Neuropathy advice

[Brettskee]

Sorry meant for jp

 

[Brunneria]

Hi,

my suggestions are that you do NOT accept the opinion of a trainee physio or your general practitioner as a final diagnosis. Ask for a second opinion, or a referral to a specialist.

Check out vitamin B12 deficiency - it is often mistaken for neuropathy, and while it is unlikely to be happening to you, it is always worth spending half an hour with Google to increase your knowlege base.

The Relationship of Vitamin B12 and Sensory and Motor Peripheral Nerve Function in Older Adults

To examine whether deficient B12 status or low serum B12 levels are associated with worse sensory and motor peripheral nerve function in older adults.Cross-sectional.Health, Aging and Body Composition Study.Two thousand two hundred eighty-seven adults ...

www.ncbi.nlm.nih.gov

B12 is readily available as a costceffective over the counter vitamin supplement.

If I were you, I would also make a private appointment with a Chiropractor. They will have the knowledge and experience to distinguish between trapped nerves and neuropathy.
I myself have had numbness in one foot, which went away with gentle regular yoga stretches to my lower back. I also had numbness and tingling in one hand and arm which went away with chiropractic treatments. In both cases the problems were caused by trapped nerves. And in both cases my doctor had showed no interest and offered no treatment.

 

[Firefly1]

Hi again. It's been a few days, so here's an update.

I've seen another doctor this week, who again prodded my feet a few times and told me it's probably diabetes related. He's going to send me for nerve conductivity tests, but it may be a month or more before the appointment comes through.

Do these tests confirm it's diabetes related. or just confirm peripheral neuropathy? I accept I have PN, but it seems different than what I read elsewhere (gone from totally healthy to pain, no sleep in 2 or 3 weeks, have good diabetic control, tingling all over body including back, face, etc). In the space of 4 weeks I also seem to be devloping a bit of a tremor, is that normal?

If it's PN caused by something else would these tests tell the difference?

Have you researched Treatment Induced Neuropathy? It’s acute onset of PN with off the charts refractory pain due to rapid correction of BG levels. I’m battling this now. Came on overnight.

 

[jp619]

I’m sorry to hear that Firefly. I hope things work out OK for you.

I don’t think it’s that. My control hasn’t improved lately, it’s been pretty good for the last 10 years or so. That’s why it’s such a mystery to me.

I have tightened up my control since it began though, as that’s the advice given to me by everyone. Although it’s quite hard as I was doing OK before. Is that the right thing to do?

 

[Firefly1]

Hi JP,

There is absolutely no reason whatsoever why you should not seek a second opinion, but there will come a time when, as you say yourself, have to accept what it is and deal with it the best you can at any given time.

I also noticed the more I have my sugars controlled throughout the day the less the NP causes me trouble at night.

My understanding of NP (And I could be wrong) is that due to having poor blood circulation in our extremities, our nerves overtime get damaged and then give false signals to our brain, pain signals, involuntary movement signals or your feet feel very cold when they are warm to the touch. Unfortunately once nerves have been damaged there is no way to repair them. Though I have read claims online that nerves can be repaired, but from what I have read scientifically it is yet still impossible to do.

But don't give up hope, look how far we've come in treating diabetes in such a short period of time.

As for the NHS, many a year ago I was a patient, and I can't praise the NHS enough. It is one thing I can honestly say that I miss in the UK, but I chose to leave it to follow my own ambitions elsewhere, knowing full well that I will lose the safety net of the NHS and all that comes with it, like everything is free and you get the very best in medical care in the world. On my travels around the world I have seen some extremely poor healthcare systems in place, and it is not uncommon at all when you are thinking about someone’s life you are weighing up the financial cost of keeping someone alive even though the technology is right there to be able do so, it can be very costly and it is at times more financially viable to just let that person pass away peacefully, even when they are young, it is a tough decision to make, something that does not have to be made in the UK thankfully. Anyway like you, I do not want start comparing healthcare systems from around the world, for everyone on here, there really is no point.

I wish you well JP and if you feel I can be of any further support with your NP or diabetes, then please do get in touch.

Thanks

I’m not a Dr. but in regards to PN’s….from all the research I’ve read and watched and 2 neurologists and an endocrinologist here in Boston….the existing damage to the peripheral nerve(s) via diabetes or prediabetes is irreversible. Let’s get that out of the way. Body does NOT repair existing damaged nerve by high BG levels.

What do I mean? The protein that is bonded to the nerve is sticky and can’t be unbonded. Glycocylation of nerve proteins I believe is the term. This inhibits nerve activity and causes the nerves to misfire. Coldness, burning, pins and needles, weakness, numbness etc…all the PN symptoms.

BUT BUT BUT….and here is the good part….in the right condition like normalized BG, peripheral nerves, unlike the central nerves, can and often do regenerate and resprout at 1mm per day. The new regenerating nerve slowly replaces the existing damaged nerve. This takes a long time to happen. In the event of feet and toes……this could take months and 1-2 years depending on your height being that those nerves are the furthest from your body. This is why so many folks on here see improvement when lowering their BG and experience pain after the numbness goes away.

I strongly urge folks to YouTube Dr. Berg and Dr. Bernstein on peripheral neuropathy and reversing diabetes complications. These videos will provide hope to those who have little now. You have the benefit of time on your side.

Lastly, definitely search out R-ALA, B12 Benfotiamine and additional supplements that will assist in this journey of recovery.

 

[jp619]

Hi everyone, I wanted to give you all an update.

You may remember I was told out-right that I had diabetic peripheral neuropathy, and was sent home with duloxetine. Accept it, go home and take these tablets was the advice. I continued to push doctors on this, but they were insistant, refusing any further investigation, that diabetes was the cause. I eventually manged to convince my doctors to send me for a nerve conductivity test, but when the results came in they still insisted diabetic neuropathy and wouldn't refer me on or investigate further. Go home and take tablets was still their advice.

This morning I've seen an amazing Neurologist Consultant privately. She's an expert in her field. After a much more thorough examination she's concluded that my pain isn't anything to do with diabetes. Instead she believes a Covid infection I had before Xmas '22 has lead to an inflammatory response that is causing my nerve pain. The good news is that there is a chance this may clear, maybe even on it's own. I'm being sent for more tests, and potentially I'll need immunoglobulin treatment, although for now none is needed as symptoms don't seem to be getting worse.

My efforts now are to look at all things anti-inflammatory to aid my potential recovery. I'm taking a handful of supplements for neuropathy - as it happens many of those supplements have antioxident and antiinflammatory properties - maybe that has helped me so far!

Any thoughts on this?

 

[Firefly1]

Hi everyone, I wanted to give you all an update.

You may remember I was told out-right that I had diabetic peripheral neuropathy, and was sent home with duloxetine. Accept it, go home and take these tablets was the advice. I continued to push doctors on this, but they were insistant, refusing any further investigation, that diabetes was the cause. I eventually manged to convince my doctors to send me for a nerve conductivity test, but when the results came in they still insisted diabetic neuropathy and wouldn't refer me on or investigate further. Go home and take tablets was still their advice.

This morning I've seen an amazing Neurologist Consultant privately. She's an expert in her field. After a much more thorough examination she's concluded that my pain isn't anything to do with diabetes. Instead she believes a Covid infection I had before Xmas '22 has lead to an inflammatory response that is causing my nerve pain. The good news is that there is a chance this may clear, maybe even on it's own. I'm being sent for more tests, and potentially I'll need immunoglobulin treatment, although for now none is needed as symptoms don't seem to be getting worse.

My efforts now are to look at all things anti-inflammatory to aid my potential recovery. I'm taking a handful of supplements for neuropathy - as it happens many of those supplements have antioxident and antiinflammatory properties - maybe that has helped me so far!

Any thoughts on this?

I can’t say enough how important it is to get as many opinions as you need. I understand you can get into rabbit holes. I had onset burning of feet after lowering A1c too fast. My Dr. was stumped. You need to be an advocate for yourself. Saw Neurologist and was diagnosed with TIND. That explained the burning. Half the battle is getting the answer. Glad to see you found an answer.

 

[Caprock94]

I can’t say enough how important it is to get as many opinions as you need. I understand you can get into rabbit holes. I had onset burning of feet after lowering A1c too fast. My Dr. was stumped. You need to be an advocate for yourself. Saw Neurologist and was diagnosed with TIND. That explained the burning. Half the battle is getting the answer. Glad to see you found an answer.

TIND. Same thing happened to me. Still holding out hope it eventually goes away.

 

[Firefly1]

TIND. Same thing happened to me. Still holding out hope it eventually goes away.

It’s been slow. I can go 4-5 days with no issues, then I sit down in the afternoon, and I get a slight pins and needles feeling on 3 toes on each foot for an hour or so. No pain in middle of night though. I’ve read it could take years for TIND to totally go away. It’s the ends of my toes which are the furthest point from the heart, I so guess it makes sense to take this long.

 

[Prince4]

It’s been slow. I can go 4-5 days with no issues, then I sit down in the afternoon, and I get a slight pins and needles feeling on 3 toes on each foot for an hour or so. No pain in middle of night though. I’ve read it could take years for TIND to totally go away. It’s the ends of my toes which are the furthest point from the heart, I so guess it makes sense to take this long.

Does anyone have experience of muscle aches too?

 

[ModyGirl]

@jp619 thank you so much for this post as it might explain what is going on with me! Been told I have small fiber neuropathy due to my diabetes but only been diagnosed for 7 years (5.5 at time of onset) and have all the symptoms of autonomic neuropathy too! My hba1c's have ranged from 32-54 with the latest being 46.

I've been in a terrible state with no real answers other than it beig blamed on my diabetes but the burning/vibrating didn't start until after my third vaccine. POTs symptoms started during covid 3 months before.

Is it IVIG you'll be having?

 

[blowinbubbles77]

I have p/n and mine started as tingling in my hands with a frozen shoulder it got alot worse over a two year period becoming painful that ild wake in tears from pain i researched some varies pages and forums but also the diet can help ease some symptoms of p/n i drink tea and coffee and have switched to caffiene free tea and coffee skimmed milk no sugar and that within the first three weeks lessened the pain to the point i no longer need the pain medication which also makes you feel complete rubbish Less acid types of foods and less fatty foods helps too i know its a kick in the teeth but i still have p/n now just tingling and pins and needles but its much more bearable than the pain the pain in my hips and legs has gone also since switching foods and changing to a more healthier diet (i still have my sweet treats) ive been type 1 for 46 years almost now all my life i know no different than a diabetics life style there is no cure for p/n but theres things that can help a bit to make even the smallest difference

 

[Impy]

Hi Matt,

Out of interest why do you say that about pain meds at an early stage?

My doctor has already put me on meds, an anti-depressant Duloxetine. Partly to help with my mental health, and partly because the same meds will help with pain.

I've gone from no pain 3 weeks ago to quite a significant and disruptive pain. I have a follow-up appointment with a different doctor on Wednesday. He was also really surprised that everything has happened so fast.

Hi guys - I presented with peripheral neuropathy symptoms before I was diagnosed with T2 Diabetes, unfortunately it took 2-3 months after I saw him for the T2D diagnosis, so it got worse by the time I was diagnosed in March 2023 (cold feet, tingling and muscle spasms in my legs).

Following some advice I found on Youtube (check with your doctor before doing this please), I started taking co-enzyme q10 and r-alpha lipoic acid supplements along side my LCHF diet and my prescribed 2000mg metformin. Nerve damage takes a very long time to heal, but by keeping my blood sugar levels low (between 5.7 and 7.5 mm/l most days), I've managed to reduce the pain and tingling significantly since then.

Please check with your doc before taking these as I'm not sure there are any interactions with your prescribed meds, that I don't know about.

 

[Bazhba1c51_]

Hi everyone,

Can you help me please with some advice please? I'm a T1 diabetic (39 years) who has been diagnosed with peripheral neuropathy today ... it may be, but I have a small doubt.

About 4 weeks ago, I came down with a really bad neck, upper back and hip. Whilst suffering that, I developed tingling in one foot (which I attributed to something going on with my back, such as psiatica or a trapped nerve as it seemed to get worse when I tweaked my back). The doctor ran blood tests that all came back OK, and booked me in with a physio.

Since then the back pain has gone, but the foot tingling has remained. It's been like it now for about 2 and a half weeks. It's not been painful, just a tingling. At night it's worse, still not painful but feels like my whole leg is twitching in-time with my foot and wakes me up a few times. Whilst it was just one foot, I was hopeful that it was back-related. Then, a few days ago, I have developed some pain and tingling in the other foot, which has set my alarm bells ringing.

I saw the physio this week, who did a very brief 4 minutes worth of tests to test strength, and told me it wasn't anything to do with my back. He was a trainee, and it didn't seem particularly thorough. I mentioned a few things such as piriformis to the physio, but he told me that was fairly rare so not likely. He suggested I talked to my doctor about peripheral neuropathy as I'm diabetic, which I did today.

My doctor took the same stance - I have tingling, I am diabetic, therefore it's peripheral neuropathy. He said he couldn't think of anything it cold be, but conceeded that some other symptoms I have are "weird".

My concern is that it's not peripheral neuropathy, and that everyone is jumping to the same conclusion as I'm diabetic. I'm basing this on a few other weird things going on - I also have tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN, so to keep an open mind.

My question is, does this sound like the beginning of peripheral neuropathy? And where do I go from here? I'm (reluctantly) willing to go private, but what type of doctor do you think I should see? I've seen nerve testing mentoned on forums, but nothing liek that has been offered to me.

Any help is greatly appreciated. I'm quite worried at the moment. Thanks in advance.

This is my experience in the just over 10 years I have been T1. How I deal with toe neuropathy on a daily basis and how it works for me 100%. As humans do not pay much attention to our feet until something goes wrong. We cover them with socks and punish them for wearing most of the time wrong fitting shoes. Feet are ugly for many people. There are more bones in our feet than in the hold body. In my opinion toe neuropathy occurs due to the fact that it takes a long time for the heart to pump blood all the way down and bring it up to recycle. When I started having the symptoms, I would wake up so often in the middle of the night with a burning and painful sensation on my feet that did not want to go away. I stomped my foot on the floor several times until the pain was gone. Over the years I have moved away from that painful sensation to the nagging tingling that sometimes I get from toe to knee, which feels like having a thin wire inserted under my skin, and does not want to go away. Get ready for this, solution?..... I bought a foot massage device. Not the average flat device where you place your feet or the one you can feel with soapy water.
There are better models out there, but this one fit perfectly within my budget at the time, and I still use it on a regular basis. I have come very attached to it. It is part of my daily routine to keep the neuropathy at bay. The device works on the hold feet up to my ankles. It has several modes and speeds. I bought it chiefly because I have a deep arch. I need to wear handmade orthopaedic soles. Can not walk without them for long. I usually give a foot massage, depending on how the neuropathy plays up. If I wake up in the middle of the night, I commence by rubbing my toes with my fingers. I apply much pressure as needed. If it does not go away, I use the monstrosity, because is huge, until the tingling disappears.
It helps to apply some oil to the skin, believe it or not, is part of the soothing feeling sent to the brain. Nowadays hardly any symptoms of neuropathy. I could go on writing about the whole neuropathy experience, but it comes to this. Look after your feet and they will look after your spine and overall health of your body. You have nothing to lose, only the pain. Good luck


(mod edit to comply with forum ethos)

 

[Oldvatr]

Please check with your doc before taking these as I'm not sure there are any interactions with your prescribed meds, that I don't know about.

Sound advice. Co=Q10 can interfere with anticoagulants such as Warfarin, and also with injected insulin therapy and some BP medications. It can also interfere with some cancer treatments. It appears to be fairly minor in these interactions and is considered safe.

 

[Bazhba1c51_]

I have p/n and mine started as tingling in my hands with a frozen shoulder it got alot worse over a two year period becoming painful that ild wake in tears from pain i researched some varies pages and forums but also the diet can help ease some symptoms of p/n i drink tea and coffee and have switched to caffiene free tea and coffee skimmed milk no sugar and that within the first three weeks lessened the pain to the point i no longer need the pain medication which also makes you feel complete rubbish Less acid types of foods and less fatty foods helps too i know its a kick in the teeth but i still have p/n now just tingling and pins and needles but its much more bearable than the pain the pain in my hips and legs has gone also since switching foods and changing to a more healthier diet (i still have my sweet treats) ive been type 1 for 46 years almost now all my life i know no different than a diabetics life style there is no cure for p/n but theres things that can help a bit to make even the smallest difference

I suffered a frozen shoulder for more than a year. I ended up meeting this excellent chiropractor. Before that, I went for painful acupuncture sessions, which did not work. I went for over a year and varied from month to month, depending on how I reacted to the treatment. I have to add that I had spine issues; therefore, the treatment took longer. I was spending around £1,300.00 a year. Worth every penny. I tried other chiropractors but never got the same results. It's been years since the last time I saw him again. My shoulder is fully recovered, and no significant issues to talk about. Stress plays a big part in the condition. The first day I started therapy took around 15 minutes of manipulating my shoulder and arm tissue. I soon as I left the premises, the pain was gone. He charges around £30 per session, but I only regret how stupid I was by getting a frozen shoulder in the first place.
It has been a great learning experience; I have even bought a book that explains the frozen shoulder condition and how to heal it in great detail.

 

[Bazhba1c51_]

I don't know where you should go (health care system in my country is different from yours, for one) but that diabetes nurse sounds like a keeper.
I strongly believe diabetics are at more risk of having health issues overlooked because doctors are quick to blame things on the diabetes.

The short answer is yes, it does! You can start by paying attention to your body signals. In my experience, if I do not listen or pay attention, my body reacts, heating me harder. The choice is yours. I got nothing to lose by trying, only the pain. I do not rely so much on those who lecture me because they have degrees. Over the years took the matter into my own hands, and I am a new man. Believing is power; I only feel it when I see it works. So far, so good.

 

[ExChocoholic]

I am awaiting hip replacement and all cartilage is gone from right hip, dreadful pain especially at night, so painful have to get up feels like bones lock up. Above this an my lack of movement has exacerbated neuropathy feet feeling dead and either too hot or cold. I'm hoping once hip surgery has taken place and recovery time might help when I hope to start mild exercise. My BS have improved over last few months but I'm eating less and lost weight. I'm only 8 stone never been much over 9. I'm a bit naughty and eat sweet things occasionally but currently housebound due to hip and need a little treat. I have Stage 4 CKD and I am doubly in diet requirements for DB and different often conflicting requirements.

 

[paracelsus53]

I began experiencing a weird sort of facial numbness on both sides and got an appointment with a neurologist months out (earliest I could get). I had already begun to experience some numbness at the ends of my feet. I figured the foot thing was diabetic neuropathy, but for me it was strange because when I was young I got alcoholic neuropathy in my hands and it burned like mad. That went away with big doses of vitamin B complex and not drinking anymore. I remember the vit B so started taking that to see if it would help my feet, and it has decreased the numbness a lot. I didn't think the facial numbness was diabetic because it came on all the sudden.

I then began experiencing a weird feeling of something crawling up my legs when I would be in my recliner. Similar to what someone said about the cold water dripping up on their legs. I knew it must not be any real bugs. It was definitely related to my position, since I never had it other times. A friend who is a mixed martial arts fighter thought it must be something with my neck.

I finally got to see the neurologist and he did a very thorough exam plus had the results of a CT scan. Said my brain was in fine shape for someone 70 and my exam was normal and he thought my weird symptoms were just diabetes stuff. I did get the feeling of "oh well gotta be diabetes don't have to look any further." So I got a second opinion from another neurologist and he said the same thing, and he said he didn't know what my facial numbness was from but thought it would go away. Still, he also has me scheduled for a follow-up in about a month.

I did a ton of research on my own when this facial thing and "bugs" started up and couldn't find anything that caused similar symptoms except MS. Neuro said he saw no evidence of that.

About the restless legs/twitching stuff you mentioned, I got that a couple years ago and from what I read of it, it has nothing to do with diabetes. I started taking magnesium glycinate and it has stopped. Such a relief because it used to wake me up. I recommend specifically that form.

I wish you luck. I am grateful that none of the weird symptoms I've been having hurt.

 

[Mallyman]

I started grounding. Its either all in my head or it works but I felt a fly crawling over my foot on holiday. Normally numb area. Try it.