Hello

[Kersey48]

I have joined because I find talking to other people with my condition (Peripheral Neuropathy) has been more helpful than anything I have received from professionals, in fact most professionals that I have seen know very little that is of help. It helps just to know that I am not alone in what I am experiencing.

[Philip]

Wellcome to OUR nut house , you don’t have to be nutty but it helps if you are.

Philip

[Hidden]

Hello I'm tony type 1 diabetic. my neuropathy started in January, like yourself when I mentioned it to my doctors and they didn't really offer me any thing . The one thing that as helped me was cutting out drinking white wine. while my feet hurt the pain in the legs are not as bad and I can manage my walks again now. I no its not much advice but it has helped me with the pain relief .Tony.

[ssdw1958]

You are so true in that these are good people to talk with.

Your cat is beautiful.

HAPPY THANKSGIVING 🍽🍁🦃 DAY !!!

[Jan101]

Hi sweetie welcome to our lovely forum. I am sure there will be others along shortly to welcome you to and able to help you. Take good care of yourself sweetie. 🤗🤗🤗🌹🌹🌹xxx

[Nickidc]

Hi Kersey,

I completely agree with you. I think I have peripheral neuropathy too, but haven't had a formal diagnosis, would love to chat more about the condition with you..

thank you Nicki

[Kersey48 in reply to Nickidc]

I ended up paying for a private diagnosis visit to a neurologist as the waiting list on the NHS was ridiculous (cost £200) - worth it to get a diagnosis. Since then I have been seen by a consultant neurologist on the NHS but she didnt offer me any other medication than my gP put me on. My GP seems to think that Amitriptyline is the only medication for me, but this only helps me get to sleep and does not tackle the real pain. What makes you think you have it? I recognised my symptoms from knowing others with the condition when I worked as a social worker in a hospital setting.

[Nickidc in reply to Kersey48]

Thanks for your message - I have done the full round of specialists and paid privately to see many professionals. it was sort of a process of elimination. I have been to many sports doctors, pain clinic specialists, foot and ankle specialists and all the usual, Physio, osteo, Chiropractor etc.

Like you I am on Amitriptyline, I take 25mg, at night time. I really don't like any form of tablet so reluctant to increase the dose. How much do you take?

My condition started with a sprinting session on the running track, and I have had it for 8 years now. Still not completely given up hope of finding a solution.

I am a health professional myself and although I understand it is frustrating when doctors don't have all the answers I do think we have to work together with them, chronic pain is a very complex problem.

Does anything else help you?

best wishes,

Nicki

[Kersey48 in reply to Nickidc]

Hi Nickidc, i take 25mg amitriptyline at night too, seems to help but I get some weird sensations - thought my cat was walking over my legs but when I put the torch on to see there was nothing there. I have stayed away from the other pain meds as far as possible but am thinking of asking to try Tramadol just for short term pain relief when I get severe electric shock like pain as this is so very painful and usually lasts for at least 48 hours. My mobility is really crap these days as I get very dizzy and have no idea where my feet are . Hyper sensitivity in my feet is bad at night but I have found wearing socks to bed helps with this. Isnt it weird that I cant feel my feet but I cant bear the bedclothes on them?? I do agree we have to work with the doctors and also understand that they sometimes just dont know but I would like to feel more confident that some people out there are actually trying to find out!!! I do wish that some doctors too would not treat me like I was daft or did not know anything - I have enough health knowledge and also have done enough research to follow most information (I do have a high IQ) and understand what they are talking about. I found the pain management course very helpful and have also come across a book and cd on Amazon Chronic Pain. The Pain Management Plan: How People Living with Pain Found a Better Life: The Things That Helped Them and the Things That Set Them Back

Lewin, Robert

I have found this helpful. I also practice Mindfulness and found this helpful too.

good luck

Mary

[Nickidc in reply to Kersey48]

thank you for your reply, I am sorry to hear that you have such a horrible time with pain.

Would you mind sharing what caused your pain problem in the first place?

It is helpful to meet a fellow sufferer as I have found on this site there are so many variations on pain issues, and duration. Like you mention sometimes the most helpful advise comes from those that have something similar

best wishes,

Nicki

[Kersey48 in reply to Nickidc]

Mine is called Idiopathic - they have no idea what caused it and therefore (lol) have no idea how to treat it. sigh.

[Joynjoy]

Welcome. Love the cat! Your work? Beautiful 👏

[Firepool]

I have had neuropathic pain in my lower half for over 10 years as a result of spinal nerve damage. I have had to deal with cynical attitudes from doctors, even (in one case) denial face to face. The NHS hospitals in Gloucestershire have an extensive (and mostly understandable) section of their website on types of pain, their causes and treatment.

[Kersey48 in reply to Firepool]

I had a good look at that site and they do have a lot of information. I printed off some stuff to talk to my doctor with. Maybe he will take me more seriously!!

[Firepool in reply to Kersey48]

Didn't work with my local hospital even though the Glos hospitals are qualified to train prospective pain consultants, though there may a protocol that "Junior" Drs are not allowed to comment on matters reserved for consultants. My GP is generally very supportive and eventually agreed to refer me to a teaching hospital 40 miles away which was a good move because there they do listen and answer questions. Best wishes!

[Cb1963]

Hi kersey 48,yep pain clinics, and getting the results from the "specialist" can really leave you in the dark as to what to expect, it's not a roller coaster, it's more like a horror story, and the symptoms are absolutely terrible, there's that many reasons why folk end up with PA and it's pretty grim having the constant pain, pins and needles, numbness, and any other way you would like to describe your symptoms, the list is endless, so knuckle down for the long haul on this one, it may take many months to get some relief, however I'm over five years into this condition and no light at the end of the tunnel, and to make matters worse I'm now having to have vitamin B12 injections, so I'm hoping that my symptoms don't go any worse than before, or whether me not understanding how my body has been treated, many years of stomach issues and to many general anaesthetics are also thrown into my causes and constant acne and I'm a male in my mid fifties!!!, I thought the teenager years had passed by, so yep a great bunch of folk on here and plenty of advice in the offering, and sometimes a great bit of banter, so good luck and hopefully your suffering isn't too bad, thanks

[ssdw1958]

I know I hate the pain and know one really knows what it’s all about. So at times it’s just not worth telling anyone. Boy I must be in one of those moods. Bye for now.

[Kersey48 in reply to ssdw1958]

sympathy, I get spells like that too.

[Hidden]

hi i suffer with fibro & osteo...i often wonder if i hav yur ailment too... hope to speak lots x take care j