Jump to content

Neuropathy support group... :-)


[On...]

Recommended Posts

So my story is strange and weird.. I cold turkeyed 23 days ago and early I would have burning neuropathy after a few days off but it would come and go like a wave.. and it was usually in my upper body and symmetrical.. last week my right hand slowly started burning and got worse a few days later. Then for a day or two the parasthesia traveled up my arms and across my chest and down the other arm.. now here is where I sit and here is my question.. what is your neuropathy like? Now today my right hand seems slightly swollen and I get pins and needles off and on... not so much intense burning but this morning when I opened my eyes I was burning in my entire upper body.. does anyone have symptoms only in one hand or on one side that is more intense? Just share about your pins and needles/ neuropathy/ burning please.. thanks you so much!!
Link to comment
Share on other sites

  I am still on 3 drugs so you are way ahead of me as far as being off, well done.  I started developing the burning in my feet first about 2 yrs ago when I tapered from 20 mg. of V down to 15.  Then I had to have another back surgery, a heart test with chemicals to speed up heart and also dye in MRI.  The neuropathy has now progressed to my hands, arms, mouth and lips, also the pelvic area.  My stomach also burns but Drs. insist neuropathy doesn't go to stomach. We all know otherwise.  All I can say is I am in agony and have tried gabapentin, lyrica and they made it worse.  Don't know what to do at this point as Drs. don't have a clue.  I now need surgery for hemorrhoids and I feel w/d has affected this area also.  I pray they can find something to help this as I can't hang on much longer.  Sorry you are suffering also. 
Link to comment
Share on other sites

I was on 2.5 mg clonazepam/day for 25 years and have been off for 20 months after a 1 year taper.  Among other post-withdrawal symptoms, I frequently have a burning skin sensation on my legs.  For a long time I thought it was the result of neuropathy stemming from the 4 lumbar surgeries I've had.  However, after noticing that the skin sensations flared up following episodes of head pressure and dizziness, which are most likely benzo withdrawal related, I concluded that the burning skin is not an indication of peripheral neuropathy but rather another manifestation of benzo effects on the brain.  For me, the head pressure and burning skin episodes are becoming slightly less frequent, though I still have a long way to go.  I hope you find this info relevant and I hope it helps you.  Best of luck.
Link to comment
Share on other sites

Today is day 30 and this pain is getting worse.... the neuropathy/ pins and needles/ burning is constant and my skin feels awful... does anyone have an experienced with your nerve getting worse on a daily basis during the first month or two? Thanks 🙏
Link to comment
Share on other sites

  I have it everywhere, mostly feet, hands arms mouth and tongue and pelvic area.  Its awful and now Dr. is cutting my meds some.  I am in agony everyday and it gets worse.  Sorry I can't come up with a solution for you.  I keep feet and arms on gel packs all day.  Helps some.  HOpe you feel better. 
Link to comment
Share on other sites

I have it in my feet and my left calf.  It started when I was tapering valium before I went to rehab.  It was very slight in a few toes then.  It has gotten progressively worse.  And now my feet and hands are often very cold.  I was prescribed gabapentin but was afraid to regularly take it.  I took tylenol every day for about 18 months but it didn't really help so I stopped it.  it used to come and go but it doesn't go now.  I just had an EMG and was told it is not related to my lumbar spine issues but is neurological in origin.  Unknown cause.  It does not keep me up and when I am distracted I do not focus on it.

 

Carol

Link to comment
Share on other sites

Thank you for responding. Mainly mine is my upper body. Both arms but the right hand and right side is worse. Even my eyes burn sometimes.
Link to comment
Share on other sites

Mine is in both lower legs and feet. Awful feeling--

 

I am taking a small dose of ALA (alpha lipoic acid) but it is not helping.

 

How long have you had yours?

Link to comment
Share on other sites

It’s been going on daily for over two weeks now.. it came and went early after my cold turkey. It is really painful I must say.. just very uncomfortable and painful in my arms chest back.. sometimes face and mouth.. legs come and go..
Link to comment
Share on other sites

took low dosage of Ativan for a relatively short time. hit tolerance in a very short time.

stopped completely C/T in July 2017.

 

Still have weird burning/tingly sensations over the body.  never had them prior to Ativan use.  they are pretty much always there just depends on the potency on a given day.  fingers (tips and the base of the finger mostly) left calf, left thigh, sometimes right knee.  the worst place for me is in the face.  its mostly near the cheeks/mouth area and sometimes forehead.  the best way to describe it is like a tightness or slightly tingly.  I know it is nerve related in the face for me.  if I let facial hair come in a little bit its much more noticeable.

 

I even at random times but fairly infrequently get cold/wet spots on my skin...especially on my feet/ankle/near mouth.  it's extremely weird and I would have never believed its possible if you would have offered me a million dollars.  Im sure one day it will just disappear.

 

its basically my last remaining symptom but is extremely annoying and almost always there in some capacity.  I think a lot of these symptoms mimic MS, ALS, etc.  I really believe it's just the nerves.

Link to comment
Share on other sites

  • 2 weeks later...
I had it in my feet (vitamin b really helped but not many can tolerate and I've since learned bad for liver)--that went away. Now it's in my hands--i'm not sure if it's parathesia--just VERY sensitive to touch at the finger tips---a bit numb--skin dry and wrinkled on hand too--very unpleasant--it went away for a long time--now it's back going on 6 weeks.
Link to comment
Share on other sites

  • 2 months later...
Bumping this thread.  Burning is now all over.  I don’t see how I can live like this much longer.  Anyone have  any ideas.  Drs. Are worthless for me.  Am truly terrified now as I see no end.  Help.
Link to comment
Share on other sites

I’ve had parasthesia since ct the drug- pins and needles in both hands and feet. Intensity always waxed and waned. Occasionally get burning skin along my back and arms that comes and goes mostly based on whether I’m feeling anxious or haven’t slept. I’ve tried low doses of Gabe pen tin and noratryptaline but they didn’t seem to work. Always wondered if I should’ve gone up in dose but now I’m just so leary of taking drugs - I mostly live with the pain. Thanks for starting this thread— helps to know I’m not the only one still battling this symptom.
Link to comment
Share on other sites

I have paresthesias mainly in my fingertips. Sometimes my nerves fires a lot but sometimes my fingertips are quite calm. Is this something benzos does or something else? Anyone else?
Link to comment
Share on other sites

So my story is strange and weird.. I cold turkeyed 23 days ago and early I would have burning neuropathy after a few days off but it would come and go like a wave.. and it was usually in my upper body and symmetrical.. last week my right hand slowly started burning and got worse a few days later. Then for a day or two the parasthesia traveled up my arms and across my chest and down the other arm.. now here is where I sit and here is my question.. what is your neuropathy like? Now today my right hand seems slightly swollen and I get pins and needles off and on... not so much intense burning but this morning when I opened my eyes I was burning in my entire upper body.. does anyone have symptoms only in one hand or on one side that is more intense? Just share about your pins and needles/ neuropathy/ burning please.. thanks you so much!!

 

Hello Onescareddude -

 

My neuropathy first started while I was still on Valium (5 years prior to taper) when I was given Fluoroquinolone Cipro. Originally it was the pins & needles & burning sensation. After a couple of weeks it faded into very mild, tolerable pins & needles sensation, until my CT, where it became brutal again. Turns out that the Valium was actually masking the neuropathy.

 

I have these sensations in my lower legs, hands & fingers, face tongue & lips. The numbness in may face is mostly on the right side even to this day. Still have pins, needles & numbness mildly in my face, lips & tongue. My feet, lower legs & hands are still constant & very annoying if I think about it.

The intense burning has been gone for awhile, but it will come back when I get over stimulated only to a lesser degree. So it does slowly get better.... not sure when or if it ever goes away... :-[

 

I would like to hear about others who CT & had these neurological issues for years & eventually healed...anyone know of any of these cases?

Link to comment
Share on other sites

Very discouraging as I feel I cannot survive this.  I have so long to go and am totally incapacitated with this all over burning.  I am hopeless and the panic and fear overtake me.  So sorry I say this but I see no way forward for me.  Horrible way to survive day to day. :'(
Link to comment
Share on other sites

Very discouraging as I feel I cannot survive this.  I have so long to go and am totally incapacitated with this all over burning.  I am hopeless and the panic and fear overtake me.  So sorry I say this but I see no way forward for me.  Horrible way to survive day to day. :'(

 

Read your tag line. You've got this! You are stronger than you think. Please know you are in my prayers and I am praying for some relief for you when you lie down to sleep tonight. And I pray your pain disappears completely very soon.  :smitten:

Link to comment
Share on other sites

I have fingertip pain too. Finally went to rebound rheumatologist, not convinced the ones I’d seen were correct in saying I was fine. My ANA was high and my hand/finger sx have been non stop since I hit 3mg. Anyway, dr told me other numbers did not indicate AI issue not did physical exam so I feel, at this point, I have to accept it and blame it on taper. It’s not a much talked about s/x (I also have very cold hands) but I don’t want to keep doctor shopping and get a diagnosis! It’s all just very disconcerting and upsetting. I’m sorru for anyone suffering from these mystery symptoms. They feel so very real. It’s hard. Thanks for listening.
Link to comment
Share on other sites

Hey guys, I will be at the 1 year mark May 19th and have had burning the entire time. The first couple of months after I jumped off Klonopin (Clonazepam) were by far the worst.  My head, face, neck, arms and legs would burn. One day it may be that the left side of my body was on fire while the other half was freezing cold. If I took a shower I would burn for an hour and a half afterward, now after a shower it is down 15 minutes and no where as close to as painful.  The things I did that I found helped were Vapo Rub on my face and arms, I would provide a great cooling sensation.  I also tried.. shoot what’s that stuff that you put on after a sun burn? You guys know what I mean, it helped but I found the Vick’s Vapo Rub was far better. I have 4 cold packs that I literally use to rotate all day in the fridge.  Now I only use them when I have sporadic bad days a month, they really helped as well. You probably already know that you have to stay away from any processed foods, anything with preservatives, anything canned and no bread. I had to cut out gluten completely. No caffeine, no sugar etc. A lot of us develop histamine intolerance.  If you haven’t read up on it check it out you will be surprised as to how many foods can cause the burning. Then you can eliminate those that are killing you one by one, it’s brutal but all that crazy burning just because you even had a small amount of nuts or your morning coffee is crazy. The only thing I drink is water and just last week I had my first tea.  For the women on here hormones play a huge role as well, get your levels checked for estrogen and progesterone to find out if you are estrogen dominant. If you are then that is why your burning is so bad at night and in the early morning, why you may be losing hair, gaining weight around your middle and so much more. Benzo’s are evil but our bodies are micraculous just wish we all didn’t have to be in so much pain through our slow path to healing. Hope this was helpful, cheers everyone
Link to comment
Share on other sites

  • 4 years later...
  • 2 weeks later...
Unfortunately best thing to do is waiting it out. It has also flared for me really bad! I had that in the past but was long gone/95% improved and now happened again in my relapse. It will go away. But hurts as heck, I know.
Link to comment
Share on other sites

  • 1 month later...

I am 4mths I and have burning all over. More serious in left thigh, feet and back of my arms. Hope it clears up soon.

 

Link to comment
Share on other sites

  • 4 weeks later...
These posts look pretty old. But, I wonder if anyone who had the bad burning has gotten any better over the years. I am going mad with burning skin and what feels like mini strokes. Migraines that start with an aura with chunks of the room missing. This is really frightening.
Link to comment
Share on other sites

×
×
  • Create New...