Peripheral Neuropathy

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Candy in South Africa
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/23/2008 9:12 AM (GMT -7)   
Hey there!!
I live in South Africa and after a long haul have now been diagnosed with Peripheral Neuropathy.I am 34 yrs old, have 3 young kids and I am battling.Being a stay at home Mom does not help my condition as I do everything myself fro my babies (like I prefer to)-The pain, the discomfort and battling with simple tasks.I feel like an alien in my own body, like I have been hi-jacked from the inside! I have not been able to locate any support groups this side and am feeling very scared about my condition as I do not know much, how bad it is going to get or WILL it get better? I am so excited to find you all and will appreciate any help, advise or just some support to keep me going.I am just very emoptional about it all.The worst is I really want to have another child next year and do not know how this illness will affect me.Also, no-one understands and people forget that I am actually ill! Anyone out here who has something to add?? Thanks from sunny, beautiful South Africa!  tongue  
Candy in South Africa


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/23/2008 1:10 PM (GMT -7)   
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

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/23/2008 6:41 PM (GMT -7)   
Hi Candy,

Welcome to HW. As PAlady said, this is a wonderful site to come to for support & feedback. I don't know much about your condition, but I do know pain. Were you recently diagnosed? It can take a long time to come to terms with your pain, especially, if like me, you don't know the exact cause of your pain. I've been dealing with mine for two years & I still haven't been able to accept it completely. I don't know that I will ever be able to, but this site has helped me a great deal in that matter. It is great to come here & vent about your problems & receive wonderful support and suggestions from everyone. We're all here for you, so keep posting!

Skeye

Candy in South Africa
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/24/2008 2:41 AM (GMT -7)   
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
Candy in South Africa


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 12/27/2008 8:21 PM (GMT -7)   
Candy,
do u get that burning, pin-pricky, being stung by 100 bees feelings in the bottoms of your feet? Also, the heat too.

Me.
 
 
spinal stenosis,degenerative disc disease,bilateral neuropothy.
lamenectomy L3,L4..spinal fusion L4-S1
 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/27/2008 10:17 PM (GMT -7)   
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

kara487
Veteran Member


Date Joined Mar 2008
Total Posts : 637
   Posted 12/28/2008 4:28 AM (GMT -7)   
Candy I know how you feel I get the burning pain in my arms and legs too. I am here to suppport you if you need someone to talk to. You have a great support site the others are here to support you too. I know about the suffering all day with it since I cant afford my medication. I do take elavil at night it seems to help a bit. If you need anyone to talk to im here if you cant find me on this site you always can you email me my email is in my profile. I hope you have a low pain day.
Lortab,ambien,elavil,reglan , neurontin,zyrtec and soma.
 
spinal conditions: Scolosis,herniated discs,spinal blockage,Spinal stenosis,bursitis ,Fibro,and arthritis


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 12/28/2008 6:25 AM (GMT -7)   

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

 

 

 


cra43
Regular Member


Date Joined May 2008
Total Posts : 167
   Posted 12/29/2008 1:19 PM (GMT -7)   
Wow, so glad I found this web. I have had numb feet for years now, and like someone said, my spinal doctor told me it was coming from the pinched nerves in my lumbar spine. I get sciatica too sometime. I had the pheriphial neuropathy test also.
I only take Voltaren 100mg. for de inflamation when my back or sciatica gives me pain. Nothing for the numbness. I have gotten used to it. My sister and 2 brothers have P/N worse then me.
They are in pain, and my sister says it feels like walking on broken glass. she doesn't take any meds for it because she takes so many meds now for different things, she don't want to add to her list.
I go to the gym and work out and swim in an aerobics pool. I think it halps my back. I am 65 years old. My sister is 72.
Just wondered if anyone found something that might help my sister that won't be more pills. I'd love to tell her about it if it would help her pain. Thanks in advance

Candy in South Africa
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 1/3/2009 5:02 AM (GMT -7)   
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
Candy in South Africa


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/3/2009 11:58 AM (GMT -7)   
Candy,
Do you mean it's worse when you're in bed? Could it be Restless Leg Syndrome (RLS)?

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 1/4/2009 7:04 AM (GMT -7)   
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
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/4/2009 1:45 PM (GMT -7)   
Edt,
Great post. i am not sure I have grown used to the PN, although the meds do help. Mine eases when I go to bed, though, especially since I bought the tempurpedic. But as soon as my foot hits the floor in the morning...it starts and goes downhill from there and is worse by the end of the day. I can definitely tell when I'm late on a neurontin dose. Sometimes I think it's not helping but I'm soon reminded.

I'm curoius about your PT. Years ago when I had a lot of PT for my neck and arms, a PT taught me something called "nerve gliding" exercises to help ease the numbness in my hands. I still use those. But don't know if this is what you might be referring to. Sometimes it seems like our lives revolve around meds, stretches, etc, etc, etc, and there's no room for life!

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 1/4/2009 7:28 PM (GMT -7)   

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
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/4/2009 9:39 PM (GMT -7)   
Edt,
Do the exercises have a name? I was going to try to google them to see if I could find a picture of the leg one. I can't quite figure out what that would look like with the wedge and I'd hate to make anything worse.

I've been a health care professional, too, and have learned a lot in terms of the psychological end, relaxation, meditation, visualization, etc., but still need meds. I fought it for a long time and then realized I was horribly sleep deprived, let alone just hurting every day. I'm a believer in integrative medicine, and it sounds like you are, too, meaning you do the least invasive things, but with a willingness to incorporate anything that's medically sound and will help.

Thanks!

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 1/7/2009 6:09 AM (GMT -7)   

PaLady and Candy,

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

edt


sheba1964
Regular Member


Date Joined Nov 2008
Total Posts : 25
   Posted 2/13/2009 5:46 PM (GMT -7)   
Hi people-I too suffer from electricity type tingling in my feet & lower legs-So bad that I can not sleep at all without sleeping tablets.I have cruched nerves at L5 from an accident I had three years ago.
I have had the back pain the whole time,but the Parathesia only showed up recently.
I couldn't understand why it only turn up now,as i have been suffering from the back problem for over three years.
It dissappears if I start walking,but as soon as I relax it comes straight back-anyone else have this experience.
They are wanting to treat it with anti-epileptic medication called Gabapentin-anyone heard or had experience with this medication,it may be called something else where you are,I'm from New Zealand.
 
cry   sad

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/13/2009 5:55 PM (GMT -7)   
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

sheba1964
Regular Member


Date Joined Nov 2008
Total Posts : 25
   Posted 2/13/2009 6:54 PM (GMT -7)   
hI & THANKS FOR YOUR THOUGHTS.
That is very cool to get the feedback on that drug.
Well,my story goes like this-after getting to the point of desperation,my feet screami9ng at me,unless i starting walking,which you get very sick of,lol.I examined what I had done ,as in making any changes in my Life.I had.
Four weeks earlier,I had stopped smoking cannabis-I used to smoke recreationally.When I thought of this,in my desperation,I decided to experiment,and had a few puffs.The tingling dissappeared within 15 mins,I was able to drop the sleeping tablets & the amitrip,which was giving me horrible side effects.I was a stunned mullet......It didn't change things with my back pain,but it totally relieves the Parathesia/tingling feet.It requires very little,once at night a couple of hrs before you want to go to bed.
I understand it is illegal in some places-but the relief is immence-if you are suffering badly,you may wish to experiment.
I hoping to have surgery soon,& with luck,it won't be a proble in the future,but for now,at least the tingling feet issue is resolved.
I have stopped again since to examine what happens,& within 24 hrs the tingling returns to the point of not being able to sleep.None of my specialists I have informed were surprised at all,but don't can't be seen to encourage it due to the legal ramifications.
In New Zealand they are apparently working on a spray that will provide these same effects-but it's not available yet.
Shame it dosen't take the pain away too,lol-not quite that lucky.
Maybe this can help someone else in this Boat.-Don't shoot the messanger,lol.
Remember to be thankful for the small things--when you are able!
Often ,we miss so much of the gifts that are sent our way!!!
YOU-ARE ONE OF THOSE GIFTS!!!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/13/2009 8:33 PM (GMT -7)   
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

sheba1964
Regular Member


Date Joined Nov 2008
Total Posts : 25
   Posted 2/14/2009 1:40 AM (GMT -7)   
Ok-right ,yep -thanks for letting me know .Don't want to be upsetting anyone-just thinking of those suffering,but can understand.Again sorry.

Remember to be thankful for the small things--when you are able!
Often ,we miss so much of the gifts that are sent our way!!!
YOU-ARE ONE OF THOSE GIFTS!!!


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 2/14/2009 1:48 PM (GMT -7)   
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.
Wife: Liz
Dogs: Koshka & Chomp
Heart: Lisinopril
Brain Zaps: Gabitril
Kidney: Simvastatin
Diabetes: Metformin, Insulin
Pain: Avinza, Morphine IR, Methadone, Cymbalta, Lyrica


sheba1964
Regular Member


Date Joined Nov 2008
Total Posts : 25
   Posted 2/14/2009 3:49 PM (GMT -7)   
Yes,I have seen that many who suffer with diabetes have to llive with Parathesia,had my bloods checked & they are fine.
My problems are coming from a damaged disc at l4-l5.
My heart goes out to all who suffer-bless you all with pain-free days & healing.
Big hugs to you all....
Remember to be thankful for the small things--when you are able!
Often ,we miss so much of the gifts that are sent our way!!!
YOU-ARE ONE OF THOSE GIFTS!!!

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