Do You Too Have Small Fiber Sensory Neuropathy?

@lucylaughs
I can relate with what you are going through. I was diagnosed with idiopathic small fiber neuropathy about 8 years ago and now I’m in my mid-50s.

My neurologist at the time wasn’t really helpful other than testing, testing and more testing. Not much help in diagnosing root cause or treating. There really isn’t any “cure” for small fiber neuropathy and the best you can do is treat the cause if known (diabetes, alcohol, vitamin b12 deficiency, vitamin b6 toxicity, etc.).

Did you have a full neuropathy bloodwork panel done? Did you have any abnormalities outside reference ranges? Are you diabetic or prediabetic? Did your neurologist do an EMG/nerve conduction study to test muscle health/nerves? What are your other health problems?

I take alpha Lipoic acid, Acetyl l carnitine and magnesium supplements for my neuropathy and it helps minimize the burning/pins and needles feeling for me. I need to walk more slowly because I am not very stable. Having a dog can add more responsibilities and they can actually cause you to trip when they stand near you (I have 2 dogs and also cats and they can be a trip hazard).

How old are you? Do you have any family or friends who can help you?

Here are some AI suggestions:
“ I'm really sorry to hear about what you're going through. Small fiber sensory neuropathy can be quite challenging, especially when compounded by other health issues. It's understandable to feel overwhelmed, especially when navigating the healthcare system and seeking the right support.
Understanding Small Fiber Sensory Neuropathy
Small fiber sensory neuropathy primarily affects the small nerve fibers responsible for transmitting pain and temperature sensations. Symptoms can include numbness, tingling, and pain, which can make daily activities difficult. It's not uncommon for individuals with this condition to experience a range of other health problems, and it can be frustrating when healthcare providers don't seem to fully understand or address your concerns.
Alternatives for Navigation Support
If you're considering alternatives to a service dog or cane, here are a few options that might help you navigate more safely:
Mobility Aids:
Rollator Walker: This can provide support while walking and has a seat for resting.
Walking Stick: A lightweight walking stick can offer stability without the connotations of a cane for blindness.
Technology:
Smartphone Apps: There are apps designed to help with navigation and alert you to obstacles.
Wearable Devices: Some devices can provide haptic feedback to help with navigation.
Personal Safety Devices:
Alert Systems: Devices that can alert someone if you fall or need assistance.
GPS Trackers: These can help loved ones keep track of your location for safety.
Addressing Weight and Health Concerns
It's important to approach weight loss and exercise in a way that feels manageable and supportive. Rapid weight loss can be unhealthy, especially when dealing with a chronic condition. Here are some suggestions:
Set Realistic Goals: Focus on small, achievable changes rather than drastic weight loss.
Consult a Nutritionist: A professional can help create a plan that accommodates your health needs.
Gentle Exercise: Activities like swimming or chair exercises can be easier on your body while still promoting movement.
Emotional and Psychological Support
Meeting with a neuromuscular health psychologist is a great step. They can help you process your feelings about your condition and provide coping strategies. It's also beneficial to connect with support groups, either in-person or online, where you can share experiences and gain insights from others facing similar challenges.
Connection to Edema and High Blood Pressure
Small fiber sensory neuropathy can sometimes be associated with other conditions, including those that cause edema (swelling) or high blood pressure. It's essential to discuss these concerns with your healthcare provider, as they can help determine if there's a connection and what steps you can take to manage these issues.
Remember, you're not alone in this journey, and seeking a second opinion is a valid choice if you feel your current neurologist isn't addressing your needs. It's crucial to advocate for yourself and find a healthcare team that listens and supports you.”

Hello @lucylaughs, I would like to add my welcome to Connect along with @dlydailyhope and others. You are not alone being overwhelmed and trying to figure out what you can be done to help your condition, especially when you have multiple things going on at the same time. The best suggestion I can offer is to learn as much as you can about your condition and what treatments may be available that provide some form of relief. There is a wealth of first hand patient experience here on Connect and many different discussions in the Neuropathy group. There is another discussion on the same topic that you might want to read what others have shared:
-- SFSN: Symptom Relief: https://connect.mayoclinic.org/discussion/sfsn-symptom-relief/

The Foundation for Peripheral Neuropathy has some great webinars on YouTube on sensory neuropathy and other topics. Here's a list on their YouTube channel when searching for "sensory neuropathy" - https://www.youtube.com/@foundationforperipheralneu4122/search?query=sensory%20neuropathy.

I too have always been overweight most of my adult life and only started making progress in changing some of my habits and losing some weight since joining Connect back in 2016. It has made a tremendous difference for my overall health, including my high blood pressure, lymphedema and hopefully it's helping with slow the progression with my neuropathy. I shared my weight journey in another discussion - Low-carb healthy fat living. Intermittent fasting. What’s your why? here - https://connect.mayoclinic.org/comment/336050/.

I know it's not easy to come up with some questions to ask at your upcoming meeting with a neuromuscular health psychologist. Do you normally take notes with you to appointment so that you don't forget to ask questions for something you are concerned about?

Here's some tips for planning the conversation with your doctor - https://www.patientrevolution.org/tools.

Dogs are wonderful companions and a service dog may provide the support you need. Perhaps some friend or relative can help you with walking him--and maybe if your health conditions improve, you will want to take him out there with you. I know my little poodle helps my morale and our walks are beneficial for both of us.

Wow, thank you so much. So I had an EMG and nerve biopsy and the appropriate paperwork. I'm not quite prediabetic, and the blood test didn't indicate anything else "abnormal."

I have: obesity, overactive bladder, fibromyalgia (in remission), hypothyroidism, high blood pressure, edema, PCOS, sleep apnea, severe arthritis in left knee and ankle, cubital tunnel in one arm, possibly in the other...I'm sure I'm forgetting something. I'm dealing with brain fog lately that may be due to menopause.

Cymbalta takes care of the neuropathy pain completely for me. I know this because I ran out of it and felt stabbing pain all over my body. So this med takes care of my fibro and neuro pain.

Service dogs are trained to not trip you up. Or so I believe. But I don't think I really want a big dog like most organizations provide because it would probably intimidate my senior cats. One of them has many health problems and is quite elderly.

Honestly, I have my eye on a Schipperke dog that could just be an emotional support animal. That's possibly what I need most. Plus, navigating with one would give me more clues than without one. Also, the Schipperke dog is the only breed that I feel in love with, so to speak, and it would be just about the size of my larger cat. 🙂

I started psychotherapy today, and it has already changed me for the better. I'm feeling so much more hopeful. My current neurologist claims that the cause of my SFSN is metabolic disease or something like that, and if I lose a ton of weight and exercise more, I should experience some recovery. Though this went untreated for so long, I probably have some permanent nerve damage.

A dog is something that would give me much hope in the present to work towards. I'd have to master many other things currently presenting problems to me, of course. But having to get out and walk a dog once or twice a day would be good for me. So it would seem to me today, LOL. There is always the concern for ice in the winter.

You are the best for sharing those AI answers! I never thought of devices that could help me. I'm a member of some blind and O & M groups because I ironically wanted to become an O & M specialist before this happened--they teach long cane and guide dog usage to blind and vision impaired--and I can ask them about devices! Thanks for the great idea.

I will also look into how a walking cane might help. I'm not emotionally ready for a freaking walker. I'm only 50!!! Yeep!

Thank you for sharing about your story. I moved to a metropolitan area with an excellent healthcare system last year and am making more local friends now. I've got a neighbor doing my laundry and another taking my trash out. I stupidly moved to a second-floor apartment. Working on that. I'm getting ready to ask someone to help me pick up my place right now. Bending over and reaching is so hard for me. Do you struggle with that as well? I have a grabber now, and a shower bench.

I don't struggle so much with balance but with not noticing changes in terrain if that makes sense. Can you relate to that?

Hi there, thank you for your reply and for all of these great resources. I do normally make lists, but I wasn't going to for that psychologist appointment--great idea! 🙂

Blessings.

@lucylaughs
I also deal with obesity, bladder control issues (tied to my cervical spine stenosis/myelopathy), Hashimoto’s/hypothyroidism (tied to having one lobe removed due to large suspicious nodule), sleep apnea, brain fog, A1C elevated/heading towards prediabetes, congenital spinal stenosis/arthritis/degenerative disc disease, small fiber neuropathy (possibly linked to metabolism issues), etc. and I have had 6 surgeries in 4 years! Not fun and in lots of pain so can relate. I did take Cymbalta for a couple years until it stopped working for me. I am currently just taking extra strength Tylenol because I cannot take NSAIDs due to gastritis and esophagitis. I take Wellbutrin/bupropion for depression (from chronic pain and menopause hormone roller coaster) .

It is really good you are reaching out to others for help and I hear you about using canes, walkers, etc when you are in your 50s. I have the walking aids for when I need them in my home and haven’t started to use them in public yet (hope to delay as long as possible). My dogs and cats are all rescues (used to foster and I have multiple foster failures 😉) and they are definitely daily therapy for me as companions that give constant love and enjoyment. They run around and my instability in walking has me regularly pause and look down before stepping in different directions to avoid stepping on my pets (they all love to congregate around my feet). I also need to be careful not to trip or fall on their toys.

I definitely use grabbers to get things I cannot reach easily (also have a hard time bending down to pick things up due to cervical and lumbar spinal fusions and muscle weakness/numbness). My shower grab bars and built in chair are so very helpful. I take one day at a time and work within my energy levels. I prioritize each day what is most important and do things within my best energy times during the day.

I wish you the best continuing to build your support system to help improve your quality of life!