BURNING/ELECTROCUTING/CHOPPING PAIN all the Same Time

Dear All,

I have several co-morbidities, but one of the most debilitating conditions I face is Sensory Motor Polyradiculoneuropathy. My leg(Both legs) symptoms began around August/September 2023, initially as intermittent numbness in both great toes, but they progressed rapidly. By September 2023, I developed permanent numbness in the soles of both forefeet, along with burning, electric shocks, pins and needles, and tingling pain—mainly below my knees(Shin/top feet/all toes-worse @big toes)

Since October 2024, my condition has worsened significantly, leading to severe neuropathic hyperalgesic pain(explained below), poor balance, frequent falls, and an inability to feel the soles of my feet when weight-bearing. This makes me unsteady and substantially increases my risk of falling.It gives me a feeling of standing and walking on my heels.

One of the most excruciating aspects of my condition is the intense “chopping” or “severing” pain I experience from mid-shin to my feet, particularly in my toes. It feels like someone is amputating my toes—a sudden, sharp, deep pain that is a mix of burning, electric shocks, and severe stabbing/Severing sensations. This pain usually comes after walking 30-50 steps and often intensifies suddenly in the middle of the night, with no warning. Some nights, the pain is so unbearable that I fall out of bed, drenched in sweat from the intensity. I am always in moderate to severe pain in my legs due to other multiple conditions, but it is primarily this intense pain that I am seeking advice for.

I have chronic pain from multiple conditions and have been managing pain for nearly 20 years, but this is unlike anything I have ever experienced. The unpredictability of when the pain will strike makes walking an anxiety-inducing experience. I already struggle with insomnia, and this nightly pain is making it far worse.

I have undergone several investigations, including blood tests and nerve conduction/EMG studies, leading to my diagnosis. However, my neurologist has been unable to determine the exact cause of my neuropathy. I am also on the waiting list to vascular surgery to rule out Peripheral Vascular Disease.In addition, due to this condition,I have experienced a 60% loss of hand function despite undergoing surgeries. I am already on maximum doses of multiple pain medications, but they offer little relief.I am not diabetic.

My outdoor mobility is now extremely limited—I can only go out with my wife and a walking stick, though gripping the stick is also a challenge due to my hard limitations . I have tried numerous therapies, specialist footwear, orthotics, TENS machines, and specialist bed items, but nothing seems to help. I am now enrolled in a research trial at a leading hospital and am currently on a waiting list to see the vascular surgery team.

One of my other conditions is Adrenal Insufficiency, which adds to my exhaustion and limits my energy reserves.

I wanted to reach out to ask:

1. Does anyone here suffer from Sensory Motor Polyradiculoneuropathy or similar neuropathic pain?

2. How do you manage or control this kind of severe pain?

3. Has anyone with Adrenal Insufficiency found their condition worsening neuropathic symptoms?

I would truly appreciate any insights, as this pain is completely draining me and significantly impacting my quality of life.

Thank you for taking the time to read this.

Best regards

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Comments

MW123

@noonebelieves

I’m really sorry to hear what you're going through. I can’t offer advice on Sensory Motor Polyradiculoneuropathy, as I’m not familiar with it. However, not the same as you, but I do suffer from leg, feet, and toe cramps that can come on at any time, day or night, and can be extremely painful, really affecting my mobility. The muscles also feel tight and sore hours after the cramp has passed.

I take Naftidrofuryl three times a day, it’s hard to say if they work, but maybe the cramps would be more severe if I didn’t take them. I did see a vascular consultant, and they pinpointed a blockage at the top of my left leg and were going to put in a stent. However, after the vascular consultant had a team meeting with my oncologist and heart specialist, I was told I couldn’t have the procedure because the risks were too high with my co-morbidities.

I really hope the research trial and your upcoming appointments bring you some relief, and that you're able to regain some independence.

noonebelieves

https://forum.scope.org.uk/discussion/comment/993423#Comment_993423

Dear @MW123 , Thank you so much for responding to my post and sharing your insight. I’m sorry to hear about your symptoms, the long-lasting painful cramps, and the impact they have had on you. It must have been frustrating to be unable to have the stent due to the risks involved.
As someone who also experiences these pains, I understand how difficult they are to manage through conventional means. Although I didn’t mention it in my post, I do have the same painful cramps you described. They often accompany the intense pain I mentioned earlier, causing my toes to curl—particularly on my left side. It takes a long time to break through these cramps- no matter whatever I try.
Like you, I hope my vascular appointment will shed some light on whether there is a compromise in my blood circulation. I’m also looking forward to the 'Neuropathic Pain' NIHR research trial. Given my medical history and the need to travel to the facility, they have kindly accommodated me in July 2025 , allowing all examinations to be completed in a single day rather than over multiple appointments.
Take care, and thank you again for your support.

egister

https://forum.scope.org.uk/discussion/130718/burning-electrocuting-chopping-pain-all-the-same-time

Welcome to the club! Here is my long-term experience. Neuropathic pain is generally reduced by gabapentin, pregabalin and opiates prescribed by doctors. The medicine is selected for a very long time and individually. Neurosurgical treatment is possible, but not in all cases. You did not describe your vascular pathology, but vascular diseases have very little effect on neuropathic pain.

noonebelieves

https://forum.scope.org.uk/discussion/comment/994232#Comment_994232

@egister , Thanks for your insight. Sorry to hear about your long-term Neuropsychiatric pain yet glad to hear your meds are keeping it at bay.After me being on Amitryptilline , gabapentin with no effect , I'm on the max dose (300 mgs bd) pregabalin with a 20mcg 7 day Butec patch which only takes the edge off, although it helps manage my Chronic spinal and Arm neuropathic pain better. Pain/Neuro consultants have said there's nothing more they can add from a meds perspective to manage the pain in both my legs .
I may have an overlay of vascular pathology but looks like the NHS waiting lists are so long due to limited consultants in this specialty. I also made it clear that I'm willing to travel to other areas if waiting lists are shorter. So let's see. I truly don't wish this pain on anyone. Best wishes and thanks once again for responding to my post

noonebelieves

Sorry @egister , voice dictate typo— meant to say Neuropathic pain, not Neuropsychiatric pain

Catherine21

https://forum.scope.org.uk/discussion/130718/burning-electrocuting-chopping-pain-all-the-same-time

Im so sorry that's alot to deal with I had an allergic reaction pins needles numbness for a week and I felt sorry for myself I can't imagine the pain your going through I really hope they can get some idea to relieve your pain much love

noonebelieves

https://forum.scope.org.uk/discussion/comment/994477#Comment_994477

thanks @Catherine21 for taking the time to respond to my post. I'm glad your pain subsided within a week. I'm in agony and can't even think clear . I truly hope I find some remedy to Atleast reduce the severity of the pain to offer me some functional independence at home. I shall keep this thread updated if I manage to find some relief (although not sure from where??) . Take care

JonnycJonny

Very sorry to hear about your serious discomfort.

Gabapentin or Pregabalin are normally prescribed for chronic neuropthic pain - sometimes in conjunction with a tricyclic antidepressant such as Nortriptyline. A lot of research has shown that Opioids are not usually effective for this type of pain - though everyone is different and a Google search of articles may only serve to confuse rather than help

Cutaneous dysesthesias / allodynia ( nasty burning, stinging, lancenating sensations ) can be managed with topical creams , light clothing or Lidocaine plasters for example.

I too suffer from a rare neurological condition and take a combination of the above for my chronic neuropathic discomfort.

I sympathise with your situation - it is insidious and can take a heavy toll on our mental health too.

Hope your Consultants and GP find the best care plan for you.

Best wishes.

JessieJ

I don't have the same, but I feel for you, @noonebelieves. I've had similar for 30+yrs, down my legs from spinal surgeries, there is constant pain & then burning, sharp spikes that can take your breath away, now ending up with peripheral neuropathy in my feet. It's been creeping for years & now I'm on full whack of Gabapentin but still have the odd spiking, nasty pain in my feet. The numbness means I stumble often when on my crutches, so only use them indoors now, where I have walls to fall into & keep me upright. 😆 Am on all sorts of other meds as well as the Gaba, Codeine, Amitriptyline, Duloxetine & Naproxen +. Nothing has ever helped relieve my back pain & now the back pain is going upwards which is getting to be hell. The cocktail I do take though, helps with other issues, they ease the PN, some of my hand pain, the spikes are not constant, which is a very good thing. I was ill & couldn't take any meds for nearly 2 weeks, so I found out exactly what they were working on & there is no way I'm stopping any of them again.

It really does impact the quality of life, so I hope you get called in by the trial team soon & you get huge benefit from it.

noonebelieves

Hi @JonnycJonny And @JessieJ,
I really appreciate your thoughtful response on allodynia , Spinal surgeries and neuropathic pain.I’m sorry to hear about your struggles, but it’s reassuring to know you’ve found ways to manage your symptoms, even though they still have a significant impact on your quality of life.It’s so generous of you to share your knowledge and experience, and it really helps to know we’re not alone in this.

I thought I’d add a bit more context to my own situation to add to my initial post, as my pain is complicated/masked by multiple conditions, and I sometimes feel like even the medics struggle to make sense of it all.
My spinal issues go back 20 years now with multilevel facet arthropathy, foraminal stenosis, and nerve compression, especially at L4/L5 and L5/S1. That alone causes constant leg pain, and over the years, I’ve had just about every treatment going, including epidurals, facet joint injections, nerve blocks, CBT and physio. It takes the edge off, but it’s always there.
Then there’s the meralgia paraesthetica(both thighs), which has been plaguing me for the past four years. The burning, electric shock sensations and hypersensitivity are relentless. I can’t even tolerate having things in my pockets, the weight of a duvet, or warm water on my skin. Loose, soft clothing is my only option. I get femoral nerve blocks for this through the pain clinic , which help a little, but never for long.
My knees are another nightmare with Grade 4 chondromalacia patella in both. Walking on slopes, going up and down stairs is agony. I get steroid injections via GP every few months, but it’s just a temporary fix. Surgery has been suggested, but I’m not keen given the risks and recovery time.
As if that wasn’t enough, I was diagnosed with Morton’s neuroma in both feet, with one measuring 9mm and the other around 4 to 5mm. The burning, stabbing pain when I stand or walk was unbearable, though the first round of steroid injections has given me a bit of relief. Surgery has been mentioned, but after everything I’ve been through, I’m hesitant.
But the worst thing, beyond all of this, is the progressive numbness and neuropathic pain in my lower thigh to feet(as described in my initial post). It started about two years ago, and now nearly two-thirds of both soles of feet are numb. At the same time, I’m experiencing this indescribable pain, deep, searing, electric and throbbing, like my nerves are being severed over and over again. It’s terrifying, because it’s not just one cause. My neurologist has diagnosed sensory motor polyradiculoneuropathy, but no one knows exactly what’s behind it. There’s a suspicion it could be an autoimmune reaction, maybe triggered by Covid in 2020 or the adrenal crisis I had in 2022, which left me in hospital back-to-back. I’ve had multiple nerve conduction and EMG tests, which show severe damage. My sural nerve is completely unresponsive, and my peroneal nerves are barely functioning.
Now, just when I thought things couldn’t get worse, my GP has picked up that the pulses in my feet are really weak. They think I might have peripheral artery disease(PAD) on top of everything else and that the pains I describe are a “claudication” kind of pain on top of neuropathic pain , which could explain why none of the usual neuropathic pain treatments are working. There’s also the possibility of an autoimmune vasculitis(as per my GP & Neurologist )affecting my blood vessels. I’m now waiting to see a vascular surgeon, but like everything in the NHS at the moment, the waiting list is long, even though my GP and neurologist have both tried to expedite it.
I do everything I can to manage the symptoms. I use Epaderm emollient daily, max-strength Voltarol gel, and stick to soft, loose clothing. I have custom insoles, and because my foot drop keeps causing me to trip, I’ve been given a carbon fibre Ossur ankle-foot orthotic(AFO) from podiatrist . Even with that, my balance is terrible, and after several falls and near-misses, I’ve reluctantly started using a stick, but only can manage for short distances. Even gripping the stick is a struggle because of my hand issues(as below)
On top of everything else, my hands are permanently damaged from bilateral ulnar neuropathy(Since Feb 2022). I was stuck on the NHS waiting list for so long that by the time I had surgery, the damage was irreversible. I have very poor dexterity now, and even basic tasks are exhausting. I use an awkward, altered grip for everything, but it’s painful and causes my fingers to claw up. I’ve even lost my stick before because I just couldn’t hold onto it. My physio has suggested a four-wheeled rollator, but mentally, I’m still struggling to accept that.
In terms of medication, I’ve tried amitriptyline and duloxetine, but they didn’t work for me. I’ve never tried nortriptyline, so I’ll bring it up at my next appointment. I’m on pregabalin at the highest dose of 300mg twice a day, and I also use a 20mcg Butrans patch, which helps with my spinal pain. I know opioids aren’t ideal for neuropathic pain, and I’ve had many discussions with doctors about reducing them. But honestly, I’ve already fought so hard to come off stronger opioids. I was once on a cocktail of morphine, codeine, oxycodone, tramadol, fentanyl and even methadone. I had a hellish withdrawal and spent two weeks in hospital for a supervised detox. Compared to that, the Butrans patch is the least of my worries, so I’ve been reluctant to stop it.
As Jonny pointed,This whole situation has taken a huge toll on my mental health. I used to be able to push through the pain, work, stay active as much as possible, pace myself and keep a positive outlook. But since the neuropathy & the intense pain took hold, I feel like I’ve lost so much. My confidence has plummeted. I have to prioritise safety over pride, and every time I use my stick, I feel like I’m giving in a little more. The fatigue, brain fog, vision issues and increasing dependency on others for daily tasks are exhausting. And financially, the stress of accessing benefits and work-related issues only makes things harder.
There have been times when this all feels too much. The constant pain, the uncertainty, the feeling that no one really knows what’s happening to me. I’ve had some dark moments. But my family and my Christian faith keep me going. I have a supportive church pastor who is also a trained counsellor and, to be frank, a shining light in my life-the reason I’m here today.
I know this is a long post, but I wanted to share everything in the hope that someone out there might relate. Maybe someone has been through a similar journey and has some advice. The kindness I’ve found on this forum means so much, especially after facing judgement and discrimination elsewhere, even from people with long-term conditions themselves. So thank you for listening, and if anyone has any thoughts or experiences to share, I’d really appreciate it.
Thanks for everyone who have taken the time to respond. I’m ever so grateful 🙏🏽

JonnycJonny

You're welcome. Sharing our own personal journeys with poor health can be therapeutic in itself.

Take good care.

noonebelieves

https://forum.scope.org.uk/discussion/comment/1012279#Comment_1012279

That’s very true @JonnycJonny . I’ve noticed that since being on the scope forum. I joined this January. Thanks for your support 🙏🏽

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