Living with peripheral neuropathy - Neuropathy Support

Neuropathy Support
1,132 members286 posts

Living with peripheral neuropathy

Jim7bo
Jim7bo

Hi all neuropathy people

I know your Pain and despair with this crazy ailment

I have lived the angst with you all but could not focus to contribute to the forum

After trying nearly everything I am now doing a mindfulness course

I have chronic peripheral neuropathy in my feet and legs legs up to waist level

I do not know how some of you are so strong to cope with other complications as well as my constant pain with above is more than enough for me

I will compile my history living with pain

It will take a while but maybe it can give you some consolation

Looking forward to sharing

PS just back from 20 kilometer ride on my electric trike on our local Greenway

Stiff and painful as I write but the cycle focusses the mind for a while when you are one with nature

17 Replies
oldestnewest

Thank you for sharing.

Im in constant terrible pain too.

Going to try acupuncture next.

Hopinggh

Jim7bo
Jim7bo
in reply to Hopinggh

Tried acupuncture

Needling do not help me

Let me know if it helps you

Hopinggh
Hopinggh
in reply to Jim7bo

Thank you so much for that info.

I will post on here if it works.

I understand i need to devote quite some time for this to.work, according to the practioners i spoke with.

Did you go more than once ?

Thank you so much.

This is one of my last hopes. Next would be medical marijuana and cymbalta.

Have a great day !

Hopinggh

Jim7bo
Jim7bo
in reply to Hopinggh

Hi

Good to share

Have been to acupuncture a number of times

Therapist said you have to go on long term before results kick in

I honestly did not get any relief

Cymbalta to many side effects

Medical cannabis may help relax but not effective for my pain

I am impressed with research on hemp juicing

Seems better than med cannabis for pain due to a very small legal amount of THC

I am ordering some today

Keep smiling gday to u too

Hopinggh
Hopinggh
in reply to Jim7bo

Good morning, Jim7bo !

Thank you so much for your kind response.

From all the answers im getting, it seems acupuncture not a sure thing. Everything seems to come with hardships, all the remedies out there for this.

Im afraid to try any drugs. Thanks for your opinion, which i share.

I tried Cbd, "Heal," no THC, for two months. It was kicking in after a few weeks, but i was, also, very light headed, almost dizzy, and tired from it. I tried another formula of Cbd, "Metabolize," from the same company, Kats, with it and i felt more energized and even euphoric. I felt less pain as time went on, but i couldnt afford two Cbds and, as we know, its expensive.

Looking back, i think i should have stayed on that regimen. I was improving. That was last Spring. Now, i feel im getting worse and the Palmitoylethanolamide ive been taking for six weeks now at 1200 mgs a day has only made me dizzy tired and I've gained five pounds.

Kats advised that the tired feeling should subside after a while. Maybe i will go back to it.

The Metabolize is made from Hemp Seed Oil, .83 mg of Cbd per drop, contains Cbd and Cbda.

Heal has more Cbd. The Kats website will provide all the info.

Which Cbd, may i ask, are you ordering and have you tried it before ?

Im.afraid of THC long term effects even in small amounts. But, i would try it if it works.

I thought they call it medical marijuana if there is THC and, in the USA, you need a government card to get it, which i am strongly considering.

Yes, keep smiling and have a nice day !

Good luck !

Hopinggh

In addition, i just remembered i tried St.Johns Wort several years ago ,Hypericum Perf. 30x, which felt very similar to Cbd, the dizzy, happy feeling. It lifted quite a bit of pain after a very short time. I stopped because i read it has dangerous interactions with alot of things. As time went on, i tried it again two times and it had absolutely no reaction !?This was very least costly of all remedies or supps or vitamins ive taken. I read it is recommended to take small breaks from it as well every few weeks.

Jim7bo
Jim7bo
in reply to Hopinggh

Yea life is complicated

I will post when I have tried the freeze dried organic supplement

Chemicals are killing us

That's why I'm trying a natural way if possible

Cheers

Hopinggh
Hopinggh
in reply to Jim7bo

Cheers !

Sounds great !

Kats products organic too.

Routing for you and hope it works !

Hopinggh

Jim7bo
Jim7bo
in reply to Hopinggh

let me digest what you have written

not feeling good this morn

keep positive

Arc1941
Arc1941
in reply to Jim7bo

Tried CBD no improvement but acupuncture seems to help hard to measure though

Arc1941
Arc1941
in reply to Hopinggh

Tried acupuncture seems to help but still not sure, pressure changes in weather seem to impact pain levels, although my doctor rolls his eyes at this. But he's young....

Hopinggh
Hopinggh
in reply to Arc1941

Hi ! Arc1941,

Thank you so much !

I plan to try acupuncture. I agree on the weather. For me, i feel pain is less in less humid and cooler weather.

The palmitoylethanolamide ive been taking over two months now may be helping a little. It is hard to tell when you 're always in pain. It is always at its worst and awful at night.

I am feeling a bit better too . Never thought it is due to better weather. Could be a combo of the above.

Thank you for your email and good luck to you !

Hopinggh

I would be interested in reading your history of living with pain. There seems to be no help in our area of how to cope with 24/7 pain except offer you medication which causes another host of symptoms. Look forward to hearing from you x

Jim7bo
Jim7bo
in reply to Karjade

Best to you

Will try and help when I canx

Hello,

Thanks for sharing. I'm always on the lookout for ideas to help with the pain of neuropathy. Mindfulnes, meditation or hypnotherapy did not help me. The pain is just awful. I've found the usual medications have various side effects. I haven't tried CD oil yet. All the different types seem confusing and various side effects have been described.

Hi you seem to be stonewalled like most sensory neuropathy sufferers

CBD oil may help you

However you must source reputable makers

I have changed just 2 days ago to juiced organic hemp contains CBD a Trialing it as it is organic and supposed to be more effective

No side effects so far

Yes how do we stand the pain?

Rgds

Thanks for sharing. I too suffer from horrible full body pain. Been suffering from Multi-Sensory Axonal Polyneuropathy and myriad issues such as spacticity, dysphagia.....now breathing, digestion, posture are so bad I can barely sit up let alone walk. Also affecting my heart. Looking at Autonomic Neuropathy and/or Multiple System Atrophy. I have tried it all...tramadol, gabapentin, baclofen and none help. I did start medical marijuana (CBD with THC) it offers some temporary relief but not a solution. I feel totally lost and alone. I don't have a dedicated neurologist after seeing 6 of them in past 18 months and all had differing opinions on movement disorder (ALS/MS/Parkinsons). I have no help just keep getting new prescriptions while I wait to see another neurologist as I need a case drafted for further treatment with specialists at University Health Network. I try physio, massage and occupational therapies but now to weak and sore to do much of anything. Does anyone have suggestions on treatment centres? Has anyone tried the Mayo Clinic or Cleveland Clinic?

Jim7bo
Jim7bo
in reply to Hooha215

Sympathize with you.I have tried every one of the drugs you mentioned and more and more demoralised with conflicting assessments

I thought I was bad but all I have is constant debilitating pain

I live in Ireland and do not have any idea about treatment centres

Have weaned myself off amitriptyline and other painkillers as they really do your head in

At moment on the THC resin at bedtime to help me sleep with burning feet and legs

I take zaldiar in morning 2

B12 tab

1 teaspoon freeze dried organic hemp THC

Prednisole 15 mg prescription

2 zaldiar evening

I was sceptical of mindfulness but seem to feel more accepting

Mindfulness for health

relieving

pain reducing stress by Vidalma Burch

This is a well written sympathetic approach to dealing with pain

Found it initially lying on its own on a public library shelf

Read it and then bought it with CD

I'm giving it a go anyway

What else can we do?

Even though I can't walk with pain

Getting on my electric trike keeps me sane

Try your best be kind to your brain

Best wishes all

You may also like...