Small Fiber Neuropathy?

Hi there Pam and welcome. We (John and I) are not ganging up on you. I just couldn't help but slip in and make a comment about "triggers" and "progression". Your inquiries made me think a bit. Here is what I have experienced and what I currently think might be possible. Of course, everyone is very different.

First, there is the diagnosis. Mine was at .09% content which is not a good start with SFN (small fiber neuropathy). Do you know what yours is right now since you were just diagnosed?

Second, where do you live? What is your climate like? Do you have Barometric Pressure readings below 30.00? I ran a diary once with my daily SFN assessment and found that the weather can make a difference. It does seem that as I grow older, the weather conditions have more impact

Third, we all must face aging on top of SFN. I once heard a medical professional ask a group of folks, "why is it that we expect to age without pain, here, there and perhaps everywhere?" And then there are other conditions, treatments, surgeries, and recoveries.

Fourth, sitting too long. We used to go into the "cities" for plays and concerts. Two hours driving in and two hours sitting in the theater before two more hours driving home. My limit is about three hours for the entire day. Perhaps that is why we read that appropriate exercising, stretching, and doing some cardio work is essential.

Fifth, back-to-back activities. My final thoughts on this subject are about the growing need for mindfulness and meditation as SFN continues to want to take over more of life's pleasures. Instead of go-go-go days like I used to have, I now have stop-and-go days. Dealing with pain and discomfort of any kind can just wear us out both mentally and physically. So we to have to plan "recovery time" between everyday activities.

Just a few thoughts of the "triggers" that I have run into in the last 10 years. Maybe Pickleball can be replaced by something like an MFR (myofascial release) therapy on Mondays and Thursdays. And Connect will be here for you.

Does any of this help with your inquiries?
May you be safe, free, and protected from inner and outer harm.
Chris

Hi @elsa🙂💕 I can relate to all except the MS. I feel for you so much as my experience was a very sudden onset directly after a lumbar surgery. Almost exact same timeline. I’ve read for 23 years now n still barely tested.
It seems for me anyway, because at the time I thought I was very physically healthy, some people have a huge glial cell reaction-almost like an allergy to the surgery. The body reacts either to the shock or something during surgery ( my doctors refused to answer any of my questions). I started feeling like I was on fire from waist down. Frequent muscle spasms. Feet feel like I’m walking on burning glass shreds. Sheets in my bed hurt…. This was 8 months on L4-5: S1, after cervical fusion.
The first article I saw was 2010 about post Surgical neuropathy. NONE of my military or civilian docs admit to knowledge about it.
Check Wiley Medical Library online too.
About the same time of my new knowledge, ( 2010), my thyroid went. In researching thyroid I found intersecting symptoms with the neuropathy. During this entire time I have DAILY migraines. My entire spine, and now all joints, are deteriorating with bone spurs.
So-weather / pressure decreases, all amplify and age too, all increase the symptoms.
It seems inability for the liver to detox the body, overloads the thyroid too. Making the whole thing more complicated.
Using organic food, fresh if u can cook it( I add fresh fruit or veggies ea day). I can’t cook much so 1 sm change helps. Two meals / weeks w/ bone broth too. Highly filtered water and tons of whole food vitamins w/ all the low supplements. Any whole food low level detox ( no fasting involved) got my body moving more waste products. I paid fr a wholistic neuropathy dr on zoom. My labs weren’t very good at the time.
I had also just had a long staph infection ( surgery 2018). Overall I’m much improved lab/ thyroid wise n feel stronger. My neuropathy isn’t better yet but my labs are much better n thyroid is working a bit now.
Avoid all mainstream meat/ dairy/ food allergens. ( I developed a food allergy). We also now use digestive enzymes ( HCL to inc. stomach acid). My arthritis was a big clue my body was acidic. Acidic gut won’t absorb vitamins/ minerals. So I also added whole food dried beef liver to help iodine and cofactors. I think that was my Turing the corner.
Almost everyone with any chronic illness like MSRACRP fibromyalgia also has thyroid disorders or something like arthritis or type of an arthritis and all of these things indicate an acidic body failure to detox the body usually a low functioning or non-functioning thyroid so look at your skin and fingernails and hair and see what kind of shape they’re in because usually it’s not so great my hair from falling out really bad for the last five years specially.
And these are all indicators that you’re not absorbing your vitamins and minerals the way you should because that is the main thing that causes the thyroid to quit functioning the lack of detoxing and the lack of the correct vitamins and minerals in the body for me my fingernails were the big clue they were literally coming off my fingers in little pieces and detaching from the fingers themselves.
I no this is a lot of information to take in it’s taking me since 2019 to take us all in so I definitely understand it’s a lot of information I read a lot and every time I get off on a tangent I would realize that it was connected somehow . I also read a lot of thyroid websites that are based on organic or holistic remedies not just taking thyroid medicine I wanna know why this happened and every time I ever asked the doctor they couldn’t explain it to me . so it’s not just about a thyroid test there’s at least five or six thyroid levels you need to test not just the TSH , ( check hypothyroid Mom, Dr Isabel Wentz, Forefront Health, Dr Westin Childs). if you can get yourself into see a thyroid specialist not just a metabolic specialist and get those test done, or u can order n test on your own.
I also just starting following Dr Sircus. He’s a holistic oncologist who teaches patients how to cure themselves while being at home through six or seven basic, very basic , elements you can treat body with like magnesium and hydrogen.
I hope I gave you a place to start.
Your symptoms do very much sound like neuropathy. What kind isn’t clear but finding testing is almost impossible in certain areas of the US.
The foundation for Peripheral Neuropathy is very helpful too about what good testing is ( which tests)
I also read from a holistic perspective to replace my vitamins/ minerals I was lacking.
The holistic levels on lab results are very different than mainstream lab results. Requirements are much higher.
I hope I didn’t babble too much. My meds make cognitive thought impossible most days.
I’ll be praying for you n wish u best in your reading studies. If you have questions I’ll try to expand for you.
Try your best to stay active. I’m down to a stationary bike these days.
🥰🙏🏻

I have Sojren syndrome, I was told if I have Sojren then I have lupus too.

Have you seen these discussions?
--- Sjogren’s Syndrome – Introduce yourself and meet others:
https://connect.mayoclinic.org/discussion/sjogrens/
--- Anyone with lupus or SLE: How do you manage your condition?:
https://connect.mayoclinic.org/discussion/sle/