I have Small Fiber Sensory Neuropathy Series | EP. 1
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- Опубліковано 9 лют 2025
- This is my story of living with her chronic pain. I want to take you on the adventure with me because who knows where it is going. -Kassandra
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Hi there! Our names are Kassandra, Leila, and Aurora. We make new videos just about every day about our daily boring life (vlogs), Hauls, DIY Projects, Unboxing and anything else we can think of!
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Thank you for sharing! I hope you find some relief.
I have had acute pain from small fiber neuropathy in both feet since 2017. The burning and sharp stinging pain is really hard to cope with. I have had many suicidal thoughts mostly when the pain goes from a 3 to a 7 for hours on end. I'm currently on the highest dose of Gabapentine and still have rough days. I joked to my Neurologist about just getting both feet amputated. Then at least even though I couldn't walk I wouldn't have to live with the pain anymore. I really feel for you Kassandra especially because you deal with pain up to your waist and hands. I doubt my resolve would hold out for that long. All my love to you and your family, enjoy the small moments when you feel normal.
I have been dealing with the same exact thing and was thinking about trying acupuncture…. Have you ever tried it ?
Try a carnivore or at least a keto diet for a few months and see if that helps. For sure it will not cause any side effects.
Feel better soon. I am just beginning this journey of inquiry, similar symptoms, and pain. Thanks, sharing. Peace
Everything you said in this video is me! I have been through all of the same issues as you. My pain management doc cut me off from my hydrocodne, the only thing that gave me some relief. I took my prescription properly although due to the opiate crises they are cutting many people off. So like you I have tried all the other drugs and patches, my side effects were awful and not helping with pain. I started to just plan my death until I found Kratom. I don't take any medication and this leaf has helped sooo much to help minimize pain, sleep longer, get me up in the day to actually do stuff etc. I highly recommend it!!! Just like you all my other tests came back normal until they did the skin punch biopsy test. The test proved I have SFN. All I can say at this point is thank God for Kratom!!!
I'm sorry that you have to live with this awful issue. It's unbearable at times. I'm so glad you found something that works for you. I've never heard of Kratom before so I will have to look into it.
I feel you on the relief you get from finally getting a diagnosis. I went to several doctors and hospital visit and so many times I was told that it was anxiety or panic attacks. For a moment I thought maybe it was all in my head until recently this year, I was actually having some occasions of hard time walking and my dr did all sorts of test and finally I got a biopsy and got positive for sfn. I felt a relief of finally knowing what is wrong with me but unfortunately don't know what caused this. Still working on it. I wish you the best of luck on your future pain management.
I developed it right after being prescribed a Flouroquinolone Antibiotic back in September of 2020 . It's literally changed my life
Im not diagnosed wirh anything yet cuz i need to do tests but my neurologist has suggested i might have SFN as some studies have shown it is prevelant in patients with EDS (I'm diagnosed with hEDS). I think most of my pain is from my EDS, but i get a lot of the insects crawling and tingling feelings to the point theyve made me cry before. Trying to get my EMG scheduled after having had a clean MRI. It's very comforting in a way to see a video by someone with the disorder rather than another video by/for doctors or pharmaceutical companies. I hope you can get the treatment that works for you
Your comments are exactly like mine. On most of the same medications. My husband has been making salves from Cbd plants, help calm me down after he rubs the areas on your body that gives you all kinds of pain. I got it in my 50’s & I am 78 & somewhat worse. I am going for surgery to get a total new hip, To be honest I am somewhat scared to have the surgery because of the neuropathy. Doctor said I have severe arthritis. Prayers for you & your family, we need their help.
Im sorry that you are having to deal with this too. You’ll be in my thoughts for a speedy and positive recovery from your surgery. I hope it brings you some relief.
Thank you
Thank you
Thank you
You are incredible!!!!! Please keep going!!!
I have small fiber neuropathy too and you give me hope
I also have mental illnesses -
I was diagnosed with idiopathic small fiber neuropathy, three years ago and I’m 53 years old. I’ve tried everything Acupuncture chiropractic work scrambler therapy, red light therapy, ketamine infusions, medication such as gabapentin Cymbalta I’m currently on LDN which is low-dose naltrexone which doesn’t help but I’m afraid to get off of it thinking the pain might be much worse. At this point I’m only surviving not living. I’m just hoping and praying for miracle praying for anyone that suffers for any type of neuropathy or nerve damage. I also use a tens unit every day which doesn’t help but I continue using it hoping that one day it might lessen the pain. Feeling like I’m being set on fire every day with a blow torch and then freezing at the same time is miserable. I struggle every day, but because I have such a great love, my husband, I continue every day because of him.❤
Opioids help many
How about R alpha lipoic acid. I just started it a few days ago. I got small fiber neuropathy this past April because of my dumb doctor gave me steroid shots for a nerve injury in my arm and finger from a warehouse job and I got symptoms right away 4 days after my steroid shots. I am 55 now. I’m very upset. Both feet and legs are numb and my right foot is in alot of pain. I’m so upset. Greedy doctor I feel and not a good doctor at all. I hope you get better. I pray I do.
Try ASEA global signaling redox and find the Biocharger ng through their website; Nikola Tesla frequency coil.
@@davidlaurence2374 yes, during a flare-up I will use Tramadol and it helps. But if it goes on longer than two weeks, I know it’s time for an increase in my Gabapentin that I take every day…as opposed to staying on the Tramadol.
I have the same thing as you I’m 61 though and it started 12 years ago. I have been going to physical therapy for a year and had dry needling done in my knees, I no longer have pain there. Then we started in my calves doing the dry needling, and I no longer have much pain. My problem is the swelling and I make sure during the day that I put my legs up, I have a bed, I can put my legs way up high and I do that four times a day and it helps tremendously. I have a regiment that I do and my feet are no longer numb after I do my exercises and I can usually sleep about six hours, if I don’t do my exercise I’m in total pain all night. I refuse to take the medication at this time because I’m doing so well with the exercising. I have cut my carbs way down to about 30 g a day and I have been off of sugar for a year. The sugar is the biggest culprit of them all. I wish you luck in your endeavors in finding a solution. I just can’t tell you how important it is to exercise. I do not walk because of the sensory of my feet. God bless.
Heeey! I’m from Rhode Island too!!! ❤️ Small world !
My pain started in 2017... I’ve had so many test done and still on going ... my depression and anxiety is through the roof . Medication doesn’t work !!
I just had a biopsy at University Neurology in Cranston ... waiting for results
Good luck to you ! 🙂
I'm so sorry you are dealing with this pain. It is a wicked small world even crazier since it is a small state. Sadly I haven't found a med that works but I also haven't been able to find a pain management doctor either. I hope that you find relief someday.
Did u get muscle twitching?
@@IAMYUNGGAFI do and tremors
I just got a diagnosis on this too.
Black Marvel I’m so sorry you were diagnosed with this.
I have the exact same thing, so really understand. It's awful and slowly progresses. The pain is awful......Please contact me if you'd like to anytime! Working with others suffering the exact same thing is really, really helpful. I might be able to help you 😊😊😊 I've just been to Brigham and Womans Hospital in Boston and waiting results from a bunch of teats, but I do have the same, small fiber neuropathy and have been on all of the same drugs as you. Blessings to you 😊😊😊 Adrian 🙏🙏🙏
Mine started when I was 28 and is still ongoing getting worse.I feel your pain as I have the same symptoms all over my body. I can't wear Jumpers or Coats or eat certain foods it has totally destroyed my life.I hope one day they find a cure for this.
Just curious have been tested for Lyme disease? The north east is endemic, it often starts in knees, and becomes worse affecting your entire body. It can even affect the brain.
Hi, yes this is actually one of the first things they tested me for.
@@DearKassandra Glad to hear it was considered, Lyme disease and it's associated co-infections like Babesia are notoriously difficult to diagnose in testing unfortunately.
I have idiopathic small fiber neuropathy , was diagnosed with it at the age of 24 , im now 31. Ive been having heart palpitations, pressure on my head,muscle pain, and my aniexty is so bad now..my symptoms just started 8 months ago. We will get through this. Im still undergoing testing but I think its my SFN causing these symptoms. Ive had a MRI ,2 EKG ans a chest xray, multiple blood test, and they said im perfectly healthy.
I have had type 1 diabetes for 2yrs being pretty well controlled until I started feeling a burning sensation in my feet. It then quickly went up to my thighs,calves,arms,back,head and even eyes at its worst. Didnt know what was causing it. I had many tests done but have not yet been diagnosed with sfn. Just recently I've started having blue hands,discoloration so that makes me believe I might have thoracic outlet syndrome. I'm literally lost and depressed as I dont know when I'll be diagnosed and I'm only 20M. What tests would I need to get to determine sfn. Had an emg of the leg which was fine but not of the hands.
Also I literally feel like giving up on life. I dont think I can do university or even work.
Sorry you are going thru this. I have SFN. It took 4 years to diagnose. You need a skin biopsy, other tests don’t show anything (speaking from experience ).
Looked into Sarcoids?
Blue hands could be Renauds
I too have been diagnosed with idiopathic small fiber neuropathy. I am 53 years old and I suffer every day. The pain is undescribable. I feel like my legs are on fire like someone has a blow torch on my legs and feet and I’m burning alive, as well as freezing at the same time, I’ve tried everything, acupuncture, red light therapy, chiropractor, scrambler therapy, many medication’s to which none have worked. I do yoga every day and I also do cardio every day even though I’m in so much pain when I’m exercising I do it for the mental aspect because if I didn’t, it would be so much worse. I mentally and physically not in a good place, but I get up every day and do my normal daily routine while struggling. At this point, I am not living I’m just surviving I’m hoping and praying for my miracle and I also pray for anyone out there who has nerve damage dealing with neuropathy. I pray that you get some relief. Amen.
hey there! thanks so much for sharing this video. i am a 28 female and was recently diagnosed with small fiber neuropathy. i cannot seem to find any information about it, but i can tell you that i've been in immense pain the last few years, especially the last few weeks. i would love to connect with you (not creepy promise).
I completely understand the frustration of trying to find someone to talk to about this. Please feel free to email me on our email address. I will gladly talk to you.
I am looking into a program called Momentum Neuropathy Center. The doctor's name is Dr. Karen May. She had a terrible case of neuropathy herself and got it under control! She is located in Michigan, but has a program that you can do at home, or at a distance. I got cipn after cancer treatment with chemo-
I just got diagnosed with this, haven't been back to the neurologist though. I've already tried injections in my spine. Just made things worse. I already had the constant burning pain in my legs but have been dealing with my back burning like fire.
hello. may i ask why you got spine injections. Were there any abnormalities in MRI?
how are you doing now
I just got this diagnosis last year. It sucks. I have tired all the things you have. Massage made my nerves over active and my pain worse. I did start low does naltrexone and it helps a lot. I also take gabapentin and duloxetine. It makes like more manageable. If they get the full confirmation on SFN. IVIG might get approved and that can help also. I am working on that now
How is it going now, Kessandra? I hope you’ve found something that helps. I’ve had idiopathic sensory neuropathy for 13 years now, and like everyone else have tried everything. I’ve had a nerve stimulator in my back for a couple of years, which helps somewhat however the leads were placed too high for help with the feet. I’m getting 2 more leads in the sacral area of the spine. I’m pretty sure it’ll work. ATM the only thing that helps is ice foot baths (it shocks the nerves into behaving) and tramadol. Although I also take lyrica and amitryptiline I don’t think they do much anymore. It’s a constant battle. One thing you must do is keep fit and healthy. If you can, walk a couple of miles everyday, your body needs that. Sugar and hot spicy food is an absolute NO. Anyway, I feel what you’re going through and hope you get around it. 😊
You explained it well. Have had it since a surgery in 2018, good part is we know what it is. Bad part is pain is always their and is hard to forget about I am on 500 mg of Lyrica, but on fire when sitting. maybe someday they can solve the question as to what is the cause so we can fix it. Good luck, I will keep you in my thoughts.
It's herpes.
I got neuropathy because I had chemotherapy. It’s mostly in my toes up to my knees, but also in my hands. I can’t even walk without shoes on. I have to use a cane, but I also have a wheelchair that I got when I was recovering from cancer. I use that when I know I’m going somewhere with a lot of walking involved.
The neuropathy in my hands isn’t as bad, but I tend to do things with them more slowly. I’m always not getting a good grip on things. My handwriting was never eloquent, but it’s worse now. I do good just to write legibly. LOL
Even laying in bed my legs will twitch all of a sudden like someone suddenly pokes me with a needle. And the only time I don’t feel any tingling at all is when I first wake up. Then I start to move and it starts all over again.
For me though I don’t feel a burning pain. I would say it’s an extreme cold even though the room temperature is in the 70s. Winter is definitely not my favorite season.
i have SFSN and i am 68. i had skin biopsy that was positive for SFN and for sensory neuropathy was diagnosed from EMG/NCS. no treatment that i am aware of
I have cerebral palsy in both legs I just had a doctor's appointment to go over my EMG test results my doctor said I have Neuropathy. I got my cane in late April. I have taken gabapentin but now a low dose of cymbalta for the nerve pain
Sorry that you have to go through that, I deal with the exact thing but I also have pain in my entire spine so all put together is debilitating. I learned triggers and I know if I have something to do the next day I have to prioritize my rest in advance
I was poisoned now I have central sensitization all kinds of symptoms all over tingly, pain, fasciculation, parathesia , vibrations. New distress every day. Going to try transcranial magnetic stimulation rTMS and ketamine
How were you poisoned? I’m experiencing new symptoms.
Were you poisoned by an antibiotic?
What is your diet like.. Plenty of info on the net. Try the nerve doctors.. Good info
Been there done that all the tests she went through it's called idiopathic they don't know what's going on I'm still suffering with it everybody's giving up on me too I hope you find peace and pain-free to😢
Thanks for your video! I have symptoms like you and I am so afraid. I am having a question, are you able to feel Pinprick during the test or hot and cold temperatures on your skin? Also do your symptomps become sometimes worse when the skin is damp?
You might have said in the video or in the comments but what is the underlying cause of your SFN? It sounds mostly like pain management is happening for you rather than your doctors working to find the underlying cause which, if treated, can help greatly alleviate the symptoms.
I have idiopathic SFN. The doctors can’t find a valid reason for the neuropathy it just started.
Hi! Thank you for your story and information. I have a question on your leg weakness. Is it directly caused by sfn, what is your doctor saying about leg weakness? Everything I research online suggests that leg weakness is not a symptom of sfn. I am in the middle of getting a diagnosis for sfn. I have all the symptoms of sfn but also my legs feel wobbly and on bad days my knees will buckle, my nerve conduct test didn’t show anything. I am wondering if sfn alone affects muscle? Thank you again for telling your story!
I have a very similar story to yours. Have they identified what is causing your SFN at this time? Also, have you tried to apply Lidocaine patches when it is burning? I live in non-stop 24/7 burning pain - out of options aside from Lamictal, Mexiletine, and Ketamine unfortunately. I am looking into cranial sacral therapy and massage now at this time - and herbs and supplements. If I find anything that helps I'll let you know.
John Fouts no they haven’t. As of right now it’s idiopathic. I use lidocaine patches on places and it helps but it doesn’t resolve my whole problem.
Hi! I've been suffering from SFN since 3 years. I have been feeling much much better and I'm in much less pain since I started anti inflammation diet; reducing gluten, dairy, processed food, sugar etc. I'll be happy to share with you some more information if you're interested. Just PM me.
Have you used Ketamine
@@paulinajill do u get mold n lyme test ? I cant sweat n i cant detox my mold n lyme. I need help n u know what dr i need to go n see to get check for SFN ?
my neurologist said I have vitamin B6 toxicity all of the other blood work was negative. I have full body numbness and tingling joint pain burning and stabbing in my back and any other place. Now since I've got my biopsy I've had lots of itching and my skinis sensitive so it leaves welps and stings
I m in my 40s, my symptoms started as tingling in my feet. Then muscle trembling in my thighs and legs then pain my back. I saw orthopaedic surgeon, had 3 mris over a year, saw a neurologist had nerve conduction tests - negative, then saw a rheumatologist who said I have fibromyalgia. But my symptoms are sensation based. If I try lay flat my feet start to tingle, if I sit on hard seats or for long time my feet tingle, if I touch anywhere on my back just lightly I have sensation run into my feet. I am not diabetic. I don’t know what to think. Not sure if it’s small, fibre? I get upper back pain then lower, then outer hip pain. It’s insane. It also comes and goes. I also get cold burning feeling in my shins and feet.
I have exact same symptoms. Touch my back and my legs throb.
How are you now?
Do you take supplements for your symptoms?
I have the same symptoms, I still do not have a diagnosis but I am sure I have sfn I live in the Bronx NY
I have horrible pain n i cant sweat, i have lyme n mold. Anybody can help me what dr i need to do. I cant detox my Toxin out from my body.
Try Carbon 60; C-60 Purple Power.
Did you get any burning in your head as well ? I have the same things
Toya Marsh no I don’t. I have felt it like in my spine in my lower back but mostly just in my legs, feet, hips and hands.
I've felt it everywhere in my body. Even in my eyes. Still have yet to be diagnosed?
@@silverfullbuster9177 my eyes get dry and burn
@@silverfullbuster9177 Have you looked into Sarcoids?
I'm young and have hardly any of the symptoms of this disease and my biopsy came back as a strong positive. Go figure!
Did you get the C vax? That causes a lot of problems and will continue to do so. Have you tried the carnivore diet? There is a lot of info out there that a lot of people are resolving all sort of issues. If you had the vax, I don't know if it would help though.
Hello: what about your sfpn. Are you recovery
Hi. Unfortunately, I am not in recovery. I'm at a standstill with doctors unsure how to help and specialists unsure what to do. I plan on doing another video soon with updates. I'm waiting for another appointment this summer before I post it.
Do you tried ( CBD oil ) ?
@@Selmaveibrahim Yes, I have but it didn’t do much for me.
Did they put you on topamax for small fiber neuropathy
Yes they did. It didn’t help for me.
@@DearKassandra I wish you well how are you going now
same ❤️
Hi Kassandra and folks, I have severe peripheral neuropathy and recently started researching Low-level laser therapy (LLLT) which is a form of medicine that applies low-level (low-power) lasers or light-emitting diodes (LEDs) to the surface of the body. Interested if anyone has tried this? Any feedback would be appreciated. Good luck with your battle Kassandra!
Have you looked more into this? That seems interesting.
I am not trying to be creepy in any way - I have been living with SFPN/EM/FM for over 10 years. Some days I have a lot of trouble because I do not have the support system that I need to be thriving. I am looking for SFPN family to connect with and help support one another. If any of you that have this are open to connecting, please let me know.
It is so sad that we have to live with such a painful, invisible chronic condition, whatever the cause might be for each one of us.. Especially for us young people, when no-one in our age even knows what neuropathy is, and you have to explain each time... My life sucked enough before even I got that, now I just have another great reason to kill myself..
Try low dose naltrexone it has dulled the pain by about 25 percent thus far. I also take deplin which is a b9 prescription pill. Also look at ketamine Ivs. I have it at 33. No one knows.
I would go to a integrative Md they check everything and understand that’s that Tradional mds do.
Just trying to help. Let know some tips that help you.
B9?
Scrambler therapy
Hi, I’m not sure what that is.
❤️💪
Did u ever feel bruised all over ?
Yes, I do.
Have you been tested for auto antibodies TS-HDS and FGFR3? I have SFN and tested positive for TS-HDS. I am working on getting approved for IVig therapy and this may help with the approval, so worth checking it out. For more information about this there is a good explanation on clinicaltrials.gov if you type in TS- HDS. Good luck; this is a tough journey!