Neuropathic Fractures

[Flowerpot]

This is probably a bit of a long shot as I have been told my complications are pretty uncommon and exceedingly unlucky but I'm just wondering if anyone is living with anything similar. I've got both legs in plaster casts, one leg is a Charcot foot where my ankle joint has collapsed and all the bones in my mid foot fractured and displaced, this one is fused and held together with pins and plates but is still too painful to hold me up unprotected. My other foot/ankle has had 10 fractures over the past few years all completely out of the blue and not through any trauma to the foot, my bones have just cracked. I've used different types of osteoporosis drugs, calcium, vitamin D, and had various fractures pinned and plated. They are due to neuropathy - where the muscles and bones don't receive the correct messages -and pretty extreme.

I'm just trying to find if there is anyone else who is in a similar position to myself and how they manage with such a tedious, painful ongoing complication. My HbA1c is good as is my control yet the trauma continues

 

[Robinredbreast]

@Flowerpot, my heart goes out to you, it really does and it must such a debilitating illness to go through and devastating to read too.
Regarding coping with pain. I suffered an accident last year and then severe complications set in, at that time the worse complication of this condition was the pain. A pain that I would describe as horrendous, the worse pain ever ( this is just to give you a picture) like electric shocks or lightening going through my arm. It was so excruciating, I had to bite on a towel whilst screaming through the pain, and it would just start at any time. After a while, when I knew it was 'starting' I started to sing and hum loudly to a song, often the Ollie Murs song, Dear darling ? while saying, "come on you can do this, it's not going to be bad, think positive thoughts, it will get better,, things can only get better and then carry on or sing la la la. la. This went on for about 1/2 hour at a time and then would ease off. The other pain went on for over an hour. Eventually, in time, the pain ceased altogether.
I had to focus hard and with positive thoughts, as this was mentioned as my therapy, which I still have. It may seem a little crazy to you reading this, but honestly, it helped me a lot.
I wouldn't wish pain like that on anyone , but something along these lines may help you a little. The drugs I was taking made me so ill, with vomiting and feeling so sick too, tbh I thought there was no light at the end of the tunnel in the beginning, but I did get through it.
I hope by writing this is may be helpful to you, but you are in my thoughts and wishing you a more peaceful and pain free life.

All the best RRB

 

[Flowerpot]

Thank you so much RRB for your very kind words

I use morphine patches to manage the pain and although they do sometimes make me feel nauseous they do a good job of pain control. I also use distractions such as singing out loud to help me along - only in the house though, not out in public. I get enough daft comments about skiing accidents, parachute jumps etc from strangers when I'm out without singing out loud!

I've found it quite isolating and worrying coping with a complication that's pretty unusual.

Thanks again

 

[Robinredbreast]

Hi again Flowerpot, have you tried any meditation techniques at all, as it may have some beneficial influences in coping with your condition ? Or your GP or consultant referring you to a pain clinic ?
Take care

All the best RRB