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Neuropathy advice

I know this was some time ago, but I found acupuncture with a bit of massage worked for me. I have PN in feet and get bad cramps in legs but they went away (supressed probably better word) after a few treatments. I cut down from once a week after 6 months to fortnight, now once a month and it is holding. Agreed we are all different, l also used magnesium spray first and it helped. Hope you are all sorted now.
 
I feel for you. My husband diagnosed T2 last October when he went to docs for a pain below his ribs. We're lucky to have private through work and he underwent MRI, CT, Ultrasound, endoscopy, colonoscopy (which luckily all came back clear) as nobody would believe that it could be diabetic nerve damage (his original bloods were 126!) as he didn't have it in hands or feet. Nearly a year down the line and they've come to the conlusion that he does have trunkal neuropathy. Like you, they discounted as said it was rare but then you can be one of the rarities! Same with my grandchildren, one born early 1lb 10oz, lots of problems, hospital kept denying he could have diabetes as it's so rare and then at 6 weeks old it turned out he did and was born with it. Same for his brother but at least they were ready to test him immediately. Keep on in there and I hope you do get to the bottom of it.
 
it may well still be mild sciatica if you've had lower back problems. I experienced something similar a couple of years ago - lower back pain then shooting pains down the leg and tingling/discomfort in the ankle and foot. I ended up having a nerve block for the lower back issue which sorted that out, but I still experienced the ankle pain, My consultant said it's likely that the nerve suffers 'memory effects' once switched on by the original problem, so you end up with these 'signals' being transmitted to the foot area manifesting itself by issues such as you describe. I was prescribed a short course pre-gabalin which helps calm the 'triggered' nerve down and, in a couple of weeks, I had lost the feeling altogether. It may be that you still need to have the lower back area looked at - but backs are tricky things! Good luck though as back pain is amongst the most uncomfortable experiences one can get.
 
You need to have nerve conduction tests, that will measure how the nerves are working. Ask diabetic consultant to refer you to a neurologist, then ask for nerve conduction studies and MRI of brain and spine to see if anything else is going on. To be honest it depends on who you see, some doctors just say 'oh you've had diabetes a long time it's neuropathy' but you need these nerve conduction studies to prove it. I've had diabetes for 52 years, I have neuropathy in both legs and feet but didn't realise how bad it was but hey onwards and upwards, still working and still enjoying life. I didn't realise how diabetes can affect your tendons, soft yissue, ligaments etc, but I'm well controlled, apparently the damage was probably done in my earlier years when wr only had injections and not a readeal of knowledge Good lukand hoe you get sord soon.
 
Hi. Have you had a blood test to rule out low iron or phosphate levels?? I had symptoms not too dissimilar to yours. To me it felt like I had what I can only describe as a 'fidgety' feeling in my legs and feet. Although I had symptoms during the day they seemed to intensify during the night to the point i was only getting a couple of hours sleep.
I had blood tests which confirmed I was very low in Iron, phosphates and vitamin D (which can cause aches and pains all over your body) Maybe contact your doctor and ask for some blood tests. All my levels are back within a normal range and I'm beginning to feel more human again!!
 
I was lucky to get referred to a neurologist and have nerve conduction tests but not everyone can get on that path.

There are other possible causes which can be picked up by blood tests, in my case it was a low folate (folic acid) issue. And three different Drs did blood tests but failed to test for this vitamin.
Check which blood tests your doctor ordered? Did it include Vit A, D and folate?
 
I’ve had PN for sometime, gradually getting worse. Initially I had the pain/pins and needles when I lai down, preventing me from sleeping.i mentioned this to my diabetic nurse, who was also a practitioner and she straight away gave me Amitriptyline 10mg to be taken each night. From day one it was magic and it allowed me to be pain free at night and sleep.
This was about 10years ago, I’m afraid this hasn’t stopped the progression of the PN but it has allowed me to sleep. Ten years later I’m taking 75mg a night and I have continual numbness in my feet, seems like I’m walking on sponge rubber, I don’t have any feeling when they test my reaction to pins put against the sole of my feet. This is mainly my fault having had bad control of my diabetes and not eating healthily.
 
Hi, jp619.

Sorry I'm so late in 'coming to the party', but I have a suggestion for you, sir. Ask your doctor to refer you for a Nerve Conductivity Test NCS), which is where small metal wires called electrodes are placed on your skin that release tiny electric shocks to stimulate your nerves; the speed and strength of the nerve signal is measured, and/or electromyography (EMG), which is where a small needle is inserted through your skin into your muscle and used to measure the electrical activity of your muscles. The two tests are normally carried out at the same time.

I would advise that you get a correct diagnosis and that the correct treatment is offered to you as peripheral neuropathy can advance to the stage where the pain gets increasingly worse, until the stage where the nerves are so damaged that you will no longer be able to feel anything at all in your extremities. (I haven't been able to feel my feet and lower legs for more than 25 years now.)

What is your blood glucose control like? Poorly controlled diabetes is MORE LIKELY to lead to the development of diabetes-related complications, and peripheral neuropathy is just one of these.
 
I wouldn't ask for a conductivity test, but for referral to a neurologist, who will have these tests and others to hand. Mine is really good and gave me the good news, on my 60th birthday, that I had diabetes, then hypothyroidism, arteriosclerosis, B12 deficiency and over half my spinal discs bulging with one touching my spinal cord and causing large spasms.

I took registrars almost a year, doing various tests, including lumbar puncture, to not find out what was wrong, but Dr Ellis was the only neurologist on call and doing consultation on Christmas Eve , so I saw him and he did the obvious (ordered an MRI; I've had lots since) and found that my arm and some left leg problems were caused by my spine.

Some years later, I had two bouts of sciatica, the second being worse and needing more meds, but the third, 3 years ago was pure agony, after a month's trial on increased meds, from a GP and I had to go to A&E after the paramedics jabbed me so they could move me . The surgeon at the hospital said surgery was too dangerous as Covid was at its height and the injections, being hospital based were also risky, so we would wait, as my 'slipped disc, shown on the MRI may be gone soon.

Long waits, many caused by admin staff errors, were followed by my allocated spinal surgeon finding I had spinal stenosis so needed major surgery, which I had last November. I was on 4 pain drugs and had to live upstairs, in order to reach the bathroom, for over 2 years.

The surgery was painless, but the surgeon discharged me after a checkup, saying it was good, because my severe pain was gone and I could walk, yet needed a wheelchair on my last outpatient visit. In fact I tottered a few steps into his office, as the only wheelchair available was a bariatric one, which would only go through double doors. He said I must use a frame or wheelchair, as I was too unsafe for crutches.

Dr Ellis ordered an MRI and a nerve path test (quite funny when your leg jumps up by itself). The physicist said the nerve test showed there was no longer any damage being done and Dr Ellis' MRI report (sent to me last week) said that the surgery done could be seen and that any changes since the pre-op MRI could not have caused the neurological symptoms, so the surgery worked.

However, I have very odd foot sensations, still have pain in various places, can walk only a few steps, supported , stand for about 2 minutes before real pain sets in, or sit correctly upright for more than half an hour. The surgeon removed the cause, but the damage is done and likely permanent.

None of this was diabetes related, but I have to admit that that has been neglected, especially as I am now nervously waiting for bilateral cataract surgery, very soon. However, the new GP surgery is very good, with lots of specialists and Dr Evans, who does diabetes care, now, has spotted me and wants to see me in 3 months, after doubling up on my Gliclazide , for the usual MOT. He's actually let me have a new meter and kit, as I suggested it may be a good idea to test.

The point of my waffle , is that you need to take action, before it's too late and be firm if refused, as a nurse told me that you can be walked over, nowadays, unless you stand up for yourself. (Pleasant, but firm and never rude)

I'm a member from way back, but unfortunately no longer Teddy's mum, as he, the last of 4 cavaliers died 2 years ago aged 17+.I'm actually Barbara, aged 74, with no dogs.

m actually Barbara
 
Similar, but kinda unrelated, I have experienced a multitude of symptoms following a period of collapses/blackouts with symptoms of chest pain/pressure and wildly varying symptoms which seemingly pointed to heart (a totally clear series of tests) and lung issues (similarly all clear) with arthritis and some diabetic neuropathy thrown in for good measure over the last 3 years, all essentially undiagnosed despite numerous tests and consultations with specialists - even a brain scan - but all generally blamed on having been a smoker for 50 years... "you were a smoker therefore...", "you are diabetic therefore..." and even "you used to be a heavy drinker therefore...".

Then in December last year a pre existing neck injury flared up again. Subsequent scans have shown significant damage and nerve impingement in the whole of my cervical spine, but particularly at the C7/T1 junction, which is affecting amongst other things, my hands, my feet, my balance and coordination... even at times my ability to swallow... long story short I am now awaiting surgery to repair/fuse my neck.

However during discussions regarding the presentations of my nerve issues it has now been suggested that a lot of my symptoms over the last few years can potentially be explained simply by various and numerous nerves being pinched in my neck... the strange sensations, the tingling, the numbness, the pain, the uncontrolled twitching, crazy crazy itching and potentially breathing issues due to altered signals going to my diagphram... They can appear in seemingly random presentations of some or all problems anywhere and everywhere throughout my body. Generally I can only be sure that if anything affects my left hand side, particularly my left arm/hand then it is due to my neck. All other symptoms can appear anywhere throughout my body but significantly more so at the extremities of my limbs including those feelings that can be thought to be neuropathy.

I'm not saying I do or don't have neuropathy but I cannot be sure when there are days I struggle to climb the stairs or everything has a hazy aura or simply feel as if an elephant is sitting on my chest... whilst tickling my feet...

In my personal experience GP's and hospitals are good IF, and only if, you are lucky enough to find someone who not only has time but both listens and understands rather than those who simply dismisses you on the basis of some preconceived stereotype.

BTW don't ever tell a healthcare professional you have a feeling of pressure as if someone is sitting on your chest unless you fancy several hours in hospital spent trying to decide if you are having a heart attack entirely regardless of any other symptoms or evidence to the contrary . I had to purposely stop mentioning it to avoid wasting their and my time.
 
My greatest concern is that my neuropathy will get so severe that it prevents me from driving
 
Is there a catalog of peripheral neuropathy symptoms somewhere? I am really looking for an exhaustive one.
 
My neurological symptoms are mainly on the left, but some are both and the weirdest is a feeling that I am wearing thick socks (like motorbike riders have) with holes in the big toe part, so mine seem to poke through.
It's so realistic that I have actually stuck my feet out of bed, to remove the socks. However, a few weeks ago, I thought the phantom socks were at it again and decided that was not going to try to pull them off, but looked down and saw that I was wearing socks.
 
mysorian said:
Is there a catalog of peripheral neuropathy symptoms somewhere? I am really looking for an exhaustive one.
Click to expand...
I haven't found one as such. The "peripheral" bit just means outside the brain and spinal cord, apparently. However, Bilous and Donnelly (them again) say that sensorimotor neuropathy results from the dying back of nerves, beginning with the longest, which is why the feet are usually the first affected. They also give a couple of lists that they describe as "Positive Sensory Symptoms":

Non-painful:
-Thick
-Stiff
-Asleep
-Prickling
-Tingling

Painful:
-Pricling
-Tingling
-Squeezing
-Constricting
-Freezing
-Knife-like
-Hurting
-Electric shock like
-Allodynia (perception of pain from a non-noxious stimulus)
-Hyperalgesia
-Burning
-Aching
-Lancinating

This looks like a mix of (some) medical terms and words patients use to describe pain. I don't think it's particularly useful, and it underlines for me how little is actually known about some very common diabetic symptoms.
 
Am I allowed to add to this list?
 
mysorian said:
Am I allowed to add to this list?
Click to expand...
Knock yourself out. The list is from Bilous and Donnelly, not from me.

I would say (of this list) I've had prickling, tingling, burning, asleep, and lancinating. The painful ones have gone leaving behind only a mild tingle and "fuzziness". I also get a sensation that feels like I've just taken my boots off after being on my feet all day, when I haven't.
 
Hi everyone,

Wow - thanks for all your feedback. It's been a while (again), so another update and try to answer some of your questions.

I've now had my follow-up appointment with the Neurologist. Since the first one, she sent me for LOTS of blood tests for various levels/deficiencies, diseases and indicators and ran a full-spine MRI to rule anything else out. These have all come back negative.

Her conclusion is that this is post-covid, caused by the infection I had last December. It seems to be slowly getting better, so has suggested no further action is needed for now as spinal taps, immunotherapy are all quite invasive. As I seem to be heading in the right direction, she advocates taking a watch and wait approach and hopes that things will continue to resolve on their own. Things like sports have slowly been coming back into my life.

I see a lot of talk about nerve conductivity tests. I actually had these through my NHS GP early on in the whole episode. The doctor (wrongly) concluded that there was some nerve damage evident, and as I'm diabetic then this is all caused by diabetes. However, my Neurologist says that in someone with Type 1 diabetes for 40 years you would expect to see some nerve damages those results don't point to a cause. As the onset wasn't typical and correlated with my Covid infection, then the cause is post-viral rather than diabetes.

I love the NHS, but I must admit my NHS doctors haven't been great on this one. If I wasn't lucky enough to be able to seek a private Neurologist, then I would still be at home eating pills that didn't do me any good and dealing with the significant mental health impact of that. I was given medication on day 1 with no further investigation (which messed my head up quite a bit as they gave me Duloxetine, a anti-depressant with some nasty side-effects that happen to be effective for peripheral neuropathy) and basically told me to go home and come to terms with it. One even suggested I should feel lucky that this didn't happen 10 years ago, I'm not sure what type of advice that is!

Interestingly, I suspect if it had happened 10 years ago, when the NHS wasn't crumbling it would have at least been investigated better. It's such a shame that this is where years of under-investment leaves us with the NHS. I feel at different times it would have been investigate further, whereas this time I was unable to see an NHS Neurologist - I was told the waiting list is so long it wasn't worth it and they would only come to the same conclusion. And there refused to carry out an MRI.

If anything I think this shows it's worth pushing your doctors sometimes. But even then you may have to look elsewhere. 3 doctors at my GP surgery all said the same, even though diabetic nurses and a podiatrist all said it looked suspicious.

Thanks, JP619.
 
To summarize, would you say that your condition is an after-effect of your COVID-19 infection? And this has nothing to do with your blood sugar.
 
Hi Mysorian, yes, that’s what her diagnosis is.
 
I did see something like this. Now, I wonder whether mine is also related to COVID. My blood sugar is not good but not a serious Diabetes. If it were that serious, my GP would have acted.
Also, I don't know at what severity of diabetes that neuropathy would manifest.
So many unknowns!
 
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