Hello I am a new member and am looking for others who might suffer from Peripheral Neuropathy as a result of chemotherapy?

I've had breast cancer twice, last time in 07. Since then I have developed a very painful neuropathy from my feet to my waist.


Anyone have this and what do you do? I am on Neurontin 1800mgs. a day.
It doesn't seem to be working, I can hardly get around my legs hurt so bad and are weak. I'm beginning to wonder if I am getting bone mets so getting frightened.

Thank you all so much,

PJ

Welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene

Hi, and Welcome to NT

I'm so sorry you're going through so much right now. I hope things get better for you.

I'm giving you a link to the diabetic site, because they suffer with neuropathy lots of times.

http://neurotalk.psychcentral.com/forum53.html

I've also seen LED and infrared lightz pads that have helped with neuropathy. It's a pet project of mine right now. It's very interesting technology. The Neuropathy Centers of America have endorsed the lightz. I have a CD on it and I did find it on YouTube. I could probably find it again if you're interested in watching that.

There's lots of friendly people here to get to know. See ya around on the board.

(Broken Wings)

i'm very interested .. would love to Learn about this "pet project' of yours ... hope you will share more ....
about these, and other Treatment/ options (besides Meds) for neuropathic pain.

Hello all

I have been reading around the threads and have been struck by two things. Firstly the bravery and dignity of the members here facing very painful and often progresive neuro problems but also there appears to be a common complaint about the insensitivity of the medical profession when treating or dealing with people with these problems./

Having read a lot of the posts I dont feel my problem is so bad really. I was admitted to hospital after experiencing loss of power in my right leg and excrutiating pain. It took a long time to get the pain under control and I had MriS of spine/head/ct abdo and numerous blood tests. So far nothing. Seen by a very abrupt neuro doctor who, after examination has diagnosed femeral nerve neuropathy. I have a further mri booked to look at the hip phlexus to see if there is any obvious causative lesion.

I am taking gapapentin 1200mg with tramadol 100mg 4 times daily. I take paracetamol and dyhydrocodien for breakthrough pain.

I already have some power restored in my leg and walk with a stick though already I can walk unaided but obviously limp.

I am determined to not let this get on top of me and will be going back to work on Monday - just office stuff to see how I get on.

I am afraid of the pain attacks that I was requiring morphine for but so far it has been managable.

I just wondered if there was anyone else out there who has had this form of neuropathy and how it went.

I did read one very inspiring post and forgot who wrote it. From someone who has been on this board for four years and could not initially walk. This person now walks and does yoga - I wish I could remember your name because your post brightened me up so much.

Hello and good luck to all.

Byron
x

And you all should come on over and discuss these conditions with the people on the peripheral neuropathy forum--lots of expertise over there (there are at least several people with chemotherapy-induced neuropathy, and some people have intermittently discussed compressive mononeuropathies of the femoral area):

http://neurotalk.psychcentral.com/forum20.html

Hi

You sound like a fighter too. I think I do it because I'm just too stubborn to let disability win, although I realize I'm walking a tight rope, with no net. "Live to fight another day" and "fight like hell" and "life keeps coming at you" keep me going.

I would like to caution you about preventing falls and injuries. When you're new to conditions that alter your gait, it tends to cause unforseen mobile issues. Things always seem to happen to that bad side. What you've done effortlessly may take a little forethought to prevent an injury. Just know that you're vulnerable to injuries when you're not yourself. Clark shoes gave me stability and comfort, especially the mule type. Give yourself some extra time to think about the task/challenge before you just take off like you used to. avoid uneven terrain for now.

I do believe in Yoga. Do it for the rest of your body. I had to have chairs, blocks and pillows around when I first stated. Just do what you can. It will help. We don't have anyone here to instruct us right now and it's not as fun by yourself. About to get hubby into yoga. He likes watching right now

and about when, in time, did you read the post. I don't remember it, but I don't have the best memory.

Hope things go smoothly for you at work.

(Broken Wings)

Hi PJ, and a warm welcome to NeuroTalk! You will be amazed at the number of helpful, caring, and just plain nice people here.

I'm sorry for your pain, and I hope you find relief from it.

I also love to read. I devour books. Here's a link to a forum I think you'll like.

http://neurotalk.psychcentral.com/forum108.html

So glad you found us!

Hello Byron, and welcome to NeuroTalk! It sounds like you are finding your way around on the boards. Feel free to jump in wherever you like.

Warm, wonderful people, and lots of interesting forums and topics make NT a great place to hang out.

We're glad you found us!

(WARNING - very long)

Yes, will share what I've been doing.

My accident was in Oct 2000. It's been a long, painful, drawn out recovery.

In about 2007, at the PT department I was in, a saleperson loaned PT a light pad for patients to try. I tried it then for about 2 weeks. It gave me some relief in my arms, neck and back. It usually took 2 to 3 hours a day to treat these parts, and I didn't know how to use them at this tme. More is not always better.

Another PT patient got his workers comp to pay for his. He was kind enough to lend it to me, on two extended occasions. I will always be greatful to him for that. I continued to treat my upper body and back and got to where I could shower, fold towels and lift cookers and skillets without excrutiiating pain. I was sold on the lightz but didn't know how effective it could be as I had a long ways to go and many areas to heal.

The last time he loaned me his unit, I kept it about four weeks. Got out of my flare, avoided a outpatient thumb surgery, and then just kind of plateaued with it at this time and returned it to him. Then about three days later his house burnt and yes burnt his up. Comp is not agreeing to pay for him another one right now. We're working on that.

My husband got in an accident and had some injuries, broken bone in right hand, shoulder and neck injuries. We got his PIP ins (personal injury protection with auto ins) to pay for a larger pad $1,699+shipping. Until he had his injuries to deal with, he thought I was just stringing Christmas lights around my neck.

It helps his neck spasms tremendously. Not so much the other parts but because he don't want to TREAT. He gets like instant relief to the crick/stiffness in his neck, in about 30 minutes to 1 hour. He thinks it should all be that way.

Well, I'd accepted my right leg issues since 2000 because it was the least of my problems and my leg just came along with me.

I began treating my leg in Dec 2008. My accident was in Oct 2000. I have endured a lot of pain by walking on treadmills, mostly for the rest of my body because it certainly wasn't helping my overall pain picture. from 2000 to 2004ish maybe to '06, 20 minutes was a very painful event, causing lots of pain at night for 2 or 3 nights and then I was scheduled for therapy and would do it all over again. I worked up to 30 minutes, doing better with time and therapy, and it was not as painful but would still keep me up at night. Most people would not have done it. I also went long periods without walking, to avoid the pain, but found my leg was tighter and stiff and hurt all the same. Not as bad at night, though.

Just telling about the leg issue because I'm very amazed because I know how hard I've tried walking, looking at the clock, praying my life away, literally, just to get through the 30 minutes.

Well, with continued treatment on my leg, I now am walking 45 minutes, 3 times a week, when I can get down there, and 20 minutes of that is at 6 mph. I get out of breath. I don't have the bad, debilitating leg pain that prevented me from walk/running. I now can walk in K-Mart without the pain from my back and leg. All this leg improvement since Dec 2008. and since Dec 2008, I had a pulled groin muscle in my left groin area and had to deal with repetitive stress injuries to the top of my left foot where I had not been active for so long. Me and my therapist know that's from me being deconditioned. I'm over that now and am getting stronger.

Well, in Dec, I got so excited about my leg recovering, still am, I ordered and PAID for 2 Pain Busters by the end of Dec 2008. One to demo and one to sell. I am compelled to help others by this technology. I've been loaning all 3 out, leaving myself and hubby without one at times, to close family and friends, getting vital feedback and great raves about these pads. They are expensive, so not one sale. I do understand. I, myself, wasn't willing to pay $1,499 for the one I was using. At one time in
'07 I was going to and take it off my taxes but my specialist wouldn't give me an order for that. He said, "You'll still need me." In 2008, after much treatment, he gave me a statement saying I wasn't a candidate for rib resections and scalenectomies. I was there for a trigger thumb episode at that time. He still won't address the lights. I think he's heard about them.

I'm a court reporter, so I've met a lot of attorneys and doctors over the years in my business. I have been letting a few of those attorneys who have problems try it for a couple of weeks. All have had improvement... yet not one will buy.

My family doctor and friend for 25+ years has tried them for his knees. He's very impressed with the results. He has offered to let me use his office, for the hours he's not in there, to treat his patients and anyone who would be willing to come in for treatment. He's not going to charge me any rent and I can charge what I want. Checking out the legalities of this. I can distribute now, but that would be more hands on. Not illegal but borderline. I do want to pursue his offer in time. If it wasn't helping him, he wouldn't have offered that... yet no sale at this time.

My mother is diabetic. She had a stroke Xmas morning in 1997. She has left-sided paralysis. She is somewhat mobile but relies on a wheelchair to get around. It's safer for her too. Well, we have been lifting her left leg up and down, in and out since that time. I took her the large pad in January 2009 and she treated the bottom of her feet, left leg and her hand/thumb -- gets sore and stiff from wheeling around. Well, with mom, it's a miracle. She can now lift her foot up off the floor herself. She has extension in her left leg, meaning she can sit and move her left leg in flexion and extension range of motions. She can rotate her foot at the heel. And of late, she can now move her big toe and raise her foot up off the floor at her knee. Her health is a fragile state with all her diagnoses. At this time, she, herself, is very reluctant to use the lightz because she's afraid she'll start having feelings in her leg and foot and it MIGHT be painful because of the neuropathy. Right now, she has no feeling, no pain. Couldn't even tell she broke her big toe last fall. She says she has tingly sensations running up her leg when she's using the lightz. I am going to her next doctor visit to discuss it with her doctor. I know the Neuropathy Centers of America video did say, "these lights work and we know what to do with them."

I'm checking it out but know it has helped me and the others I've let try them.

Monday I'm going to try a more documented approach on a new stroke victim/friend. Actually she's had two strokes. the first one was light and never sought treatment, thus resulted in a second. Now she has right-sided paralysis and she's still working in her restaurant. I did warn her daughter about blood thinners and knives. Her mom is a stubborn lady and like most, will try anything if it will get her mobility back. She has just recently had this second stroke with paralysis. She has no ins, so keep her in your thoughts and prayers. I know if it can my mother it should help her. I will keep this board posted, on a new thread. I think we've hijacked this one. Sorry.

I am excited about the lightz. They have helped my pain level tremendously. I'm on a mission to help others. I'm venturing into wherever it eventually leads me. I envision a mobile unit, like a used handicapped transportation bus. That way I would be able to travel where its needed. If it helps a few, it's worth it to me. I figure money will come from it eventually. I can distribute now and I'm being told I don't have to but I need to get my license in esthetics. That way I can actually treat someone as opposed to just selling them. There's not one local school here so I'll have to stay somewhere as TOS will not let me drive 2 hours, one way, to get the training. Just working out a schedule so that can happen. Looks like more in August, as my daughter-in-law, who has MS, is my editor. Right now, my stepson is in his last year of residency in Penn State, so they depend on her income right now. That will give me time to get ready for the change and figure out how to do this.

You can Google and find info. You can find them cheaper. I also know there's patent pending and copyright suits going on. I know the ones I'm using are FDA approved. I've always found there's reasons why one place can sell something cheaper. All are not the same. I know this particular one works. I am checking on cheaper but so far I'm sticking with the tried and true. You can PM me if you want to know more about mine.

I would appreciate any feedback, good, bad or indifferent.