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Dealing with Peripheral Neuropathy

You may have never heard of this ailment before - neither had I, until I was diagnosed with it.

A brief description of what it is and the effects it has is as follows:

Peripheral neuropathy develops when nerves in the body's extremities, such as the hands, feet and arms, are damaged. The symptoms depend on which nerves are affected.

In the UK it's estimated almost 1 in 10 people aged 55 or over are affected by peripheral neuropathy.

The peripheral nervous system is the network of nerves that lie outside the central nervous system (the brain and spinal cord).

It includes different types of nerves with their own specific functions, including:
  • sensory nerves – responsible for transmitting sensations, such as pain and touch
  • motor nerves – responsible for controlling muscles
  • autonomic nerves – responsible for regulating automatic functions of the body, such as blood pressure and bladder function
The main symptoms of peripheral neuropathy can include:
  • numbness and tingling in the feet or hands
  • burning, stabbing or shooting pain in affected areas
  • loss of balance and co-ordination
  • muscle weakness, especially in the feet
These symptoms are usually constant but may come and go.

My own symptoms started with a tingling sensation in my feet, which then progressed in sharp stabbing pains. At first, I thought it was arthritis, which I also suffer from, and that this was just another instance of it. I asked my doctor what it was and after some quite intensive questioning and examination, I was told that it was peripheral neuropathy.

Since that first encounter, the pains have been a constant companion that never leaves my side. I have them in my feet, which become exacerbated when I walk - meaning that walking is extremely painful and I can only walk short distances with the aid of my four-wheeled walker and then I have to sit for a few minutes until the pain eases and then I can walk some more - repeat this until I get to where I need to be. The pains are also in my hands, in my arms, in my neck, even behind my ears and in various other places - I call it my 'mobile' pain because it travels around my body and can jump very quickly from one place to another.

I will grimace in agony as it blasts my toes, and then in an instant, it jumps into my fingers or at the base of my thumbs, and then it moves onto somewhere else.

There is no cure - it's permanent and it can become more invasive as time goes on affecting blood pressure and heart. There are some drugs to help mitigate the pain, normal analgesics don't work such as paracetamol or codeine. I'm currently on pregabalin, almost at the maximum recommended dose, and it does help but not as much as I'd like it to. I tried duloxetine but that stuff sent me into cloud cuckoo land, so that was stopped and I went back onto pregabalin; this drug has addictive qualities to it and is currently a class 2 drug by definition. When my doctor told me this I asked how long I'd be on it - I knew the answer would be for life, so the addiction part was not really relevant to me - you only get symptoms of withdrawal if it is stopped - as I'd be on it until I pop my clogs.

It's something I've learned to live with and often try to make light of it - there's not much else that can be done, so it has become a part of my life. There are times when it does get me down - stopping me from doing some of the things I like to do - I had to surrender my driving licence as it was becoming dangerous to drive and that was a big hit to my life as my car was a means of escape to go to places such as the countryside or beach.

It's revealing just how much an ailment can have an effect on your life and change it in ways you would not have otherwise imagined. I get cross with some people who think because they can't see what is wrong with you that there is nothing wrong. Invisible ailments are a reality and people need to gain an understanding of this.

Life sure can throw some unwanted curveballs into our lives when we least expect it.
 

Lee

Administrator
Staff member
Admin Team
Symptoms sound horrible, Dave.

My wishes go out to you and I hope this doesn't get any worse as time goes on :(
 
OP
Dave

Dave

Active member
Symptoms sound horrible, Dave.

My wishes go out to you and I hope this doesn't get any worse as time goes on

Symptoms are horrible and unpredictable - I can be sitting at my computer and you would think someone had entered the room and stuck me in the foot with a cattle prod, then in a flash that cattle prod is in my fingers, thumbs, behind my ears and elsewhere. I can be talking to someone and then it hits out the blue, watching TV, cooking a meal literally anything.

It will get worse over time as it's progressive, it's just as unpredictable as to how severe it will get as it is when it strikes. I try to make light of it as best I can - I call it my mobile pain as it is incredibly mobile, more mobile than I am lol. I have to use a 4 wheel walker, mainly to keep my balance but also something to sit down on should the pain be persistent, which it is when I'm walking; it's like walking on broken glass at times. But, these things are sent to try us and they do just that, but I won't give in to it. I keep on doing what I can whilst I can and tend not to think too much about tomorrow.

That brings to mind something a good friend of mine once said, many moons ago, and something I keep reminding myself of: "If you think too much about tomorrow, you won't be able to enjoy today" :)
 

ALLEGRA

Member
Gabapentin, pregabalin and amitryptilline are some of the drugs we prescribe for peripheral neuropathy. What is more concerning is that once it affects your leg,there might be small traumatic ulcers which you never notice unless it becomes infected. This is why I recommend everyone with PN to have regular footcare and self examination to ensure that there is no ulcers below.


Major causes are diabetes, lack of Vitamin B12, disc disease and nerve entrapment.

Please do take care of your limbs.
 
OP
Dave

Dave

Active member
@ALLEGRA Thanks for the tips. I do check my legs every single day as I also have varicose eczema and use Fucidin and moisturiser every day on any little flare-up. I also have a podiatrist visit me every six weeks. I believe, though can't be absolutely sure, that my condition is a result of nerve entrapment. Combined with this I also have arthritis in my knees and neck.

I also had the most bizarre experience one night just after I went to bed - it was as though someone had stuck an electrode in my neck, I couldn't move and the pain was excruciating. It happened several times over a matter of minutes and then subsided - my neck was sore for several days and the left side of my face felt numb. I get that numbness from time to time, but it is also manifesting itself in my left leg from time to time. Not a very pleasant thing to experience, but perhaps that was the onset of the PN and now the after-effects.
 

ALLEGRA

Member
One of my aunt had experienced a similar feeling. She not only had the pin pricking sensation but later she would feel her entire upper body go numb.

We took an MRI of her neck (cervical spine) and later she was diagnosed with new bone formation. It got resolved after the bone was removed. Have you ever considered talking about this to your GP and getting an MRI done?
 
OP
Dave

Dave

Active member
Yes, I've had an MRI done after I was referred to the IMATS clinic - the results were arthritis formations but they had no explanation for the paralysing effect of that shock in my neck; I forgot to mention that when this shock was invasive in my neck that I couldn't move and that my whole body was tingling from my toes upwards. I also had a CT scan but there was nothing conclusive.

My doctor tried experimenting with my Pregabalin dosage to see if there were any changes - a lower dose (I was on 300mg a day at the time) of 200mg a day saw a marked increase in the frequency of the pains so I was returned to 300mg a day and the pains were not as prevalent. Then the pains increased again and my dosage was upped to 450mg, which is what I'm on now; the pains are still there, they never go away, but at a decreased level. I was asked to try Duloxetine, but that had a really bad effect on me, stomach pains and a sense of not being in the driving seat of my own body were the effects, so I was put back on Pregabalin. The Amitriptyline was prescribed to help me sleep better at night and I am now managing - still get the electric shock pains in my feet and hands, sometimes I get muscle spasms where my knife or fork will just fly out of my hand and sometimes my calves start twitching for an hour or so, which is really annoying lol.

All-in-all I suppose I am managing OK - I check my BP a few times a week and that varies from a steady normal to sometimes really crazy readings (the latter is only now and again not frequently). The one that really annoys me most is when I get it behind my ears, the kind of irritation you get when you have a badly fitting pair of spectacles.

I've been living with this for just over two years now. My biggest gripe was having to surrender my driving license. When I reported my condition to the DVLA they issued me with a three-year medical license after long debates with my GP (who had to fill in numerous forms), but the pains in my feet made driving difficult and the spasms in my hands and arms could have affected my driving; I didn't feel comfortable or safe and didn't want to be responsible for causing an accident, so I surrendered my license. Far better to be safe than sorry.

The OT visited me and gave me a perching stool for the kitchen, a bedpost to help me get in and out of bed and the four-wheeled walker. I also suffer from BPPV and combined with the PN when I was out walking with a walking stick I was bouncing off walls and bumping into things. The BPPV when it kicks in is horrid - but again I try to make light of it by saying this is what we paid good money to get like when we were younger and went on the waltzer at the shows lol.

I live in what used to be called sheltered accommodation (now Independent Living) so the flat I'm in is already converted for those who suffer disabilities. I also get PIP from the DWP after attending a face-to-face assessment. So, I am managing. Got no family, I'm the last man standing but I do have some really good neighbours who are friends and we tend to help each other as best we can - more so since this pandemic started. I'm retiring this November at the young age of 66 lol - I'm the baby here in the complex (59 flats) with the oldest being 97. I made friends with a lovely fella here who was 97 when he passed away a few years ago; we were great friends and I believe that it's good friends like he was that makes life worth living despite our ailments and frailties.
 

Lee

Administrator
Staff member
Admin Team
Yes, I've had an MRI done after I was referred to the IMATS clinic - the results were arthritis formations but they had no explanation for the paralysing effect of that shock in my neck; I forgot to mention that when this shock was invasive in my neck that I couldn't move and that my whole body was tingling from my toes upwards. I also had a CT scan but there was nothing conclusive.

My doctor tried experimenting with my Pregabalin dosage to see if there were any changes - a lower dose (I was on 300mg a day at the time) of 200mg a day saw a marked increase in the frequency of the pains so I was returned to 300mg a day and the pains were not as prevalent. Then the pains increased again and my dosage was upped to 450mg, which is what I'm on now; the pains are still there, they never go away, but at a decreased level. I was asked to try Duloxetine, but that had a really bad effect on me, stomach pains and a sense of not being in the driving seat of my own body were the effects, so I was put back on Pregabalin. The Amitriptyline was prescribed to help me sleep better at night and I am now managing - still get the electric shock pains in my feet and hands, sometimes I get muscle spasms where my knife or fork will just fly out of my hand and sometimes my calves start twitching for an hour or so, which is really annoying lol.

All-in-all I suppose I am managing OK - I check my BP a few times a week and that varies from a steady normal to sometimes really crazy readings (the latter is only now and again not frequently). The one that really annoys me most is when I get it behind my ears, the kind of irritation you get when you have a badly fitting pair of spectacles.

I've been living with this for just over two years now. My biggest gripe was having to surrender my driving license. When I reported my condition to the DVLA they issued me with a three-year medical license after long debates with my GP (who had to fill in numerous forms), but the pains in my feet made driving difficult and the spasms in my hands and arms could have affected my driving; I didn't feel comfortable or safe and didn't want to be responsible for causing an accident, so I surrendered my license. Far better to be safe than sorry.

The OT visited me and gave me a perching stool for the kitchen, a bedpost to help me get in and out of bed and the four-wheeled walker. I also suffer from BPPV and combined with the PN when I was out walking with a walking stick I was bouncing off walls and bumping into things. The BPPV when it kicks in is horrid - but again I try to make light of it by saying this is what we paid good money to get like when we were younger and went on the waltzer at the shows lol.

I live in what used to be called sheltered accommodation (now Independent Living) so the flat I'm in is already converted for those who suffer disabilities. I also get PIP from the DWP after attending a face-to-face assessment. So, I am managing. Got no family, I'm the last man standing but I do have some really good neighbours who are friends and we tend to help each other as best we can - more so since this pandemic started. I'm retiring this November at the young age of 66 lol - I'm the baby here in the complex (59 flats) with the oldest being 97. I made friends with a lovely fella here who was 97 when he passed away a few years ago; we were great friends and I believe that it's good friends like he was that makes life worth living despite our ailments and frailties.

Wow, Dave - that sounds difficult to say the least.,

Here is me worrying about life potentially with POTS and you have all this going on.

Sometimes I need some perspective in my life.

Glad that you can make such light out of a potentially dark situation and that you can keep your morale up..

It must be so sad when your neighbours pass away though :(
 
OP
Dave

Dave

Active member
It must be so sad when your neighbours pass away though
Yes, I've seen quite a few good people depart from here in the last five years; my really good neighbour and friend Doreen, who was a constant source of laughter; my dear friend Cass, we spent many an hour chewing the fat and with him telling me stories of when he was a submariner during the war and being wounded whilst scarping from someplace and trying to get back to the boat. Then there was Ann, Sadie, Laura, Chrissie, Veronica, Ena - lots of really good and nice people. But that's the nature of this place, some here call it God's Waiting Room.

Glad that you can make such light out of a potentially dark situation and that you can keep your morale up
Two options - sink or swim. Got to keep moving forward and someone here has to give the others a laugh; a daily dose helps to make the world go round. But we all have our issues and we can't downplay them when they have a serious impact on your life. My dear departed mum always used to say 'there's many in the graveyard would swap places with you'. But then, a twist in the tale, when I would say to mum when she started grumbling 'there's plenty of people worse off than you mum', her reply would be 'if that's supposed to make me feel better, it doesn't' lol. So, never downplay your issues just because someone else may be worse off than you, your ailments and issues are your own and you deal with them in the best way you can.

Life is what you make of it, including dealing with our issues - the invisible ailments are only known to ourselves and when someone says 'I know how you feel' how wrong they are because only you know how you feel. I try to say 'I understand how you must feel' if I've suffered the same or similar, but never 'I know how you feel'. As far as we know we only get one shot at life, so we try to make the best of it we can ;)
 
OP
Dave

Dave

Active member
I've had to go out and buy some more gadgets to help me as I now have a certain amount of weakness in my hands and have a tendency to drop things; like a kettle full of boiling water. I escaped a scalding, but it did give me a fright. I've bought a Hot Cup kettle which dispenses enough hot water into a cup without having to lift it. I've also just submitted my Award Review for PIP so will have to see how that turns out.

My mobility is still the biggest issue and I have a Podiatrist visiting me every six weeks to cut my toenails and check my feet for small ulcers (apparently this can be a side effect of the PN). Walking is terrible and very painful, and I must keep stopping more often. But life goes on and I make the best of each day and keep taking the tablets lol.

;)
 

Lee

Administrator
Staff member
Admin Team
So sorry to hear you are struggling more Dave, I wish there was something we could do to help you.,

How are you finding your one cup kettle?
 
OP
Dave

Dave

Active member
Aye the pains in my feet and hands has not diminished, but I have a high pain threshold so I can live with it (so far) and just find ways to distract my attention elsewhere.

The hot cup kettle has been one of the best things I ever purchased. No more lifting kettles full of boiling water. I just hit the button and go apply my medication to my legs and by the time I'm finished (minutes) the water has been boiled and poured into my cup. All I need do is strain and then drink, brilliant. I'd recommend this for anyone who suffers from shaky hands or has a weakness that could cause them to drop a kettle, well worth the money (£60.00) :)
 

Lee

Administrator
Staff member
Admin Team
I had one before because I suffer from dizziness when standing but I didn't think it got hot enough for my tea. Maybe I was over analyzing though, I have a tendency to do that sometimes.
 
OP
Dave

Dave

Active member
I had one before because I suffer from dizziness when standing but I didn't think it got hot enough for my tea.
This is the one I got from Argos and it's brilliant - really boils the water and having an adjustment dial for cup size and an emergency stop it's great: it's also £5 cheaper now lol.

 
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