Recently Diagnosed with Small Fiber Neuropathy

Thank you for the suggestion. In NY you need to find an MD that's specifically licensed to prescribe medical marijuana. I will certainly consider that. For some reason I slept last night with minimal symptoms. Do others experience nights that differ with no known difference in your routine that day? My symptoms are just ice cold feet and legs with no pain, tingling or anything else.

Chris, you are such a dear, remarkable person. thank you for this message. I've been working on my mental/emotional attitudes, as I've not felt well the last several weeks and getting tired of the feelings of loss, etc. So, you, as you normally do, sent a message to someone and I benefited. I'm adding more music and art tonight, and will be focusing beginning tomorrow on increasing movement, not full exercise until after I have a few more tests re heart, etc., but movement and mindfulness. You are an inspiration.

Thank you. I'm getting my tincture now to help, putting on some music and remembering what a blessing this day is for me and all.
Blessings to you, be well and per you, 'free of pain and discomfort'!
elizabeth

Chris, what do you do for your Mr. Neuropathy visits to your legs and feet? My feet are cold most of the time, calves hot, and at night the feet won't get warm usually even with special sock. Arthritis and damaged toes tend to make it uncomfortable for me to wear most socks, but need something for warmth. I use the frankincense and myrrh/coconut oil at night then the socks. I think it's helping. Less pain and other symptoms. Also, my legs get extra hot....is that the PN or am I just a 'hot mama'?????
Thanks for advice. Maybe some more THC and cream on legs and feet???
Blessings and enjoy this lovely, stormy (in Jax) night. ess

Now that cannabis is legal in NY I’d think it maybe more physicians will become licensed. I think also, more doctors are becoming aware of its benefits, especially for sleep and pain reduction.

I find my symptoms vary in severity daily, although everything is always worse in the evening. And, if I’ve done a lot of lifting, garden work, etc., they’re also consistently worse. Some symptoms, particularly sharp stabbing pain in my feet and legs, disappears for a time and then reappears. I’ve not been able to determine a correlating cause. I do not yet know the type of neuropathy I have, however. Although, the autoimmune disease I have causes both SFN and PN.

Thanks for your feedback. Still trying to correlate things to changes in symptom severity but can't. Yesterday I didn't wear socks all day and had a light symptom foot experience and a good night's sleep. Was that the cause? I'll try it again.

Hello resage, I’ve had idiopathic SFN for 3 years, I take 300 mg. gabapentin at bedtime which puts me (luckily) to sleep, when I still can’t fall asleep I take 10 mg. melatonin. If the 600 mg. gaba doesn’t help you, you say you have no pain or tingling which is what gaba is good for, I would take consider taking supplements which can benefit your nerves at this early stage. I have been taking R-alpha lipoic acid, acetyl-l-carnitine, B12 and B complex plus a multi vitamins. I don’t drink alcohol, limit my carbs and sugars and exercise. My SFN has been greatly reduced over the past 3 years due to this practice I believe. I have never had a biopsy, my neurologist said she would treat the same (with gabapentin) regardless of result. Helen

Good afternoon @ess77. My freezing cold comes from my feet to about halfway up to my knee. It is as if my skin was a layer of melting ice. It usually makes an appearance as soon as I turn in for the night or lie down for a nap. There is no pain or discomfort. There is no itching or inflammation and I frequently have ice packs on my hands and wrists to fight the itch. So....the bottom line is, I have not done much but tolerate the melting ice on my legs while my nightly 2:1 tincture helps me nod off and my dreams take over.

I wonder, does it matter if you have numbness or not? I never have worn socks to bed. To be truthful, I have usually had a Cavalier puppy sleeping with me and keeping my feet warm. Or, like now, I have someone with a size 11 warm foot lying next to me. He says my feet are cool but not cold.

Regarding the cream or balm.....I use a 1:3 now for acute pain and a 3:1 for chronic pain.

May you be safe and protected from inner and outer harm.
Chris

Thanks, Chris. This is all helpful information. I have a lot of numbness in my feet, up to about 1/2 up my shins. The feet and toes all over stay cold often during the day, sometimes hot, don't know why the difference. Usually cold as ice at night and cold during the day I have very warm areas on my shins in front and lower areas. I think perhaps I have some vein issues from slight damage that causes that. Docs take note but move on.

I understand the blood isn't getting to these areas as it should and sometimes I can't tell if they're cold or not w/o touching w/my hands, which sometimes won't work because my hands/fingers are often a bit numb. Soooooo, aren't we having fun! I miss the hands and fingers since I used to play the piano and do miss that, and it affects so much we do in our everyday lives. But, I've learned to deal with all this pretty well, since I must! It does surprise me tho when my fingers don't feel things. Let me touch ice or a hot cup and see if they're numb. Nope! That's so strange, isn't it, that ice is so painful, anything cold hurts, yet I don't feel much.

I'm using the creams and lotions, like you and John. I suppose that's the best at this stange.....add some THC sprays to the coconut oil cream or a good lotion and I do ok. I do like the frankincense and myrrh cream, and the other with other such oils. They help.

OK. I sleep so well now with the combination of 1:1 or 2:1 and the reg meds, cymbalta and methocarbamol are wonderful for me. that's a good regimen for now and easily manipulated as needed. thanks for the input. You always help even when simply being supportive and understanding. BTW: is your size 11 for rent as a foot warmer?????? I move around too much, wouldn't work. Samantha even gets irritated at times when I move too much at night, not just legs but whole body w/discomfort. Can't stay in one position too long or get pretty uncomfortable in all the joints, arth. in vertebrae, etc. She gets up and goes to the end of the bed, giving me extra room. Or, gets on her tower and watches the night world go by. Lovely.
blessings and may your evening be lovely, pain free! elizabeth

I read most of the posts on Mayo Connects relating to Neuropathy as it’s relatively new for me and still being diagnosed. I’ve determined that everyone seems to be different in their symptoms. Causes of neuropathy also are widely varied. As are what seems to offer at least some relief for some and sadly no relief for others.

I have an autoimmune disease that caused Stage 3 liver cirrhosis. I had a transplant in August 2020. In October my stomach was numb and I began having tremors. My liver doctors said the numbness was normal and tremors caused by one of my anti rejection meds.

Tremors continued to get worse, numbness went down my right leg, hands became stiff and tingling, sharp pains in my right foot and lower leg. Terrible back pain. Liver doctors said see a neurologist.

Following the Covid vaccinations my symptoms increased. Numbness now in both feet and legs and all other symptoms increased. The neurologist gave me a bunch of labs, said I probably have another autoimmune disease, and referred me to a rheumatologist and a hematologist.

I have an impeccable diet, low carbs, no refined sugar, walk at least 2 miles a day and exercise. I do Gabapentin for sleep and pain. Can’t do cannabis anymore, unfortunately, as it conflicts with meds, as do many other drugs for neuropathy pain management. I started the ALA supplement a couple of months ago.

So, I’ll continue to read the posts…the mentors and many fellow “posters” have fabulous ideas and words of encouragement; I keep notes to ask my doctors, and, I do a lot of research. I have visits with all three doctors next week. I’m sure I’ll have more labs done and hope for an answer and maybe a solution.

I think my best advice is to keep observing and experimenting as you are, keep notes of what symptoms you have and when they occur, keep reading these posts and ask your doctors about the suggestions that may be right for you, research if you feel up for it, and most importantly, keep positive as much as possible.

Hi helennicola. Thanks for your feedback and sharing which is so helpful. I was fine for two days and nights and woke up today with a burning feeling in my left leg which goes away when I get up and walk around. No cold feeling, it seems to alternate. Be well and hope you continue to improve.