BURNING/ELECTROCUTING/CHOPPING PAIN all the Same Time

noonebelieves

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

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