NeuroTalk Support Groups - I can't take it anymore...

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - I can't take it anymore... (https://www.neurotalk.org/peripheral-neuropathy/219363-cant-anymore.html)

Thanks guys. I am taking my meds as imstructed, but they don't heal u. My arms and legs feel permanently asleep. Permanent pins and needles in entire legs arms most of my back and abdomen . I just don't understand how this is all happening without dr finding anything. I feel like maybe the discs in my back have moved and they r pinching the cord ( two herniated discs but apparently not doing damage.). Anybody have ideas, what r the docs missing?

Quote:

Originally Posted by canagirl (Post 1138396)

Did you have an ANA test?

Yes, Ana apparently normal

[QUOTE=jurgen975;1138389]

Quote:

Originally Posted by canagirl (Post 1138385)

Dont give up Canagirl i remember that when my symptomes started i had i had my moments dispare.
My symptomes where surtanly not so severe as your ones but i had stiff hand and feet.
Pain in my feet hands when i woke up in the morning,stiffens like wont believe.
Burning pain pain in my nerve endings very similar to a carpal/tarsaltunnel syndrome.
The nerves in my feet were swollen and it felt i was walking on electricity cables.

In both my hand i had tingling while driving my car and my left hand was contracted like a claw after driving.

I had unbelievable pain in my feet the nerves in my feet got very sensitive.
Tingling and paresthesia when walking and when i was sitting down and the tingling when't sometimes on for more then 2 hours after a bit walking.

My symptoms started slow but got severe over the years.

But i can tell now that your body is healing even if you feel your nerves are in a state of inflammation.

For me the burning is gone
Tingling and paresthesia are gone
Pain is gone
What stays at this moment is some numbness and lets see if the numbness stays or will also begone after some years.

When i am going to the gym i will feel some discomfort in my hands and feet but it is not much.

I feel that because your young you have a very good change of healing because you have more stem cells in your bone marrow that people how are older so a better change of healing.

If you have any questions let me hear them

I am very confused by a few of the replies in this thread. Please help me understand, since, apparently, I have been misinformed for 13+ years.
Long story, short, I have been suffering from (idiopathic) SFN (and a few other things) for over 13+ years.

Firstly, I have always understood that SFN never gets better (no such thing as being healed). It only gets progressively worse . If you "get better" and all the pain is gone, it's something else and not truly SFN.

And secondly, mediations like gabapentin (etc) don't "cure" SFN. They are given to help relieve some of the pain.

Reguards

I do believe there is no 100% cure. But I do think some PNs do get better either with lifestyle changes, and/or some supplements.

One can stop progression if a reason is found, and eliminated, and some healing is possible. The compressive neuropathies can heal. I had hypothyroid compression in my wrists, and they did improve with time once that cause was discovered.

Some Toxin/drug PNs may improve if the offending agent is removed. Some diabetic PNs improve with lifestyle changes.
But often they do not go away completely.

Idiopathic just means no cause yet found. It is not really a true diagnosis either, but a just a descriptive term.

The genetic neuropathies remain progressive however, (until research reveals some way to improve them, say perhaps stem cell treatments or a drug, etc).

Quote:

Originally Posted by canagirl (Post 1138331)

The nortriptiline is working now. I can say that my symptoms feel damped but I still have a lot of pain, entire body throbbing, entire body feels numb and heavy when lying down, even my gums and roof of mouth throb and burn. I still can't cope with this even though the pain has been damped down. I know none of u can help me... I just don't know what to do. I can't do this anymore.... There is no piece in my life. I can't lie down that's when everything is at it's worst but sitting or moving doesn't help much. I'm so down, done, hopeless.... I don't want this anymore, I can't handle it anymore

Have you tried acupressure? It is amazing..really works..It has helped me in so many ways..i am hooked on it.

[QUOTE=LMPinkereton;1138462]

Quote:

Originally Posted by jurgen975 (Post 1138389)

I think that my polyneuropathy was cause by a medice called dapsone.
There is not much literature about this except that it is possible that it in reversable but that only happend is some cause after a period of 3 years.I have this for 6 years now.
But a dapsone neuropathy is mostly a motor neuropathy.The professors i visited could not agree if this was a dapsone induced neuropathy or not and they didnt even know if i had a small fiber neuropathy or not nothing showed on my EMG.
Secondly the neuropathy i have is very local.

When i new i had a neuropathy i searched the internet for a cure and i came across a group in the netherlands that used acapuncture/electro ecapuncture and supplements.
So i had more that 100 electro acapuncture treatments but i think 20 where more then enough to kill the worst pain i had.This treatment is very effective for killing pain and i took acethyl L carnitine/alpha lipioc acid for years.
This didnt help so much but i didnt.

Over the years i stopped this supplement.
Even after those 100 electro acapuncture treatments the pain in my feet became worse but slowly demised till zero.
I still had tingling so i tried something new actually its a protocol for people with a CIAP.
I took 2000 IE vitamine D in combination with PEA and PEA cream for 3 weeks and after that a so now and then a pill with vitamine D.
Actually i should do this for a half a year i dont see the need for this.

its in dutch so you have to translate this
http://www.neuropathie.nu/overige/ci...eschermen.html

Welcome Midniteangel. :Wave-Hello:

[QUOTE=LMPinkereton;1138462]

Quote:

Originally Posted by jurgen975 (Post 1138389)

d

That's what I have read too... It just gets worse
. That's what scares me cus I have it so bad already what's going to happen? It's not just my feet or hands etc. it's every inch. Ive been having blind spots in my vision and blury vision for a while now. Saw the eye doc yesterday she said my optic nerve is thinning and referred me to a specialist. Sooo scared about not being able to see. I know glen says he's improved but he's pretty much the only one...ahh. Trying to hang on.

Some can improve if their cause is identified and treated or removed and if the nerves can regenerate which generally take a long time.