Life Story With Neuropathy

Today's post is a personal account of life with neuropathy from neuropathyawareness.blogspot.com/2011/11/living-life-with-peripheral-neuropathy (see link below). I am sure that many people will identify with many of the experiences described here and may wish to join the 'Support for Neuropathy' group highlighted on the original page.

Living Life with Peripheral Neuropathy
Monday November 7th 2011

Living life with peripheral neuropathy has been a challenge for sure! I never would of thought that my life would revolve around being in chronic pain 24/7. One day I was in great health and the next it was all taken away from me in Jan 2001. Before all this I had never heard of peripheral neuropathy so when I was told that this was my diagnosis and it was permanent with no cure I just about lost it! I remember thinking how can no cure be available and no specific medicine for neuropathy be available. When my neuropathy symptoms first started it came on strong and on a pain scale the pain was a 10 and still is, but controlled with medications/narcotics. So now my life also revolves around being on heavy narcotics and this is someone who never took anything besides a asprin before all this! Even with being on heavy narcotics I still have pain and some days are very bad! I take medicine that is given to cancer patients and still can't get pain control on some days. That is just crazy to me and something has to be changed! We need help spreading the word about PN so a cure can be found. No one should have to live there life in chronic pain! No one can understand what its like to live like this unless they have it personally. It takes over your mind and controls everything you do from spending time with family or friends. It follows you everywhere and is always a constant reminder that you have PN. As bad as my life can be with having PN I have found its the little things that can make me happy. Little things like the smell of a flower or watching a new flower grow, enjoying my morning coffee, my fragrant candles, a new recipe etc and best of all being a great mom! I have had time over the years to accept this is the new me and its how it is. Of course I have days that I get depressed, but I try and think tomorrow will be a better day! I'm so glad to have the support from the group called Support for Neuropathy that I joined on facebook. For about 9 out of the 11 years of having PN I had no support and it was very lonely. I have meet many caring and awesome friends in my support group and I'm very thankful to have them all!!

Written by Michelle Cornell Monroe, Support for Neuropathy member

http://neuropathyawareness.blogspot.com/2011/11/living-life-with-peripheral-neuropathy.html

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

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/

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/