I have had peripheral neuropathy for about 9 yrs shortly after I was diagnosed with polymyalgia. It has progressively become worse to the point now of me hardly getting any sleep because my feet burn so much I have to put them in cold water several times a night and even during the day to get some short lived relief. I tried amitriptyline which made me very drowsy the following day. My doctor said the las resort would be gabapentin because there are bad side effects. I also have started sweating as well. I would appreciate any comments from people going through the same thing. I have a compressed spine so maybe a nerve is trapped.
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I have similar to you , spinal stenosis , ddd& had a fusion, decompression & laminectomy 10 years ago. My feet & legs burn , started just in my left then progressed to my right, also heavy sweating . Gabapentin made me seriously ill as did Pregabalin so I take amytryptiline & yes it does make you drowsy next day unless yo take it early enough. I usually take mine about 7 & go to bed between 11 & 11.30 . I'm still in horrendous pain though the burning has lessened xx
Thank you so much for taking the time to reply so quickly. It helps me understand what is going on and I will certainly now try amitriptyline but take it earlier. I obviously have spinal stenosis and when I had a scan there was narrowing in my lower spine affecting the left L4 nerve. It appears that like you there does not seem an answer to it and the future does not look good as it seems to be progressive. I am thinking of trying acupuncture as it may help so have booked some for January I have also been referred to physio but do not think there will be much they can do. Thank you again. x
There is a procedure called RFA (Radio Frequency Ablation). I have had it done twice on my lower back by a pain management doctor who is actually a trained anesthesiologist. Her approach is to deaden the nerves that are causing the pain. It's an electrical procedure and the machine that's used has two leads. One is a pad that is adhered to the back of your calf and the other lead is a needle like probe. You are given a numbing shot in the areas where the probe is to be inserted. The probe is then inserted against the nerve that is causing the pain and a series of electrical pulses are sent. This shuts down the nerve and is supposed to last about 9 months and I have had that length of relief. My first time was for the nerves coming out between L4-L5 and the second time was for L4-L3. These procedures took care of sciatica pain and general pain around my lower spine. I have severe neuropathy in both feet to the point that they are not only numb but they are very painful. The RFAs that I had done did nothing for the neuropathy. When I asked her about my feet, she said there is another procedure where she surgically implants a small device in your lower back and it has wires that are attached to other nerves that go down to the feet and this device sends signals to those nerves to cancel out the neuropathy pain. I have chosen to forgo the drugs, devices, and all the side effects and just deal with the pain. I've had it for around 6 years and have purchased probably close to two dozen pairs of slippers and shoes trying to find something comfortable but to no avail.
Thank you so much for the interesting reply which I had never heard of. I will do some research into it locally to see if it is appropriate for my problems. Best wishes.
Hi, I just wondered what side effects you had with gabapentin as you said it made you seriously ill? What dosage were you on? Just I’ve been prescribed it for nerve pain and worried about side effects many thanks
I’ve had Idiopathic Peripheral Neuropathy since 2020. Started specifically in my feet and ankles, now from about mid-thigh down. Mine is due to CKD stage 4 (eGFR average last 5 years of say 20) but after my 6/7 month hospital stay in ‘96 eGFR has never been higher than about 26/27. I was 29 when it happened now I am 56 (57 on 1 February) and hopefully if I can get out of BFE Arkansas and into FL where we plan to move in the 1 quarter of ‘24, I can find a nephrologist who knows of the new benefits of the SGLT2s and their potential stabilization of function…if so thE expected age of 65 is probably doable…
now for the bad news for the OP…with the onset of the PN to go along with the poly-osteoarthritis (22 surgeries from ‘98-‘14 with the last 4 being bilateral total knees, bilateral total hips and bilateral ankle arthrodesis or about 01/2020 I have averaged only 2/3 hours of sleep nightly. Don’t know what it is about the PN but it seems to rob you of your sleep…I am prescribed gabapentin but only take it when the PN is flaring as mine seems to fluctuate in severity from day to day. If I take the gabapentin especially in the evening I MAY get 4 hours but never more than that…I’ve never been one to be able to wake up at say 5:00 AM and go back to sleep…it is what it is but it no longer seems to bother me…hope that’s not the case with you…best of luck in your journey with PN!
Thank you so much for replying. I am so sorry to hear of all of your health problems I feel grateful that I do not have to cope with so many severe problems. I only have about 3 hours sleep and in the past I could wake up soak my feet in cold water and go back to sleep but that does not happen now. I used to sleep in the afternoon for an hour but now am unable to as I get really sweaty and feel burning like in the night. I admire your attitude that it is what it is and I will try to be more accepting of what I have and enjoy the positives in life however restrictive. Good wishes to you. x
Thank you for replying. I stopped taking it as I felt drowsy the next day but but I am going to try it again and take it earlier. Trial and error seems the way forward. I took it about 8.pm. Best wishes.x
if it’s of any help re; pain relief, I take 70mg Amitriptyline / at 6 p.m each evening (otherwise I’d not function in the morning 😵💫 plus, Dihydrocodeine together with 2 Paracetamol every four hours - from 8.30am (so, 12.30 pm, 4.30 pm and 8.30pm). These do take the edge off a little. However? it’s difficult for doctors to find meds that don’t further compromise my CKD - or interfere with the numerous other medications I need to take so, at the moment, it looks like I’m stuck with the Amitriptyline plus the Dihydrocodeine and paracetamol cocktails.
Thank you very much I will read through them. It is not so much pain but burning feet which means I have to put them in cold water frequently at night and now even during the day. I also get night sweats.
Hello, I’m in the UK. Have you ever been prescribed ciprofloxacin, or another fluoroquinolone antibiotic? I have acute peripheral neuropathy, Axonal sensory neuropathy, tinnitus and dizziness, all caused by Cipro. It was prescribed for sinusitis almost 9 years ago. I woke up in the middle of the night, on the 4th day of a five day course with burning and tingling in my lower legs and feet. The only thing different in my life was Cipro. It damaged my Central Nervous System. Unfortunately there is no treatment or cure, I was diagnosed with PN caused by Cipro.
Hello thank you for replying. No I have never had to take those antibiotics. Mine appears to be caused by a compressed spine affecting the nerves controlling sensation and body temperature . I truly sympathise with you it is a life changing condition which affects quality of life. I wish you all the best. x
I wish you all the best too. It is terrible. I put my feet in cold water frequently. I find Biofreez Gel also helps for a while. My feet feel like lead weights when I have to wear shoes/ankle boots to go out. I can’t walk far but still drive short distances. Take care xx
I am so sorry you are going through this dreadful unrelenting pain. I am the same up and down all night putting my feet in cold water to try and stop the burning. I can hardly walk with the pain and no painkiller seems to work. I also have severe back problems. I have now had an angiogram combined with an mri and it seems I have now have end stage neuropathy which is called critical limb ischemia which is life threatening. Along with af and fibromyalgia keep pestering your doctor and get an appointment with a vascular surgeon who can see whats going on. Please dont leave it like me .i now have been told there is no cure but they are going to try and widen and unblock my arteries to help with the pain. Good luck you have my sympathy as I know how painful it is. I am used to pain,take Tramadol everyday for my back but this foot pain is nerve pain and nothing touches it.
I have peripheral neuropathy and am on Gabapentin.I seem lucky as I've never had side effects however my carer has neuropathy too. Much worse. He tried Gabapentin and had bad experiences from it and stopped it immediately.
This isn't helpful in sorry but the choice is yours to make. I think your Doctor was hasty in not letting you try it.
I wish you well and hope you get some sleep hugs sweetie Fluffyhuffer x
Thank you very much for your reply it was very helpful. I will be seeing a new doctor week after next and will be able to discuss it with your reply in mind. x
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