Today's post from abarefootgoddessonajourney.wordpress.com (see link below) will probably leave you thinking: 'where have I read that before?' or even; 'I've said, thought, or even written exactly the same thing'. I know you'll find versions here on this blog too. That's because it expertly puts into words what nobody who doesn't have neuropathy will understand - exactly how does neuropathy feel? It's a useful article for people coming to the disease for the first time (though it won't leave you feeling optimistic) and for friends, workmates and relatives, who look at you glassy-eyed when you moan about the pain. Even die-hard neuropathy patients will benefit from reading this and recognising that they're not alone. Really every newspaper or online media outlet across the world should translate this and publish it because, God knows...we need the publicity!
Published on September 18, 2016
Chronic Nerve Pain it keeps you awake all night…….Let me explain!
So I think everybody at some stage has had tingles or numb fingers or toes or perhaps even felt the nerve at the back of their leg twitch. These are all normal but nothing prepares you for the effects of your nervous system going into major short-circuit mode or in other words CHRONIC NERVE PAIN!
When that happens, you may well find out what it’s like to be one of the millions of people across the world who are living with neuropathy. What is neuropathy? It simply is nerve damage and the cure is? Well …..there isn’t one.
However, those facts tell people who aren’t affected absolutely nothing about what life is like with this chronically difficult to treat condition. Most people have no concept of how nerves work and how essential they are to daily life anyway (why would you, when everything works as it should!) so therefore find it impossible to understand what happens when the nervous system breaks down.
The neuropathy sufferer is faced with the task of explaining their mysteriously weird symptoms to many people who disbelieve what is being felt.
So as one that is being kept awake a great deal of every night let me explain what happens, Often resulting from damage or degeneration to the nerve itself and cells, that protect the nerves of us the neuropathy sufferers are subjected to a series of confusing and functional breakdowns which send out wrong messages, or no messages at all. It basically can be compared to a short circuit in a electrical system resulting in feelings and sensations that are pretty unique to the sufferers health issues. Neuropathy affects many people from all over the globe. What does it feel like and why are its symptoms so difficult to explain? There are over 100 causes and also over 100 types of neuropathy, so diagnosing exactly how someone feels with their neuropathy really depends on where the nerve damage is happening and what part of your body is being affected.
Generally, neuropathy falls into one of the following four categories:
Motor Neuropathy;
Motor means movement, so motor neuropathy is damage to the nerves that control muscular activity and movement in the body. It generally affects feet, legs, hands and arms but can also affect speech.
SensoryNeuropathy;
Sensory means touch, so sensory neuropathy is damage to the nerves controlling what and how you feel. So it can affect how you feel pain, or even the lightest of touches.
Autonomic Neuropathy;
Autonomic means involuntary, so autonomic neuropathy affects the nerves directing bodily functions you aren’t aware of and have little control over, such as breathing and heartbeat but also digestion (including bladder and bowel functions), sexual response and circulatory problems. It’s easily the neuropathy with the most serious symptoms.
Combination Neuropathies;
A nightmare for many, when you have a combination of the above problems.
So I’ve told you about the types of neuropathy and that what is being felt is like nothing you can actually describe but where does neuropathy strike in the body. Well I would say, most people suffer nerve pain problems in their feet first. Feet are at the end of the nerve pathways and the furthest away from the central nervous system. So perhaps it is logical that problems would happen there first. So back to the feet, where the majority of people first notice something going wrong but neuropathy is never an immediate finding – it can take years to develop and creeps up on you without you really noticing a pattern developing – it’s part of the reason why it is so difficult to diagnose and treat. Initially, you may suffer a loss of feeling or numbness in the toes. Gradually, you begin to feel as though the toes are numb and painful, along with tingling, or other strange sensations. It’s as though the toes have been anaesthetised on the surface, yet just underneath it’s painful, or tingling. This set of feelings often spreads to the other areas of the foot or leg. To describe the feeling – it is similar to be walking on ice or snow with bare feet or sometimes as if your bare feet are walking across an electric force field. It is a weird feeling and very uncomfortable. When you have severe nerve pain/ neuropathy it can feel as though you’re walking on bare bones. The problem is that the numbness can lead you to walk strangely, or lose your footing so that you fall. You feel as though you’re doing the right thing to make your feet move in the right direction but they do something else instead which is truly frustrating.Basically the wrong messages are being sent out and there’s a communication breakdown between the brain and the feet. So as this is happening to your feet, you may begin to feel like your legs are heavy, or like your muscles aren’t responding and becoming weaker. Climbing stairs can be both painful, tiring and frustrating and just plain walking can feel like a massive effort because you begin to constantly trip over what feels like air and just stumbling when you least expect it becomes a daily occurance.
This is why I’ve ended up using a walking stick and more recently a 4 wheeler because of my muscular tiredness and to give me the feeling of more security with balance when i walk. Balance has become a major issue for me and sometimes I feel like I am walking like a demented alien.
As my neuropathy has worsened, I’ve developed it in my hands. I began lose control of my grip and I started dropping things which is totally frustrating. I’ve now lost use of my right arm and the effect this has on me is massive as I have a lack of self trust and confidence in my own daily actions leaving me frightened and confused as to what is happening to me.
I would say the hardest thing for people to understand is the pain neuropathy can bring. It’s like nothing else ive ever experienced. It can range from mild tingling or burning, to pain that can leave me screaming like I am going to die AND especially at night. It can feel as though your affected areas are on fire and burning sensations are perhaps the commonest after tingling. Tingling sounds innocent enough but it can be so severe that it’s extremely painful and then i long for the numbness that i began with. I often get the feeling of a ‘electric shock’ in my legs and arms. Often the muscles will spasm, leading to twitches and spasms which together with the shocks, the burning and the tingling can lead me to actually cry.
It has to be said, everybody’s neuropathy is unique to themselves, so the symptoms you see here can be anything from mild to severe. It’s little wonder that opiates can be the only course of action in the end but even they have their limitations, leading to increased doses and addiction.
So I’ve let you know about all the sensations, you can experience and the strangest of feelings. Stepping on a stone may feel like treading on broken glass and hot bath water can feel cold leading to many cases of burns. People with neuropathy need to use an unaffected part of their body to test textures and temperatures, so we don’t hurt ourselves.
Other problems with neuropathy can be urinary problems and digestive malfunction. The nerves to blood vessels, intestines and bladder are damaged by the disease and give out faulty messages leading to abnormal behaviour in functions which we take for granted. In my circumstances, I can feel bloated after eating only a very small portion; and I can no longer empty my full bladder even though my brain thinks my bladder is empty. This has led to problems with constipation and diarrhoea.
I Hope I have given you some idea of what it’s really like to live with nerve pain/neuropathy. It’s a horrible disease because it’s so unpredictable. I and many others live with only mild discomforts with only a little tingling & numbness here and there but then can suffer dreadfully in a instant needing to be on the harshest of medication to control the dreaded symptoms and it must be remembered that the medication only helps to manage symptoms it doesn’t cure them. So till a cure is found I and many others will just have to live with neuropathy as best as they can and find the best treatment available to help their own nerve problems.
Let’s NOT tear each other down, it’s about walking together.
https://abarefootgoddessonajourney.wordpress.com/2016/09/18/understanding-chronic-nerve-pain-neuropathy/
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