Yeah, I’m not a scientist but the way I take supplements and vitamins is when my piss starts changing crazy colors. I pack off a little bit back off a little bit. It’s really important lots of calcium. Lots of magnesium little salt potassium get your blood checked.
Plainly your conductor can tell from your blood work if you’re deficient in anything a year ago, my blood work sucked with supplements and a rigorous amount The proper vitamins I have to say a year later my blood work is great. I’m stronger. I’m able to battle my symptoms a little and knowing that my body is getting the proper nourishment helps me very much psychologically and don’t for a minute. Think that you don’t have some sort of control over what’s happening is amazing. It’s the supplements anyway have a great day. I think I just might’ve overstated Expounded but hell I got time
What I meant to say at the end was mines the mind is a powerful thing focus you can displace pain not always but simply I know for me that sometimes I’m in a lot of pain. I’ll sit down and play piano and concentrate on that and release a lot of my symptoms that works for me. I’m sure there’s something you can think about or do that would work for you
Thanks for reply. I got my neuropathy along with other nervous system problems before COVID shots. This to my mind points more towards the not knowing enough about the virus itself yet.
Strangely enough, my leg cramps happen most often when I awaken in AM and do the in-bed stretch. This stretch seems to be a bit out of my control and while I can stop it, it seems to have a mind of its own -- this is when the cramps hit on the outside of my ankle and in my feet. I can't tolerate gabapentin but do take Vit B12 (oral supplement). Feet are most comfortable when cold (icy cold!). I notice when I don't drink enough water, the cramps are more severe. I have the type of PN where my feet are hyper-sensitive - feel everything - even bathmat causes discomfort. I've had this level of discomfort since chemo 6 years ago. It never improved but did get more severe. I've kind of divorced myself from traditional testing as it seems painful with no indication that the tests will result in help... so I take my tylenol, keep my feet cold, and alternate between swearing and praying.
I just read your article about your neuropathy and I find that I cannot wear closed shoes. Fortunately, I live in Florida, so I can be a sandals that have good support. That seems to help me.
If I may add my two cents … I have idiopathic polyneuropathy (no pain, but lots of balance/gait issues). At my neurologist's urging, for more than a year, I've been taking EB-N5, the medicinal food that, among other supplements, carries a significant amount of B-6 – but the "friendly" kind, pyridoxal phosphate (P5P), and not P5P's wicked twin, pyridoxine hydrochloride, the sort that, if taken to excess, may aggravate or produce PN symptoms. To date (more than a year), I've detected no worsening of my PN; in fact, I'm pleased to report that my balance/gait issues have remained remarkably stable. So much for my layperson's two cents. 🙂 I'm not a physician, only a fellow with PN, like the rest of us. I wish us all well! – Ray (@ray666)
Hi all
I am an RN and have PN due to DM and Sarcoidosis for 25 years. I am now 67. Mine is sensory so pain numbing and burning is my issue after 5pm at night. Currently I am having motor involvement which makes me unsteady. Restless leg too. My only relief is Tramodol
I have been on it for 22 years. 100mg after dinner. It is addictive but I have been on same dose for over 20 years. Also GABA 300mg three times a day. But I only take 600mg at bedtime. Due to dizziness. Neuropathy compression socks help. You can buy them ant amazon. Also try wetting white cotton socks. Wrong them out and freeze them. Then put them on when in pain. It really helps. For me heat makes it worse. Also buy lidocaine cream and message it in before the pain starts. As your MD for lidocaine prescription with maximum strength. The over the counter ones are not strong enough. For OTC, Maximum Aspercreme lidocaine roll on is good. Doesn’t get on your hands. You don’t want it to get transferred. To your eyes or private parts. Owww. Some creams also has capsacian crème. Try going to a reflexology session where they message feet and legs. The Asian places are not expensive and give great relief. I also bought sketcher sneakers. The slip on type with no laces. They even sell dress shoes ! My pain doctor is now suggesting a TENS machine that is implanted to stop nerve pain conduction. I may try it. My friend had relief. Good luck my friends.
I can’t do a Tens Unit. I have seizures and fall straight backwards. Since mine is severe sensorimotor (something ) polyneuropathy., SFN, and CAN - cardiac autonomic neuropathy. Since mine is motor also I have tremors in my arms/legs it really mess with my balance. I have not been able to endure tens units after I had bacterial spinal meningitis. It sends my nervous system into over load. The antibiotics from the spinal meningitis caused my neuropathy then autoimmune disorder.
Dear Artemis,
So sorry to hear about the severity of your Autoimmune PN. Are you on steroids ?
You must be so upset by the outcome of your original diagnosis.
Also, my PN is autoimmune, but nothing like what you are going through. I am having balance issue and assume my motor nerves are now involved.
Dear Artemis,
So sorry to hear about the severity of your Autoimmune PN. Are you on steroids ?
You must be so upset by the outcome of your original diagnosis.
Also, my PN is autoimmune, but nothing like what you are going through. I am having balance issue and assume my motor nerves are now involved.
I have peripheral neuropathy of my feet but I don’t have diabetes.
I have done some research on the use of alpha lipoic acid but it always refers to diabetic neuropathy. Does this imply that
Lipoic acid is of no use for none diabetic neuropathy
I have peripheral neuropathy of my feet but I don’t have diabetes.
I have done some research on the use of alpha lipoic acid but it always refers to diabetic neuropathy. Does this imply that
Lipoic acid is of no use for none diabetic neuropathy
I think there is evidence that it helps more than diabetic neuropathy although there seems to be a lot more research on diabetic neuropathy. Here are a few other references on ALA.
Connect
Connect
Like
Helpful
Hug
I'm not sure about taking more B6 unless you have a B6 deficiency as too much B6 can cause neuropathy. Lot's of discussions on the B6 topic... - https://connect.mayoclinic.org/search/discussions/?search=b6%20toxicity
Have you had any labs drawn to check for vitamin B deficiency?
-
Like -
Helpful -
Hug
1 ReactionYeah, I’m not a scientist but the way I take supplements and vitamins is when my piss starts changing crazy colors. I pack off a little bit back off a little bit. It’s really important lots of calcium. Lots of magnesium little salt potassium get your blood checked.
Plainly your conductor can tell from your blood work if you’re deficient in anything a year ago, my blood work sucked with supplements and a rigorous amount The proper vitamins I have to say a year later my blood work is great. I’m stronger. I’m able to battle my symptoms a little and knowing that my body is getting the proper nourishment helps me very much psychologically and don’t for a minute. Think that you don’t have some sort of control over what’s happening is amazing. It’s the supplements anyway have a great day. I think I just might’ve overstated Expounded but hell I got time
-
Like -
Helpful -
Hug
1 ReactionWhat I meant to say at the end was mines the mind is a powerful thing focus you can displace pain not always but simply I know for me that sometimes I’m in a lot of pain. I’ll sit down and play piano and concentrate on that and release a lot of my symptoms that works for me. I’m sure there’s something you can think about or do that would work for you
-
Like -
Helpful -
Hug
1 ReactionI believe my might have started with flu shots..
-
Like -
Helpful -
Hug
1 ReactionI just read your article about your neuropathy and I find that I cannot wear closed shoes. Fortunately, I live in Florida, so I can be a sandals that have good support. That seems to help me.
-
Like -
Helpful -
Hug
1 ReactionIf I may add my two cents … I have idiopathic polyneuropathy (no pain, but lots of balance/gait issues). At my neurologist's urging, for more than a year, I've been taking EB-N5, the medicinal food that, among other supplements, carries a significant amount of B-6 – but the "friendly" kind, pyridoxal phosphate (P5P), and not P5P's wicked twin, pyridoxine hydrochloride, the sort that, if taken to excess, may aggravate or produce PN symptoms. To date (more than a year), I've detected no worsening of my PN; in fact, I'm pleased to report that my balance/gait issues have remained remarkably stable. So much for my layperson's two cents. 🙂 I'm not a physician, only a fellow with PN, like the rest of us. I wish us all well! – Ray (@ray666)
-
Like -
Helpful -
Hug
2 ReactionsI can’t do a Tens Unit. I have seizures and fall straight backwards. Since mine is severe sensorimotor (something ) polyneuropathy., SFN, and CAN - cardiac autonomic neuropathy. Since mine is motor also I have tremors in my arms/legs it really mess with my balance. I have not been able to endure tens units after I had bacterial spinal meningitis. It sends my nervous system into over load. The antibiotics from the spinal meningitis caused my neuropathy then autoimmune disorder.
Dear Artemis,
So sorry to hear about the severity of your Autoimmune PN. Are you on steroids ?
You must be so upset by the outcome of your original diagnosis.
Also, my PN is autoimmune, but nothing like what you are going through. I am having balance issue and assume my motor nerves are now involved.
I have peripheral neuropathy of my feet but I don’t have diabetes.
I have done some research on the use of alpha lipoic acid but it always refers to diabetic neuropathy. Does this imply that
Lipoic acid is of no use for none diabetic neuropathy
I think there is evidence that it helps more than diabetic neuropathy although there seems to be a lot more research on diabetic neuropathy. Here are a few other references on ALA.
Alpha Lipoic Acid
http://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid
Research seeks to identify the mode of action of two age-essential micronutrients,
lipoic acid (LA) and acetyl-L-carnitine (ALCAR)
https://lpi.oregonstate.edu/research/hap/aging-stress-response-and-mitochondrial-decay
(R)-Lipoic Acid: Unique ‘Mitochondrial Antioxidant’ Fights Premature Aging
https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/
You can also find a lot more using Google Scholar - https://scholar.google.com/