Does the PN spread to your entire foot, ankle>
 

Thanks to all for your responses to my question :Is this PN?'
Wish I were in Australia again Brian- feeling well. Had many trips there. Friends live in Melbourne , Perth and Sydney. My neuro is rally great and he does try to help me with T point injections and at least 30 meds. None have worked. This foot and anlke problem is really a complicated beast for most Docs. NOnbody wants to inject or mess around with feet. I was also told by the supposedly top neruro in the country that he could not recommend anyone to treat me because I was so bad and so far gone.
LizJane I'm glad the Barnes tecnnique worked for you. I can't even have anyone touch me as it triggres off the TP's and they become chronic. I have hyperalgagesia and allodynia as well. Also, have RSD.
I am really in a bad and depressed mood now because I can't even drive.
My question is - does the PN spread to the top of your foot and into your ankles and up your legs - feels like shin spints. The soles of my feet hurt also but so does everywhere else in my feet - including toes. Also, my feet and ankles are absolutely freezing all the time.
I get weekly upper body injections for the FM. But what to do about the feet? Even my podiatrist says he knows no one who would work with me - especially becasue of the RSD. Injections in hands and feet is a no no for RSD.
Having been a professional for 36 years and extremely active - the past five years have been pure hell due to the meralgia paresthetica, epidural in my back(chronic back pain) and then chronic hand and wrist/arm pain from an IV. Now this think with my feet has put me over the edge.
I am so glad I can have this forum to vent my frustrations. Pain free active people just don't understand.
Thanks for listening and let me know about the spread of PN. Perhaps it is just the fibromyalgia as the dr. said. ONe thing I know from experience is that it is chronic and will never go away. HOw depressing is that. Sydney

Hi Sydney, i just realised that you had started a brand new thread :)

This is a fantastic forum with plenty of very smart and caring people who although are suffering themselves, are quick to lend a hand to anyone that is in need, and it is good to vent and let out some of your frustrations, as most here really do understand.

Pn can spread, in my case PN started in the balls of my feet then spread all over the feet and started to climb my legs up to my knees, then stopped and luckily i was able to reverse the damage.
Have you had any PN tests ? like nerve conduction test, EMG, thermal, vibration tests, b12 levels, etc., those freezing feet sounds like small nerve damage, i have read plenty of people here talk of freezing feet or to the other extreem, burning feet in whatever differant seasons of the year.
Never know whats around the corner, i hope that you will be able to drive again and come over here again to see your friends again.
I am sure others will be along shortly.
all the best
Brian :)

Sydney, have you tried..
 

some of the topicals? I use the lidoderm patches at times on top of on my foot soles..depending where it's worse. There have been discussions about other topical 'numbers' to numb the pain throughout the board.

I've found that there are times when they numb TOO WELL tho. Meaning that I lose feeling of whatever nerves that are left and can be more prone to put a foot down wrong. So, I find I have to be super careful walking. I don't use the patches daily, usually one or two days a week, but I also find that the effect of killing the pain seems to last for about a day after I take the patches off.

One really silly thing that helps me sometimes when the pain decides to be 'active' or super cold is to use a hair blower over the affected areas [not too close tho] It gently warms the area and sort of soothes the nerves. On other occasions when they seem 'hot', I use a spray bottle of tepid water on the area. The evapoation seems to cool those nerves then. Go figure!

In the meantime, VENT AWAY! With lots of good thoughts as well - j

I just read your other posts & ...
 

the answers. I agree w/MrsD about cutting the patches up and trying pieces in various places. I cut strips for my ankle pain [the worst part?] and find a strip will numb the whole foot.

Try it all out and do what works - j

thanks for the advice
 

Thanks to all for your advice and answering my question on the spread of PN. Brian - your spread of PN sounds just like mine. It started by burning in the soles of my feet and then over the next few days spread all the way to the knees. DR. says it is FM - but the freezing and sometimes burning pain leads me to believe there is nerve involvement. Your post said you caught yours in time. What did you do for relief? I cannot have any emg , nerve conduction, etc. because of my severe allodynia. Any type of stimulation excites the nerves and they could become another source of chronic pain. Even a simple IV in my hand triggered off chronic hand and wrist pain. Even at the Mayo clinic many years ago - they said I have some type of hypersensitive nervous system and never have an emg, etc. I cannot even have a colonoscopy for fear of triggering off more chronic pain (colon cancer is very prominent in my family). Ex: I just rubbed some magnesium cream on my knees and ankles and...............the massaaging into these areas made them worse. Rubbing a compound cream on my hand did the same thing a few months ago. My nervous system is a wreck.
I will try the lidoderm patches. I tried them before for my back and hands and they didn't work. Thirty meds later I am still trying to obtain pain relief.
Thanks to all. You are a great group of people and I am thankful for your support.
Sydney

Sydney, mine was caused through prediabetes and my b12 levels were not good as well, through a change of diet[ no high sugary carbs ] and heaps of b12 cynocobalamin supplements & Hydroxocobalamin shots, & vitamin c, all helped to repair the damage, i was lucky as my neuro got onto the cause early, which made all the differance.
I see what you mean with your nervous system, sounds extreemly sensitive, i am wondering if b12 methylcobalamin supplements may help you, its normaly its taken with a multi B complex, as they help each other work better, but its best to take the b12 at a differant time of the day than the multi B complex tab,
B12 is great for repairing nerves, if you want to know anything about b12 just ask Rose , she is our expert on it.

I used magnets on my feet as well, fairly strong ones that i put on top of my feet and left them there for months, only took them off for bathing then they went straight back on, as they get the circulation going and i believe they help with inflamatory part as well.
I have not heard of any sucess stories with those magnetic inner soles, i reckon applying them directly to the skin is the only way to go, with a bit of moleskin in front of the magnet to stop any magnetic burns which can happen with strong magnets.

Brian :)

Hi Brian
 

Can you tell me how strong your magnets are,and where I can get a good quality one? I see the magnetic bracelets at the chemist and wonder if it will do any good. They also have necklace magnets too. What are your thoughts?

Thank you

Aussie, the ones i used were 20 mmx 3 mm in size, round ones like a 20 cent peice in size, they are 3,000 gauss in strength.
The place i got them was at, http://magnet-eze.com.au/ , if you go to that site and just a few lines down from " FAST - MAGNETS " you will see " click here " in red, do that, and then double click on " rare earth magnets ", then double click on " discs and rods, run down the page until you see item number
Red203, - $4.00 each, thats the ones.

If you do decide to get any , be carefull when handling them , they are very strong and if put them to close to each other [ opposite poles attract to each other ] they will slam together and if your fingers are in the way :eek: it hurts
Its important to put a small piece of Moleskin on the skin before sticking the magnet on, [ a tip from Mrs D]

As far as magnets that are in necklaces and bracelets, i can only say that years ago i brought one, that was suppose to help my neck, it was totally useless and i chucked it in the bin.

I used Elastoplast to stick them on with [ great stuff ] i know its available at Safeway, but probably Coles may have it too.
If you have any trouble obtaining any moleskin which i did,, PM me.

good luck
Brian :)

Thank you Brian,
 

I will look into ordering over the weekend. I would like to get magnets for my kneck.

The best place to start
 

is at the beginning. PN can have many causes (how many did we count up to on the old forum?). I suggest you take a look at the lab tests for sensory PN on www.lizajane.org and start with those. You should have all of them at one point or another.

One other suggestion: It's probably easier to help if you keep all the info in one thread for now. Otherwise people clicking on a new thread may miss what you've said in the old.

Hi. I did a search for burning feet on this board and found a lot of info.

But I'd like to know what RSD is and also what is a blood disorder called MGUS? Thanks.

Check out the Scope of PN thread....PN can be systemic or generalized as they say.

A good place to look at info about both RSD and MGUS--
 

(RSD, or reflex sympathetic dystrophy, is often referred to know as Complex Regional Pain Syndrome, or CRPS, and MGUS stnads for Monoclonal Gammopathy of Uncertain Significance, which involved the production of rouge, monoclonal antibodies that cna cross react with nerve structures and produce neuropathy symptoms:

http://www.neuro.wustl.edu/NEUROMUSC...tml#idiopathic

http://www.neuro.wustl.edu/NEUROMUSC...y/mprotein.htm

rsd/crps
 

CRPS = COMPLEX Regional Pain Syndrome not Chronic

The Complex bit is for the complex about it;
Pheripheral nerves,bloodwessel,muscle and bone(osteoporoses)an the sympathetic nervous system

So to say Chronic for the C would be wrong

There are a RSD/CRPS forum her if you have Questions:
http://neurotalk.psychcentral.com/forumdisplay.php?f=21
:wink:

And YES it does spread!

There is a misconception that PN is a disease of the feet.

It is a disease of the peripheral nervous system, which is any nervous tissue outside of the spinal cord and brain.

Often people notice buring feet as their first clue of PN and that is how it stays. I thought I had shin splints....I had a fracture just prior to my diagnosis.

I noticed my mouth burning.

Then I had what looked like a TIA, but was not....that got me into the proper diagnostics to try to find a cause.

It usually spreads in a 'stocking glove' distribution, feet to the knees, then fingers to the elbow, however, PN can be proximal as well.

Autonomic Neuropathy is a PN...and that is everywhere. Having foot neuropathy does not always mean you will have it spread.

My leg neuropathy is worse in my calf than in my foot....go figure! I have it everywhere. I have had the cilliary nerve in my eyes affected, ears, hearing, heart rate, blood pressure, sweating, GI affected, not to mention hands, arms, feet and legs. I think I am a little weird as far as PN goes....I think I am a little weird..period.:o

See the Scope of PN thread for a good explanation....and definitely use LJ's charts to get all the tests you need. Not being able to drive has to be very frustrating...Perhaps you can get hand controls for your vehicle? Just a thought to keep you rolling.

Hi. My severe pain started and still is in the inner ankle/foot/calf of left leg. Then I had issues with my right and some other problems. Anyhow I have pn but they don't think that is the cause of the severe horrible pain and think it is rsd or something similar. It can happen from an injury or in some cases like mine unknown. A few things for myself and not to say you the original poster the lidocaine patch or lidoderm made me worse cause it rests on your pain area and for me a fan blowing hurts. I agree that having a shot in the area or having someone touch it or manipulate it is a no no for rsd.The last doc wanted to do lumbar nerve block I think to help an I think it is done in the back using xray After my emg/nc I was in a mjaor flare up of pain for weeks.Maybe not much help for you but thought I would add a little