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/

N Is For Neuropathy A Personal Story

Today's post from http://frecklesandapinktiara.wordpress.com (see link below) is a personal account of having neuropathy as a result of lupus. There will be things in this article which will strike a cord with most neuropathy sufferers and it always helps to read about how other people are dealing with the problem. If you're experiencing the same symptoms, you should talk to your doctor about the possibility of having neuropathy alongside your original illness. 

“N” IS FOR NEUROPATHY, PERIPHERAL NEUROPATHY
April 16, 2013 · by Monique  in Blogging from A-Z April 2013 Challenge,


Last night while PJ and I were putting everything away so we could settle into bed, I irritated the crap out him. In the process of trying to move my pill cups, I dropped them, sending my meds into a hundred different directions. Then I tried to grab one of my cups, which are the acrylic cups with lids and acrylic straws that don’t fall out for this very reason, and dropped it too. Since it’s essentially a sippy cup for grown ups, only a few drops came out. Since I have some mobility issues, I have a Winnie the Pooh crib organizer hanging on my wall next to the bed. I keep things like my hair brush, lotion, deodorant, facial moisturizer, headbands…things like that in it. Well, as I was trying to put my brush up I missed the pocket and dropped it onto the night stand right where Prince Charming had just put the laptop, and he told me to stop helping. lol

Now, from the outside looking in, you’d think my name was Grace. That’s the problem with an invisible illness though, nothing is what it seems from the outside looking in. Because even though I have been touched with klutz stick, what was going on was Peripheral Neuropathy.

A few years back, I started getting this really odd feeling in my hands and feet. It was almost like they fell asleep, but it also felt like my hands and feet had swollen to the point of stretching my skin. They felt very slick to me. I chalked it up to another attempt by Lupus to try and make me look completely crazy. Over the course of the next year or so, those sensations would happen more and more. After a while, the tingling sensation started to precede these very strange feelings that I can only describe as an electric like buzzing bolt that would shoot down my arms. The first time it happened, it happened in my left arm only, about 6 months after a heart attack {oddly enough that was 3 years and; 2 days ago…seems like a lifetime ago though} and I was terrified that I was having another one. After a visit to the E.R, I had yet one more new medical diagnosis to add to my collection, Peripheral Neuropathy.

Peripheral Neuropathy is a condition resulting from damage or disease to the peripheral nerves-the motor, sensory and autonomic nerves-that connect to the spinal cord to muscles, skin and internal organs. The causes can range from Diabetes, an unbalanced diet, heredity, and you guessed it…autoimmune diseases, especially systemic ones.

As it has progressed, the sensations have evolved. I don’t get the tingling as often anymore, but the recurrence of my hands feeling slick has increased. It got harder and harder to turn a door knob, or open things when it required grip. And about 6 months ago I started dropping things a lot, and even though I was using my walker I started falling again. I couldn’t understand it. It was like the air was tripping me and gravity went into hyper mode to pull things out of my hands.

And then I found out that if your sensory nerves become damaged that slick feeling in your hands and feet prevent you from being able to tell that you don’t have your feet firmly planted or that you don’t have a good grip on things you’re holding even if you feel like you do. Which meant that neither the air or gravity had it out for me.

Since Peripheral Neuropathy is unique to each person, and the sensations are so odd, it’s easy to over look the signs and even easier for people to look at you like you grew a second head right there in front of them when you’re trying to describe the symptoms. But because there are some treatment options that might be available to you, you need to talk to your doctor as soon as you start to experience any of the symptoms to help prevent any further damage or possibly a cure.

If you have a Facebook account, tomorrow The Neuropathy Association is hosting a Facebook chat, “Advances in Chemotherapy-Induced Peripheral Neuropathy Research” on their Facebook Page, starting at 7 pm Eastern time.

http://frecklesandapinktiara.wordpress.com/2013/04/16/n-is-for-neuropathy-peripheral-neuropathy/comment-page-1/

Compression Neuropathy I think A Personal Story

Today's post from ehlersdanloscontemplations.wordpress.com (see link below), is another personal story of life with one of the many forms of neuropathy. Experience has shown that readers like reading about other people's stories in this regard, so long as it's not too often and not a continuous pity-party. This article highlights the fear many people experience when they start to feel 'mysterious' neuropathic symptoms that can't easily be diagnosed. It goes on to reinforce the importance of having doctors that can not only diagnose and treat their patients but support them too. The old 'bedside manner' makes such a difference when the situation seems a little overwhelming.

Numbness, Compression Neuropathy, and Storytime
November 22, 2015 by Stephanie McManus

So, I want to tell you about the onset of a new problem I was dealing with this year. It was eventually diagnosed as compression neuropathy (in my hips). Basically, my ligaments in their looseness cause some sort of problem in my hips and impinge nerves from the base of the spine. I now lose feeling in my upper legs and up into the… bum, when I walk ‘long distances’ and then sit in a normal upright position.

The only relief I’ve found to prevent it from happening is to minimally, sit ‘normally,’ and to spend more time slightly reclined or standing or laying down. Not cool. Whenever I think, “no, I’m sure it’s fine and I’m going to vacuum and then cook and then walk the dog…” it comes back, and despite knowing what it is, I’ll admit, it disturbs me.

My neurologist at UW explained the compression, diagnosed a little vaguely as compression neuropathy, is caused by the hypermobility in my hips and repeated stretching of the ligaments followed possibly by responding muscle spasms. She did research on case studies with EDS patients with these symptoms prior to even seeing me, and she was able to narrow down the diagnosis. What?! It’s what we all hope for in a doctor, that they’ll do their ‘due diligence.’ I almost cried when she came in and knew what Ehlers-Danlos was and familiarized herself with the secondary complications we can develop. You’ll understand the tears of hope?… joy?…if you’ve been diagnosed. 

Anyway, I don’t notice a lot of this going on in my hips, because it’s normal for me and muscle spasms elsewhere feel more troublesome day-to-day. Plus, as I’m sure you’ll understand I start to tune-out sensations that interfere with ‘living life.’ You learn to survive this, and more than surviving, you eventually learn to live more often than survive. Or, always strive for it… every situation is different.

This troublesome, embarrassing, and potentially serious problem started in May of this year. I ignored it! (Don’t do that… ). In June, very ironically after a visit to the first doctor I could find after we needed to move to Washington for my husband’s job, I ended up in the ER. :sigh: My doctor was a whopping 2 hour situation to get to. I drove to Bremerton from our rental in Gig Harbor, rode on a ferry for 45 minutes, sat upright in a chair for an hour waiting for said appointment at a coffee shop, then walked a mile to the doctor’s office to then repeat this going back home.

On the ferry, of all places!, that’s when my legs up the inner thighs all the way into my lower back, and in-between, went completely numb. No feeling at all.

I called my doctor who told me to go straight to the ER. My husband was riding back on the ferry with me from his work in Seattle watching as I laid there unable to 1. panic, because there was nowhere to go or 2. talk, because I was shocked thinking it was the onset of something called cauda equina, an emergency that requires spinal surgery and can happen in EDS.

After many hours at the ER and imaging and a slightly freaked out looking doctor (that’s never a good sign), I was told they didn’t see evidence of cauda equina at this time, and I’m immensely grateful. That’s that, and you know the rest.

So, the point of my story is to illustrate you’re not alone in dealing with ‘mysterious symptoms,’ that eventually, hopefully, are figured out. Some things I deal with remain a mystery, and I’m okay with that right now, because I will keep pushing for a good team on my side when I can in-between living. We fight too hard for good care. But, it’s also important to keep fighting for good care. I got unbelievably lucky being pushed into an appointment with the top neurology clinic in the country. Lucky isn’t my normal, but look, it does happen!

A sad fact, I started experiencing this problem over a year and a half ago off and on. I’d previously been admitted to an ER in Oregon with the same symptoms. This is how I knew about the possibility of cauda equina. But, then, I had been summarily dismissed after the physician couldn’t see the problem on imaging, as if that doctor’s job was confined to diagnosis by MRI lacking any clinical insight. Well.

I’m happy I have such an intelligent and discerning doctor now. I know it will still be difficult because of the lack of awareness about EDS. I’ve continued to experience weakness in my legs and numbness, but I was told to expect it. The difference is I now have a plan and have been told when this could be a more serious problem, and how it will be handled.

Knowing you are cared for and looked over makes all the difference in the world. Right?

https://ehlersdanloscontemplations.wordpress.com/2015/11/22/numbness-compression-neuropathy-and-storytime/

Peripheral Neuropathy Reappears Personal Story

Today's post from reasonablywell-julia.blogspot.com (see link below) is a personal story of someone who has more than one neuropathic problem and it highlights the difficulty we often have, of differentiating between neurological problems and their causes. In this case, the original cause was the aftermath of surgery but just as you think you can pinpoint where the symptoms are coming from and why that has happened, other symptoms appear or reappear, showing that the nerve problems have expanded, leading to new difficulties and new medication choices. Many readers will identify with the frustrations felt here. Follow the link to see more of her story.

Peripheral Neuropathy -- Again 
Posted by Julia Oleinik Thursday, January 22, 2015 
 
Guys. I feel like a walking zombie lately.

I've definitely chalked some of my zoned-out spaciness to recovering from our trip; but I think that this particular fogginess has a different quality than my usual post-vacation crash. It's hard to explain but after this many years of autoimmune fatigue and brain fog, I know what THAT feels like. And this isn't it.

I also suspect that I know what's causing it all. It's complicated. Ready for a long story?

Over the past six months or so all sorts of things have happened to this old body of mine, the biggest being the symptoms from spinal stenosis and the laminectomy that followed. As I healed from the surgery and the compression was relieved on those nerves, I realized that the radiculopathy from the stenosis was masking other neurological problems.

Gee. What a treat.

Make no mistake -- I'm thrilled with the results of my laminectomy. I can walk for any length of time without that terrible radiating pain and numbness in my butt and leg and foot. But the neurological problems that I'm having now have nothing to do with those large nerves that exited my T4 and S1 vertebrae.

When the major pain and numbness went away after my surgery, it unmasked other pain that was not caused by the stenosis: peripheral neuropathy manifested by generalized burning and pain in my feet along with the bizarre sensation that the skin of my lower legs is vibrating. Buzzing. Strange. Worse at night just when I'm trying to sleep.

I have been dealing with PN for quite some time, although to a lesser degree than lately. You can read my earlier post addressing this issue written back in January of 2013 here.

The result is that I have added Neurontin (gabapentin) to my medications, and I have to say that it has indeed reduced my symptoms. But unfortunately along with the good, came my dopey sensations. I have let my doctor know about it's effects, and hopefully after continued use the side effects will decrease.

In the meantime, well....don't be expecting many posts that are coherent.

Do you take gabapentin? How has it affected you?

http://reasonablywell-julia.blogspot.com/2015/01/peripheral-neuropathy-again.html

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

Personal Story Living With Neuropathy Vid

Today's short video from dailymercury.com.au (see link below) is a personal account from one Australian woman living with neuropathy. It will strike a cord with many people. Worth a look over your morning coffee.

Penny Curnow suffers from Neuropathic Pain

Penny Curnow talks about Nerve Pain and Relationships Report.

http://www.dailymercury.com.au/videos/penny-curnow-suffers-neuropathic-pain/17817/

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

Fluoroquinolone Antibiotic Neuropathy A Personal Story

Today's post from hormonesmatter.com (see link below) is an alarming personal story of how taking fluoroquinolone antibiotics changed one woman's life for ever. It cannot be over-stressed how important it is to talk over the side effects of certain antibiotics with your doctor. Fluoroquinolones have long been known to possibly bring on nerve damage and if you have neuropathy already, make it considerably worse. This article is a cautionary tale. Always get advice.

Fluoroquinolone Neuropathy Feels Like Acid Burning and Electrocution  
Wednesday, February 5th, 2014 / Janet Murray
 

My name is Janet Murray, I am 57 years old. I do not even know how to put my health story into words so that the human mind can understand the pain I have lived with. I lived in Canada and had been given many courses of Cipro for various illnesses over the last 30 years. Sometime ago, I began developing a lot of strange problems that no one could diagnose. I had GI difficulties, body pain, migraines every week, severe interstitial cystitis – so severe they wanted to remove my bladder. Thankfully, they did not. I was given many diagnoses too, including Chronic Fatigue Syndrome (CFS) and fibromyalgia. My cognitive abilities became so impaired. I loose words and my memory is shot. I had to leave my job with the Federal Government and work at home, at my own hours. I have been extremely fatigued for the last 25 years, but I never connected the dots between my health issues and the fluoroquinolone antibiotics like Cipro, Levaquin, Avelox and others until I blew out my forearm tendon, a classic post fluoroquinolone adverse reaction. It was only then that I began to learn more about the chronic symptoms that fluoroquinolone antibiotics evoke. I had them all and more. These symptoms didn’t appear all at once, and so it was difficult to identify at first, but over time, my illnesses became readily apparent and progressive to the point that it was no longer a question of if I was poisoned by a fluoroquinolone, but how badly.

Let me back up a little though and give you some more details. For years, I was fatigued and suffering from post fluoroquinolone reactions, but I didn’t know it. During that time, I had a long distance relationship with the love of my life in NJ. He waited and visited me back and forth for 10 years and I visited when I was well enough. When I was finally was well enough to immigrate to the US, I he asked me to marry him and so I stayed and had two wonderful years. We are jewelry designers and did the large shows. I functioned, at very low level and had to rest always, but I was living my dream. Even functioning at such a low level, I was happy after many years of hell.

One year, I kept getting bronchial issues and went to a walk in clinic. I was given Levaquin with Prednisone with NSAIDS and was on small dose of a benzodiazepine. Fluoroquinolones should never be used with steroids and NSAIDS, something I did not know at the time and apparently neither did the doctors. I took this combination again and again and again across that year.

My reaction to these drugs was delayed and so it did not occur to me to link the Levaquin or my past Cipro use to my strange symptoms. I have since learned that delayed adverse reactions are common post fluoroquinolones. After my first script that year I was more tired, could not walk far and something was not right. I didn’t know what though. During the second year I woke up with acid pain in the shoulder and could not lift it. I was told I had frozen shoulder. It was really a tendon rupture, common post fluoroquinolone.

The pain in my forearm and shoulder was horrific. It took 8 months before I could move my arm again. Then I woke up one morning and the same thing was happening on my buttock tendons. I had the same horrific, acid-like pain. Those tendons ruptured. I crawled for 4 months and tried to stand when I could. I could no longer walk, the pain was unbearable.

One morning I woke up and my entire body felt like it was beaten with a baseball bat. I had a shot-like feeling in the base of my neck. I sat up, vomited and shook. The next day my entire body started to shake. I felt like I had been electrocuted. I had sharp pains of electricity though my entire body. My skin felt ripped off of the bones with electric jabs and jolts. I had large jolts of electricity cursing through my body. I sat for 5 months frozen, feeling like I was living in a body of large, angry hornets, stinging me all over 24 hours a day, 7 days a week. The electrocutions were never ending.

My stomach almost shut down almost. Every joint in my body popped and cracked when I moved. My legs would not hold me. I lost the vision in my right eye due to a macular tear. I lost four teeth due severe periodontal damage. Other symptoms include:
Up to 40 mouth sores at a time. The doctors say they look like burns or lesions. I wonder if it’s not a form of Steven-Johnson Syndrome.
Swaying, if walking, dizzy, feeling of being “stoned” in the head.
Sensory chills so severe with stinging that it takes 4 hot water bottles and wearing then down top as well.
Arms and hands go dead and numb
Constant feelings of being electrocuted
Severe bowel constipation
Intolerance to most foods
Body hair stopped growing
My skin has become very thin and transparent with enlarged veins.
Pin prick sores on my legs and what looks like burns all over my body.

On the right, the burn-like lesions all over my body. On the left, the pin-prick sores on my legs.
I experience severe changes in body temperature.
Feelings of terror and anxiety, not related to any surrounding, that come out of the blue
Severe depression
Hyperthyroid

And the strange symptoms go on and on. No one seemed to understand. I was almost dead. I dropped 40 pounds in three months. My heart pounds non-stop. Terrors and jolts surge through me. I was hysterical and crying.

The doctors keep saying I have fibromyalgia. FIBRO, I am being electrocuted..!! It couldn’t have fibro. I sat and thought this is NO normal illness but nothing showed up much on my tests. I have seen 50 doctors and no one can find anything. I feel like I have been poisoned. I soon learned, I was not alone. It was the Levaquin, a fluoroquinolone antibiotic that I have since learned, causes severe peripheral neurophathies, mitochondrial damage, and all of the seemingly unrelated symptoms that I have experienced over the last couple of years.

Right now, I am in so much pain, I cry daily. I wake up with night terrors, heart pounding. My feet feel frozen, as if they are dying due to extreme hypothermia – the kind mountain climbers face when their fingers and toes turn black. That’s what my feet feel like. My tongue burns like a hornet’s nest, day in, day out. It has been a year now, living with all over the body hornet stings and large tree like branch zapping about 40 at a time. I had the EMG and nerve biopsy that shows axonal swelling. I had an MRI showing two white matter lesions in the frontal lobe, the doctors say are consistent with MS or Lyme disease.

I should mention, I also tested positive for the MTHFR mutation that makes methylating vitamin B’s difficult. Even with the axonal damage, no one knows what to do. They tried to give me painkillers but I cannot tolerate them and vomit them back up. I have been on Paxil for years, more because I cannot seem to withdraw from it than anything else. Gabapentin, even at a high dose, does nothing and so I suffer. I cannot take this much longer. I cannot live with the nerve pain. Please help.

A few other clues that might be helpful for understanding this mess. When I tried acupuncture to relieve the nerve pain, it made it worse. The hornet’s nest sting lit up. Ditto for niacin. When I was given niacin, my body reacted very strongly. If there are doctors, researchers, patients, or anyone out there that can help reduce the pain I experience, who can help heal, reverse, or even just slow what seems to be a progression of increasing pain, please leave your comments here.

http://www.hormonesmatter.com/fluoroquinolone-neuropathy-acid-burning-electrocution/

Making Personal Choices About Nerve Damage Treatment

Today's post from livinginalimitedworld.com (see link below) is the personal story of someone living with PRMS (Progressive-relapsing Multiple Sclerosis) but it is also the story of someone making their own choices when it comes to symptoms, severity of symptoms, doctors and the medications they prescribe. There are wise lessons for all of us living with neuropathy here and although the article doesn't talk about neuropathy as such (MS is also a serious neurological illness), it suggests a way of approaching the way our disease is treated and how much we need to take some of the control for ourselves. Well worth a read.

Body science
Posted on May 15, 2016 

I seem to have the twitches today. Not the normal ones that I live with, this is more like a shudder that is travelling through my entire body, but only, in the parts of me that are actually moving. If any part of me is motionless, then I don’t feel a thing. Should I move my hand and say my foot at the same time, the shudder is there identically in both. It’s not only bizarre but it is also mildly upsetting. I know that I have felt it before, exactly when or what caused it then or now, I don’t have the slightest idea. It’s one of those things like so many others, appears, disturbers me for a while and vanishes. Admittedly, it doesn’t cause me any pain, it doesn’t do me any harm, but the same can be said for much of what happens in my body and possibly yours. Yet all of us go on daily, living with these things that no one really cares about because they aren’t going to kill us. Tell your doctor, and they might give you some kind of medicine that might possibly help, but they probably aren’t any more sure about it than we are, plus, they don’t have to live with their side effects.

I learned a long time ago that I had to gauge for myself, just how important it is for me to be rid of this or that symptom. To begin with, I was more than happy to take whatever drug they threw at me. I have and still do have amazing trust in my doctors, but I learned not to have the same trust in their medications. The problem I now know has a huge amount to do with my condition. I didn’t know it then, but I do now, that PRMS is notorious for not responding to any of the range of MS medications. When I was first diagnosed, according to the internet, PRMS didn’t exist. I even questioned my consultant as to why no one had heard of it. Apparently, it was rare, that rare, that the world wasn’t interested and that included the pharmaceutical industry. There are no drugs that are out there, not even the ones designed for MS patients that will ever help me with any of it other than the pain. Both of us, were in a world of discovery as my body was only going to respond if it suited it, not because it worked for others. In the first five years, I was changing drug after drug searching for the ones that would work the best. Then I called a halt to it. I worked out a hit and miss list, I ditched all the meds that didn’t work for me, regardless what my doctors said, and I kept the ones that I could live with. That was my first rule, “It had to work for me”.

That decision was closely followed by the one that said, “Can I live with this symptom, or do I need help”. It is so easy to run to our doctors every time that something happens that is different. Just because it is something that the average person would find terrifying, doesn’t mean it is something to be terrified by. My test mark is to say, “Is this symptom impairing my life”. This tremor or probably more accurately, this quiver, doesn’t stop me doing anything. It slows me down, but it doesn’t actually stop me doing things, therefore, I don’t need a doctor, and I don’t need medication for it. In fact, the only time I really turn to my doctor is when I am in pain. If it hadn’t been for the pain my intercostal muscles and diaphragm were causing me, I wouldn’t have been diagnosed with COPD when I was. Not being able to breathe was something I had grown used to, not being able to breathe and being in pain, was something I didn’t like at all.

The medications that I do take, I don’t know if they work for anyone else, or have even been tested on animals, but they have been tested on me. My small selection that I am on now, may not be the standard for MS, but they work for me and that is what matters. People ask me all the time if I have been on this drug or that one. Partly, because of my bad memory, I’m not always able to say, but I always question, why they are asking me, and are not testing them on themselves. Yes, I have a rare condition that is known not to respond as others do, but I honestly believe whatever our condition, the only way to find out if it’s going to help us, isn’t to read about it, or talk to others about it, it is quite simply to try it, and to remember, you can come off it again as easily as you started it. Our doctors can only advise us and suggest what they think will help. Unless they happen to share your condition, they won’t have tried it personally, and don’t even assume they have prescribed it to anyone else either, remember, all forms of MS are reasonable rare. After many years of practice, when my GP read my diagnosis, he told me I was the first person ever on his books to have the condition. Most of the time, our doctors are offering us a drug they know nothing about, other than what they have read. If it doesn’t work for you, well they always seem to have another one to offer, if you truly believe you really need it.

All of us have different body chemistries and every drug will work slightly differently for almost all of us. Hence those stupid lists of “possible side effects”, so many people miss that word “possible” and assume they will get them all. To date, I have only been aware of a handful of drugs that have ever caused me any issues, and they were really not worth mentioning.

https://livinginalimitedworld.com/2016/05/15/body-science/