NeuroTalk Support Groups - Permanent pins and needles and tingling

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

- - Permanent pins and needles and tingling (https://www.neurotalk.org/peripheral-neuropathy/221579-permanent-pins-needles-tingling.html)

Quote:

Originally Posted by janieg (Post 1148473)

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.

My right hand experiences similar thing, it seems when im touching something its like its either reduced sensation, or its altered sensations, its wierd that i cant describe it.

Quote:

Originally Posted by canagirl (Post 1148246)

H

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?

Yes this happens to me. I don't feel like I'm having a seizure though. I started taking videos to show my doc of all the twitching because it hasn't happened in his office and he always asks me if anything visible is happening. So... this time I have some footage of some wild wigging out my body does.

The thing that makes me the most upset is when I laugh, I have to stop laughing because sometimes I get lightheaded like I could pass out and my stomach muscles go insane with twitching from the exertion. It doesn't happen all the time though. I think it has to do with how bad my autonomic stuff is at any particular time.

Quote:

Originally Posted by Marie33 (Post 1148428)

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. :hug:

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 :hug:
Marie

Marie... thank you so much for your hug of support and understanding. Really, I think we're an odd bunch even within the peripheral neuropathy world. I'm so tired of reiterating my story to doctors -- always trying desperately to find out what's caused this -- only to be asked the same questions: What's your pain like on a scale of 1 - 10? 9. Where does it burn? Everywhere? Yes, EVERYWHERE. How discouraging that they can't even fathom it. Mine, too, started with intense burning in my toes, then feet, and tingling in my claves. It progressed to my whole body within a couple months, including my scalp, face, mouth, tongue, gums, throat, inner ears. I also have the ear ringing, but that only started this year. It's both a high pitched ring and a rumble sound. I also look completely "healthy." People who know of my challenge always tell me, "Well, you look great!" Not really... I've let myself go because the challenges of just getting through the day are all I can handle. I also don't have any numbness. It's just a constant burning and other types of paresthesia. The thing is, my skin biopsy was considered normal. They nerve fiber densities were within range at the ankle and just barely at the thigh; but, there was "occasional" axonal swelling of "unclear clinical significance." So, they have suggested I have a central pain syndrome likely triggered by the prolonged viral activity I experienced. Vent all you want... we absolutely need each other for that. I only periodically check in on the threads here, though, because I find that I become overwhelmed sometimes. Day by day and by God's grace I make my way through this life changing experience. It's humbled me greatly.

Hi Canagirl, I am in the same boat. I am affected head to toe including face. In addition I have UC flare (bloody bowl movements) to deal with. My eyes even bother me as I have Blepharitis. All these happened in just last year. I was healthy before. I am not sure I can get better either I am praying for you and me both.

Quote:

Originally Posted by heb1212 (Post 1148808)

It progressed to my whole body within a couple months, including my scalp, face, mouth, tongue, gums, throat, inner ears. I also have the ear ringing, but that only started this year. It's both a high pitched ring and a rumble sound. I also look completely "healthy." People who know of my challenge always tell me, "Well, you look great!" Not really... I've let myself go because the challenges of just getting through the day are all I can handle. I also don't have any numbness. It's just a constant burning and other types of paresthesia. The thing is, my skin biopsy was considered normal..

I'm so sorry. Thank you for sharing this. I too have it in all those places - scalp, jaw, inner ears, throat etc. At the start of all of this, I had wet, hot, warm sensations inside my ears, a roaring case of tinnitus, and a balance disorder (disequilibrium - the floor moves when I walk). I even lost my hearing for 48 hours in one ear - my hearing got turned up to 11 (hyperacusis), after that I heard sound in different two tones with a time delay (diplacusis). This coincided with my worst period of burning.

I have body-wide burning with a normal skin biopsy (2 punches in the leg), large fiber damage in one of my legs, and sensory deficits in my arms (they are not numb, but are dulled and can't sense temperature). It is very frustrating indeed to not find the cause. Hang in there. Do you have any issues with swallowing?

Quote:

Originally Posted by madisongrrl (Post 1149177)

Madison Girl... how brave we have to be. Thanks for sharing.
Peace and Grace

Hehehe....I have what I call "pretend" rocks in my shoes all the time. Take my shoe off and there are no rocks in my shoe.

I have tingling all the time. I also have some loss of sensation.

"Normal" Skin Biopsy-No SFN?

[QUOTE=madisongrrl;1149177]I'm so sorry. Thank you for sharing this. I too have it in all those places - scalp, jaw, inner ears, throat etc. At the start of all of this, I had wet, hot, warm sensations inside my ears, a roaring case of tinnitus, and a balance disorder (disequilibrium - the floor moves when I walk). I even lost my hearing for 48 hours in one ear - my hearing got turned up to 11 (hyperacusis), after that I heard sound in different two tones with a time delay (diplacusis). This coincided with my worst period of burning.

I have body-wide burning with a normal skin biopsy (2 punches in the leg), large fiber damage in one of my legs, and sensory deficits in my arms (they are not numb, but are dulled and can't sense temperature). It is very frustrating indeed to not find the cause. Hang in there. Do you have any issues with swallowing?

Hi Madisongrrl
I'm sorry you are suffern with this type of pain. I get the "roaring" tinnitus and it coincides with my worst period of burning too. I thought I was the only one, mine is exactly like that. (I do not have a balance disorder tho ) Sometimes I get the "high pitch sound-tinnitus" all day long with or with out burning. And sometimes I get horrible "surges" of buzzing from in my gut that runs down my legs with the tinnitus. I do not get any dulled feeling and I have no loss of temperature anywhere.
what do you mean by hyperacusis and diplacusis? Did you get checked by an ear Doctor? Did he dx you with these "things" going on in your ears?

What is mostly disturbing to me is that you say your punch skin biopsy was normal. Are you saying the Doctor(s) are saying you do not have small fiber neuropathy? What do you suffer from? Im sorry for all the questions.
Rewind: I had a punch skin biopsy (2 sites, lower calf and thigh) in 2012 at that time the results were "mild" : Consistent with small fiber neuropathy. My symptoms were anything but mild and continued to progress. In 2013, I had another skin punch biopsy at Mt Sinai Hospital, NYC. It Showed no progression, but result was still "mild SFN".

Fast Forward..I'm getting worse, more pain, tingling, pins & needles, buzzing, burning, stabbing ,poking, itching, (all over inclding face, mouth & scalp) and now I develop tinnitus, etc. March 2015 , I go back to Mt Sinai Hospital (Dr Lan Zhou-Neuro-muscular Doc). She does another punch skin biopsy (3 sites). I was terrified the results would show progression after 2 years. To my surprise the results came back as "Normal, No SFN"!!! I asked the Doc how could this be with all this pain and burning. She could not explain why there was no correlation between my pain and the "normal results". She said there was NO MARGIN FOR ERROR! She said she counted the fibers herself. My missing nerves grew back! The only thing she kept saying was, this was GOOD news. The "injured nerves were healing"! My Biopsy showed improvement, "I was getting better".
As you can imagine I was excited and confused. But I hung on to her (Doctor) every word. That I was healing or getting better. I'm just waiting for my symptoms to"catch up".

After reading your post, I'm not so sure anymore. I'm heart-broken and more depressed. I don't trust or believe these Doctors anymore. I know I still have small fiber neuropathy!! I hate it, It has ruined my life..

Also, what do you mean by you have large fiber damage in one leg, how was this diagnosed? Did you have an EMG or NCS? Were you told you have SFN (small fiber neuropathy)?

If "our" skin biopsy's are "normal" then why do we suffer the way we do...? :(

Hugs to you , Marie

Quote:

Originally Posted by Marie33 (Post 1149448)

Hi Madisongrrl
I get the "roaring" tinnitus and it coincides with my worst period of burning too. I thought I was the only one, mine is exactly like that. (I do not have a balance disorder tho ) Sometimes I get the "high pitch sound-tinnitus" all day long with or with out burning. And sometimes I get horrible "surges" of buzzing from in my gut that runs down my legs with the tinnitus. I do not get any dulled feeling and I have no loss of temperature anywhere.

You are definitely not alone with the tinnitus. Mine was terrible for months on end when all this stuff started. It has gotten better over time and only flares up every now and again.

Quote:

Originally Posted by Marie33 (Post 1149448)

what do you mean by hyperacusis and diplacusis? Did you get checked by an ear Doctor? Did he dx you with these "things" going on in your ears?

So hyperacusis and diplacusis are ENT medical terms. There were not diagnoses, but were symptoms that I experienced 48 hours my left ear went crazy. I heard everything 50x as loud as it should be - just in my left ear. The sound of what I heard was split into 2 tones and had an echoed delay. Then the situation just stopped after that 48 hour period...so I'm tremendously lucky.

Along with that, things feel like they are rocking when I walk or that I'm sometimes walking on a trampoline. I wasn't seen at the ENT until almost 1 year after my symptoms started - which is very, very bad (I can thank my HMO for that one). If you've had a condition for a long time, your eyes make compensations and that makes it harder for the ENT to diagnose the problem. So I was given a waste bucket diagnosis of central vestibular disorder (which means nothing), I was told to do vestibular rehab, I was told to immediately see them if anything crazy happens to my hearing again, and they also kinda said "Doesn't neurology know what caused your symptoms?".

Quote:

Originally Posted by Marie33 (Post 1149448)

What is mostly disturbing to me is that you say your punch skin biopsy was normal. Are you saying the Doctor(s) are saying you do not have small fiber neuropathy? What do you suffer from? Im sorry for all the questions.
Rewind: I had a punch skin biopsy (2 sites, lower calf and thigh) in 2012 at that time the results were "mild" : Consistent with small fiber neuropathy. My symptoms were anything but mild and continued to progress. In 2013, I had another skin punch biopsy at Mt Sinai Hospital, NYC. It Showed no progression, but result was still "mild SFN".

My neurologist at the UW-Madison teaching hospital told me that I have small fiber neuropathy based upon my symptom description and physical. They said that the progression and quickness of the my symptoms was uncommon. They checked all my labs and ordered an EMG. I had some large fiber damage in my peroneal nerve, but they didn't think it was the cause of this.

I had the option to get a punch biopsy or not. They already knew what it was and told me that #1 cause is diabetes and the #2 cause was idopathic. I don't have diabetes...so I am idiopathic. Well it is a little disturbing that my skin punch didn't show anything, but it didn't surprise me either. The worst pain is located in my arms, face, back of head, back of neck and my back. I did ask them to do a skin punch of my arm - where my physical neurological test showed issues.The neuromuscular department said they only take punches of the leg. So that is probably being coded as a "skin disturbance". The did recommend that I see a doctor at the UW Pain Clinic to manage my symptoms.

Quote:

Originally Posted by Marie33 (Post 1149448)

Fast Forward..I'm getting worse, more pain, tingling, pins & needles, buzzing, burning, stabbing ,poking, itching, (all over inclding face, mouth & scalp) and now I develop tinnitus, etc. March 2015 , I go back to Mt Sinai Hospital (Dr Lan Zhou-Neuro-muscular Doc). She does another punch skin biopsy (3 sites). I was terrified the results would show progression after 2 years. To my surprise the results came back as "Normal, No SFN"!!! I asked the Doc how could this be with all this pain and burning. She could not explain why there was no correlation between my pain and the "normal results". She said there was NO MARGIN FOR ERROR! She said she counted the fibers herself. My missing nerves grew back! The only thing she kept saying was, this was GOOD news. The "injured nerves were healing"! My Biopsy showed improvement, "I was getting better".
As you can imagine I was excited and confused. But I hung on to her (Doctor) every word. That I was healing or getting better. I'm just waiting for my symptoms to"catch up".

I'm so very sorry that you are dealing with this. Have a little bit of hope that this could eventually be good news for you. If you nerves are growing back perhaps your symptoms will lag behind the healing and lessen over time. Just hang in there. You must be doing things correctly!!!! Are you doing things like taking supplements, eating well, trying to sleep and manage stress? I bet you are...

Quote:

Originally Posted by Marie33 (Post 1149448)

After reading your post, I'm not so sure anymore. I'm heart-broken and more depressed. I don't trust or believe these Doctors anymore. I know I still have small fiber neuropathy!! I hate it, It has ruined my life..

Also, what do you mean by you have large fiber damage in one leg, how was this diagnosed? Did you have an EMG or NCS? Were you told you have SFN (small fiber neuropathy)?

If "our" skin biopsy's are "normal" then why do we suffer the way we do...? :(

Hugs to you , Marie

Awe, don't let my post depress you! If you are in the idiopathic camp and if your symptoms came on quickly, there is a good chance that symptoms might ease up over time. Some neurologists feel that people who have that style of neuropathy might see some good improvement 5 to 10 years after onset.

I did have an EMG/NCS. I had one before my symptoms came on because my leg wasn't healing after several years of having a burning knee - going through 4 physical therapists and even even receiving PRP thearpy from one of the UW Badgers sports med docs. They thought I had a tendon issue. Turns out symptoms started in that same darn leg and spread to my whole body early in 2014. I guess it wasn't a tendon problem :). I had another EMG/NCS 1 year after symptom onset. The large fiber damage was the same for both tests, so the neuro wasn't concerned that it was part of the SFN picture.

You hang in there!!!! Feel free to message me anytime :hug: