I can't bloody believe it!

[Zukosmile07]

Hi guys. I've have damaged nerves in my feet from when I was admitted with hepatitis liver disease 12 years ago and diagnosed as well with peripheral neuropathy. I've just climbed out of bed and stood on a charger cable, jeeze it chuffin killed. I've struggled with my feet for years, not being able to feel the floor and having to watch were I'm going (swing my feet to walk at times because of foot Drop). This plays havock with my job (walking on joists, specially lofts) I was hoping this would get better and told by the surgeon maybe with the new liver. Does anyone have any experience with this who has liver disease or had a transplant and knows the outcome.....

Much obliged if you can help thanks....

Danny x

[Rockie153]

Hi,

Unfortunately I cant help only that this is what I was saying. Although I thought you said they felt better after your TP....obviously not.

I have never been diagnosed (unless doc Google counts although I have said about it

😱🤐). Mine is like numb pins and needles with like a buring sensation in my toes when I go to bed - not sure if its got worse since I have stopped drinking or maybe I am just more aware of it.

I think nerve damage maybe nerve damage but I am no doctor (Obviously).

Hope someone can help and sorry you didnt sleep too well again last night

Sxx

[Zukosmile07 in reply to Rockie153]

It's a nightmare problem because they feel different every day. When my feet are warm and dry they feel at their best. Wet and cold...wow:pain. Wearing shoes too long= warm feet but soft... wow:pain.Then straight after the transplant and around the house=comfy, dry, warm:fine, after being out helping my cousin all day then this morning standing on the cable...wow:pain. My blood results for my liver are still in the red and exactly the same as 2 weeks ago= slight rejection still no worse but no better. I don't know if this is having an effect on my feet as well.

When I stand with my eyes shut I can't stand perfectly still, I sway around. This is because I can't feel my feet properly.

I hope you don't get this because it's hard to explain and my GP shrugged it off for years. It's only the specialist's who agree with you (still can't do anything).

Good luck Sue 🤞

PS. The best time for my feet is abroad in hot weather, sea water and bare feet but don't stand on anything other than flat surfaces. Hahahaha brilliant 😂 can't win!

[theoldboiler]

I have peripheral neuropathy too, it is a bugger, sometimes can't feel my feet, sometimes burning and sometimes like someone is stabbing them so much it keeps me awake. I haven't found anything that helps so am trying to learn to live with it. I always try to remember to wear solid soled shoes and slippers as as you say, stepping on something sharp is very painful. Wish I knew the answer for you xx

[Zukosmile07 in reply to theoldboiler]

Do you know what new boiler...I was contemplating buying one of those circulation divices you see advertised with Ruth and Eamonn Holmes. Rheumatism machines. I have no idea if they work but like you say you can't find the answer..... grrrrrrrrr it's horrible at times and sends you crazy 🤪 haha!

[theoldboiler in reply to Zukosmile07]

The thought crossed mine too Danny but if it were that easy, it would be that easy! Wendy

[Zukosmile07 in reply to theoldboiler]

I'll Invent something, could be on a winner hahahaha 😂 x

[theoldboiler in reply to Zukosmile07]

Good idea- but no idea what it would do?

[Hidden in reply to theoldboiler]

Yes, I have peripheral neuropathy as well due to my leg being chopped off (mostly in the accident) and as far as I know it don't get better, only worse. Yes that stabby pain is horrible, I take pregabalin (I used to take gabapentin) I also have trigeminal neuralgia in my head and that's proper nasty, imagine being stabbed in the head with an ice pick!! The tablets work to an extent but don't get rid totally.

[theoldboiler in reply to Hidden]

You poor thing. I know a lot about trigeminal neuralgia as I used to be a Cluster headache sufferer and worked on a headache helpline for a few years. TN is a total bastard to treat but I thought the pain was largely unilateral and facial?

[Hidden in reply to theoldboiler]

theoldboiler It is only on the right hand side and mostly what's written about is facial as that's what most people have (as I understand it)

Zukosmile07 for me it is just a stabby pain going downward from the top of my head and it makes me go screwy when I get it like the emoji 🥴lol

[theoldboiler in reply to Hidden]

You have all my sympathy. Cluster Headaches almost drove me mad

[Zukosmile07 in reply to Hidden]

What the bloody hell is that and how do you get it? I've never had a migraine. I used to get bad and strange pains in my head (all over).

[theoldboiler in reply to Zukosmile07]

That isn't Trigeminal neuralgia Danny

[theoldboiler in reply to Hidden]

I have been thinking about this Jacky but it may be good news. Who gave you this diagnosis?

[Hidden in reply to theoldboiler]

My doctor, come to think of it the same one who diagnosed my liver disease as a hernia, so not a totally reliable source, lol

[theoldboiler in reply to Hidden]

You can tell I think you have been misdiagnosed. Doctors receive about 1 hour training on headaches and there are hundreds of different types, my GP says I know more than she does (I used to work on a headache helpline and we had a lot of training). Is the headache short-lived and have you been prescribed Indomethacin at any point?

[Hidden in reply to theoldboiler]

I've not been subtribe that and it is literally like being stabbed through the head with a ice-pick, after that initial pain I am fine, but it does stop me in my tracks.

[theoldboiler in reply to Hidden]

It sounds like Ice pick headache, yes, there really is one called that. The go to first treatment for that and all short lived headaches is indomethacin. They actually do often do what is called the "Indotest" as a diagnostic tool as well as a treatment for some as if it is going to work it is pretty rapid. Very safe drug too and not expensive. Try and talk to your GP asap

[Zukosmile07 in reply to theoldboiler]

I love talking with you both... honest but you keep showing up as alerts on my thread... grrrrrrrrr I would bang your heads together but I'm scared of Jacky hahahaha 🤣 x

[Hidden in reply to Zukosmile07]

😀🤣😂

[Hidden in reply to theoldboiler]

Will do, why did it never occur to me that it was the flaky gp that diagnosed this? 🧐

[Confused1972]

I feel for you both. Thankfully my foot/ankle (only 1??) at worst feel like I imagine mild gout would feel but doesn’t affect me much atall thankfully. It does sometimes feel cold when rest of leg feels hot but again not often. I suggest Danny a nice fluffy pair of slippers lmao until your invention is in production hahaha🤣🤣🤣. Hope it feels better soon xx

[Zukosmile07 in reply to Confused1972]

They don't work Audi girl, I've even tried changing the colours...... teehee!

[Confused1972 in reply to Zukosmile07]

Lmao 🤣🤣🤣 hope your feet have recovered. How’s the invention going lol xx

[Zukosmile07 in reply to Confused1972]

I was thinking about some vibrating crocks. Maybe some lithium batteries in the souls..... teehee 😇!

[theoldboiler in reply to Zukosmile07]

Danny I was wondering whether one of those foot baths where the base vibrates might help. Haven't tried it though. Wendy

[wurzle]

Hi Danny yes I've had trouble with my hands and feet and just been diagnosed with PN. Hes put me on gabapentin which isn't opiate based so non addictive. Its also used to treat epilepsy and seizures so quite powerful stuff and you have to build up the dose gradually. I feel ok on it. My feet are more numb if anything but a lot less painful. I'm left kind of spongy feeling on the soles of my feet and its not an entirely unpleasant sensation ☺️

[Zukosmile07 in reply to wurzle]

Hi farmer.... do you find it hard to talk with anyone else who hasn't experienced it. For me it's on here and some patients at the hospital are the only people who say "ow yeah I suffer with that, isn't it a nightmare". Even my own father doesn't understand and cannot believe how hard I find it to walk in the dark (pitch black) or balance, even how much it hurts standing on something so minuscule! Once I get fully recovered from the transplant I will be concentrating my efforts into anything that can help/ease the problem.

[wurzle]

yes this is the first time I heard mention of it. I asked my consultant but he said I would need to see a neurologist but my gp is pretty sure it's that. They are taking bloods to rule out anything else. I see myself lucky that it's not one of the real nasty neurological conditions like MS or MND. But yes I can sympathise how painful it is. Sometimes getting out of bed it feels like I'm walking over hot coals and it's like squeezing your feet into shoes that are 3 sizes too small. Let us know if you find anything that helps. I thought about one of those foot spa things but I'm sure it only brings temporary relief. I wonder if a Tens machine would help