advertisement
Reply
 
Thread Tools Display Modes
Old 06-14-2015, 07:37 AM #1
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
Default Permanent pins and needles and tingling

Hi

When I wake up, any muscles that were engaged while sleeping or touching the bed shake and twitch so quickly I feel like I'm having a skin and muscle seizure. Does anybody get this? It last for a while then lessons to normal shaking and twitching . happens everywhere face neck,scalp, arms , legs etc
Also, does anybody have permanent pins and needles and tingling in lower legs/ feet and lower arms/ hands? I mean all day everyday? Has anybody had this improve? I'm so scared...

Any part of my body that is being used will go into overdrive twitching, tingling , pins and needles etc. ex. If I sruntch my face up ( I often make funny faces at my son when we r being silly) my face goes into such crazy fast twitching mode it's like having a seizure. Along with extra tingling , pins and needles etc. does this happen to anyone else?
I just feel like my sensations are so much more widespread than others on here and much higher in severity. I feel like since us the case there is no chance of recovery. What r the chances of every nerve in my body healing?

Last edited by canagirl; 06-14-2015 at 08:02 AM.
canagirl is offline   Reply With QuoteReply With Quote

advertisement
Old 06-14-2015, 10:28 AM #2
zkrp01 zkrp01 is offline
Member
 
Join Date: Mar 2014
Posts: 550
10 yr Member
zkrp01 zkrp01 is offline
Member
 
Join Date: Mar 2014
Posts: 550
10 yr Member
Frown An apology

Quote:
Originally Posted by canagirl View Post
Hi

When I wake up, any muscles that were engaged while sleeping or touching the bed shake and twitch so quickly I feel like I'm having a skin and muscle seizure. Does anybody get this? It last for a while then lessons to normal shaking and twitching . happens everywhere face neck,scalp, arms , legs etc
Also, does anybody have permanent pins and needles and tingling in lower legs/ feet and lower arms/ hands? I mean all day everyday? Has anybody had this improve? I'm so scared...

Any part of my body that is being used will go into overdrive twitching, tingling , pins and needles etc. ex. If I sruntch my face up ( I often make funny faces at my son when we r being silly) my face goes into such crazy fast twitching mode it's like having a seizure. Along with extra tingling , pins and needles etc. does this happen to anyone else?
I just feel like my sensations are so much more widespread than others on here and much higher in severity. I feel like since us the case there is no chance of recovery. What r the chances of every nerve in my body healing?
I have been trying to get you to slow down and I'm sorry. I can hope that you are in an acute phase or have a systemic need like hydration or a mineral deficiancy. I have pins and needles from knees down and numbness in toes but the sensations are more of an aggravation. I think you are on a downward spiral in your thinking as far as every nerve in your body having to heal. Has a Neurologist told you this?
zkrp01 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (06-23-2015), canagirl (06-15-2015)
Old 06-14-2015, 11:22 PM #3
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
Default

QUOTE=canagirl;1148246]Hi

When I wake up, any muscles that were engaged while sleeping or touching the bed shake and twitch so quickly I feel like I'm having a skin and muscle seizure. Does anybody get this? It last for a while then lessons to normal shaking and twitching . happens everywhere face neck,scalp, arms , legs etc
Also, does anybody have permanent pins and needles and tingling in lower legs/ feet and lower arms/ hands? I mean all day everyday? Has anybody had this improve? I'm so scared...

Any part of my body that is being used will go into overdrive twitching, tingling , pins and needles etc. ex. If I sruntch my face up ( I often make funny faces at my son when we r being silly) my face goes into such crazy fast twitching mode it's like having a seizure. Along with extra tingling , pins and needles etc. does this happen to anyone else?
I just feel like my sensations are so much more widespread than others on here and much higher in severity. I feel like since us the case there is no chance of recovery. What r the chances of every nerve in my body healing?[/QUOTE]

Canagirl... I've been frequently reading your posts but haven't yet reached out, partly because I, for one, can't offer what you want to hear... that it will get better. At least I can tell you that you are not alone. It seems to be something you need to hear. I have the burning, stabbing, pins and needles, tearing, stabbing pain EVERYWHERE in my body. Mine started after a bout with a horrible virus and spread quickly, and there I've stayed now for several years. I have been tested, literally, for everything under the sun, including a paraneoplastic syndrome, but it eventually circled back around to the virus after blood tests revealed that even after several years it was still active. Recently, after consultation with a new neurologist, it has been suggested that I have central pain syndrome. I hardly recognize myself with the pure grief that I've experienced because of how it has changed my life. I do persevere through it and have relented to taking the medication necessary to help me just survive this. It isn't anything anybody is capable of understanding unless you've experienced it, and the anger and isolation it has created between me and everybody else around me is something else I have to fight. I work hard to maintain my family, work and (minimal) social life, though everything has suffered. I refuse to let this unexplainable, unimaginable pain rob me of absolutely everything, and with time maybe you'll come to a place emotionally where you can dig deep to accomplish that. I takes a lot of courage. I, too, completely panicked when it all began four years ago, and especially struggled with the suggestion from a doctor or two that it may have all been produced from "anxiety." Of course I have anxiety... my body burns from head to toe! I also had severe, severe nausea, fatigue and muscle spasms which continue today but have improved over time. I have "good" days occasionally where the pain is maybe only a 6 (ironic), and I try to seize those days to do the things I like and enjoy them as best I can. I'm a stranger, but I just wish I could hug you because I understand your fear and grief. Maybe just knowing this will help in some small way.
heb1212 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (06-23-2015), canagirl (06-14-2015), zkrp01 (06-15-2015)
Old 06-14-2015, 11:32 PM #4
Marie33's Avatar
Marie33 Marie33 is offline
Member
 
Join Date: Sep 2012
Location: Long Island, NY
Posts: 180
10 yr Member
Marie33 Marie33 is offline
Member
Marie33's Avatar
 
Join Date: Sep 2012
Location: Long Island, NY
Posts: 180
10 yr Member
Default Respond to your email - SFN

[QUOTE=canagirl;1148246]Hi

When I wake up, any muscles that were engaged while sleeping or touching the bed shake and twitch so quickly I feel like I'm having a skin and muscle seizure. Does anybody get this? It last for a while then lessons to normal shaking and twitching . happens everywhere face neck,scalp, arms , legs etc
Also, does anybody have permanent pins and needles and tingling in lower legs/ feet and lower arms/ hands? I mean all day everyday? Has anybody had this improve? I'm so scared...

Any part of my body that is being used will go into overdrive twitching, tingling , pins and needles etc. ex. If I sruntch my face up ( I often make funny faces at my son when we r being silly) my face goes into such crazy fast twitching mode it's like having a seizure. Along with extra tingling , pins and needles etc. does this happen to anyone else?
I just feel like my sensations are so much more widespread than others on here and much higher in severity. I feel like since us the case there is no chance of recovery. What r the chances of every nerve in my body healing?

Hi Canagirl
I'm sorry your having such a hard time!
I received your email(s). I wrote a reply email to you about a month ago. Apparently you haven't received it. I'm having a hard time responding to you. I would like to talk to you and answer any questions. I do not want you to think I'm ignoring you. Your profile says you do not accept emails. let me know how to "contact" you.
Sincerely
Marie
Marie33 is offline   Reply With QuoteReply With Quote
Old 06-15-2015, 12:00 AM #5
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
Default

[QUOTE=Marie33;1148418]
Quote:
Originally Posted by canagirl View Post
Hi

When I wake up, any muscles that were engaged while sleeping or touching the bed shake and twitch so quickly I feel like I'm having a skin and muscle seizure. Does anybody get this? It last for a while then lessons to normal shaking and twitching . happens everywhere face neck,scalp, arms , legs etc
Also, does anybody have permanent pins and needles and tingling in lower legs/ feet and lower arms/ hands? I mean all day everyday? Has anybody had this improve? I'm so scared...

Any part of my body that is being used will go into overdrive twitching, tingling , pins and needles etc. ex. If I sruntch my face up ( I often make funny faces at my son when we r being silly) my face goes into such crazy fast twitching mode it's like having a seizure. Along with extra tingling , pins and needles etc. does this happen to anyone else?
I just feel like my sensations are so much more widespread than others on here and much higher in severity. I feel like since us the case there is no chance of recovery. What r the chances of every nerve in my body healing?

Hi Canagirl
I'm sorry your having such a hard time!
I received your email(s). I wrote a reply email to you about a month ago. Apparently you haven't received it. I'm having a hard time responding to you. I would like to talk to you and answer any questions. I do not want you to think I'm ignoring you. Your profile says you do not accept emails. let me know how to "contact" you.
Sincerely
Marie
Hi Marie,
Thanks for responding. I had no idea my profile said I don't accept emails and I haven't received ur emails. Please pm me!
canagirl is offline   Reply With QuoteReply With Quote
Old 06-15-2015, 12:03 AM #6
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
Default

Thank u to everybody that takes the time to respond. I really do appreciate it. The responses do help and I do try to take what you in and try my best to heed the advice. It's just so hard! I know you all know this. I just keep needing to be reminded and need to hear the stories ( bad and good) of others
canagirl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
zkrp01 (06-15-2015)
Old 06-15-2015, 12:25 AM #7
Marie33's Avatar
Marie33 Marie33 is offline
Member
 
Join Date: Sep 2012
Location: Long Island, NY
Posts: 180
10 yr Member
Marie33 Marie33 is offline
Member
Marie33's Avatar
 
Join Date: Sep 2012
Location: Long Island, NY
Posts: 180
10 yr Member
Default SFN sucks

Quote:
Originally Posted by heb1212 View Post
QUOTE=canagirl;1148246]Hi

When I wake up, any muscles that were engaged while sleeping or touching the bed shake and twitch so quickly I feel like I'm having a skin and muscle seizure. Does anybody get this? It last for a while then lessons to normal shaking and twitching . happens everywhere face neck,scalp, arms , legs etc
Also, does anybody have permanent pins and needles and tingling in lower legs/ feet and lower arms/ hands? I mean all day everyday? Has anybody had this improve? I'm so scared...

Any part of my body that is being used will go into overdrive twitching, tingling , pins and needles etc. ex. If I sruntch my face up ( I often make funny faces at my son when we r being silly) my face goes into such crazy fast twitching mode it's like having a seizure. Along with extra tingling , pins and needles etc. does this happen to anyone else?
I just feel like my sensations are so much more widespread than others on here and much higher in severity. I feel like since us the case there is no chance of recovery. What r the chances of every nerve in my body healing?
Canagirl... I've been frequently reading your posts but haven't yet reached out, partly because I, for one, can't offer what you want to hear... that it will get better. At least I can tell you that you are not alone. It seems to be something you need to hear. I have the burning, stabbing, pins and needles, tearing, stabbing pain EVERYWHERE in my body. Mine started after a bout with a horrible virus and spread quickly, and there I've stayed now for several years. I have been tested, literally, for everything under the sun, including a paraneoplastic syndrome, but it eventually circled back around to the virus after blood tests revealed that even after several years it was still active. Recently, after consultation with a new neurologist, it has been suggested that I have central pain syndrome. I hardly recognize myself with the pure grief that I've experienced because of how it has changed my life. I do persevere through it and have relented to taking the medication necessary to help me just survive this. It isn't anything anybody is capable of understanding unless you've experienced it, and the anger and isolation it has created between me and everybody else around me is something else I have to fight. I work hard to maintain my family, work and (minimal) social life, though everything has suffered. I refuse to let this unexplainable, unimaginable pain rob me of absolutely everything, and with time maybe you'll come to a place emotionally where you can dig deep to accomplish that. I takes a lot of courage. I, too, completely panicked when it all began four years ago, and especially struggled with the suggestion from a doctor or two that it may have all been produced from "anxiety." Of course I have anxiety... my body burns from head to toe! I also had severe, severe nausea, fatigue and muscle spasms which continue today but have improved over time. I have "good" days occasionally where the pain is maybe only a 6 (ironic), and I try to seize those days to do the things I like and enjoy them as best I can. I'm a stranger, but I just wish I could hug you because I understand your fear and grief. Maybe just knowing this will help in some small way.

Hi heb1212
I'm sorry you are having so much pain and suffering. I understand your pain. I also have widespread neuropathic pain. I thought I was the only one who had it all over. A lot of what you say sounds like me. This beastly thing scares me too! It has ruined my life. Mine is idiopathic, it was dx by punch skin biopsy. The only strange thing (according to all my neuro-muscular doctors) is that I do not have any numbness at all. It all started in March 2011 with pins and needles in my calves and burning under both feet..Boy little did I know what I was in for. I am otherwise "healthy" , but life as I once knew it, is gone ...I can not even work anymore (I miss my job)...
Over the past 4 years it spread to my arms, hands, fingers, torso, scalp, mouth , lips and throat, etc. Burning and yes, surges of buzzn starting in my torso, through -out my body going down my arms and legs! Its awful!!! It feels like my whole- body-electrical system is out of whack. when the burning starts, I also get "over-heated" feelings. last year I developed "tinnitus". I hear a high pitch sound while I'm having buzzing and burning!! No one understands what I'm feeling. I look well. I too, feel lonely and isolated. Even my Doctors don't know whats going on with me..Its frustrating and scary living this way. I hear the word "progression" and it scares me...
How was your Neuropathy diagnosed? And what kind of N do you have? Are your large nerves involved? sigh..sorry for ranting, I just had to vent.
Hugs
Marie
Marie33 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
canagirl (06-15-2015)
Old 06-15-2015, 12:58 AM #8
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
canagirl canagirl is offline
Member
 
Join Date: Mar 2015
Posts: 503
8 yr Member
Default

Thanks so much heb1212 and narie33, it helps to know somebody understands this.

Marie, I don't have numbness either. When I start getting my compression sensation ( feels like I'm wearing bodysuit that gets tighter and tighter) I FEEL numb but I'm not. I can touch my leg and still feel my hand.
canagirl is offline   Reply With QuoteReply With Quote
Old 06-15-2015, 03:52 AM #9
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
8 yr Member
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
8 yr Member
Default

Quote:
Originally Posted by canagirl View Post
Thanks so much heb1212 and narie33, it helps to know somebody understands this.

Marie, I don't have numbness either. When I start getting my compression sensation ( feels like I'm wearing bodysuit that gets tighter and tighter) I FEEL numb but I'm not. I can touch my leg and still feel my hand.
My neuropathy has been constant since it started in januarary. it started out as pins and needles, but eventually experienced all the kinds that ever one has, stinging, prickling, tickling,sensitivity, twitching,,etc.
Numbness is usually nerve damage, like those with diabetes, but it does happen.
i also have loss of sensation and altered sensation in my right hand as well, maybe thats what your having, some reduced sensations.
Neuroproblem is offline   Reply With QuoteReply With Quote
Old 06-15-2015, 09:21 AM #10
janieg's Avatar
janieg janieg is offline
Member
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
Default

Quote:
Originally Posted by canagirl View Post
I FEEL numb but I'm not. I can touch my leg and still feel my hand.
The best way I've heard the "altered sensation" I have in the toes on my right foot described is that they feel like my socks are bunched up. When it first started, I found myself continually checking my socks. It's kind of like a numbness, but it's not. I still have full sensory perception in those toes, I just feel something else that's not really there.
janieg is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Pins and needles rhondaroo Spinal Disorders & Back Pain 0 03-11-2013 08:26 AM
pins and needles pixified Thoracic Outlet Syndrome 4 03-23-2011 12:51 PM
pins and needles Tosweet Social Security Disability 1 08-16-2010 05:28 PM
on pins and needles greta The Stumble Inn 31 07-14-2008 04:19 PM
pins and needles Melina Trigeminal Neuralgia 12 07-12-2008 01:03 PM


All times are GMT -5. The time now is 01:03 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.