SFpN UNDER age of 60?

@nicom26 I am older than you at 52, but I am typically among the youngest at my Neurologist's office. SFN (specifically, Non-Length Dependent patchy Small Fiber). DX almost a year ago with symptoms start around years ago. Mine is confined to my feet for now: numbness, tingling and burning pain-all made worse the more I walk, of which I do quite a bit at work. I am terrified of it getting worse as my wife doesn't work and I need my job for the good insurance. My symptoms haven't moved locations but the burning pain is getting worse. I am a photographer, so there's that as a release. Hope you are doing well!

Hello, I’m 54 and have been diagnosed with SFN and some mild large fiber neuropathy. That’s about all they told me. I also tested positive for VGKC antibodies and also a weak, speckled pattern ANA. Not much is being offered for treatment except Pregabalin. I have stiff muscles, cramping pain , brain fog, burning and tingling and extreme fatigue.

@aimee Mine is idiopathic I am also very fatigues all of the time but I was before SFN due to depression and other health issues. SFN certainly doesn't help

Hello everyone Nicom 26 I was fairly young when mine started I’m 52 I’ve been battling the numbness , tingling, water trickling feeling down the legs , back , arms, but I also have spinal Arachnoiditis pain never shuts off …was later diagnosed with I know now needles anywhere around fluid space is a no ‘’no .. for any procedures I’m wheelchair driven away from the house and walker driven in home I’ve been a drummer all my life and since I can’t feel the pedals anymore I recently picked up the guitar to keep my mind and body and soul in tune . By all means folks don’t give up push the limits I know the pain never shuts off … but neither does the creative mind and it will make you feel better those happy endorphins will kick in your body might feel like crap but your soul with thank you for it 🙏🏻 Picking up the guitar has been fun playing learning the riffs of bands alike that I grew up Keep pushing everyone and god bless

I belong to an online support group for PHN on FB. There are younger people there. Pain is pain no matter your age. I was 59 when it first started and I am 64 now. I would not wish this condition on my worst enemy. It is life changing.

Hi. My health problems started when I was 16. Been living on and off bed rest rest since. Lots of chronic illnesses, mental, emotional and physical. Just diagnosed with sfn. I painted for a long time but because of exhaustion it has gone to the side. Hard to create when I can barely move or take care of myself. I do miss being able to take care of myself.

Hello @exitframeleft and thanks so much for writing - it's strange being the youngest isn't it? I certainly hope yours is a slow progression. Have you tried anything out that can help, especially with the walking? I am a fan of Bombas for socks and of Hoka OneOne sneakers... they look... kinda cool, but they feel like orthopedic sneakers, and the sole is nice and thick - helps to prevent falls. I've also found heat and rest to be helpful, as well as - prior to covid - things such as acupuncture and aquatic PT... These days things are looking pretty grim for me. I had biotech stimulator implanted at brainstem about a year ago, and I seem to be getting much worse much faster, from knees all the way up to hips and sometimes all i can feel is a small patch on my face. Fortunately I will be seeing my Neuromuscular neurosurgeon, the one who diagnosed me, this coming Thursday and I'll have a chance to talk more with him, prior to having yet another stimulator - biotech - placed in my spine. I'll do whatever it takes to get better or to prevent / slow down the progression, but I really hope for all our sake's that the right person - a powerful and multibillionaire person - ends up with this, so we can see more funding and research, and more HOPE.
Speaking of - I love to hear you're a photographer! My studio portfolio includes more videography and multimedia installation, new media these days, but of course i love photography as well. These days I am mostly in bed so I have gone back to drawing... I hope that you can find a way to keep employment even if it's editing photos or someting where you walk less... I've lost a few jobs in a row and have gone from six figures to nothing, and now I'm on a forced one year leave of absence from my PhD program before I can attend overseas qualifying exams. I know it's for the best but the funding is what was barely sustaining me and now I've found some contract remote work i can do from bed and at my own pace. I think it's really important we keep on working, and I completely identify with the release that creative expression provides!

If you are interested I'd love to get an Artist's Collective together for folks like us - with special conditions, heightened sensitivities, and the need for more time and patience in some instances.

I hope you're doing well too and thanks so much for reaching out! Please feel free to share your portfolio with me and I'm right here. You've gota few years on me but perhaps i've got a few more years diagnosis on you? diagnosed in 2018.

I so appreciate your message. Thank you so much, and be well - stay as healthy and happy as you can please !

Hi @caitiebeals

Yes, I am with you, and I'm sending you a gentle hug. I so miss studio practice, and even more taking care of myself. A nice long bath, art openings, a reason to get dressed up.

Please let me know if you'd like to participate in a sort of Artists Collective for folks like us. I realize it's not quite the same, but drawing and painting on my iPad has been helpful.

I'm with you in spirit and I feel the weight of not being able to take care of myself, practice art, travel, and....

the fact that you can trace your issues back to your teen years really resonated with me. I was diagnosed with cervical cancer at 14 (not HPV related - inherited from mother who also had this, and she died of Lupus at aged 47, this makes me nervous, but i digress)... followed by hemiplegic migraines and PCOS and as you mentioned - mental physical emotional... That damned Descartes really set things on the wrong path! Spinoza, Leibniz- scientists during baroque era who proved him wrong - everything is connected - and for me, the feedback loop, or vicious circle, between chronic pain and mental health , specifically depression, is really tough to navigate - in any case I'd love to keep in touch with you and I'd love to invite you to form a collective where we can still find ways to be creative even host openings online and such.

Sending gentle hugs and digital love your way. Your message was so emotive and impactful. Thank you. Went straight to the heart, and I am so moved. Thank you for letting me know you're out there, and you're dealing with the same things that I am, and that you can connect the SFpN to multiple chronic health issues as far back as aged 16. This pattern is something I have only recently revisited, after being told at aged 25 there was nothing to it - but I'm sorry - one body, it's all connected.

In any case, I hope you do something kind for yourself and I'm so grateful you took the time to write.

< 3 NMM

@fmmartinez58

59 is still so young, and meanwhile 75 year olds I know still sail and travel the world even though they have had cancer. I'd be interested in learning more about this support group. Thank you for the altruism- and you are so right - pain is pain no matter how old.

This opens my eyes to the notion that I've been angry because I'm not finished building a name for myself, or doing xyz, but I'd imagine that I've been thinking about this all wrong. And regardless of age, we are all still alive, and we know of a time before this disease dominated our lives ... and so, then, there's always something we were ALL looking forward to doing, simply taking care of ourselves and having independence being one thing that comes to mind - and this does not matter, in terms of age. I guess I just feel for folks that have the really debilitating progression before they (we, myself included) have the wisdom to go about handling dealing with compromised health status to such a dramatic degree. While I have had cancer and folks understand that and I've lost folks to cancer regardless of age as we all have, I do struggle with my peers understanding how difficult this is. That said, I know YOU KNOW. And I think a support group would give me that place and space where WE ALL KNOW. I feel so alone in this.

I've said those very same words - this disease is horrible and I would NOT wish it on anyone, not even my worst enemies or those who have wronged me.

Thank you - it is enlightening to reconsider the notion that pain does not discriminate based on age. And, if you don't mind, could you please let me know about this support group - is it easy to find? I deactivated my account but the man who has become my new Patient Navigator and has the same Abbott Proclaim XR biotech for neuropathy and a few other things that I do, from the same surgeons at the same place, where he works, let me know he hosts a support group on FB also, so I figure I'll create an account restricted access so I can participate. Thank you - your message carries wisdom and valuable take-aways that I will keep in mind and heart. I appreciate you very much, and I send you hope and strength.

NMM

Hello to you Haybusa! Well, what a demeanor, and a fierceness, and a wonderful gift of a personality I feel from your words and your encouragement. Thakn you for being you and thank you for taking the time to write all of us and give us that push - to keep on keeping on! Like you, I've got some spinal stuff, and I also suffered brain trauma, spinal and skeletal damage due to DMV accident (I'm not the at-fault party; was stopped at a red light actually), and I was just telling my patient navigator Chester how much I yearn to play the drums to get the ANGER out! But you know, you reminded me of the fact that I have a keyboard I can learn, and I used to love to play bass guitar -and once I have some money saved up I'll be getting myself another lefty pony bass... and I can always lay it on my lap like Elizabeth Cotten did her guitar... she played and plucked as if her guitar was almost a harp, you know? My partner is a drummer and he found a few apps on his phone where there's a drum kit and you can use your hands to hit the foot pedals, and my Patient Navigator (God Bless Him! and YOU!) told me that there are drum kits you can set up right at your bedside- but check you out- you're on guitar! That's really cool... Until I can get back to practicing ballet and once I'm not so badly bed-bound, I plan on relocating back to my native Sunshine state to be closer to friends and family, and to let the Atlantic sea and salty air and sunshine give me the best possible opportunity to live this life - I figure if I'm going to be laying this much, I want to do it at home, and home for me has always been the Atlantic Sea 🙂

Thank you so much, and should you be interested in forming a collective/ jam sesh/ band/creativity crew for folks like us to come together online and showcase our works and collaborate and such, please let me know.

I really think that having a space dedicated to making could help folks like us find new ways to be creative and have community with other creatives, yeah?

I thank you sincerely for your encouragement and your contagious positivity. I'm so glad you took the time to right. God Bless to All is right - right back atcha! Would love to hear more about how things are going on guitar, and i like your @milesdaviskindofblues handle.

Ahh - now I miss the days of calling New Orleans home - but hey, the music transports us anywhere we want to go.

All the best,
sincerely,
and with so much admiration,

nicole marie