine/those of SFN exactly and that I’m pretty confident are hidden small fiber neuropathies.
Just some examples:
For the past few months I have been suffering from numbness in my rectal region. When passing stools, I had numbness in the anus and complete numbness in my anal sphincter.
very interestig. I am numb here too. also scrotum, penis and parts of my back. I will certainly try this. How long were you number for? I have recently determined that I am suffering a ‘numb’ feeling on my scalp. Its not easy to tell but it is particularly noticeable when detecting hot and cold. Since using Finasteride I also have numbness of my penis and whole genital area, even anus. I can still feel things so its not truly ‘numb’ but there is a massive loss of senstation. I wonder if anyone else that has a numb feeling in their genitals also has a numb feeling in their scalp - or am I alone?
penis feels like rubber yes, but also the whole body skin has numbness too, and feels like rubber.
Do you also have general body skin insensivity? I mean the tickle feeling when you touch yourself or from somone else, have you also experienced this skin numbness? (im not talking about penis here)
i dont know really. but its definitely a different feeling when i touch myself. it feels a bit numb and strange. numb is the wrong word but there is nearly no sensitivity and it feels awkward. i dont feel comfortable in my own body anymore. before pfs i had my erogenous zones but now they are away. i feel more/have more sensitivity when i touch my breast as when i touch the area around my penis (under stomach, penis , the erogenous zones)
Note: numb did not perfectly describe it for me either, it’s like a lack or erogenous-ness
I have the opposite side, my skin on the legs is hypersensitive, some days I can not wear my pants, but I do have to wear them and stand this shit all day long.
Note: As I mentioned above, burning hypersensitive skin is a hallmark of SFN.
I am on the other side… My skin is oversensitive, mostly on the legs, sometimes on the entire body. It feels so bad when I am dressed, the only time I feel good while I am experiencing that is when I get naked.
yes i feel like I have lost skin sensitivity over my whole body! Mainly genitals, but my whole body does not feel ticklish anymore. I just feel that I am touching it if that makes sense, there is little to no sensation in spots that used to be ticklish, nipples, thighs etc.
and I feel like my whole body has lost it feeling. I complain of numb genitals/ high, tight scrotum. I can not feel any sensation in my body, I also used to be very ticklish. Touching my inner thigh would instantly give me an erection. Feels very discconected now!
I also have a full-body rubbery skin, transparent with veins showing everywhere, insensitive to touch. When I take a shower it feels like pepper and sand, dry like Sahara desert, to the point it hurts.
Note: these strike me as someone trying to interpret a loss of feeling on their skin. It feels like you’re touching someone else!
I read some guys here who got a poor skin sensitivy. It is one of my main side effects, but few people are talking about it.I have lost approx 50% of feeling of touch in my entire body. it was as have a a slight skin anesthesia. I’d like to know why the side effect happens? What hormones are involved? or what neurotransmitter? What can I do to recover my skin sensitivtiy?
The amount of sensitivity loss varies around my body. The tips of my fingers are the worst, with about 40% loss, with all other areas being someone less. My skin also feels waxy in places, kind of like a wet suit, rather than naturally-oiled leather (i.e., healthy skin). A lot of this happened after I went off Propecia. Dermatologist have no idea what to do. What I always found odd is that, aside from my skin problems, I have no other PFS symptoms. I guess I should count myself lucky, if profoundly uncomfortable at times.
Note: this is really just dead on. “Like a wetsuit”.
I have the same thing. My finger tips are dry and dead.It has small pathches like if you burn your skin it becomes smoothe in small patches. I have very light finger prints now.
I was a very ticklish guy. As a test I had my wife try to tickle my feet and ears. This would drive me nuts before. Now I can feel the touch but no ticklish sensation… Any of you guys notice this? I think we notice right away with genital sensitivity but I swear the skin on my entire body has no pleasure receptors or whatever you would call this.
- @depressedguy: Yeah i have this too
- @Livingdead Same here.
- @spstriken exactly 100%. whole body is wrapped in a paper.
Why don’t you guys get some sensitivity testing? I had a vibration test done and it showed more than 50% lower than normal sensitivity throughout my legs, genitals, and buttocks relative to a baseline taken at my index finger.
I have bad sensitivity in many parts, but at the same time my skin gets very sensitive to clothes and hot weather, or maybe painful is the word.
Note: more burning examples, hot weather is known to make SFN worse.
Here are some of the really specific indicators that translate to small-fiber neuropathy that seem genuinely original and not easily imagined by reading from symptoms of others:
“I swear the skin on my entire body has no pleasure receptors or whatever you would call this.”
- This is how I first noticed the loss of sensation and is consistent with a loss of fragile c-fibers which provide ‘affective touch’, whereas larger A-fibers have remained intact.
“I have lost approx 50% of feeling of touch in my entire body. it was as have a a slight skin anesthesia.”
- I felt like someone gave me a little bit of lidocaine all over my body. It feels exactly this way, except now it’s more like 90%.
“I also have a full-body rubbery skin, transparent with veins showing everywhere, insensitive to touch.”
- This feeling of ‘rubbery’ skin is consistent with the sensation I experienced initially. There rubberiness comes from feeling like it’s someone else’s skin. I also have experienced the thinning of skin that’s mentioned. Mostly noticeable on my penis and scrotum, where you start with thin skin and finasteride is highly active.
“When passing stools, I had numbness in the anus and complete numbness in my anal sphincter.”
- Comments like this point to the same non-length dependent SFN because it is not local to just the penis/scrotum, where a doctor can possibly make the argument that it is related to arousal. I also experience this in general. When I wipe, the whole area is numb.
Some other symptoms and unique items in my medical history in case they catch anyone else’s eye.
- genetic on both sides of family, on atenolol since early 20’s, switched medications around the time I started fin to losartan, have heavily researched this medication as a cause but basically zero link. Have since stopped.
- Dealt with it my whole adult life and would relay this to doctors, led to an initial reaction from them (and to be honest, myself) that I was just ‘freaking out’.
- I tried lexapro for 6 months in early 20’s (I’m now 34)
- I took xanax at a low dose fairly often for 3 years, but gradually had tapered off around the time I started finasteride. I also restarted taking it to temper the panic attacks around the time I experienced numbness for the first time). This I find a little suspicious but I took it for a few months and stopped - now almost a year ago.
Loss of sensation
- More or less even throughout body but scalp, back of neck, back/shoulders, stomach, and genitals were initially most noticeable.
Significant testicular atrophy, still continuing
Low testosterone (my total test has dropped by about 200 pts on avg over past year, pushing free test just below range)
Skin quality has degraded, aged
Very prominent veins on penis
Softer, thinner chest hair
Smell and taste significantly decreased
Depression (partially alleviated). No prior history.
Anxiety (comes and goes)
Libido (alleviated alongside depression)
Hair stopped falling out (eye roll)
OK! I will follow up this post with a separate one on the possible mechanics involved, association, null hypotheses, and the (unfortunately limited) therapeutic options.
Mainly I would love to know one thing from others, for those mentioned above and anyone else experiencing these symptoms:
- Have you spoken to a neurologist about small-fiber neuropathy?
- Most importantly, have you had a biopsy performed?
Thanks, feel free to PM me for anything specific. As the name implies, I am based in NYC, and now unfortunately I’m 34, 14 months into this mess