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Foggy's "Invisible Illness" Support
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Peripheral neuropathy

Hi all

Im 46 and Going for 3 years Been Diagnosed with peripheral neuropathy caused by diabstes

( although they are controlled)

Anyone knows anything to relief this terrible pain I have in both feet up to the knees , been trying everything and nothing seems to help

Getting depressed wit all this and scared

Thanks

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Know how you feel Foggy.Had your problem 6yrs.Have had every test available,there is no apparent cure,only relief.Tried all sorts of medication,.Getting the best relief from. Pregabalin (Lyrica) twice a day.It's worth a try,ask your Doc.regards joe b

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Hi joe thanks for ur reply i had all them before the most popular ones then patches and then got allergy to them then morphine slow release and now I’m on tapentadol something stronger then tramadol but still in a lot of pain doc suggested some chilli pepper patches containing capsaicin but waiting list to long so they gave up on that now they are talking about some kind of thing to be installed in the spine is just very frustrating n depressing I’m a young guy who just open a business and this is totaly taking over my life :( and my chemist only suggestions for pain relief after he knows what I took is just things very highly addictive or pain like Metadone which I don’t want to even suggest and they even said that’s to much to take so till waiting fo appointments and all that is rubbish :(

Hugs

Paulo

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My husbands family have it, several members that he knows about. He has it quite badly now, his elder sister is seriously disabled. She didn't take care of her feet and legs though, and even had broken bones without realising when it got very bad as she grew older.

First, some practical advise, cooler weather seems to help, so it may be at it's worst for you at the moment - I hope you will feel a bit better in the winter, some people definately do. Some feel better for cool/cold water on their feet, or a fan. Don't wear tight and restrictive clothing. Have as light weight a quilt over your as you can. Make sure the bed is comfortable and fits you well - as minor discomfort seems to be amplified. Leave a window open for a bit of breeze on your skin if you can and have your feet out from under the quilt - it seems that overheating has a bad effect.

You probably know to avoid alcohol altogether because it makes it much worse in the long run even if it helps numb the pain in the short run. My husband was prescribed quinine with glowing reports of it's efficasy but he doesn't want to take anything stronger that paracetamol and sleeping tablets yet, so he hasn't tried it himself. Vitamin B complex is supposed to be very good if you are short of it - worth a try.

Above all things make sure that you check any injuries you may have, on your feet until they have healed up properly. His sister's experiences are a cauthion here. If you have rubs and scuffs, or blisters from shoes, dress them and pad about in slippers till they are better, even if you can't feel the injury or sit with your feet up until they are better if you can. Also, be careful not to put your feet and lower legs too near a fire or radiator. Don't break blisters if you get them because this can lead to infection - hopefully you wont ever need to worry about this if you are careful. All the sensations you get from the neuropathy can mask real pain sensations, so you might injur yourself and not realise. It is good to have a routine where you check your legs and feet each night - also hands and arms if they are affected. Get to know your GP's nurse and ask about any injuries that are worrieing you. The more carefull and methodical you are in early stages the less seriouse the problem will be over your lifetime.

My husband is not very careful, but is coming round to checking for blisters and fungal infections regularly, and now treats such things as they occure.

Don't worry too much though, my husband's sister is very disabled, as I say, but as the nerves died in her legs she felt less pain at the very extrematies. She has never been so baddly affected that she couldn't laugh and enjoy company, though she is probably one of the most disabled people that I have heard of with the condition - she says she got used to it, but very much looks forward to the cooler seasons each year.

I hope this advise helps in some ways, and you can get some peace of mind at least.

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hi I have had pn all my life 56 years born with it didn't do anything till I was 36 and ive been taking remedeine also know as paracetamol 500mg dihydrocodeine30mg they work for me takes the edge of the pain I get sleepless nights all the time the burning in my feet knees and hands is horrible so I know what your going through gabapentin also worked but put 3 stone in weight on so came of them I'm now on remedeine plus 500mg paracetamol 4 times a day plus nortiptyline 30mg at night

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Hi i tried them all patches, opioids, slow release and nothing helps :(

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I have a spinal stimulator and it helps TREMENDOUSLY. It is not perfect but during the day it relieves 90% of the pain. In the evening it relives around 60%. I also take 1800mg gabapentin,down from 3600mg. I have had non-diabetic peripheral neuropathy for 11 years, getting worse each year.

I have a foot wound that has not healed after 3 years of treatments. I am now going to hyperbaric chamber daily.

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Hi there I’m sorry to ear your story I was going to do that waited 5 months for the appointment and then they decide was to delicate surgery so waited again for this chilli pepper patches then they told me 5 moths later was no space for me to the patches and now they decided formme the spinal stimulator during the day I can sort be distracted of the pain which is terrible at night for

Me is the worst I feel my nerves oral trapped in my feet is horrible I’m sick and tired of it all.

I did high doses of gabapentin but just gets me really stoned I hate it now I’m in tapemtadol 300g morning and night the same ....my life is upside down with all this waiting and all the amount of medication I been taking :(

I hope you cope n be strong about all of it I know is very hard and the others. Don’t understand what we are going through x

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Hi Ptexys It sounds as if your peri peripheral neuropathy is advanced. I have been type 2 diabetic for 21 years now - after about two years I started to get woolly feet, which felt spongy - then I had sudden sharp pains in my feet. Though I went to an NHS chiropody clinic which tested my feet for cutunaeous sensitivity - I was told all was well as I could feel the touch of a feather tickling my feet. However the wooliness did not go away. I revised my diet to cut out all hidden sugars and carbs which |I had been eating such as bread and pasta. I had drunk low calorie tonics and no added sugar squashes.

I had to remove savoury biscuits as they were carbs, with sometimes hidden added sugar. My blood sugar remained higher than normal after 16 years and was threatened to go on insulin and drugs to control it. I went on a drug which I knew would upset me as I get gout. I tried it once it made me ill. Another doctor thought I should take it and prescribed it without my knowledge. The drug gave blood in the stools and a pain in the gut. |I was then told this year by a pharmacist that I should never be prescribed this drug as I have IBS. Where does this lead with neuropathy?

I had to go back to square one and radically reassess what was causing my high blood sugar. On my journey I took a food allergy test which scanned over 65 foods which had given me food intolerances. I found to my dismay that I had a multigrain allergy including rice ,wheat, rye barley, eggs dairy yoghurts, milk, and banana. This was a disappointment as all my comfort foods were taken away in one fell swoop.

However since removing every food intolerance, and using oats to make bread, and muesli - my blood sugar has gone down to normal at 6.2. My IBS has improved and only occurs with stress rather than as triggers to food. I had tingling in my hands for several months - I found some compression gloves were useful and stopped it.

Oats have a beta - substance which helps to lower the blood sugar - so I might still

be the same weight but helps to control the blood sugar.

I find the woolliness in my feet is affected by temperature at night, so I turn on the heating at night. If I wake up with burning feet which is infrequent since I removed my food intolerances, I put lukewarm water in washing up bowl, not too cold, and soak them to disperse the heat. Then I apply a moisturising foot cream - Neutrogena

with atheletes foot cream if it is present. I put on cotton socklets and use these every day with the hot feet at night. I find exercising my feet turning the ankles helps.

Sometimes I get a cramp like feeling in my feet so take some tonic water - my preferred one is Ssssw as the sweetners do not convert to sugar in the liver.

A banana is good for cramp pains as well. Have recently found magnesium tablets in

calcium carbonate can help foot cramp and pain - it can also help muscle cramps.

Potassium too is helpful for this too. I am lucky as I can test my blood sugar, and this helps me keep on the straight and narrow. I do hope you can find the right help

for this as it must be awful to be dependant on pain killers. There is a diabetic forum linked to thyroid unlocked so you might get more info from this site.

I was able to lose over 2 and a half stone without feeling hungry with my change of diet which has helped me walk and given me more energy. Take care .

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Have found drinking lactase free milk can help your blood sugar levels. Been on it since January. It's trial and error but I am not to say that getting your blood sugar to as low as you can if you are on insulin will be the best route - my family member has type 1 and has been told to cut down his sugar and hidden carbs as it is effecting his health even with insulin injections every day. He has muslce and eyesight problems and has had to have laser surgery on his eyes. That's why I am trying to reduce every facet of my diet

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Hi hawii60

Hop you ok my sugar levels are fine usually I cut the carbs who put the sugar levels even lower so I’m ok regarding to the levels is just to painful my foot. At moment I’m taking Tapentadol 250 morning 250 night don’t feel any deference but tomorrow I’m about to go into the Walton centre to get my first capsaicin patches into the skin thy are applied by th doctor at hospital if that doesn’t work need to wait for something to be put on the spine like stimulator .... been terrible in pain for the last 3 years my energy levels are to low doc says blood is ok he thinks is all to do with the pain.

Thanks for your replies x

Paulo

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I have the same issues, heavy legs numb feet and balance issues

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