Support for small fiber neuropathy with cold intolerance sensory nerve

@gcattnu39
I have idiopathic small fiber neuropathy that is affecting sensory and autonomic systems. My neurologist told me the other day that there is nothing to “cure” SFN. I have taken Cymbalta/Duloxetine for nerve pain and it helped some but makes you tired. I also take low dose gabapentin (100 mg) but doesn’t do much except make me dizzy/tired. I take alpha Lipoic acid and Acetyl l carnitine supplements for SFN and it has helped me. You also want to make sure you are not deficient in any vitamins (like vitamin b12) or at toxic levels (vitamin b6). You would need blood work to see if anything underlying SFN needs to be treated. Have you had your thyroid checked due to temperature regulation issues? Have you had a cervical MRI or EMGs done since your car accident to see if anything is being compressed/pinched?

I have this problem. I keep a cardigan sweater at my desk when I used to work and one in my car. I also keep a blanket in the car to cover my legs and feet. I get hostile when people take my sweater and blanket out of the car. I stay cold like ice even when it was 106 in Texas last summer.

I also bought extra large cashmere socks that I sleep in to keep my feet warm.

Hi….
Thanks for sharing! I wear many layers of clothes and bring blankets with me, too!

Do your symptoms get worse after being in colder environments (air conditioning or colder outside temperatures)?

Does anything help with the symptoms? Mine has become a lot worse and Covid made it worse!

Thanks!

Hi….
Have been to Mayo Clinic twice in MN and had many tests for blood work, MRI, EKG, thyroid, etc. One doctor said I had slightly elevated symptoms and I might have Sjogrens….but no definite diagnosis! Said I could take Sjogrens drugs to see if it helps but neurologist didn’t recommend it! Was not happy with Mayo Clinic on how I was treated!

@gcattnu39
You should get copies of all Mayo Clinic tests and reports/medical notes and get 2nd/3rd opinions from orthopedic, neurologist, and rheumatologist specialist. I have had things missed in MRIs, bloodwork, etc. and extra eyes and opinions may help when reviewing along with your symptoms.

Thanks!
I have seen other neurologists and doctors after going to the Mayo Clinic twice! Some doctors won’t see me since I already was at Mayo. Rheumatologist said I had some slight elevated symptoms for Sjogrens but not definite! Wanted to experiment a drug with me but neurologist said it would not help! I had good insurance then! Now I would pay out of pocket!

Have u tried red light or tens therapy?

Hi I would if you can travel I would travel to Cherry Creek Colorado and see Dr jill Schofield. Have you tried some pressing socks or can flush compressive sleeves still squirt during the day I have neuropathy and the same thing as you and compressive slaves and compressive socks really help with the hurt and pain I'm really sensitive to the cold especially after I get when it's really cold outside or in a really cold air conditioning. And then you're really hot I'm really hot too you might want to try to try to drink extra fluids buy one of those hand fans to keep around your neck than when it is hot keep it cold pack would you and try to drink on lots of fluids have you gotten your vitamin d checked or your iron checked are your fentanyl checked that is another iron check thing. I would go to orthopedic doctor to look at your sm neck and spine again🦵 🦵 magnesium helps with my legs feel better too.Arm. is your blood pressure low of it I'm just wondering if your blood pressure is low when you like walk around does it drop or when you lay in bed is it low maybe get a wedge to put under your bed to help your blood pressure not go slow maybe 🤔 maybe get a chair for the shower so your blood pressure doesn't go super low. Have you ask your doctor maybe to put you in physical therapy to help get muscle 🛂. Physical therapy for your condition is always good and it can always help help out it I'm in physical therapy and it helps me today show you late a place different ways. Best of luck and for you. There is also a that vitamins you order it is ordered on the radio my mom used it for her her legs were really sensitive to heat and cold and after she started taking these vitamins it helped her the fruits and it was like the fruits and vegetables. You take one green capsule and you take one red capsule to Green is for the vegetables and red is for the fruit two capsules a day up to up to four capsules a day. 🙏🙏😇😇

I would like to confer with people that have SFN with no sensory abnormality, just loss of balance from the legs.

Well that’s me, I’ve tried physical therapy, no drugs l am extremely active, l play baseball 3 times a week, workout 3 to 4 times a week and play golf 3 times a week. I do double duty oh my activities I’m also 89 years old will be 90 in Sept. I’ve been diagnosed with (PN) I’ve had it for 3 years l truly believe if I wasn’t as active I’d be I a wheel chair. There is no way I’m stopping my daily routine and let this horrible disease take over my life (What’s left it it) I don’t know if what just said will help you, but I wish you all the best and if possible never, give up there is always light at the end of the tunnel. God Bless You.