Peripheral Neuropathy - does anyone else here suffer with highly variable symptoms?

[PositivelyGlowing]

I'll start by saying that I've seen the doctor, assorted tests reveal that I'm not diabetic, B12 is fine as is HbA1c levels, etc.

I'm due to see a neurologist next week (going privately, NHS waiting lists are horrendous).

It should be noted that I had something similar to this about 7 years ago which went away after a month or two, also another 'flare up' about 5 years ago which lasted for a few weeks. This time though the symptoms seem to be more noticeable (or maybe I'm just paying more attention to them).

I should stress that the following symptoms are all highly variable - I can have spells lasting a day or multiple days where the symptoms are very slight, but also days where they are far more noticeable.

This latest episode started in mid April - first noticed increased sensitivity in fingers, particularly fingertips. That progressed to variable slight numbness and tingling/pins and needles (the latter are always very brief), also my feet are slightly affected - slight tingling at times, sometimes the soles of the feet and underside of toes more sensitive to different textures, but hard to describe. Sometimes forearms and lower legs can very briefly feel cold or slightly tingly. Fingertips can be slightly painful and feel 'bruised', even under the nails. Fingertips can also feel warm or a bit cold. They look fine though, no discolouration.

This all varies a lot throughout the day, eases quite a lot at night (but not completely), soon after getting up symptoms can be more pronounced once more but this varies too !

Sometimes physical work improves the symptoms, but that varies as well.

For example, yesterday the finger issues were aggravating in the morning, both my middle fingertips felt a bit sore in the afternoon when working but all symptoms eased off quite a bit in the evening.

Saw a physio who thinks it's my blood circulation but I'm not convinced, in fact my own suspicion is that it's something to do with my back (for years I've very intermittently suffered with lower to mid back pain (due to pulled muscles?) and I had such an episode before this peripheral neuropathy flared up again). If it's back-related that would explain why symptoms ease at night when lying down, but doesn't explain why the daytime issues are so variable when I'm sitting or standing. Another suspicion of mine is that it's my diet.

I do have Osteopenia (bone density a bit lower than it should be as revealed in a bone density scan a few months ago, so not as bad as Osteoporosis but not as good as it should be - now taking extra Calcium and Vitamin D to see if that helps, then I'll have another scan in the next year or so). I have a poor diet due to suffering with IBS for over 20 years, but with the help of nutrient drinks, eating nutritious food when I can as well as vitamin and mineral supplements I try and maintain my required nutrient levels).

Does anyone else here suffer with the above levels and very high variability of symptoms?

Mine's migraine related. 20mg amitriptyline nightly keeps it at bay the majority of the time but it flares if I overdo it. Stress can trigger it too.
It's only ever on one side for me. The first time it happened I was sent for an urgent CT because they thought it could be a stroke. Then it was maybe MS, but finally neurologist said migraine.

Interesting, thanks for the reply, I'm pleased that you have a way to control it.

Is the migraine a side effect of the peripheral neuropathy in your case or is it caused by some biological or physical mechanism?

I don't suffer from migraines as such (my father used to) but as of a few years ago I started to get an occasional 'ocular migraine' (also known as a 'retinal migraine') which affects my left eye. No pain or other migraine symptoms but I get a strange rainbow pattern in part of the vision of my left eye - it's not painful, there's no headache and it lasts about 20 minutes. I have this once every year or two.

Speaking of Amitriptyline, I was offered this but declined due to the possible side effects, most specifically the potential for urinary retention (had that once years ago after an operation and don't want to risk getting it again, it was very unpleasant and can't quickly be alleviated once it starts due to Amitriptyline or similar).

Oh my gosh I could have written this post!!!!!

I have been through SO much testing this last year because of pretty much the same symptoms as you, it’s so hard to describe, but basically patchy tingling and strange feelings. Mainly in my feet but can be annywhere. All tests and scans annd everything came back normal. My doctor mentioned small fiber neuropathy, have you heard of this? Only way to get diagnosed is a skin biopsy, so im
also going to see a private neurologist next. Have you had nerve conduction tests already??

Yes I have peripheral neuropathy.

mine is considerably worse than yours but is focused on my lower limbs.

mine is also quite variable.

I have neuropathy caused by cancer treatment last year.(breast cancer.)
My fingers and feet are very tingly and clumsy.
It feels like I'm walking on fizzing sponges.
I also get very painful cramp in my toes and soles of my feet and cramp in my fingers.
I have tried acupuncture and amitryptiline but it didn't help.
Currently trying gabapatin but no success yet.
Really hope it gets better!

Ps. In terms of medication, I’m taking a low dose of pregabalin and it’s helping.

Yep started wondering this too.

Cold fingers over past 6 months. Put it all down to under active thyroid but now I’m now seriously wondering.

Parents ‘mini doctors’ turn up left foot bright red toes but then seems to settle within an hour.

Been through the whole jazz hands hospital do you feel diabetic..promised me faithfully before non-negotiable surgery they’d run HbA1C after Dad guffing off I’d always been misdiagnosed, err not the case but as heck did they run a simple test buffered off to the useless GP. Did not know diabetes was so holistic.

How can one leave a British hospital with no actual answers.

Sorry to hear that you are enduring this too, it's really annoying at times.

I have a hunch that all of my tests will be okay too, not yet had nerve conduction tests.

Also not heard of small fiber neuropathy but will look into that.

Thanks to you (and everyone else) for your replies.

Thanks, any side effects with the pregabalin ?

@PositivelyGlowingabsolutely nothing. Other than maybe feeling slightly happier. It’s been great!

Great to hear that, thanks!

Similar issues here.
I have quite severe low back pain (from a combo of issues... work, arthritis and likely disc compression) I have horrible and variable symptoms.. all left sided. Burning skin (nothing visible) a feeling of crawling in my muscles, tiny cramps down to my toes and now myoclonic jerks that can continue for hours at night.
I'm on gabapentin, seeing the neuro next month and have been told that they will probably put me on Clobazam to comtrol the myoclonus.
It's all so weird!

I have post herpetic neuropathy down my left leg which is currently in week 4 of a flare up. It moves around from my bum cheek down to my foot and feels like sunburn mixed with pins and needles.

it’s driving me insane!

My son has neuropathy in his feet due to a stint in intensive care which included an induced coma and then cancer treatment in which one of the drugs made his neuropathy worse.

He takes gabapentin 3 times a day and has lidocaine patches on his feet for 12 hours overnight which have really helped. His left foot is pretty much back to normal now and his right foot is much improved, though he still can't wiggle his toes and there's still moments of numbness and pins and needles.

When it was at its worse, you couldn't touch his feet lightly without him screaming. He's also had desensitisation therapy from OT which has helped a lot too.

Ask for an MRI of your brain and spine.

i had very similar symptoms to you. My MEI showed my spine is degenerating and impinging nerves. I was worried about MS for a while which is why I suggested getting your brain checked with MRI too.

with the NHS I can’t get anyone to help me everyone just refers me into a different department. Initially once the degerative spine was diagnosed I was just told that’s what it is and left to it. My symptoms have progressed since then and I’ve lost control of my bladder. My numbness and tingling progressed so now I fall amd can’t open jars and drop things. I keep asking for referrals and nuro basically say yeah your spine is bad but we can’t help as that’s musculoskeletal and they say it’s my nervosité refer me back! Only refferal that hasn’t discharged me is urology as I can’t empty my bladder now so face a lifetime of self catheterisation.

I have had to work out how to help myself. Maybe none of this will be relevant to you but if we have the same thing then I will say sitting makes me worse so I literally never sit down unless I have to drive etc. Walking really helps. When I stand still I have to concentrate on standing ramrod straight. I have purchased a pillow to keep my neck straight at night and one for between my legs to keep my lower spine straight. Google physio exercises and get a refferal for that if you can. And focus on your posture. These changes have helped me slightly but mainly I’ve not deteriorated further since making the changes.

Yes I do and have done for several years, ever since menopause. Over the last year it has become much more severe in my legs and my hands have started to be a problem.

I have had numerous tests / scans with no real answers. Nerve Conduction tests confirmed an issue, brain and spine scans ruled out MS (although I understand it is not always diagnosed following a single scan) and the only diagnosis I have had is that it might be due to Sjorgrens Syndrome.

There were incidental findings of Hemangiomas on my spine, which is interesting. I had scans in 2000 (query MS) and no mention was made of them then. However those scans have been lost so no comparisons can now be undertaken.

I do have Osteoporosis, which is particularly bad in my lower spine and also experience Migraine. I have also had two heart attacks caused by Vasospasm.

Over the last 9 months I have developed really severe Sjorgrens symptoms in my mouth, eyes, gut etc. . My mucous membranes seem to have packed up and disappeared, so perhaps the Neuropathy is linked.

I do feel for you and hope you can get some answers for your symptoms.