After a recent visit to our GP my partner who has decompensated liver disease was told the pains he gets in his feet and legs are Peripheral neuropathy due to his live disease.
I have googled this but wonder if anyone else can share any experiences of this and what treatments they were offered. We were told to speak to our liver consultant as he was reluctant to prescribe anything!
I found when I googled this it didn’t make good reading but I’m very aware that you can too much information if you google something.
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Semiskimmed10
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Hi and sorry your partner is having to deal with this. I was diagnosed with this myself which I assumed was a result of my own liver disease and still do to some extent, but my doctor has assured me it’s not down to my liver and has diagnosed mine as being alcoholic related and not liver related. The difference I believe is mine is contained solely (no pun intended) to my feet whereas peripheral neuropathy can affect lots of areas like the hands for example.
I’ve been prescribed various medications, mostly to block nerve pain signals, with the ones I’ve tried having had zero effect and I now refuse to take any medication for it as I don’t want to overload my liver with potentially harmful medicine, that and most of these medications are designed to combat other medical issues like depression which I don’t suffer with.
I have had some success with various creams or rubs like Vicks, Tiger Balm, deep heat and my own homemade creams. I’ve also had success with my own homemade pickle juices and ginger and turmeric shots which help lessen my suffering and have actually worked wonders with my muscle cramps, aches and pains etc. which are now all thankfully becoming less and less every day to the point I no longer suffer with any which I did for a year or so after going sober.
But my neuropathy… some days (well nights really as that’s when it somehow likes to come out to play) its so painful I just want to hack my feet off. I can suffer with one or all of the following at any given time on an evening such as; pins and needles, intense itching, stabbing pains, hot and cold flushes and numbness even as if my feet are frost bitten.
When it’s bad I can barely walk and when it’s really bad my heels hurt like hell and it’s akin to walking with stones for shoes, so uncomfortable, hard wearing and very painful.
I’m told there is no cure, but what gets me is I only started suffering with it the moment I stopped drinking. I initially thought it’s got to be liver related, but if anything as my liver has got better, way better, to the point it’s functioning normally and I’m well compensated, my neuropathy hasn’t as such become worse, but more frequent which is now 2-3 times a week and sometimes a full week. All of which impacts my sleep massively which my doctor would only prescribe me with yet more anti depressant medication to combat this, and again I refuse to take it.
So I suffer with it, sometimes I can get a few hours respite by sticking my feet out of the covers for colder air if my feet are hot, or when they are cold, I wear socks overnight. When they tingle, cramp up or I get pins and needles I try and elevate them or wriggle my feet, to do exercises, but mostly I just grim and bear it and eventually do fall asleep with it gnawing away in the background which I become oblivious too.
I won’t quit trying to find a solution, however, because I don’t want to be having to put up with this for the rest of my life as it really is unbearable. I hope your partner doesn’t suffer too badly with it going forward and can get help to lessen any suffering. Good luck and take care.
You’re welcome. I’ve found my own doctors don’t seem concerned about mine nor seem to have any real insight into what may or may not help. I’m kind of thankful I don’t seem to have done much worse damage through my drinking other than initial liver related stuff, but it seems my neuropathy will be terminal and sometimes it’s chronic and it does concern me. I hope you get the answers you’re looking for, take care.
Hello, sorry about that . I have long time now , like last year and nothing helps . And some of nerves damaged forever neurologist said after EGM and Nerve Conduction test . GP not offering this , sorry just useless. Try to do yourself soon possible. This ilness can’t.be missed
it seems to be the general consensus that GPs have very limited knowledge of the knock on effects of liver disease. Thanks for taking the time to reply.
Sorry u mean Gp referred to neurologist who is free one and he wasn’t bothered to help for further investigation only advised to take Tiamine ( so we did found proper doctor )
Sadly it's quite common, but very rarely discussed, and I reckon if you asked around in non medical fields most people haven't even heard of this condition. I was a chronic alcoholic and for the first 3 months after stopping drinking I had no symptoms, but then all of a sudden the various symptoms appeared, my arms and legs would thrash around in bed and then the pain's appeared, I'm 12+ years sober and whilst my arms and legs don't trash around anymore I still have the various pain's and people describe the symptoms in different ways.
This can be described as burning sensations, pins and needles, fish swimming up the veins, puffiness,it comes in different guises and we all try and explain these symptoms in ways others can't understand.
Unfortunately it's the nerve endings trying to connect back with the brain and the signals get lost along the way, now there's tablets available but it's been a long term problem with people who have nerve damage to get any sort of relief, when I first started I burnt my bum in the bath as I didn't have any feelings in my feet!
And trying getting to sleep and trying to find a " cold " spot in the bed for my feet is a mission.
People who are diabetic or have had chemotherapy also can get this condition, I've also ended up with B12 deficiency problems and this has similar symptoms, I'm that long away from drinking now but maybe thiamine could help it's a sort of vitamin, I think 🤔 but don't hold me to that ,and perhaps try vitamin B tablets as well, definitely NO SMOKING and eat a healthy diet, and obviously no alcohol!!!!
If you're man is struggling sleep maybe ask his doctor about mirtrazapine and also pregabalin I hope this helps and any further questions don't hesitate to ask , best of luck 😊
Sadly I still smoke, although I’ve cut right down, but I know I need to stop for all kinds of reasons, neuropathy being one of them. I’ve found it far easier to quit drinking than smoking which I find odd given how hard it was to quit drinking and how hard it can be to stay sober.
B vitamins do help, I’ve learned one of the factors behind my own neuropathy is that alcohol depleted my body of thiamine among other vitamins and minerals which are now thankfully all back to normal. This also causes muscle wastage, aches and pains and stiffness. Which again mine now seem to have eased up massively.
My doctor said there is a misconception that alcoholics (I hate that phrase) often seem to walk strangely or with a weird gate because they are drunk, but often it’s because of severe neuropathy in their feet which they obviously aren’t even aware of and like most only learn of after quitting.
My wife tells me when I was last drinking heavily, towards the end I would sometimes complain about sore feet and pins and needles in my legs, it’s all a blur to me. I do remember leg spasms in the earlier days of quitting which would jolt me awake and were scary at the time. Those disappeared for good about a month into my sobriety.
Hi. My husband suffers from cirrhosis and diabetes. He has had neuropathy in his hands and feet for several years. After a lot of trial and error he takes gabapenthen and amytripaline and the combination has stopped the pain in his hands and considerably eased the pain in his feet.
I too have peripheral neuropathy, I think partly from my previous drinking and partly hereditary as my father and brother have it too. I don't think the pharmaceutical treatments are very effective and in some cases, not very nice drugs e.g. gabapentin. As I have liver disease I prefer not to take any drugs I don't have to to save what functioning liver I have left (I am compensated but only a small propoprtion of my liver is undamaged)
The things that help me: I sometimes wear compression socks at night and occasionally during the day. Cheaply bought on Amazon. I always keep my feet warm and always wear very supportive shoes with memory foam soles. If it is really bad paracetamol can help slightly but this may be placebo. I think gentle, regular exercise and gentle massage is better than resting the feet, especially as it is worse when feet are up and at night.
Last of all I am afraid to say an element of acceptance helps to deal with it. I am afraid it isn't curable, you will have to live with it to some extent. This makes it better for me. Luckily mine is only my feet, my hands are unaffected which makes acceptance easier.
Good luck with this, it is a bugger but it won't kill you
You are right about acceptance and the mind is an amazing tool as when I think too hard about my own neuropathy it always lasts longer and is more painful, yet when I refocus (or try to) my mind on other things, while I can still feel it and sense it, it’s kind of in the background and less bothering.
A month or so after I left hospital and well into my abstinence, my hands used to tingle, go blotchy and hot and cold and my thighs would sometimes go numb to the touch above the knees, that all stopped the minute my B vitamins and D vitamins went back to normal and I stopped taking the diuretics for ascites. My doctor said this was likely a side effect of the diuretics. I used to get stabbing pains around my liver area too, not the usual complaint of liver pain, it was like someone was prodding that area with a needle.
My doctor said it’s all more likely to be because of the damage caused by alcohol.
I do wonder with my own neuropathy whether mine is heightened and maybe also related to some strange oddities I’ve ‘experienced’ since I was a kid. My body produces a lot of electricity, on the night time for example if I take my t-shirt off in the dark, it crackles and lights up like blinking Xmas tree lights. Sometimes I will wake up absolutely boiling, no sweat just boiling like I’ve been out in the sun, even on cold nights.
I also get random electric shocks from things as random as a car door. Escalators and lift buttons are a nightmare for me. People have also had an electric shock off me shaking my hand or touching my head.
Another oddity is if I hold a bunch of copper coins in my hand, I can taste them in my mouth. I’ve suffered with an all-over body itch since I was a kid too which ironically, by drinking whiskey helped make disappear permanently, but only when I was drinking whiskey, which was one of the many many factors as to why I drank mostly whiskey, but now I don’t suffer with it anymore at all having stopped drinking full stop. That’s a weird (and joyous) one for me and something that perplexes me no end as I had that itch bad from a kid and no amount of creams or scratching helped other than later on the whiskey for some reason.
Another thing since I’ve quit drinking is I’ve become more hairier yet for a period after leaving hospital and quitting drinking, I’d either lose body hair or it become thinner. I do wonder if neuropathy is hormone related as well?
I’ve went to dermatologists about some of this and also had acupuncture in the past for 6 months to no avail. What gets me is my neuropathy, the minute it starts getting dark or daytime becomes evening, it’s there. Is it waiting or something or on a timer?! Crazy!
morning semiskinned. I get neuropathy in feet at night making sleeping impossible. I get stabbing pain and restless leg. I started to take 1 gabapentin to combat this and it works for me. Good luck.
My husband suffers with peripheral neuropathy and has been investigated by a nerve specialist with probes placed in various positions, his are mostly feet associated. Stabbing pains, walking on hot coals, cramps, burning sensation, involuntary kicks to mention just a few. We were told there is no specific treatment. I now massage his feet every night using Aloe Vera gel, this he says really helps and makes any pain subside. And if necessary I will do this during the day. Over night though definitely seems to be the worst. I hope this helps.
I have this in my hands and feet/legs. I take gabapentin for the pain. It copes with the pain but can leave my feet feeling quite numb and spongy which causes it's own problems - forever stubbing my toes. Some people find other ways of dealing with this other than through medication but whatever works for you.
Hi I have/had this too but on my upper legs. They were so painful I could barely touch them, even to the point of not being able to rest my arms on my lap when sitting down as it was agony. I had cirrhosis and ascites and this pain started a few weeks after my varices bleed and eventual discharge from hospital. I was prescribed Amitryptaline and was told it would take 12 weeks to work as that is how long it takes to fully get into your nervous and bone marrow system. I was sceptical but desperate and sure enough it worked just as he said. I am still taking it as I darent stop incase the pain returns. That was 11 years ago. Hope this helps him .😁
I kept getting numbness and pins and needles in my lower legs and feet, really bad, I found when I was drinking squashes, carbonated drinks and any drinks with fake sugars in, it was even worse, I've cut out a lot of the fake sugars etc and my feet and legs are ok again, I think I'm allergic to the fake sugars, but that is my experience, we are all different, and always good to check with your drs too x (I have non alcoholic chirrosis).
I am sad to hear how you are both suffering. I had t2 diabetes. I can, no longr lie on my side, especially w knees and feet together, otherwise, iget something akin to electric shocks and have permanents burning and same in the instep of my right foot, then there are leg cramps and restless legs; I have burning and similarin my hands, esp in the cuticles, typing can be a bit difficult (Iwas also a pro pianist, which is now a huge joke LOL) I now have stage 4 bowel cancer, so my liver and lungs are affected, not yet sure if this has any bearing on the overall picure. I go soon to have my feet and hands looked at. There seems to be a for and against Gabapentin. This had a very nasty effect on my brain; whether or not it was the two strokes I endured, I aam not sure, Gabapentin did awful things to cognition etc., I wish I had researched this! I pray you both a better life!
hello, I haven’t been told I have liver disease but recently had my gallbladder removed which had a large stone I was told the gallbladder was inflamed and had been sent to the lab I was also told that during the operation the surgeon had to remove a layer of fat from my liver. That’s all I remember because of the meds and anaesthetic and because I’d not slept for several days prior due to pain from the gallbladder flare. Now three days after surgery I have the most dreadful painful stabbing burning searing pain in both upper legs shooting down my thighs to me knees. My doc thinks it’s from the inflammation and has referred me to a muscular skeletal clinic for assessment and possible scans. My legs are very weak and the burning is constant it keeps me awake at night and none of the very strong painkillers for the surgery helps with the nerve pain. I hope anyone with nerve pain or peripheral neuropathy gets help quickly as this pain is more severe than the surgery.
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Had more blood tests and consultation with GP (family doctor), mostly better news I think
I lost my husband to liver disease on New Years Morning
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