Peripheral neuropathy

[foxglove]

Does anyone know what can ease the peculiar feeling that peripheral neuropathy causes? It is not pain just something that I can't explain but very distrssing

[stephen111]

I understand this feeling so difficult to explain. Tramadol took this away for me and gave me the energy to carry on a normal life. Some people cannot take it. I have been on it 10 years now with no problems.

[foxglove in reply to stephen111]

Thanks for reply, I have been taking codeine (which helps a bit) and pregabalin which does nothing. When the present frenzied situation calms a bit I will try to get gp appt. and ask about Tramodol

[Micafe in reply to stephen111]

Tramadol cured your peripheral neurophathy? Is that what you are saying?

[Tbrz]

Hi, I’ve tried a number of things, pregabalin, which made no difference except to make me feel really dizzy. The only thing that has helped me is Tramadol. I try not to take it in the day, just bear the discomfort/ pain, as it makes me very sleepy so I save it for night time. I think it a personal journey to find what works for you. Good luck.

[Von816 in reply to Tbrz]

I wish I could get tramadol.

[Tbrz in reply to Von816]

Yea, doctors are a bit funny nowadays, although I’ve been on it for over 4 years and it has not affected me in needing to take more of it. As I said I restrict myself to night time as would get even less sleep than I do. Without it I would get no respite from the pain/ discomfort, so I would get the doctor to give you a trial to see if it helps or if not already try their other suggestions. Good luck.

[foxglove in reply to Tbrz]

I think I will have to throw myself on gp's understanding and BEG for tramadol...seems to be the way to go!

[Von816]

I describe it similar to when you put your tongue on a 9 volt battery😔 I take gabapentin and cymbalta. I also alternate tylenol and ibuprofen. Cbd has helped as well. (Not thc) good luck. I know it is not pleasant at all.

[foxglove in reply to Von816]

Thanks for reply, would you kindly tell me which Cbd you find helpful? so many on the market I tried the H&B brand (only because it was on special offer), but did not find it effective. I think I may go to gp ....head bowed, on bended knee, and beg for tramadol

Good luck to you too

[Konagirl60]

Where is your nerve pain?

[foxglove in reply to Konagirl60]

Lower legs and feet

[Konagirl60]

Do you have diabetic neuropathy?

I use curcumin for nerve pain.

[Darkin]

I also experienced this and fairly regularly even seriously blistered my fingers without feeling a thing ! Also affected were my feet. Do to an infection in my heel the GP sent me to hospital where I suffered numerous operation to my foot because of osteomylitis. The fundamental cause of all this was that I had developed Diabetes, and unfortunately did not realise this until after major damage was done. Diabetes, high blood sugar, is the major cause of peripheral neuropathy. Unfortunately although I am on an insulin regime , the neuropathy damage is irreversible. So have your blood sugar tested either at a chemist or GP before you suffer much more serious consequences, as I did. Also I have taken to cooking my food in a microwave using a plastic jug as I found the oven burnt my fingers regularly !

[foxglove in reply to Darkin]

Thanks for reply My PN not diabetic related but oddly enough it eases (A bit) if I don't have too much sugar. I have blood tested regularly as although not diabetic sugar higher than ideal, Difficult now to get tests that gp doesn't think necessary will see what private test costs

[Darkin in reply to foxglove]

Tests in chemist are usually free I think. Also you can buy colo.ur coded

test strips for peanuts these give you only a rough indication. However if your GP does not recommend testing then it is likely you dont have diabetes mellitus as they are acutely aware of diabetic symptoms. For a more accurate reading I use a perform accu-check device which is fairly cheap. Recently my sugar readings have normalised and I seldom need to inject insulin but depends type of food I consume, however the neuropathy has not eased at a'll but is not painful in the accepted sense, the damage having been done over a long period of average high blood s ugar. When I was admitted to Hospital the blood sugar level was 20 plus although I had nothing to eat for hours.

[foxglove in reply to Darkin]

Thanks for advice, it is the 3 month glucose test I was interested in. Over the last ten years (at annual check) it has been between42 and 43 which doc says is pre diabetic. My husband type 2 and I bought a metre for him to test on (But would he - a man after all!) When I checked myself more or less always about 5.4. I had heart valve replacement 2 years ago and the highest reading there in hosp.was 7.2 and that was after breakfast of porridge, toast, banana and fruit juice, although maybe bloods not perfect nobody commented on them so I didn't bother. Would be interesting to see if lower bloods would help PN however. I'm sorry you still suffer, agree not painful in the usual sense, don't know how long it has taken for my PN to develop, told by consultant neurologist not curable but as I said before docs. not always right, if I have the persistence will try the bloods route!

[Darkin in reply to foxglove]

Between 5 and 6 is perfect. My 3month is also ok only due to the insulin therapy. Unfortunately the nerve endings have been damaged and this cannot be reversed. My blood supply is ok to the peripheral endings. I have lived with my neuropathy for about 4 years now and don't find it distressing but have to be very careful to avoid further cuts bruises and burns etc. I wish you well.

[foxglove in reply to Darkin]

Thanks for reply and good wishes,.......as I don't (fingers crossed) actually have fully developed diabetes never have been checked at docs. nurse etc. only when at neurology clinic and podiatry, both seem to feel happy that I've got some bit of pulses in nerve endings so keep hoping! Like you I have lived with PN for some time but unlike you I do find it distressing and keep on trying different - if not cures- at least something to help. Don't have really to bother about cuts etc. as seem to heal quickly if I'm careless (VERY OFTEN) so suppose I'm lucky on that one, a bit sorry for myself to be honest and I know lots of folk much worse and don't whinge as much as I!!!! Good wishes to you, take care and be good to you!

[EOLHPC]

Feeling for you...my PN is now severe in hands & feet & head especially...it’s caused by my infant onset lupus...am 66 now so my PN has had many years to get this bad...I have constant 24/7/ horrible PN symptoms (everything: from the bad numbness to the terrible tingling + burning). My combined lupus immunosuppression meds help a little bit...& I’ve been on nightly amitriptyline + highest dose paracetamol for the PN for years (now on 30mg amitrip. which maybe helps a bit)...but I also have had to learn self help techniques because I am allergic to all other types of pain meds, from gabapentin to opiates like tramadol & to all NSAIDs + codeines too.

Does your PN give you constant almost unbearable burning in feet even when your feet are actually white with cold?

This is very distressing...am glad you’ve posted...am wishing you good luck finding something that helps 🍀❤️

[foxglove in reply to EOLHPC]

Thanks for reply and my sympathies to a fellow sufferer. I had discoid lupus badly in my teens and twenties but in remission for a long time (Don't take meds for it), but perhaps there is a connection. I was seen by consultant neurologist who told me no cure but prescribed me pregabalin which I don't think really helps. I find best drug is codeine and a few people on this forum have recommended tramadol so I might be brave and approach doc re. this. Oh dear no answer really, and best wishes to you

[EOLHPC in reply to foxglove]

Thanks...yes, it’s a case of self help/lifestyle management + whatever meds we can tolerate that can take the edge off PN...also v important to self refer to NHS podiatry services because our feet are highly at risk...especially with age ❤️🍀

[foxglove in reply to EOLHPC]

Thanks again, I have been attending hospital podiatry (Nurse referral) because of infected toe, also toenails peeling off - sounds painful but not really. Hosp. podiatrist says it's probably my poor circulation that's the culprit. No apps meantime so I've *as usual !) been treating myself. Must phone next week to see if appts being restored

[EOLHPC in reply to foxglove]

Glad your feet are already officially in NHS care...my PN is also simultaneous with bad vascular/circulation probs due to my autoimmune diseases...our feet & hands are at high risk due to this combo, so their condition needs to be closely monitored! ❤️🍀

[foxglove in reply to EOLHPC]

Agree!!! xxx