Personal Account Of Living With Neuropathy

Today's post from trialx.com/curetalk (see link below) illustrates that although the causes may be very different, the effects of neuropathy are pretty much recognisable to all. This lady has chemotherapy-induced neuropathy and she clearly has severe problems. It's important to realise that not everybody ends up with such life-changing neuropathy (for most people, the symptoms are much milder) but many do and daily life becomes a struggle just to get through. She looks for the plusses and makes the very best of her condition - a lesson for us all.

Peripheral neuropathy (PN) revisited – Part One

Pat Killingsworth December 22, 2012
Yesterday I noted how “my peripheral neuropathy (PN) is off-the-charts lately.”

There is no denying that my PN is getting worse. I don’t notice it much because of the carefully balanced series of drugs and supplements I take to help control my symptoms.

I slept-in today. NICE!

But I payed for it. If I stay in bed too long in the morning, that means I haven’t taken any anti-PN meds for over eight hours.

My legs below my knees begin to feel hot and tingle. My feet feel like they are on fire. And my hands are so stiff and painful I often drop the pills that will help control my symptoms later that day.

Sunday we stayed in bed and watched the news shows on TV (we are both political junkies) in protest of losing an hour for daylight savings time.

By the time I tried to get out of bed I could barely walk. Every step was excruciating!

But like a miracle, within 20 minutes the pain and discomfort were under control. And an hour later I was out with Pattie, walking the dog along Pine Island Road, watching fiddler crabs scurry back into their holes at low tide.

There are two threads I would like to cover here. My worsening PN, and the way I am able to manage the symptoms so effectively.

I have written a number of times about tips various readers have shared with me to help control PN symptoms over the years.

Last June, I wrote one which featured a half dozen or more links to Myeloma Beacon columns and other articles I had read or written on the subject over the years:Tips To Help Minimize The Pain And Discomfort Caused By Peripheral Neuropathy From The People Who Know Best: Our Fellow Patients

Disregard the lines that you will see struck-through the Myeloma Beacon links. I checked them and they still work.

One of the most interesting articles I mention in that post covered an experience I had at the ASH meetings in 2010.

I was asked to participate in an IMF focus group about PN. It was a wonderful experience and I learned a lot. I will never forget the struggle several of my fellow patients had with their extreme PN symptoms. One poor woman could barely walk. Another couldn’t wear shoes because her pain was so bad–she wore slippers to the event.

I never dreamed that might be me! But lately I’m not so sure…

In the post I describe my worsening PN:

“Last week I finished my third of four scheduled RVD (Revlimid/Velcade/dexamethasone) chemotherapy cycles. The first two, three week cycles didn’t seem to cause much increase in my PN.

But there were hints my twice a week Velcade infusions might be leading to a PN problem.

One day I had a cramp or “stitch” in my side which lingered for hours. Another morning I experienced sharp pains on the bottom of my feet. Both issues resolved themselves without further incidence.

That is, until the start of cycle number three.

BAM! Mid-week my hands became so stiff I could barely bend my fingers. One week later, I experienced what I can best describe as “full body neuropathy.” My body felt like a tuning fork for days. One morning I woke-up and my face was numb for hours. And in the meantime, my hands and feet became increasingly numb. It was becoming difficult to walk. My PN now reached above my knees, with hot flashes shooting down my right leg very few hours. Freaky, disarming–and more than just a bit inconvenient.”

Fortunately, something as simple and groundbreaking as switching to sub-q Velcade helped a lot. For the most part, it put an end to my “full body neuropathy” and also improved the amount of tingling I felt in my feet.

But unlike a majority of myeloma patients, my PN seems to be aggravated by Revlimid. And unfortunately, once my symptoms worsen, they rarely improve very much–even after I stop using Revlimid for a while.

This is a rare week-off of my RVD (Revlimid/Velcade/dexamethasone) therapy. No Velcade or Revlimid this week. Today is Thursday. My hands are exceptionally stiff, even after taking my meds. It even hurts a bit to use the keyboard.

My feet are numb and feel like they are asleep. It is time I admit to myself the reality that my PN is becoming more difficult to manage.

Tomorrow I will rummage-through my medicine cabinet and list all the anti-PN meds and supplements that I am currently taking. I will also share some of the suggestions I have been receiving from readers to help.

By working to improve my worsening PN symptoms, maybe others who are suffering from PN can improve their quality of life as well. Worth a try, right?

Feel good and keep smiling! Pat

http://trialx.com/curetalk/2012/03/peripheral-neuropathy-pn-revisited-%E2%80%93-part-one/

My Diabetic Neuropathy A Personal Account

Today's post from kerrykobashi.com (see link below) talks about his discovery that his diabetes had led to neuropathy and how he felt about that realisation. It's always interesting to read about other people's personal experiences with neuropathy because it helps us put our own into perspective. Whatever the cause of your neuropathy, I'm sure you will recognise elements of this story.

I Got Diabetic Neuropathy.
Published on September 18th, 2014 | by Kerry Kobashi 
 
For the past 4 months I’ve noticed my body screaming out in pain during the night. When lying down in bed, I have been getting harsh, quick prick like pain in my thighs, legs, and toes. Sometimes, I get it in my hands and arms but on less occasion. They come randomly, and when they hit, it freaking hurts.

During the day, when I walk, my legs and thighs would get really weak, sore and tired. Looking at myself physically in the mirror, I look in good shape. But, there is a noticeable problem of atrophy in my thighs and legs. The muscle mass is missing.

Earlier today, I went to see a neurologist and described to him my symptoms. As we talked about my situation, he basically sat there in his chair typing into a computer everything I was saying. Strangely, he never came to any conclusion what I may have. I mean, I did tell him and write on the patient information sheet that I am diabetic.

Now mind you, I was waiting during the entire office visit for him to recommend a drug to help me with my immediate pain. Yes, you know I’m in pain! Instead, the doctor wants me to go through tests including MRI LS Spine scan, and an EMG/NCV on my legs. The MRI I am to get within the next two weeks and the electro tests on my next office visit which is in two weeks.

But Doc, I’m in freaking pain!

Now, I had seen on a television commercial about a month ago a prescription drug called Lyrica. It is used to treat muscle and nerve pain caused by diabetes. I asked him about it. He responded that he will prescribe GabaPentin instead.

Late tonight, I did a little Internet research. I’m pretty sure that I have diabetic neuropathy. This is basically my nerves being damaged from high blood sugar levels from diabetes. This got me thinking. The Mayo Clinic says there is no cure for diabetic neuropathy. The only ways to make the patient feel better is to reduce the blood glucose levels by eating right and getting regular exercise. That, and prescription drugs like GabaPentin.

So I basically see no point in an MRI scan or a very painful electromyogram test where they stick electrodes on my body, insert a 2 foot long needle into my leg, and turn on the electricity (cringe). I already know what I got and its diabetic related.

Let’s see if GabaPentin (Neurontin) gets rid of the pain. I figure its going to take a few weeks to get into my system. I’ll update this post as time passes to give you, the reader, an idea of what I’m going through. I will also from time to time, write about the idea of eating foods with a low glycemic index. Talk about the index, post diabetic food recipes, exercise ideas, and tools to assist diabetics like myself.

Diabetes sucks. Let’s get through it successfully together.

http://kerrykobashi.com/life/got-diabetic-neuropathy

Is My Neuropathy Going To Get Worse Personal Account

Today's post from neuropathysupportnetwork.org (see link below) is written by the very well respected campaigner for better treatment for neuropathy, Lt. Col. Eugene B. Richardson. He talks about his own neuropathy but especially in this case, he tries to answer the question whether someone's neuropathy will get worse. It's almost unanswerable because everybody's case is different and neuropathy is one disease that hardly ever obeys the rules that most normal diseases do. This article is very much worth a read because I am sure it's a question that almost 100% of neuropathy sufferers have asked at one time or another.

Will My Neuropathy Get Worse?
Posted May 25th, 2011 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS 
 
One issue neuropathy patient’s face is the fear that their neuropathy will grow progressively worse. Neurologists call this a progressive polyneuropathy. The truth: no one really knows if your neuropathy will worsen, stay the same or disappear. A neurologist shared that this may have more to do with the underlying cause of the neuropathy than any other issue.

I speak of this very fear in chapter twelve, Focus, in the DVD “Coping with Chronic Neuropathy”, and if you have not viewed this chapter, I suggest that you do so. The viewing will provide a better perspective.

Neuropathy patient fears are often increased by the coming and going (remitting and relapsing) of neuropathy symptoms. Too many doctors still fail to understand this reality for the neuropathy patient, yet these patterns are a medically confirmed fact. Better recognized are the same patterns for some forms of MS (Multiple Sclerosis)!

Neurologists confirm that there are acute neuropathies that come on suddenly and then the symptoms disappear. In other neuropathies symptoms occur, disappear and then return at the same level. Other neuropathies occur, disappear and then return at increased levels and in more places of the body. Others come, go and then go away for years only to return with a vengeance! The chronic neuropathies and polyneuropathies which increase for years are often referred to as progressive polyneuropathies. The mystery is increased as there seems to be no rhyme or reason for these patterns. The only thing I noticed is that when I increased activity, I have increased burning, pain or other symptoms and I would guess that this was due to making damaged nerves work.

For years between the emotional highs when my symptoms remitted (“Hurrah, they’re gone!”) and the emotional lows when they relapsed (“Oh no, they’re back!”), I was tempted to worry that my symptoms were going to worsen and guess what, they did! But one has to ask the question, did the energy spent on worry change anything? No! What I re-discovered was what I learned in Sunday school. It was better to spend my time and energy finding a doctor who was trained in the clinical approaches to neuropathy then to waste energy on worry. I needed a doctor, not worry, to focus on my symptoms, a doctor working with me as a partner, while treating the symptoms and looking for the cause. I needed a medical Sherlock Holmes, not time worrying about what might happen.

This approach maintained a focus on self empowerment by learning all I could, while prodding the doctors with questions that helped them think and act. The most important question for you is not, will my neuropathy get worse, but what is the underlying cause? Spend your energy looking for the cause, as no one knows if your neuropathy will worsen or not.

I know that for so many of you neuropathy has been a progressive illness which worsened over the years. Conversely, my progressive polyneuropathy has not killed me, for my neuropathy symptoms began at age 31 and I am now 72. Thirty-one years into the symptoms with a million denials with a diagnosis beyond crazy to idiopathic neuropathy, I was given one drug which drove me to talk backwards and then another that reduced pain by 80%. Five years later with the miracle of IVIg I am able to keep breathing and the chest muscle spasms stopped while reducing other mind numbing symptoms. This took many doctors, lots of research and knowledge, while asking good questions and giving doctors documents from experts. It may have been fear and anger which drove me forward, but it was these focused actions that brought help, not dwelling on my fears!

It is important to know which issue is important as you set goals for getting help. It is important to focus your energy on learning, getting help with symptoms and finding the cause and solutions for the diagnosed illness. I do not mean idiopathic neuropathy (of unknown cause). It is very difficult to find a solution, other than for symptoms, when the neuropathy is of unknown cause. Many times it is a matter of the doctor taking the time, helping the doctor think and pushing the system to do the testing that is now available.

Tests that are available will with good thinking and clinical training allow the doctor to know if the neuropathy is large or small fiber, motor, sensory or autonomic, axonal, immune-mediated, demyelinating or inflammatory and these clues can lead to a possible identification of the cause that is more helpful than idiopathic. Unfortunately many neuropathy patients are simply tossed into the pile of idiopathic and sent home.

RESOURCE: Read Dr. Scott Berman’s book, as this book may provide insight and is available at the website www.neuropathysupportnetwork.org RESOURCE TAB. Dr. Berman has untreatable CIDP (chronic inflammatory demyelinating polyneuropathy) and his book speaks to all neuropathy patients as one who has been in our shoes with many neuropathies. Dr. Berman empowers us to face creatively the emotional issues we ALL face in chronic illness.

PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.

http://neuropathysupportnetwork.org/blog/2011/05/will-my-neuropathy-get-worse/

Cannabis For Chronic Pain A Personal Account

Today's post from americannewsreport.com (see link below) is a personal article talking about whether to take marijuana for chronic neuropathic pain or not. I'm sure many people have been faced with the same dilemmas but it is clear that the political climate is changing in this regard and more and more places are allowing cannabis/marijuana growth for just this very purpose. Science seems to back up the argument for cannabis as an efficient pain relief and when nothing else will help, it's certainly an option. If you are unsure about how to go about this, or of the legality in your own area, it may be worth contacting your doctor or local health authority for advice.
More articles about cannabis/marijuana for neuropathic pain on the alphabetical list to the right of this blog.

MEDICAL MARIJUANA. IS IT TIME?
Posted by Carol Levy THURSDAY, JULY 18, 2013

A Pained Life: Changing Attitudes about Medical Marijuana
July 17th, 2013 by Carol Levy, Columnist

When I was in my early 20’s, years before the onset of my pain, I was offered a marijuana cigarette. I didn't want it, but the pressure from my friend was so great I finally took it. I puffed on it once. I did not inhale.
I was not sure what effect it might have on me or how it might make me feel. I was afraid of it.
A few years ago, feeling desperate for anything that might help with the pain, I googled “medical marijuana.”

I found a site in Canada. The only requirement was that you send them a note with the name of your medical disorder. The seeds arrived in the mail and I planted them in the laundry room sink.

They were fast growers; within a week or so I had some beautiful plants.I wasn't sure how to use them. I also wasn't sure I had the nerve. It turned out my worry was for naught.

On my way to check on the plants I walked into my living room. My cat Rooty was running around the room, really, really enjoying herself. That was out of character. As soon as I walked into the laundry room I saw why. All of the plants had been eaten down to the root.

It let me off the hook. I no longer needed to make an active decision about trying “pot” for my pain.

I have been sitting on the sidelines on this issue. Although it has disturbed me that, despite proof of the benefits for those with cancer pain, loss of appetite, HIV and other disorders, medical marijuana has remained illegal in most states. Even when I am asked to sign petitions about making it legal I have not done so, not being sure exactly where I stand on the issue.

But then my self-interest came into play.

I have “phantom pain” of my face (anaesthesia dolorosa). This is a neuropathic disorder. It often defies treatment.

A recent study published in The Journal of Pain about vaporized cannabis significant improving neuropathic pain changed my mind. Although I have not become an active advocate, at least not yet, I follow the debate over medical marijuana much more closely. I am more willing to add my name to the petitions for making it legal.

As chronic pain patients, we are under fire from the DEA. Their rules have made it more and more difficult to get the narcotic medications many of us, including me, need. It has also made it harder for some patients to find doctors willing to prescribe them. That makes it even more important that alternative therapies be found.

Marijuana is one of those therapies.

The study is a small one, only 39 subjects, but the researchers found a significant benefit for those patients who have treatment resistant neuropathy. That would be me.

I know there are many reasons and many people who do not want to see medical marijuana legalized. However, for me and many others, it could mean the difference between staying disabled and being more able. Dare I hope, maybe even becoming “able.”

 http://americannewsreport.com/nationalpainreport/a-pained-life-changing-attitudes-about-medical-marijuana-8820892.html