Peripheral Neuropathy

Candy,
Welcome to the HW chronic pain forum, although we're always sad to learn of yet another victim of pain. We're not doctors, but can provide a lot of great support and share experiences. I don't have a lot of time to write now, but I did want to welcome you. Others will come along, too. Do you know what's causing the neuropathy? I have numbness and tingling in both feet, but it stems from compressed nerves in my lumbar spine, but there are other causes of PN. What have your doctors told you? The cause(s) have a lot to do with whether it will get better, but with nerves it is good to try to get answers soon so you can address the problem.

I'll be along to post later. Welcome!

PaLady

Hi guys! Thanks a mil for you messages! Im having a really bad day today.I think acceptance is part of being armoured for the battle!Im not completely in that place yet-my faith in God s the only thing that seems to get me through.I am just hoping for better pain relief with minimal side effects from meds and of course perhaps locating the cause.Im seeing one of the "best" Drs int his field in South Afrcia in early Feb (waiting lists) so I aam hopig for a positive outcome from that as it took such a long time for me to be diagnosed.Its just great to read other peoples' experiences and know that I ma not alone! Great to join you all from this side of the world! It all started in my feet, spread up my legs then into both arms and hands and now is intermittant all over my body.Im pretty tough but this thing is really debilitating!I was diagnosed this month after MRI's, Xrays, many blood tests, EMGs etc.

Chat soon-have a wonderful, blessed Christmas!
Love Candy

Me,
I never heard that description but the pin-pricks and 100 bee stings is right on for me! The heat comes and goes. Course all the symptoms are dulled some by the neurontin and percocet, thankfully. But they're never completely gone. And when it gets really bad I sometimes just can feel my feet. People think I limp because of back pain, but most of my limping is due to stuff in my feet.

Didn't mean to hijack your thread, Candy, but I've got PN symtoms, too.

PaLady

Hi Candy,

I feel for you, about 5 yrs. ago, I started to experience numbness in the left buttock over the next year it traveled down my left leg.  Then I began to experience what I thought were Restless Leg symptoms at night....next thing I knew I felt like I was being stung constantly by thousands of bees.  I had an MRI of the low back and although, I have disc bulges, nothing explained the symptoms.  I was crying, scared and so uncomfortable.  They put me on Neurontin, which literally did nothing.  I was on pain medication from chronic pain as a result of a triple neck fusion.  Nothing really helped the pain and I thought I was going crazy, an EMG showed I had neuropathy in both legs and extensive peroneal damage but the cause is unknown.  I began to up the dosage of Neurontin it helped the neck (nerve) pain but did nothing for the legs, they switched me to Lyrica which did help BUT I had a severe reaction to Lyrica and had no choice but to stop it.  NO ONE understood WHY I had no desire to go out and do things, I would walk 3 feet and begin to drag my leg.  I decided to go for accupuncture and it did take away the pins and needles, burning and constant bee sting pain.  I also went for Physical Therapy and my PT taught me how to look in the mirror and reconnect my brain and leg so I could control the limp.  I do limp and flare symptoms if I overdue but I no longer have the horrible pain constantly.

I go for accupuncture and cold laser treatments when needed and use a homeopathic ointment called Traumeel everyday which contains Arnica and Hypericum these are both proven to help pain and inflammation, hypericum is for nerve pain.  These do help!

Did you have surgery recently?  The Dr.'s cannot explain my symptoms and repeat that damage MAY have occured at the initial ruptures of the neck discs.  A neurologist that I saw last year wanted me to know what my prognosis (he doesn't know the cause) will be and I told him please to keep it to himself. They don't know the cause, so in my opinion how can they tell me what will happen to me.

Just wanted you to know there are things that can take the edge off and you are not alone!

edt

Hey there again! Firstly Happy New Year!
Seems you all know EXACTLY what I am talking about and describe it 100%.This things seems to have come out of nowhere.I am on 400mg Neurontin, Celebrex and Vitamins mainly B's) I am coping much better with things just the lack of energy is getting to me most-is that also with you?I am hoping to have another chid this year but worry about how this thing will affect my pregnancy? Any suggestions or testimonies? I have good days and bad days but it is ALWAYS worse at night! WHY?? Does anyone know why it is worse at night? When it burns it feels like there is someone inside burning me with a lighter- that is my burning pain explaination and the bee sting sensation is the same on my side.Thanks for all th input!
Lve C

Hi Candy,
I totally understand your dilemma!! Everything always gets worse at night. Has anyone figured out the cause of the Neuropathy? I too asked my Dr. if it could be RLS and was told NO.....Try using ICE and take your Neurontin/Pain meds right before bed, HOPEFULLY at least it will give you a short window for a little relief. Try using a pillow between your knees and under your butt, you have to try all different ways of lying down, there may be one pose that eases the pressure and gives a little relief. I am 5 years since the diagnosis, it is nowhere as bad as 3 years ago, but depending on what I did during the day definitely affects the symptoms later in the day. The B (esp. B12) vitamins are crucial for nerve damage but so are FISH OIL, I take 6,000 per day. According to all the Dr.s it does help for chronic pain and nerve involvement. You should consider keeping a journal of your activities (its a pain but crucial for you to see how much your activity level is contributing). The hardest thing for us to do is ADMIT our limitations and then live by them. Many a night I would push on my leg to try and find the spot that would aggravate the symptoms and hold my finger on it applying pressure till I thought I would go crazy....but...it did help!
Ask your Dr. to order Physical therapy with a therapist who is very familiar with neuropathy...they are out there! I did water therapy and the PT taught me ways to connect the brain and the legs, I have exercises I do everyday in front of a mirror...which connect the brain and the part affected. When we have nerve damage, there is a disconnection in the nervous system but with the correct treatment we CAN get some relief.
Wish I could say there was a MIRACLE for this condition.....just know with time the constant electric jolts, bee stings and numbness do ease somewhat. What I have been told is its really no better your just getting used to it....I used to think what are they talking about they are crazy....no one could get used to this.....but it does happen.
My thoughts are with you!
edt

PaLady,

The exercises are actually simple....touch your finger to your nose while watching yourself in the mirror.  The ones for the legs are done with a wedge board, you put your foot on the board while watching yourself in the mirror....I drag my leg from the nerve damage and this really does reconnect the nervous system and its miraculously stops me from dragging the leg.  I do this exercise several times a day, it only takes a few minutes. There are several other exercises she has taught me but these 2 are so easy and work quickly.   My big problem is that I had a severe reaction to Lyrica, so I am unable to take it!  I was put on Lyrica after I reached the maximum dose of Neurontin.  I worked in the Medical Field all my career the last 21 yrs with an M.D. that was also a Homeopath.  So I was lucky to have attended many seminars and study nutrition before my injury occured.  The very things I learned have helped me control the pain somewhat.  I prefer Natural over Medication, BUT....I am on Norco! I use supplements, accupuncture and several other alternative treatments in an effort to control the debilitating pain I live with. edt  

PaLady and Candy,

I will try and find out what the exercises are called!  I will be in touch.

edt

Hi, Sheba,
Welcome to the chronic pain forum. So sorry you have to be here, though.

I have never been able to figure out all the symptoms nerves cause. I've had double lumbar fusion in part to get rid of the sciatic pain, but also those symptoms in both feet. Surgery didn't help either. I do take gabapentin (neurontin is the brand name). I had to start at very low doses, although my neurologist kept telling me i should be fine starting at 300mg, 3X/day. I started with 100mg, but over the past couple of years have gotten up to 400mg, 4X /day. It doesn't take away all the syptoms, but I know it helps because if I'm late on a dose my feet really start "screaming" at me. But it does have side effects. Mostly make you a little sleepy, although the worst of it has gone away. When i first started I noticed my vision blurring, but that also went away in a couple of weeks.

There is a newer, similar drug called lyrica. It's supposed to have fewer side effects, but is more expensive. If you could afford it, I'd try that first.

Have you had any other treatment since your accident? The new symptoms are probably an indication something is slowly getting worse, but I'm not a doctor.

You may want to start a new thread and introduce yourself to the CP folk, and you might get more info.

Hope this helps some.

PaLady

Sheba,
The only thing is that discussion of illegal drugs, including medical marijuana, aren't permitted on this forum. You might want to read through the rules. I know some people don't like that, but the I don't mind the rules. The administrator designed the site to be family friendly, and since he pays the bills he gets to make the rules.

Just wanted you to know.

PaLady

Tingling in feet/legs.
Worse/only at night.
'Restless' legs at night.

My meds get rid of most of these effects, but not sure it is worth Methadone and Morphine.

Lately I'm getting more tingling in hands, with numbing of hands. Has that turned up for you, too, Candy & Sheba?

My symptoms, the PN, is from Diabetes.

As others have indicated with themselves, I went along with not much tingling, nearly no pain, until surgery. Most of my tingling and pain was in my left foot prior to surgery; SCREAMING PAIN, SHOOTING PAIN, mainly in right foot (where surgery was) and then both feet/legs AFTER surgery. Doctors have explained it but their explanation would take hours to write and even then I likely wouldn't get it right. So, my shortened lame version follows...

Mainly, my nerves have been coated and asleep for years; now suddenly the coating (of sugar in my case) is coming/wearing off and they want to react but are broken - and so are firing whenever and wherever they can - causing interpretations of pain by my brain when there isn't really any pain. (Like I said, my explanation is probably pretty lame, but...)

Don't know how much, or if any, of this might pertain to what you are dealing with but some of your symptoms sounded similar enough to mine that I though this explanation might help.

Best of luck. A very nice thing about this forum - lots of people here and almost always someone who at least understands what you are going thru and quite often has been down the same road. Nearly every post I've read here there is someone describing one or more of my own symptoms as their own.