LifeWithPN : Messages : 1-21 of 21

http://www.myspace.com/rose__terry

Last week I went to a PN Support group meeting with a good Neurologist as the speaker and got a couple tips I wanted to share with everyone with PN.

Here's what I learned that I didn't know:

Our small (PN) nerves grow 1 milimeter per day but when distroyed or damaged like ours the growth actually starts at the spine area.

On EMG+ test (that fun one with needles!) the results come out completely "normal" at times because the small tiny nerves that we have damaged are too small to pick up on this test.

And the best TIP was; To ask our Drs for a perscription of TOPICAL LIDOCAINE 4-5% to put on the most painful areas; Slather on, wrap with suran wrap, keep on 1 hour and then wash off. Do 2 more times in the day for 1 month. If after that it does help, you can go down to once per day. This guy uses this for his patients and finds good results, of course if your already using patches maybe this would be in addition or in other areas of body... ask your Dr.

Anyone else have any tips to share?

Rose Terry, Visit me on MYSpace:

What's NEW with Tupperware:

http://my.tupperware.com/roseterry

#20

From: Rose Terry <rmterry@...>
Date: Sat Jun 28, 2008 11:17 pm
Subject:: I have Peripheral Neuropathy

rmterry2003

Offline

Hi I'm Rose Terry. I have Peripheral Neuropathy due to 'side-effect' to antibiotic called LEVAQUIN in the QUINOLONE family...poison as far as I'm concerned. Took in Mar 07 for pneumonia, started having some pains slowly building until Sept-Oct 07 when all hell broke loose in my feet. I'm on Lyrica/Cymbalta and sometimes Darvocet for break thru pain. Lyrica/Cymbalta makes me very sleepy and brain fog but still better than the pain! I am on many vitamins including CoQ10, ALA and use Bowen Technique for help as well as meditation, Chiropractic, massage, Epson salts soak, music, relaxation, and anything else I can think of.

PN has absolutely changed my life completely so try to always find things I CAN do cause there's so many things I CAN'T do. I have discovered I have severe sleep apnea so use a Cpap machine and it does help me sleep better, although I can't seem to get myself to bed until 2-3 am every day.

Love to share ideas, concerns, please do comment on anything that might help me and I will do the same - we'll get thru this together!

Rose Terry @>-'-,--

#19

From: "rousepatch" <rousepatch@...>
Date: Thu Dec 13, 2007 4:16 am
Subject:: PN

rousepatch

Offline

Hi,Guys another PNer maybe (long story) had symptoms for nearly
5yrs,gone thru 2 Neuro,s who have given up on me.Totally numb from just
below boobs been like that for a year or so maybe more,my brain is
fried from all the bloody medication over the yrs,gone off the rails a
bit now where was i, it has now started in my arms but im not sure
about my hands one minute im holding something then im not.And if you
asked me to touch your nose there is no way in hell my finger would end
up there it sort of has the wobbly boot effect,it just doesn,t have the
PN sound about it (then again what does)Anyone out there with any
thoughts on it appreciate it,also looking for new Neuro 1 who gives a
sh!t I live in Queensland,Australia any idea ?????i need help
here....Liz.

#18

From: "Rose Terry, Tupperware Mgr" <rmterry@...>
Date: Sun Nov 4, 2007 6:18 pm
Subject:: I need help, opinions, ideas, anything from anybody... Peripheral Neuropathy (PN)

rmterry2003

Offline

I need help, opinions, ideas, ANYTHING from anybody please...

I believe I have Peripheral Neuropathy (PN), effecting mostly my feet, some in legs. hands, arms. The pain is like a cigarette lighter and knife stabs in my feet mostly, the worst starting in late afternoon. Hospital Neurologist confirmed PN, as well everything I read on line. My current working Neurologist has not confirmed ANYTHING yet.

The worst symptoms have come in the last 5 weeks for me. Summertime I had very sore/hot feet, not knowing what it was. I remember having hot feet for 1-2+ years in the late evenings.

My own thinking on the cause for me might be:

Lead in my body (pellets in foot 37 yrs, & 20 yrs ago I was into StainedGlass/lead soldier).

Immune system problem (Several flu's & Pneumonia Jan-May 2007)...well since then.

Absorption problem of vitamins (diarrhea often for years, thought from gall bladder removed)

Sciatic nerve (I have some pain), my Chiroprator can't confirm.

I don't have Diabetes or alcoholism.

I'm seeing a Naturapath & a Neurologist. They don't agree on much. Finding the cause and doing tests is exceedingly slow and drives me absolutely nuts!

Tests so far:

Leg/feet scan (Doppler) for circulation - I'm great! No heart problems.

Electromyography EMG last Thursday: Motor good, Sensory borderline - waiting for Neurologist reactions.

No blood work by Neurologist yet.... he's sure slow!

Quick blood test for lead by Naturapath says nearly no lead, BUT Urine test shows LEAD HIGH but almost all Doctors won't take urine test seriously AT ALL including poison center.

Naturapath wants me to continue lots of vitamins, Neurologist fights the idea tooth and nail. Naturapath started me on Captomer, a heavy metal pill that can leach out lead, 1 week ago, Neurologist does know yet and I anticipate very NEGATIVE and may stop me.

I know I need to find a very good Internal medicine Doctor which I will be working on this week, I don't have one. I fired 2 Doctors in Jan-May when they did not help me when I had Pneumonia then.

Medications:

Gabapentin for pain

Captimer

Vitamins (lots, but not too much B6-B12, Niacin in case problem with PN)

Accepting that I cannot walk/stand very much at all has impacted my life tremendously.

Can't work or earn money any more for past month+. My butt hurts from sitting so much.

I spend a lot of time researching this problem, I'm the one who first pinpointed it.

I can't do much in chores at all, family under pressure to do so much more now.

Financially, our insurance isn't the best, and our debt is mounting.

I've cried more tears in the last 4-5 weeks than I have in 20 years altogether. Tears are good though...

I'm a stubborn old goat, and I will find a way to either find out what the real problem is and do something about it, OR I will accept it and figure out how I can still LIVE. Considering a disability card for my Van, possibly a cane, and maybe even Social Security (eventually...)... Yes all very devastating to me.

Positives in my life? My family loves me. I still have a home. We have food. I love God and He loves me. I DO have friends. And I'm NOT dying!

I'm not going down without a fight, that's for sure! But again, I'm looking for all the help, opinions, ideas, anything from anybody...I can get PLEASE. Thank you so much for listening.

Rose Terry

Marysville, WA

RMTerry@...

#17

From: "tammy961" <tammy961@...>
Date: Thu Jul 26, 2007 10:28 pm
Subject:: new member

tammy961

Online Now

My name is Tammy. I live in Pensacola, FL. I suffer greatly with pn and
many other illnesses. I have dysautonomia, gastroperesis, and
tachycardia. I just recently was forced to retire from my job as a
teacher (15 yrs). I do not post much. I am NOT a troller or spammer.
Guess i could be called a lurker, tho. I simply read all of the groups
I sign up for to gain  better insight and hopefully some relief.
However, feel free to email me or message me and I will be happy to
reply.

#16

From: "sore2toe" <sore2toe@...>
Date: Thu May 24, 2007 10:21 pm
Subject:: New 1st Post

sore2toe

Offline

Hello everybody. My name is Stefan and I have been living with peripheral
neuropathy in my
feet for many years. I suffer from chronic insomnia as they burn all night long.
I'm on meds
for them but they don't seem to really work. I was thrilled to come across this
group as I have
been getting very depressed about it all. Look forward to chatting with you.
Cheers & best of health
Stefan

#15

From: Karyn <gabbysmum2@...>
Date: Sun Sep 3, 2006 11:15 pm
Subject:: RE: A Newbie/Bonita

gabbysmum2

Offline

Hi Bonita {Am I right?}
I live just north of Brisbane and I mean just north!
It is great to find people who understand exactly what we are going through,i nearly cried when i found the American support group and then this one.I couldnt believe it,to finally find people who KNOW!! Not just give me lip service,cant stand that.
Since I last posted I have found I can no longer walk up even slight hills without being dragged up,my eldest daughter and I discovered that on a recent trip into Brisbane.We had a great laugh cause I cant walk properly,well I thought I was walking fine but she said I walk funny and had a blast laughing at me lol.
Anyway I have a long trip ahead of me now and I will be stuffed this afternoon.Please take care.

*hugz*

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#14

From: Karyn <gabbysmum2@...>
Date: Sun Sep 3, 2006 11:03 pm
Subject:: Re: Hi Karyn, nice to see you posting again

gabbysmum2

Offline

hi Debbie,
I know all about busy lol I hope you are feeling better though.

Yeah iam prediabetic but the doc says to think of myself as diabetic.My first BSL this year was 11.8 and the second was 8.5.I have to go for another test which is hard to do right now as I have to wait until my man{boyfriend doesnt live with me YET lol} has a day off which has only been a friday and unforunately things have been taking over the fridays lol

It doesnt look like POCS as I didnt have trouble conceiving all 4 of my little {hmm ok big hmm HUGE is a better word} monsters who are great help and act as carers,they do alot to help but i do try to do the most as i still want them to have a childhood.

My main concern is the pain which right now is being controlled by strong pain killers.It doesnt help with hills though lol i have to be dragged up them as we found out when we went to town for a dental appointment for my eldest daughter.

Have you heard of crocs? Iam on an American PN support group and they just rave about them.I have tried them yet. www.crocs.com.au is the website if you want to look.

anyway take care and have fun with your little man they grow up too fast. *sob* my little man is now 18 and taller than me,which isnt too hard lol.enjoy!

*hugz*

Karyn {Peripheral Neuropathy cause unknown as yet,CTS} mum to
Matt {18 handsome,witty and cheeky},Keira {14 beautiful} Mikayla {9,gorgeous Donkey} and the littlest princess Gabby {7,ASD,II stunning cheeky monkey}

Try the all-new Yahoo! Mail . "The New Version is radically easier to use" � The Wall Street Journal

#13

From: "napiersanstache" <napiersanstache@...>
Date: Wed Aug 23, 2006 11:06 am
Subject:: G'Day All

napiersanstache

Offline

Welcome all you new people to the web page it is nice to have you
with us
Had a bit of a drama at Physio today and it has left me very upset
and depressed.

Was trying to walk up a set of 3 stairs got to the first one and my
short term paraplegia kicked in same thing happend on the other 2
remaining stairs and then as my legs were unsteady I sat down, upon
trying to get up it took a super human effort to stand again, one of
the physios came rushing to my aid and called for assistance
eventualy they got me upright by that time I was exhausted and there
was more than one tear in my eye.
I did eventualy recover and get home and then I just started to cry
uncontrollably for a period.
Feeling not to bad now but once the Grand children go I am going to
bed, I am wondering if the stress of my brothers condition and my PN
condition just became to much.
I was supposed to help out at the Hospital this afternnon but was
unable to.
Still I must not give up and but boy some time it is realy hard.
Sorry for my long epistle but i just needed to talk to my friends.

#12

From: "Bonita" <bonds2@...>
Date: Wed Aug 23, 2006 10:01 am
Subject:: RE: A Newbie

dolphinlady45

Offline

Hi Karyn,

Thanks for the welcome.What part of sunny Queensland do you live?I have three adult kids and of course my adorable grandson.its good to be able to chat with people who understand what PN is like.Best wishes for the future.

From: LifeWithPN@... [mailto:LifeWithPN@...] On Behalf Of Karyn
Sent: Tuesday, 22 August 2006 9:33 AM
To: LifeWithPN@...
Subject: Re: [LifeWithPN] A Newbie

Hi
I havent been on this list long either but I welcome you even though its a shame we meet because of this horrid condition.
      I am now a single mum of 4 gorgeous ratbags and we live in sunny Queensland.
                  I was diagnosed with PN in may and Iam in the testing stage for diabetes.I have also got carpal tunnel in my hands which seem to have a mind of their own today.
            please take care and I look forward to getting to know you and the rest of the group.

*hugz*
Karyn

Karyn {Peripheral Neuropathy cause unknown as yet,CTS} mum to
Matt {18 handsome,witty and cheeky},Keira {14 beautiful} Mikayla {9,gorgeous Donkey} and the littlest princess Gabby {7,ASD,II stunning cheeky monkey}

All new Yahoo! Mail "The new Interface is stunning in its simplicity and ease of use." - PC Magazine

#11

From: "dolphinlady45" <bonds2@...>
Date: Wed Aug 23, 2006 7:15 am
Subject:: Question

dolphinlady45

Offline

Hi Everybody.I have a question.I suffer the neuropathy in both feet
and both hands.Lately the pain has been more in my left foot.Is this
normal?
I also get the spasmotic and shooting pain.More so at night.Is there
anything I can do or take?I have tried almost every medication and
nothing seems to work.Except for the ones not on the cheaper list like
Lyricia.

#10

From: "Debbie" <Debbie@...>
Date: Tue Aug 22, 2006 1:05 am
Subject:: Hi Karyn, nice to see you posting again

dobbieray

Online Now

Sorry I havent been looking at the board that much, I have been a
conmbination of busy and sick - mostly at the same time LOL!

So you've been diagnosed pre diabetic?  Interesting, by this do the
doctors mean insulain resistance?  If so you may have Poly Cystic
Ovarian Syndrome of which one of the major characteristics is
insulin resistance.

Some with PCOS dont develop it until after they hav had children
whilst others develop it all throughout their childbearing years -
that is me - making it difficult and sometimes impossible to
conceive.  I tried conceiving for 20yrs had 2 miscarriages 10 years
apart and finally had my beautiful son 2yrs ago.  Being pregnant
with PN is no picnic believe you me!  And now I am struggling and if
it werent for my wonderful husband who is my main carer as well as
my son's, I would have gone round the bend!!!

Talk to your medicos about using a product called Metformin - used
to treat insulin resistance in diabetics. I take it and I know it
helps a little with the PN and in our world, every little bit helps.

Well I have to go now, have a busy 2 yr old to contend with and also
some work to do.

Bless you and take care

love

Debbie

From: Karyn <gabbysmum2@...>
Date: Mon Aug 21, 2006 11:32 pm
Subject:: Re: A Newbie

gabbysmum2

Offline

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From: "dolphinlady45" <bonds2@...>
Date: Sun Aug 20, 2006 2:49 pm
Subject:: A Newbie

dolphinlady45

Offline

Hi everybody.I just joined the group.I live in Canberra.Iam a widow
of 3 yrs.I have 3 adult children and one adorable grandson.I suffer
with this painful condition.It effects both my feet and hands.I off
course have diabetis which is mainly controlled by medication.I look
forward to getting to know you all,and maybe learning about way to
cope with this cruel and painful condition.

From: Karyn <gabbysmum2@...>
Date: Tue Jul 18, 2006 10:17 am
Subject:: Re: Welcome Karyn

gabbysmum2

Offline

Hi Debbie,
               I have been to my docs since I sent my email in and it appears Iam pre-diabetic which is strange since all the information {which isnt alot} I have read is that PN doesnt happen for quite a few years AFTER being diagnosed with diabetes,mine leads to a diagnosis of diabetes lol.
                                                   I find hot showers work a treat if I have one just as Iam going to bed but I HAVE to go to bed IMEDIATELY after the shower which can be difficult with four children and just me.
                                                                          PN affects me heaps,I can no longer stand for very long without extreme pain {I brought a dishwasher last year because of this} which makes going anywhere difficult and getting my legs to work how I want doesnt always happen.I have been getting alot of deep muscle pain that just wont quit,nothing unbearable yet but getting worse.I have had pins and needles now for three years which started in my feet and has progressed now to my waist although most of the time its not painful Iam sick to death of it.But tonight the pain is incredible tonight for some reason.
Iam currently taking tegretol and over the counter pain killers when needed,Iam not receiving any theraphy or any other treatment,most of the time I just grin and bear it as my children need me,especially my youngest who is Autistic and intellectually impaired.My older children have been great,helping more around the house,my eldest daughter {14} now cooks dinner every night and all older children go to the shop for me.Iam hoping to get a car eventually so that I can take my children places as right now we dont go anywhere.
   Sorry I have blabbed on and on please take care.

*hugz*
Karyn

All new Yahoo! Mail "The new Interface is stunning in its simplicity and ease of use." - PC Magazine

From: "Debbie" <Debbie@...>
Date: Mon Jul 17, 2006 1:38 pm
Subject:: Welcome Karyn

dobbieray

Online Now

Hi there in sunny QLD!

Glad to see someone posting here, been very quiet.

Like you, I have PN from no real known cause, although I have my
theories.  I am up late tonight trying to actively block out the pain
in my body that has kept me awake.  I dont fancy yet another shower so
the computer helps a bit to take my mind off the pain.  Just hope I am
awake enough in the morning for work.

What types of treatment, drugs, therapies do you use to help with your
PN and how does it affect your life, besides making you feel like you
are going crazy LOL!  I am interested to know how others cope

love

Debbie

From: Karyn <gabbysmum2@...>
Date: Sat Jul 15, 2006 1:13 am
Subject:: New member

gabbysmum2

Offline

Hi All,
         As the subject line says Iam new here and to PN.Iam now a single mum to 4 gorgeous children and we live in hmm "sunny?" Queensland.
                                                                                      I was diagnosed about 8 weeks ago after 3 years of weird and wonderful{?} things happening to me.Iam thrilled just to have a name for it and to know that Iam not the only one who seems to be going slowly mad!!
                                  anyway I hope to learn more about PN and the various meds that are available here.I did join another email group but found out they are all American which is great for support as they go through the same thing but the meds they have are unavailable here,also I can learn twice as much lol.
                                                                                                       Please take care and I look forward to "meeting" you all.

*hugz*



Karyn {Peripheral Neuropathy cause unknown as yet,CTS} mum to
Matt {18 handsome,witty and cheeky},Keira {14 beautiful} Mikayla {9,gorgeous Donkey} and the littlest princess Gabby {7,ASD,II stunning cheeky monkey}

All new Yahoo! Mail "The new Interface is stunning in its simplicity and ease of use." - PC Magazine

From: "Debbie" <Debbie@...>
Date: Mon Mar 6, 2006 11:10 am
Subject:: A Big Hello there!

dobbieray

Online Now

HI there,

Just wanted to say I think this support group is a great idea!  I
look forward to sharing with other sufferers of PN and perhaps
learning some ways to cope with PN, and maybe able to pass on a few
tricks myself.

I am from Glendenning - outer west of Sydney, NSW Australia. Have
had PN for quite a few years now - progressing along despite drugs
and treatments with natural meds.  I am not on any meds like
neurontin or topamax any more as they sent me silly.

I cope by trying to keep my mind active and off the pain sensations
that travel along my body.  In some ways I have learned to live
with 'fire ants', 'hot oil pouring over my body' and 'the stings of
a thousand bees', and not to mention 'walking on cut glass' every
time I take a step.

I have a fun theory that if all the PN sufferers in Australia
united, the 'electricity' we feel running through our bodies could
save the energy giants of this land a heap of money!  I personally
think I generate enough electricity to light up western Sydney!

Take care everyone,

Be gentle with yourselves.

I look forward to getting to know you all

Dobbieray

From: "pain_worlder" <steve@...>
Date: Sun Mar 5, 2006 10:37 pm
Subject:: Hi good people, just wanted to say Hi...

pain_worlder

Offline

Great to see another support group for those in need... I don't have PN myself but I do know what it's like to live with a chronic illness. I know it's effects on you, your family & friends...

So keep fighting the good fight, never give up or give in and always remember...

Behind the Cloud, the sun is still shining...

Steve

From: "napiersanstache" <napiersanstache@...>
Date: Sun Mar 5, 2006 10:09 pm
Subject:: Welcome

napiersanstache

Offline

Welcome to the site and please bear with me as this is all new to me,
In lovely Camden just ouside of Sydney in the Great Southern Land it is
a beautifull morning and I am feeling pretty good considering the wife
and I painted our bedrooom over the weekend, we were pretty fed up with
the dark gold colour it was previously, now it is a soft green.