Hi,

My name is Melody, and I'd also like to say "Welcome"

About the burning, have you tried Lidoderm Patches?

They are by prescription. My husband used to cut them up and wrap them around each toe before he went to bed. They say you can use up to 3 patches at a time. They contain 5% lidocaine solution in them. They are not small patches.

You can ask your doctor, and put one right on top of where your foot burns.

12 hours on and 12 hours off.

Ask your doctor.

I wish you well.

Have you had tests run for autoimmune causes of neuropathy? Such as Sjogren's Syndrome, Rheumatoid Arthritis, Anklyosing Spondylitis, etc. I'm thinking maybe a rheumatologist should be consulted also.

Billye

I just want to clarify my comments on treadmills...I used to own them and use them....they are good if you have no gait problems, have feeling in your feet, and can tolerate the 'shear' that happens when you are walking on a moving surface.

It is the moving surface that bothers me.

When you walk on a stationary surface, regardless of how hard it is, it is not moving the opposite way of your foot....think of it this way, a treadmill is actually sliding your shoe backwards from under your foot to some extent....the road, trail or sidewalk is not (altho they can be hard, unstable and uneven.)

You also have to walk at the pace of the treadmill, with no deviation or you can fall. If you have any gait issues that consistent movement of the treadmill, can force you into a gait that is not normal for you. A treadmill has to have medical rails or forget it. Good treadmills cost over $5000.

You do need weight bearing exercise, and cycling which I love, and swimming are not weight bearing....often however, I try to run in water, which is therapeutic. An elliptical, provided the stride is set well for you, will give you some weight bearing, not as much as walking, but you won't experience shear. I have an elliptical, but I think the stride is too far apart...hubby likes it, I don't.

That said, treadmills are more padded, and if you can find a stable but soft trail, such as a gravel hiking or biking trail, that is ideal. Be conscious of walking on roadways as they are crowned to drain, and one leg will hit before the other and that can cause imbalances and foot injuries....the leg nearest the road comes down faster, it as less far to travel...you are essentially walking on a slant. Not good. Your hips will even be affected by the further reach of the one on the side away from the road.

You have a lot of foot, ankle and back issues which actually can all be related....one titch off in a joint and the whole posture and gait is affected. Gait analysis, orthotics evaluation, could help you with every day pain and are a must if you plan on exercising.

I know there are a few posters who have a lot of knowledge in this area and can also add to your knowledge base.

It is very hard to find a physical therapist interested in working with PNers, or a personal trainer skilled enough to know how to work with PNers. My background is in nursing and clinical exercise science, but, I went to the school of hard knocks....figuring out how to exercise with PN...now that I know I have it, I understand why I got so many injuries when I thought I was 'healthy'.

Getting diagnosed with PN is like putting together a gigantic puzzle, and unfortunately, you are the one who has to do the work....docs may try, but even the best docs, don't know all of your experiences....and don't know all the areas your neuropathy can affect.

Get your neuropathy diagnosed, identified, the cause treated, and then work on the issues of learning to exercise with PN.

I personally found walking on any hard surface just pure agony, so i went to the local all weather swimming pool [ early in the morning when it was not busy ]and just walked up and down the lanes of the pool, i would swim a bit but mostly walk, non weight bearing exercise was ideal for me but we are not all the same, whatever suits the individual is the only way to go.

Brian

We all need weight bearing or our bodies go to pot...there are some very interesting studies on astronauts in space. Actually the Vanderbilt U program was designed to study the effects of zero gravity, and from there it evolved into one of the better Dysautonomia and Autonomic Centers. Our bodies are designed to be upright and, dysautonomics are loathe to be upright, as it is a constant struggle to keep the blood pressure up.

Walking on a treadmill with impaired sensation could eventually cause a shear injury or foot ulcer. If you have plantar fascitis and history of ankle fractures, it is obvious that there is a mechanical issue. I wouldn't exercise with that history until I saw a phsycial therapist and orthotist.

I have been thru cardiac stress tests several times and ended up black and blue from the tibias down due to the treadmill....and I used to use treadmills all the time before this got so bad.

I know one other member who got a foot ulcer from a treadmill.

Pool walking is better than no walking, as it is still weight bearing but much less so. Pool exercise is very good for people with neuropathy, and I hit the pool, three times per week. I mostly do laps but like you finish up with a few 'runs' around the pool.

Sorry to hear your feet are too sore to walk on. There are lots of new medications out there to use for burning feet. The antiseizure meds and cymbalta may work for the burning. If you have aching pain, there are lots of orthotics to redistribute weight, and opiates work better on the aching, in general. I hope you have been able to at least try some of these meds.

Disuse syndromes are the worst cause of pain and disability, and believe me, I know, as I am dealing with this issue due to not being upright enough due to spinal pain from shot thoracic discs that are inoperable, and severe hypotension....not to mention leg pain and foot drop. It hurts like #$%@ to walk, but I do it anyway, but it is my own fault for not being up enough, and not on my feet enough...or I see it as my own fault, anyway....maybe it would have gone this way anyway, as the course of the disease.

It is good to hear you are in the pool, and I hope you can get more relief from the pain with mechanical or medication routes. I am pretty emphatic about correcting mechanical and postural problems as as each joint malfunctions, the next one is affected until your whole body is a mess...and if you are a mess, it takes orthotics and braces to get you to the point that you can even work on core strength issues, to correct muscle imbalances...add to that myopathy, some of those imbalances must be permanently corrected with devices.

BTW, orthotics hurt really bad for a while, quite a while during the break in period, which is much longer for PNers....if you do get them, make sure they give you something for pain if it is too bad.

I think in general, the way PNers are treated for pain is in the dark ages. I hope that the medical community will see the light, soon.

Thanks Cyclelops, but i should clarify that i meant to say that i used the pool for exercise when my feet hurt to much to walk normally, i use to love walking for miles before the PN struck, so instead of becoming a very unhealthy couch potato i thought of the pool, which worked out a great way of exercising without any discomfort to my feet at all.

These days i am lucky enough to be able to walk the pavements again, the burning is 99% gone, thank god, i use to use 300mg Tramadol slow release x 2 times daily, but don't use it at all these days, only still use Endep which i am now considering to slowly go off that as well, keeping my fingers crossed
but getting back to the pool, i agree with you, if anyone is able to manage the pool it's a great way to exercise.
all the best
Brian

Cyclelops, I am confused as I'm not quite sure what you mean that there is a break in period for AFO's. And that they are very painful. I realize there are many kinds of peripheral neuropathy. I have Charcot-Marie-Tooth disease (CMT for short). Perhaps you have heard of it. It is the most common "inherited" neurological disorder and is found worldwide. There are a number of types of it and sub types as well that they now have found. It is slowly progressive and causes deterioration of the peripheral nerves which control sensory information and muscle function of the foot/lower leg and the hand/forearm. And, of course there is much more.

At any rate, there is footdrop and lots of other things which do require at some point AFO's. I'm not quite there yet. However, from everything I have heard from people who have this and who wear AFO's, there should not be any pain. There would be adjustments that would have to be made to the AFO's. A person with CMT needs a brace person who understands CMT and how it affects the feet/legs.

Again, I do understand that there are many, many types of PN. I just wanted to bring this forth. There is, of course, much more information concerning CMT. I do appreciate your post and find it full of information. Thank you.

Kitt

No need for confusion, what you are hearing from me and the CMT folks is congruent.

I do have a brace person, called an orthotist. I know some PTs do them, but orthotists have a lot of knowledge and I found the orthotist to have the most options, and he really listened to me and gave me a good eval. An OT did my hand splints.

When you get orthotics, they give you a 'break in' schedule....(I think they disregard how much some PNers do hurt from this and get too aggressive with it and some folks give up on them....I do OK with their break in schedules).

They go something like, 'wear for 2 hours day one, 3 hours day two, etc'....that is when it is a bit painful....I don't feel my feet much, so I guess I have a bit of advantage there. My nerve fiber density from the knee down was below 2, 4 years ago, when I still felt things. I mostly get achey feet or cold feet if anything....I do not feel injuries.

When you change the foot position, you change the knee position, hip position and even the back....the foot, your gait, essentially affects places you would not expect.....often times, an orthotic will help a person with back pain for example.

Anyway, they don't have you wear the device all the time, in general, and even once broken in, such as the spinal one and the AFOs they don't want me wearing those all the time...the shoe ones they do....except I do go shoeless in the house some of the time, which they said is OK.

Your body is used to a certain gait, and when you get orthotics, you have to basically 'break them in'. I got my first ones, after I had a medial tibial plateau fracture from gait abnormalities...and it didn't heal for a year, and ended up needing an electromagnetic coil. This was before they suspected neuropathy.

I have both spinal, hand, thumb and shoe ones, and I will be getting AFOs as well, as I have mild foot drop, which is fairly recent. (I am 55, so not a spring chicken and my foot drop comes on after about walking 400-500 meters...I also have myopathy, but up in the bicep...I likely have it elsewhere but that is where they did the biopsy.)

I also have a night AFO, as my feet plantarflex at night and that causes a lot of dorsiflexor pain....I can't get my foot back in the 'L' shape without a lot of pain...so they don't want the foot plantar flexing at all at night. That will be hard to get used to, sleeping with something on my feet. I do have to take Baclofen and diazepam to manage spasms, and we are still working on the right dose.

I have not yet been thru the CMT gene testing, but the doc is leaning in that direction for diagnosis. Right now he is just calling it an autosomal dominant hereditary neuropathy and/or anterior horn cell disease. They are finding new gene loci for HN and or CMT whichever it gets called in each case, all the time, so it is a matter of when to do it, and how much it will cost and who will pay. I will know more about it in a few months. I think right now, they can identify roughly 20 genetic loci for CMT, and they keep adding new ones all the time. I have an axonal neuropathy. I know my doc is not real big into testing for the genes...I would like to know, personally, as I have kids, several with symptoms...but they are grown, and won't get tested, as they have me to get it done. My doc feels we can wait for more symptoms to arise and then nail down the gene loci better and not cost a fortune testing for stuff that is not at all in the ball park.

I will be getting my second spinal orthotic. The spine issue is more difficult to pin down as I was hit head on by a truck going 55mph, so, I have several calcified herniated discs....we do have a kid with scoliosis, so it is hard to say if my spine issues are genetic or from a good whack.

I also have hand ones for sleep and daytime thumb splints, that really do help, altho they interfere with things....and people who go to shake your hand, kinda get taken back with what is on your hand if they don't see it first...LOL, I had someone recoil a while back and it was the first time it happened....it was no big deal once they saw it was just a plastic thingie. Kinda surprised me as I just didn't think about it, as I didnt really remember they were on or that some one would think they are odd.

My old orthotics, 3 years old, are no longer correct, as my gait changed, again...usually insurance covers 2 pairs of shoe orthotics every two years...I guess mine just changed that to one pair, LOL, big surprise. With progressive neuropathy, your body changes, so your orthotics have to change. I am getting carbon fiber AFOs with a stay in the back due to my degree of hyperpronation...orthotist was afraid I would break a medial stay and that costs $$$. There are all kinds of AFOs, so it depends on what your issues are....that said, they are pricey.

AFOs and the spinal one, they do not pay for like the shoe ones, which are 'relatively' cheap....these I think I am to make due with for quite a while altho I am sure they can be adjusted?

Anyway, they hurt during break in, and this will be my third break in....once broken in and you get used to the new positioning, it should be fine, and they should not hurt....until your body changes again and you get to go thru it again. I can't stand to walk any distance, with out my orthotics. I am supposed to wear stockinette under my hand and thumb ones...but I get cheap and just cut up old thin socks. Oh, I can only wear one hand splint at night, I alternate...you can't stand to wake up and be all tied up. The night ones for my hands keep my wrists from bending inward. (I don't know if I explained that very well....) They are not like carpal tunnel ones, but custom molded plastic that also keep fingers from curling under.

Also, it is important for orthotics not to rub on skin...ulcers in PN are nasty to heal, so it is important to let the PT or orthotist know if anything doesn't go well during 'break in'. That is what people with CMT refer to when they say they should not hurt, and they should NOT hurt, past the initial break in, once your gait is adjusted and you are used to the new positioning. If they do hurt, or any skin is being rubbed off....go right back to the orthotist...right away, so you don't get nailed for paying for a bad fit! They cost a fortune.

It is also important, in my opinion and my orthotists opinion, to try to go without, so all muscle strength is not lost. Hope that clears things up.

Thanks everyone for you replies.

I have had numerous blood tests done for many things, Glucose, thyroid, auto immune. All normal.

About 12 years ago, I got very ill with a strange virus, I started losing pigment in my skin, (mother and sister also have same disorder) my hair got thinner, I got very tired, my sed rate was high and I suffered a strange arthritis. Slowly I improved, felt better, but since have had many strange aliments. My sister was diagnosed with Lupus, my mother 83, has has brittle diabetes, but otherwise healthy. My doctor states that my ANA is normal levels so I don't have Lupus.

Now, the PN, its really scary, and I feel lost seeing doctors, and so many different opinions.

I am very light sensitive, sound sensitive at times too, I get lightheaded often, and just a over all feeling of not feeling good...!

So, needless to say, doctors just state that they do not know what is wrong with me, and lead me to believe that I suffer anxiety.

Feeling depressed, and frustereated. And scared too!

Patty