Can I Get A Witness! Authentic Voices Tell the Story of Neuropathy
By Dave R.
April 11, 2012
Internet links shown in these posts are designed to provide more detailed information if required.
In 1931, the French medical missionary Dr. Albert Schweitzer wrote: "Pain is a more terrible lord of mankind than even death itself."
If you have headaches, or toothaches, most people will be able to identify with you and sympathise. They can't feel your pain at that moment but they've had headaches and toothaches before, so can imagine exactly how you're feeling. Similarly, if you've fallen and broken bones, or cut yourself and are bleeding, most people will be able to empathise with you.
With neuropathy, it's different. Despite the millions of neuropathy sufferers across the world, most people can't hang a mental label on what you're telling them and are therefore immediately distanced from your discomfort. They feel they should be sympathetic and generally do their best but without a reference from their own pain experience, they don't really understand why you're making so much fuss. Extend that scenario over weeks and months and people become disconnected and lose both patience and goodwill. It's not their fault it's human nature; especially when so little is publicly known about the condition.
Authors, scientists, doctors, journalists and bloggers can write about neuropathy until they're blue in the face but there's no substitute for hearing people tell their own stories. This post is therefore given over to some of the men and women with both HIV and Neuropathy who have opened their hearts on forums and in blogs across the Net. There are many, many more!
Here their anonymity is protected but if anyone doubts the veracity of any of the experiences, the original links can be made available. Similarly, if you recognise your own words and wish them removed, I'm sure that can be arranged but I have a feeling that you already understand that sharing your story is a powerful tool in increasing awareness of what having neuropathy actually means.
- "One summer day in 1998, I impulsively bought a cane at an antique store. How could I have known that I would actually need it to help me walk within six months?"
"That September I returned to work from a week long vacation cruise. As I dressed for work, the first morning back, my feet hurt a little. I chalked it up to wearing dress shoes after a week of flip-flops and going barefoot. But the pain steadily increased along with the sensation of my feet being asleep and I was not quite able to wake up from the numbness. After a few weeks, the pain became so severe I could hardly walk. I would take my shoes off at work, but relief was fleeting, if not at all. I also became easily fatigued. I thought the cause could be a reaction to an HIV medication I had been taking for a relatively brief time. I went to see my HIV doctor. By then, I was in worse shape and in the most pain which extended through the first months of 1999. During the 1998 Christmas season and beyond, I could do little more than lay on the couch. I missed a lot of work to the point of not being able to work at all after the first of 1999. Today my lifestyle is much different than it was just a few short years ago. I was forced to take disability retirement from my job I loved and enjoyed in August 1999 at just 47 years of age. However, I have learned that human beings are very resilient and can adapt to almost anything through a positive outlook and in appreciation of the fact there are always people much worse off than I am.
Of the myriad adjustments I have had to make, the one that looms largest is the loss of independence, particularly the ability to drive. It is frustrating to not be able to hop in the car and go to the grocery store, pick up prescriptions or drop in on family and friends. But I feel blessed to have the luxury of family and close friends who provide a physical and emotional support system for me.
I have also learned that little things can make a big difference. The "prophetic" cane helps me with balance when walking a distance. Just a light touch or hold on a stairwell handrail or a shower grab bar helps me with balance than you might think. Being able to see the floor when pulling off a T-shirt or towel drying your hair surprisingly helps my balance equilibrium.
Overall, I think the best coping medicine is to maintain a positive perspective and not fall victim to a self-pity party. We all must accept our lot in life and learn to live with it."
- "I'm beginning to understand now, that I have become a completely different person because of this pain. Consider for yourself the possibility of a headache or toothache for ten long years. At times I joke that the original antidepressant was prescribed to prevent me from going crazy with this pain."
- "I feel like I am walking barefoot in the snow all the time."
- "After a few experimental treatments, the numbness progressed to more severe pain. My feet felt as though I was walking in fire and ice at the same time; like wearing a tight sock with sand in it. I discovered that simply standing still was out of the question. I have to move, walk or sit. It seems that walking rapidly relieves the discomfort. I try to walk one or two miles a day. Ten to 15 minutes in the walk, the pain goes down. It feels much better. I guess endorphins kick in. I find that heavy cotton socks and soft shoes are best; soft slippers at home. Since there is no known cure at this time for Idiopathic Neuropathy, medication can only relieve the pain somewhat. I tried several medications as prescribed, but the side effects of most were undesirable."
- "Even a sheet over the legs and feet is too painful; making it feel like it is as weighty as a sheet of nails, bearing down with the weight of steel. It feels like barbed-wire has sprouted out of the limbs, with some of the barbs pointing in. Visualize a body stretched out, with double-headed pins sticking out all over. The pain doesn't travel along the nerves, like sciatic pain, for instance, that can be felt first at the lower back and eventually, if it progresses that far, down the leg.
"Peripheral Neuropathy pain seems more like imaginary miniscule metal barbs being pulled out of the skin. It's like having rolls of barbed wire coiled up under the skin. It sounds like a nightmare, and it is.
When the pain is at its greatest sleep is impossible and it takes all the energy one can muster to get out of bed, stand and sit when necessary. Nothing seems to matter, but getting rid of the pain."
- "At work, as a pre-k teacher, I was given two teacher aides in my room to do the running around. If I wanted to shop longer than a quick stop, I had to accept using the scooter. When we travelled by air, I had to use the wheel chair in the airport. I was not comfortable with any of this."
- "Until a person is afflicted with endless pain, they naturally can't relate to such suffering and can't possibly understand. They just can't. I know what's it's like to be outside on a beautiful day with the sun shining, and everybody is enjoying life and having a good time; but physical suffering within my body is afflicting me and it overshadows me. I look fine, but my whole body is crying out in affliction. I fight it and try to live anyway, but it catches up with me and oftentimes I feel overwhelmed in public with burning, tingling, fatigue, weakness and pain. I try to live a normal life, but it is difficult."
- "With neuropathy, we hurt, drop and knock over things, lose our balance and fall, feel drugged out on medications -- then we hurt and have withdrawal when we forget them."
- "In my case, PN means an excruciatingly intense, deep-seated foot pain. Before seeking help, my torment felt like standing barefoot on white-hot coals while some twisted bastards squeezed my feet with all their might. And after locking my feet in place, they gave the green light for a steamroller to s-l-o-w-l-y run over my feet, driving back and forth and back and forth."
- "Nerve pain can be a bummer, it creeps up sometimes when you least expect it -- how can you sit in the cinema or theatre and enjoy a performance and at the same time stifle the scream when a red hot poker is stuck in your lower limbs?"
- "My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. "
- "My partner hasn't been well for a long time. He has severe pains in his hands and feet caused by peripheral neuropathy and this makes it difficult for him to get about or do much for himself at least half of the time. This has meant that I've found myself in the role of his primary carer when he's in pain. Although I'm kind of used to it now it hasn't been easy, and sometimes it isn't still. As well as working full time I also do most of the shopping, cooking and cleaning so I don't get much time to relax each day. This on top of watching the man I love in distress most days is very hard, and sometimes I really do struggle to cope. Having said all this, we do manage to get by, and despite everything we have been and are going through we are very happy together. However, I can't tell him how much it affects me when I'm finding it hard going -- I just couldn't pile up that guilt on him when he's already in pain. I have a lot of close friends who I can offload to and they give me the support I need when I ask, and without them I don't know how I'd cope."
- "Can I just put it out there that peripheral neuropathy SUCKS, BLOWS AND BITES!!!!!"
It's important to state here that although neuropathy is generally a progressive condition, by no means everybody suffers to the same extent as the people above. There are many different causes and many different forms and therefore also many different degrees of experience. Unfortunately, as people live longer with HIV, these sorts of stories will inevitably more frequently emerge in the community.
Finally, the link below will tell you how we really feel when questioned about our condition. Not that we're being dishonest when we just say, 'Okay', or 'Not too bad'; it's just often easier that way. After all, you don't really want to listen to a twenty minute moan do you? Just as long as you understand that neuropathy is really difficult to describe and impossible to ignore. We're not play-acting for sympathy, or trying to morally blackmail you into feeling obliged to help but just a simple acceptance that we're not feeling great today would be perfect, thank you. If you're feeling bad too, be honest and tell us and we'll return the favour and give you the stage. Nobody should try to BS anybody here!
More Information: A Letter with Genuine Relevance to Neuropathy Sufferers
Further general information can be found here:
What Is Neuropathy? A Growing Problem
Why Do People With HIV Suffer From Neuropathy?
How Neuropathy Is Currently Treated
This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.
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Comment by: Jonathan B.
Fri., Nov. 23, 2012 at 10:42 am UTC
1. IVig does work but be sure doctor monitors timing of treatment. My body sadly became unresponsive after 23 treatments, two pints per session.
2. Cymbalta in my experience is helpful. After years of experiments it plus clonazepam and gabapentin help me a lot especially with muscle pain, trygeminal nerve and leg pain.
3. After 14 yrs I am now for two years 75% in remission/there's hope.
4. If you get a neurologist like I did that says you're crazy refuse to pay them and move on to another. Incompetence should not be countenanced.
Comment by: Nathan
Thu., Apr. 12, 2012 at 2:54 pm UTC
Dave, you have done all of us enduring Neuropathy a great service with this article and I thank you and all those who have allowed you to share their own personal experiences.
Neuropathy and all that comes with it is a huge challenge for the increasing number of people living with HIV also living with it, to say nothing of all the non HIV related Neuropathies.
Self help and Peer Support are very important coping strategies because until you have Neuropathy you cannot understand just what a bitch it is.
It is also very frustrating for HIV clinicians, they thought this was 'sorted' once they stopped prescribing the older drugs, but it isn't, its still there and for many its getting worse, they do not know why, some are in denial, some are listening and doing research but for the most part I find we are on our own dealing with this...which makes sharing coping strategies all the more important.
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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck
English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.
Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.
However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.
I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.
I also have my own personal website and write for PositiveLite.com.
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