1. < Neuropathy

SFpN UNDER age of 60?

Posted by nicom26 @nicom26, May 4, 2023

Hello, I'd love to Connect with Fellow Nuropathy Warries Younger in Age, or in Spirit, or in Both 🙂

I have been the youngest person in the wait rooms of doctor offices since the age of 16. Now I'm 39 - turning 40 in a month - and I'm still the youngest in the rooms. I would really appreciate having some support and lending some, as well, to others closer in age -- those missing their lives! The ones were just some years ago you could ... walk? Naturally knew -- didn't have to check. to see if -- you could trust that your senses and your motor organs and the like just worked --- for something such as being able to feel your thighs? Yeah, you know.

I"m relatively new here... Just feels kind of like a waste since I'm younger than so many of you. So, since I"m posting again, I'll go ahead and find out of anyone else is a professional artist - artist as broadly defined - could be music/visual/hyrbrid approaches?

Thx,

NMM

Interested in more discussions like this? Go to the Neuropathy Support Group.

nicom26 | @nicom26 | May 30, 2023
In reply to @aime "Hello, I’m 54 and have been diagnosed with SFN and some mild large fiber neuropathy. That’s..." + (show)
@aime

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.

Jump to this post

Hi there @aime. You know I didn't find Pregabalin to be very helpful because for me, the side effects outweigh the help, but it does work better for me than Gabapentin ... Gabapentin made my brain fog so much worse, same with the fatigue. I hope you get more information and I'm so glad you messaged.

My neurologist i see for neuromuscular speciality has been the most informative, and he had one of his staff members send me some articles about SFpN and such when I was diagnosed. I hope that you get a follow up or are referred to someone who can further inform you ... the symptoms you have are things I can identify with, but it sounds like you have been diagnosed with things that need more care, specialization, explanation, and I hope you get the answers you need!

Sending gentle hugs your way. Stay strong, even positive, when you can (easier said than done!) - and thanks so much for your message @aime (love your name, btw, parles-tu francais? Love. great name).

All the Best to you,

Nicole Marie

REPLY
exitframeleft | @exitframeleft | Jun 23, 2023
In reply to @nicom26 "Hello @exitframeleft and thanks so much for writing - it's strange being the youngest isn't it?..." + (show)
@nicom26

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 !

Jump to this post

@nicom26 I am sorry you have lost income over this diagnosis. The progression of my SFN is certainly a big fear of mine. I'd love to share my photography and work on something together. I have a large, old IG feed, but I use Vero now as I simply can't stand the Reels on IG. My Vero feed is at vero.co/exitframeleft . Please stay in touch, stay positive and be kind to yourself. Hope you are having good days mixed in with those tough ones.

REPLY
kle | @kle | Jun 24, 2023

Hello, I have had foot pain since I was very young. It has gotten worse after I received two doses of covid 19 vaccine over two and a half years ago and this was when my SFN was diagnosed. I'm 46 years old. My neurologist believes I have had SFN all along and it has gotten worse by the vaccine. Before I could tolerate foot pain that comes and goes but now my SFN is causing me not able to do much as I am in pain most days and all over my body. I also have bloat, dry eyes, frequent fatigue, and frequent urination. I am sensitive to many drugs, but I can tolerate low dose naltrexone, which I find helpful so I will stick to this as long as I can. My life has changed significantly. Many people including some doctors said I am so young and shouldn't be in pain, but I am in pain. It appears that many people don't really understand this invisible sickness. I hope it gets better for us.

REPLY
1 reply
lubelle | @lubelle | Jun 24, 2023
In reply to @kle "Hello, I have had foot pain since I was very young. It has gotten worse after..." + (show)
@kle

Hello, I have had foot pain since I was very young. It has gotten worse after I received two doses of covid 19 vaccine over two and a half years ago and this was when my SFN was diagnosed. I'm 46 years old. My neurologist believes I have had SFN all along and it has gotten worse by the vaccine. Before I could tolerate foot pain that comes and goes but now my SFN is causing me not able to do much as I am in pain most days and all over my body. I also have bloat, dry eyes, frequent fatigue, and frequent urination. I am sensitive to many drugs, but I can tolerate low dose naltrexone, which I find helpful so I will stick to this as long as I can. My life has changed significantly. Many people including some doctors said I am so young and shouldn't be in pain, but I am in pain. It appears that many people don't really understand this invisible sickness. I hope it gets better for us.

Jump to this post

I'm very sorry that you are in this situation. My son also has it, was diagnosed with SFN about 16 months ago at age 37. He has young son and is very athletic so this has been extremely hard on his young family.
He has tried various diets and has found the less sugar he has (including any alcohol) the better. He even did the carnivore diet (meat only) and found that helpful, but hard to sustain.
He will not take pills (for pain or anti-anxiety) prescribed from Doctors as he feels this contributed, if not caused his SFN. With each visit to a doctor they only wanted to prescribe pills not help us find why this happened. They of course said it was idiopathic SFN as he is in very good physical shape and not diabetic.
It's very frustrating that there are not research funds or trials to find out the "why" when an idiopathic diagnosis is given. So we are all on our own to try to find common links and useful information on relief.
I can tell you he would not take the vaccine, but did have Covid twice during the surge. He did not have a bad experience, more like the common flu virus each time.
We do see a correlation to stress/anxiety which will increase symptoms. He has balance issues and hot/cold/wet skin, feet pain and numbness.
We wish you all the best and his neurologist says she has seen it regress completely, so we are hoping for turn.
Best of luck to you!

REPLY
1 reply
kle | @kle | Jun 24, 2023
In reply to @lubelle "I'm very sorry that you are in this situation. My son also has it, was diagnosed..." + (show)
@lubelle

I'm very sorry that you are in this situation. My son also has it, was diagnosed with SFN about 16 months ago at age 37. He has young son and is very athletic so this has been extremely hard on his young family.
He has tried various diets and has found the less sugar he has (including any alcohol) the better. He even did the carnivore diet (meat only) and found that helpful, but hard to sustain.
He will not take pills (for pain or anti-anxiety) prescribed from Doctors as he feels this contributed, if not caused his SFN. With each visit to a doctor they only wanted to prescribe pills not help us find why this happened. They of course said it was idiopathic SFN as he is in very good physical shape and not diabetic.
It's very frustrating that there are not research funds or trials to find out the "why" when an idiopathic diagnosis is given. So we are all on our own to try to find common links and useful information on relief.
I can tell you he would not take the vaccine, but did have Covid twice during the surge. He did not have a bad experience, more like the common flu virus each time.
We do see a correlation to stress/anxiety which will increase symptoms. He has balance issues and hot/cold/wet skin, feet pain and numbness.
We wish you all the best and his neurologist says she has seen it regress completely, so we are hoping for turn.
Best of luck to you!

Jump to this post

Thank you so much for sharing your experience. It's surely soothing to hear that your son's condition has improved significantly. I will continue to wish for his complete recovery. Having idiopathic diagnosis is definitely frustrating and with SFN association with covid 1 vaccine, there is not much known about the exact mechanism that leads to destruction of small fiber nerves, although some studies seem to suggest that this is likely autoimmune/immune mediated, Even if this is the case, I believe there is not much we can do at the moment to directly target the immune cells that is causing the problem. We can try therapies that temporarily suppress immune system or inciting autoantibodies but as long as the target cells are still active it will continue to destroy the nerve. I will just have to pray that overtime my immune system calms down and allows me to recover. Like you mentioned, we really need more rigorous research to find more targetted therapy and to understand the various mechanisms causing the issues. I hope we can find something soon. Like you have indicated above, I have tried my best to keep my health at the optimal state through healthy diet, intermittent fasting, and treat my pain symptoms the best as I can. I hope and pray that it gets better.

REPLY
View MoreView Less
Please sign in or register to post a reply.