• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Type 2 PN nightmare - help!!!

nannoo_bird

Well-Known Member
Messages
215
Going crazy with PN skin itching, prickling and hand and foot pain that is preventing me from sleeping. I tried Pregabalin and Gabapentin and they really messed with my head, I was like a zombie. Docs cannot recommend anything else. I am now trying antihistamine which helps with the itching but not the pain, I take magnesium supplements, I have various balms, oils, but nothing really works. BGs are stable. Any suggestions, am climbing the walls.
 
How long did you try pregabalin for? I found it really difficult at first but the worst of the side effects settled down after a few weeks. It slows my mind a little but constant pain and restless legs did that too by destroying sleep.
 
TriciaWs said:
How long did you try pregabalin for? I found it really difficult at first but the worst of the side effects settled down after a few weeks. It slows my mind a little but constant pain and restless legs did that too by destroying sleep.
Click to expand...
My GP tried low dose amitriptyline first - it works for some but didn't help me so much.
 

Nannoo-bird, not all neuropathy is diabetes related, but having T2 will not usually help, for sure.

In your shoes, I would try two things. I'm normally passionate about only,asking one change at a time, so that any improvement can be properly attributed, but whilst in pain, that's harder to see through.

Sooooo, I would double down on my diet, and see if I could nudge the numbers down a bit, unless they were already very low, and I were insulin, or other strong meds dependent. Secondly, I would source some R-ALA (not ALA, must the the R-ALA), which some have found helpful for neuropathy. (Amazonia could be your friend for this)

I tried it for a few months for post-surgical neuropathy on my ribs. I have no idea if it helped, or if it just eased with the passage of more time Andrew natural healing, but it sure felt good to at least be trying something.

If you are taking any other meds, it you do try the supplement, then ensure you check one of the drug interaction tools on the internet, to ensure there are no potential clashes.
 
Last edited:
I assume you mean alpha lipoic acid?
 
I was on the Pregabalin and then the Gabapentin probably for around 2 years. Even though I tapered coming off them, the side effects were horrendous, really frightening for myself and my husband - I was a complete wreck.
 
Hello, nannoo_bird! I also have a very tough PN and I did really try every available pills on the market. I’ve ended up with di-hydrocodeine,as that is the only one that helps me. 1 of the 30g pill gives me 4 hrs pain relief. If you haven’t tried it yet,give it a go. I finally can sleep....
 
Hi Matteo, thank you so much. Do you have to take it regularly, or just when the pain hits?
 
Hi nanoo_bird. I’ve suffered myself with this and I’ve tried the usual drugs with some success but the side effects outweighed the benefits. Someone suggested CBD oil along side my medication. I found it worked for me. You need to find a quality oil not one from a high street health ship. It couldn’t hurt to try.
 
Hi
I also have been told by my doctor that I have diabetic neouopathy in my feet and ankles. I have had it for more than twenty years. Long before I was told that I was diabetic. Last year I was prescribed Quinine Bisulfate 300mg. It seems to work in that it is less painful to walk now. The reports on Quinine on line are not good and a few of them give death as a side affect. As I live in Spain and it is not possible to get this medication on the Spanish NHS. I take one tablet every two day’s to make them last a bit longer.
I do use cushion foam inserts in my shoes to help and I take Tesavel 100 mg to help control my blood sugar which is now well under control.
I will be moving back to the UK this year as our children feel at 80 we are to old to be here on our own.
 
Not a cure, but a great hint for diabetic feet in bed - having a cuddle buddy pillow under your feet. The micro beads are so soothing and gentle on the feet. I'm also on amitriptyline, which also helps with sleeping.
 
Have you tried lidocaine patches? I cut them into smaller pieces and put on each thigh as my neuropathy affects feet and legs after 34 years of type 1 diabetes.
 
Hi I'm type 1 I have neuropathy and suffered for few years with the pain, itchiness,burning feeling to the point I wanted someone to chop my legs off (yes it was that bad) I suffered badly at night which affected my sleep docs diagnosed with restless leg syndrome and was sent to see a sleep specialist on explaining everything to him had bloods taken. He told me same day I had an IRON DEFICIENCY was put on iron tablets and OMG what a difference dont get me wrong I still suffer but the thing is not 1 doc in my local surgery new until I told them so may worth a try asking hope it helps x
 
Hello

i was in agony, couldn't sleep and wore only sandals.

The PN came before everything else. The pain at night was horrific and i struggled to get any sleep.

Pregablin alone had minimal impact. I added vitamin B complex and then my doctor subscribed duloxetine.

the combination of both pregablin and duloxetine did the trick.

my pn is now bearable. I wear soft shoes with socks and sleep like s baby.

i was so grateful to my doctor. The med combo changed my life.

worth a try for you?

cheers
 
Hello Nanoo Bird,

Sorry to read about what you're going through with Neuropathy, I sympathise loads!

I've been type 1 for 46 years & suffering with peripheral & autonomic neuropathy, retinopathy, cheiroarthropathy & gastroparesis for the last 23 years. I have tried lots of prescription meds & all sorts to try to help calm the effects to the nerves, without much help

I've been taking a huge dose of slow release morphine sulphate with phenytoin for a lot of years plus duloxetine about the last 4 years. These help me to take those wall climbing symptoms down that you speak of (I know that feeling too). I have a low carb diet, don't eat much really & control my blood sugars so my Hba1c is always around 42 to 45 or 6.2 to 6.5 (my consultant moans it's too low) but it helps. It took a few years to find the med combo to help me. I went through trials of gaberpentin & pregabalin & couldn't function from the effects. I tried amytriptylene but suffered awful night terrors from, had epidurals, a duragesic patch (had a bad reaction to the fentanyl, needing antidote in emergency) & tens. Tens on my lower back set high helped but overused to gain relief so was stopped.

I've recently heard about the R-ALA too (not the synthetic!). Apparently in Germany, I read, the Dr's treat neuropathy with huge doses of drip fed R-ALA. I've also recently been hearing about the benefits of CBD Oil for neuropathy. The costs are the only thing stopping me trying the oil as I'm dependent on benefits to exist. (Doesn't help that my DLA transferred to PIP & mobility wasn't awarded because of the huge changes).

I hope the info provided by the other forum members & myself will help you to find something to ease things for you. I know what you're going through only to well. Good luck & best wishes

Regards, Tux
 
The Alpha Lipoic Acid is the only thing that works although I take it with pregabalin. I do not take the'R' bbutwas told by a diabetic nurse(!) that I could have up to 1800 mgs per day. I take 400 x 4 times a day and when I forget even one dose by only a couple of hours the pain is excruciating - just like it was about an hour ago. If I miss the capsule before going to bed then it is impossible to get to sleep with itching and pain or I wake up with the pain very quickly. My A1cs and bg levels have been getting better and better over the last 18 months but the PN seems to be getting worse. Apparently this 'cannot' happen so as always it is hard to convince the 'professionals'. I tried cutting my dose and the pain came back very quickly. Of course there seems to be no real research that has shown what causes PN so it's no wonder there is no cure or even proper symptom relief. I diagram of PN in a locum doctor;s office I saw recently basically said that it was 'all in the patient's head' so use pregabalin as this is used to help people with brain issues such as seizures. Hence the possible effect on personality which luckily I have never had.
If there are any researchers out there reading this - get at it, we are often desperate.
 
Hi I am on gabapentin I also use deep heat max strength cream really helps
 
.

As I'm 72 years old, diagnosed in 1985, but now believe had type 2 diabetes from childhood, I'm ahead of you! Things I've tried include codeine phosphate, (fairly effective but nasty stuff), Dettol antiseptic in bathwater then having a long bath, (effective but see below), and sunbathing! I tried other things without success.

I found that the codeine works, but only for an hour or two, leaving the symptoms slowly driving me mad until the next dose was due. OK but only for "emergencies".

Putting Dettol in my bath usually resulted in increased itching, but after the 2nd bath with Dettol some days later, the itching had gone. This was my first real "clue".

Then I realised that the problem seemed to go away late summer for a few months. A doctor suggested that this might relate to vitamin D gained from sunbathing. That was a plausible theory, aided by having longer summer holidays in recent years with the benefit lasting longer into the winter.

This year has been different. Last summer I had the longest summer holiday of my life, (four weeks). I spent a lot of time in the sun, and now it's late February still am almost completely itch free.

CONCLUSION

The Codeine answer is only pain and itching relief, it isn't a cure.

Why did Dettol work? Effective but it seemed odd.

Sunbathing. Why did that work? It can't be vitamin d, I'm sure there's no vitamin d benefit left now it's around 6 months since my last time in the sun.

Then a brainwave flash, I think I have it. I think that high blood sugars, maybe years ago led to high sugar on the surface of my skin feeding a viral, bacterial or fungal infection to my skin. The Dettol attacks it, hence extra itching at first, then a benefit for a while with the infection eventually creeping back.

Ultra violet light, (essential for sunbathing!), kills viral and bacterial infections and may also kill fungal infections. I think that, last summer, four weeks of holiday, often in the sun, has "disinfected me" from something that has been with me for a great many years. It'll return, but there's next summer's holiday on a beach to help again!

I hope that this gives you some ideas. For Dettol use about a capfull, (the cap of the Dettol bottle), in a normal bath.

Sunbathing - not enough for sunburn, obviously.

No sun? Try an ultra violet sun tanning sunlamp. If using a sunlamp, wear a swimming costume or underwear to protect the body's "vital parts". I sunbathe in swimming trunks, the small covered area doesn't seem to be a problem. Probably with most of the skin protected, the small covered area means not enough infection is left to cause serious problems.

Good luck!


.
 
Last edited:
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…