Peripheral neuropathy

[foxglove]

I have peripheral neuropathy in my legs and feet, the last few days, pain in my left foot has been severe enough to keep me awake at nights, I also have OAB which affects sleep...feel I've had no rest for a bit. Can anyone advice? Doc doesn't seem able to help, I've reach the end of my tether!!!

[Blackknight1989]

I have PN severe stage 5 but mine is Idiopathic (no known cause) from mid thigh to bottom of feet bilaterally most likely caused by 27 years of living with stage 4 CKD and average about 3 hours sleep nightly. Of the 3 hours only 2 are continuous and the last is over about a 2 hour period of tossing and turning hoping ng for a different outcome! It would help to know the cause of your PN if you know. Several different types cause by significantly different reasons like intense chemotherapy to the most common cause of diabetes. It would be a great help to know a little more info like the cause, any other issues that are a major affect on health or comorbities. Plus age, how long you’ve had PN and any other nerve issues. I’m not prying only trying to help. If you choose not to elaborate (understandable especially on the interwebs…lol!) that’s okay too. My best to your best health and a journey of less pain from your PN!

[foxglove in reply to Blackknight1989]

No cause known for my neuropathy, I take pregabalin for pain and though it doesn't really help it sort of takes my awareness away...really weird drug, I also have codeine on script and I think that is better for pain but between all the meds I take I feel like a zombie Hope you get relief from your PN somehow!

[Hidden]

In 2017, I was diagnosed with GPA Vasculitis. Not only did it give me end stage kidney disease, it gave me the worst case of neuropathy in my feet and legs. In my case, it's my right foot that got the worst of it. The arch on that foot hurt so bad that I went to a foot doctor and got steroid shots with both of us thinking it was plantar fasciitis. That didn't help. If I pressed my foot hard against something, like the floor, it made the pain subside. It kept me up at night so I got a short piece of 4x4 wood, wrapped a towel around it, and put it up against the headboard. I would lay upside down in bed and press my foot against the wrapped wood to kill the pain so I could get some sleep. Early on, my feet were so sensitive to touch that neither myself or anyone else could touch them without me shrieking. Even the sheets in bed were very uncomfortable. The sensitivity to touch has gotten much better over the years and now it it's just terrible pain, pain, pain. It feels like someone dropped a concrete block on my feet. I've been seeing a pain doctor for several years and have been taking Hydrocodone for back pain. It helps slightly with the foot pain but not as much as I would like it to. Because of my CKD, my nephrologist told me I could take Gabapentin but limit it to 300 mg a day which is not much. It didn't seem to do much and it made me feel weird mentally. I have bought so many pairs of slippers and shoes over the past 6 years trying to find something that doesn't bother and hurt my feet that I could open a shoe store. The neuropathy seems to be creeping slowly up my legs. Between the work I've had done on the nerves in my back and the nerve damage in my feet, it's becoming harder for me to spend much time walking or being on my feet. The Vasculitis I have causes granulomas or blockages in the tiny to medium blood vessels. This is what caused the kidney damage but also prevented the flow of blood to nerves and damaged them as well. Thanks for letting me share my story and I hope you got something from it. Take care!

[foxglove in reply to Hidden]

Thanks for story I get a bit of relief by hanging my foot outside the covers wish the docs could come up with a solution, I take pregabalin which sort of works by distracting me from the pain also codeine which works directly ...though addictive I don't care - any port in a storm so to speak

[Catr12 in reply to foxglove]

I have same problem in left leg but I have arthritis on top of that. Neurologist and my own doctor suggested amitriptyline. Could be a touch of nerve pain.

[Necron01 in reply to foxglove]

I also take Pregabalin and codeine along with naproxen ,the preg is the only thing that gives me some relief,I was on OxyContin for a couple of years which also help but my Gp took me off of these as he said they shorten your life he is now trying to take me off of the preg but I will not come off them altogether as I have chronic pain also

[Staffsgirl]

Hi foxglove,

I see you are hypothyroid. It is possible that your thyroid condition is linked to the PN. I suspect my PN, which started in my late 50s, 15 years ago, is linked to my own hypothyroidism.

.

It’s very debilitating and can cause much loss of sleep. I take magnesium orally, and apply magnesium oil to my legs at night before bed. Although it doesn’t stop the symptoms, I firmly believe it helps take the edge off some of the awful pain. I find my legs can go into spasm and I can be unable to move them for half an hour at a time.

I’m sorry I can’t be of more help: as you say, the doctors don’t have an answer.

[Irisheyes60 in reply to Staffsgirl]

Hi 👋 Staffsgirl thank you so much for your post. I only came on the site today so I could possibly get some information or help on PN I have not been diagnosed as yet but I'm suspecting that's what I'm suffering with its been going on a long time pain, very hot feeling in feet legs hands I tried to cope with it by taking my tramadol im on for arthritis pain and cocodamole but now the pain burning feeling is getting really bad. After seeing you mentioned hypothyroidism which I have could cause PN. I will go to see my GP and hopefully they can advise me what medication etc I can use before this gets any worse it's horrible kept me awake all last night. Thank God for this amazing forum and community support for many problems 🙏 ❤️ Take care God bless you all hopefully you get the ease from the pain and restlessness. 🤗💗

[greekqueen]

Have you ever been on Gabapentin for nerve pain. I have been on the full dose for several years, 12 a day, and find it helps a lot 😊😊🤔

Lila

[L3hipguy in reply to greekqueen]

Hi - I also take Gabapentin- 3000/10 a day. Not sure if it helps but does distract me. Do you spread your 12 across the day?

[greekqueen in reply to L3hipguy]

Yes 3 tablets 4 times a day😊

[Staffsgirl in reply to greekqueen]

Do you have side effects? I was offered it many years ago but am fearful of side effects.

[greekqueen in reply to Staffsgirl]

No, none whatsoever😁

[Macblank]

Hello my dear.

Yes I am a man, but my Mrs has bladder issues, and will sometimes wear an adult pull up, especially on days when she might have a cough or coughing lots (she had throat cancer op etc and gets coughing fits n days due to it). So while they're not the most glamorous, I suggest you start wearing one for bed. That way hopefully you'll get a reasonable sleep.

Sleep is soo important to getting through the day.

As for peripheral neuropathy, I know what you mean. Those cramps and sharp sudden pains are a real bummer.

Might be worth asking your Dr to send you to the team at the hospital.

In the mean time, have you tried support stockings? ... sometimes called, flight socks. ... you can pick them up in most pharmacies. Measure round your calf in the morning to get your size.

Hope this helps.

[Defenders]

Hi, I’m in the UK too. I have peripheral neuropathy in my legs and feet! Mine is due to being prescribed Ciprofloxacin. Have you ever had this antibiotic or another antibiotic in this family of drugs - Oxifloxacin? I mention it to everyone who has these symptoms just in case.

[Defenders in reply to Defenders]

I do hope you are ok today. Have you had any joy finding out what has caused your peripheral neuropathy? xx