My grandson Riley who was the subject of my previous post is now three years old and a wee star. we were at his birthday party yesterday which his and his brother Korey's pals attended was a total hit, pirate themed as he is Jake and the Neverland pirates fan. lots of games, treasure hunt through the sandpit, decorate your very own treasure chest pass the parcel and of course pirate food with pirate grog (diluting fruit squash) in abundance.
Just been listing my aches and pains for the DWP, I'm falling to pieces, 62 and semi retired.
My aches and pains I've listed below.
IDIOPATHIC
AXONAL PERIPHERAL NEUROPATHY
The
nerves in my feet and hands are dying or indeed already dead, in my
hands it seems confined to the palms and fingers although my feet are
completely affected to just above my ankles.
The
symptoms are (noted symptoms are those felt while taking medication)
without meds, when these are missed by accident, are considerably
worse. An indication of pain reduction would be 80% relief while
taking Pregabalin. The 20% of pain I still feel is debilitating and
takes a lot of effort to control and is only possible because I know
it isn't pain caused by an injury. The pain isn't experienced in one
location but in both hands and feet and never at the same intensity
at all times.
To hopefully better explain the level of pain
I once had toothache and I thought nothing could be worse . I suffered from a misdiagnosed Duodenal Ulcer for nearly 11 years (indigestion) and that was so much worse than toothache and again I thought nothing could be worse than the unremitting pain I suffered from it. Now I have neuropathy and I am afraid to think that anything could be worse than this in case I get that. Giving a pain factor to the above, Toothache would score 30 to 40 as it pulses its pain, the Ulcer would be around 80 and Neuropathy would be 100. Using the above to score the Pregabalin influence, it reduces the pain to about half the level of toothache.
There are however days when I experience the pain in
all it's unremitting glory and this happens almost 1 day in 14 and
lasts most or all of that day. Dealing with the pain daily can make
you short tempered as dealing with pain and people means people lose
out in that equation.
If
I miss the second pregabalin capsule of the day or I'm late in taking
I experience extreme itchiness, increased heat in the soles and
palms, pain in the fingers and toes as if being cut or ripped from my
body. This pain becomes so intense over a period of 4 or 5 hours that
coherent thought is not always possible and it can take a further 2
hours before it dawns on me that I must have missed taking a capsule.
I
go for a walk at least once a week because the overall level of pain
has increased and to too many areas in my hands and feet. Walking
increases the pain in the soles of my feet so that it overrides to
some extent the other sources, it also means that after a walk my
ankles swell up and I can't usually walk any distance for a day or
two. Another benefit is to those around me as during these episodes I
become very short tempered and if I'm not around they benefit.
Hands
- There is a sensation of burning, being very hot, in the palms, similar to holding onto a just boiled kettle. This increases when touching something hot.
- No sensation if skin is cut.
- occasional feeling of a finger being ripped from the hand.
- Clapping my hands together is painful.
- Itchy/ crawling feeling across back of hand and palm.
- My hands are very sensitive to sharp or rough objects, corners of boxes to name but one example.
- I have always had a slight shakiness to my arms which in the past year has increased. This is most noticeable when lifting a cup to my mouth I use two hands on cups to try and steady the movement.
- My handwriting becomes very shaky the longer I do it for, which is why I use word processors.
- I was once asked if getting around via a wheelchair would be helpful, it wouldn't, as the friction between wheels and hand or gloves, wheel and hands would increase the pain that I feel.
- I do drive a little as there isn't any friction between the steering wheel and my hands and no increase in pain to my feet.
- There is a feeling of being hot across the soles similar to hands.
- The top of my feet have the feeling of being roughly rubbed when enclosed by socks and these rub against the skin.
- No sensation when the skin is cut. Although I do suffer from phantom cutting, severing of fingers and toes.
- occasional feeling of a toe being ripped from the foot.
- Incredibly aggravated itching of the skin around my ankles and lower leg, this has led to bleeding as I have vigorously scratched it.
- When walking the act of placing feet on the ground is like heavily stamping foot down but without the jarring it should cause and quite painful after a while. I wear heavily padded boots while walking any distance.
- When walking I have to carefully watch how my feet are placed at each step as I have no way of knowing what angle the foot has landed and have in the passed fallen when on uneven ground.
- Walking barefoot on solid surfaces (wooden, tiled and concrete floors) is akin to walking on broken glass.
- I have no way of telling if something is in my shoes which could cut or injure me, I have to thoroughly check footwear before putting on.
There are odd days – not many one day in a month or so – when none of the above applies and my feet and hands are totally numb and without looking there is nothing at the ends of my feet or hands.
I used to work outside but thankfully I stopped as one of the jobs I did was clearing paths in snow and ice. I have no way of knowing if my hands and feet are cold or hot it would be too easy to suffer from frostbite and not know it.
ANGINA
I also suffer from Angina which is aggravated under stressful situations. I use a nitro lingual spray around 3 times a month.
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