Dealing with chronic pain
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Peripheral neuropathy

JopecoJopeco Member Posts: 5 Connected
Hi my names John it is the first time on this site and I would like to discuss chronic pain I have had PN for several years now and has become very painful the medication that I am on is pregabalin which is 600mg Co codamol of and duloxetine 120mgs I take these meds and they don't help the pain. The PN (peripheral neuropathy)  has damaged my nerves that much my toes feel someone has a hammer them I have arthritis in my toe joints my legs are painful when I walk one of my legs are weak when I am walking along the pavement and if it's uneven my leg will buckle and I almost fall the PN has lso affected my hands arms tendinitis in both arms which I find it very difficult to open bottles jars and also packets my finger tips are numb and can also be difficult to type on touch screens as I can't really feel the screen my finger tips and toes are always cold, my feet feels if I am walking bare foot on ice and it's a cold burning feelings and I still have a full-time job 


  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Jopeco, and welcome to the community!

    I'm so sorry to hear you're living with pain, and I hope at the very least this site helps you to feel that you're not alone. You might like to chat with @Gordon54 and @shel5678 who have mentioned peripheral neuropathy in the past. I hope today is as comfortable as possible for you.
  • JopecoJopeco Member Posts: 5 Connected
    Thank you pippascope. For your advice yes I am in alot of pain 24/7 and still working as a supportworker for people who have learning differculties. I felt helpless when could not open a bottle of coke for my client and had to ask him to open it because of my tenderitis in both arms im afraid I will loose my job as I feel I am getting weak as the PN is now attacting my muscles and will eventually disabled myself thanks again pippascope for your advice 
  • Gordon54Gordon54 Member Posts: 11 Connected
    Sorry to hear that you are another member of the PN Family, I say that jokingly as we have to smile and occasionally laugh at “ourselves” to keep our sanity. You don’t mention your medications as they play a important part of a sufferers day. I am on Pregabalin Morphine Codeine Paracetamol and 16 other tablets as I have 3 Aneurysms in the OM1 part of my Heart. The won’t do a triple bypass because I had a Mini Stroke TIA 11 yrs ago and I also have VT (Ventricular Tachycardia) and the Surgeons day I don’t have much chance of getting through the operation. So as you can see there is a need for us to keep smiling as we are not really in control of our own destiny. 
    Myself I believe that the one main “Downer” with PN is finding a GP that knows the latest news on PN. 
    I have had Ambulance’s out for my Heart and when we’re traveling to the Hospital they ask about your Med History and when you say “PN” many look at you and ask what it is. My own GP is in his mid 30’s and really makes the effort to listen and takes loads of notes. I kept asking about “What can I expect next” and it’s not much encouragement when you get “Shrugged Shoulders” as a response. I am in my mid 60’s and been type two diabetic for 14yrs, when I visit the Clinics relating to PN they usually say it’s getting worse because of bad diabetic management, then I show them the diabetes clinic reports and they are always saying that my management is excellent and each month in the previous 12 tests are showing a really good downward trend. At that point they bury their heads into the papers in front of them. The best thing that happened to me was being referred to the “Pain Management Team” at my Local Hospital. They looked diligently at all my meds and removed some and added others. 
    Within a month of going to the clinic I was waking up and feeling like I wanna do something today and I was given a better outlook on life. 
    They don’t and can’t cure you as PN is for life, but with the right medication mixed with the occasional smile and dare I say the occasional laugh things don’t seem so bad. Make sure you get the right medications and if your not with the Pain Team ask your GP if he/she can refer you to them. Good Luck and keep smiling xxx
  • shel5678shel5678 Member Posts: 7 Listener
    Hi jopeco... Hello Gordon54. As Gordon54 is already aware it is incredibly painful to deal with. I have very high pain thresholds yet at times I have to take morphine... codeine .. pregabalin just like Gordon has to. I suffer badly with burning hips lower spine and bone trauma in right knee. 40yrs with no cartilage in knee has worn it away badly. About 7 month ago they took my Motability car away and now have no way to get to hospital appointments... Can't walk to bus stop and being unstabe and unable i cant even walk to doctors surgery... i live in rural village and taxis wont come out tp take me 5mins up road. !! Jopeco i think Gordon54 has given you some really good feedback. Feel free to message me anytime. Nice to meet you both x
  • Gordon54Gordon54 Member Posts: 11 Connected
    Mine was triggered by a Bomb in the Falklands, I was in the RAOC Bomb Disposal and I “Made Safe” a IED as they call them nowadays, we just called them “Roadside Bombs” and as I was Walking away I had a Mortar was explode just behind me. I was put into a Coma (by Surgeons) to make sure my body was give round the clock care and complete relaxation. 
    It gave me quite a “Wallop” and the 6 vertebrae above my Coxyxc were broken and the 5 disks between the joints virtually disintegrated. My knees and shoulders were all injured in similar way, I was told that I would be spending the rest of my life in a wheelchair and no control from my “Bellybutton down”.
    I have been “Forced off my ****” by quite a few Soldiers that I had saved in bad situations, at the time I was so close to committing Suicide (still am occasionally).
    But without the support I had from the lads I would definitely not be here now. 
    Not long after I was able to take a few steps I began getting weird pain signals, it was considered that the Argies had used “dirty bombs” we had discovered some “Nerve Gas” canisters. After a while of antidotes etc for the Gases and they eventually discovered that it was PN. I have had carpal syndrome operations on both elbows and one has just recently snapped like a guitar string, I can’t have any major operations now as I have recently had a TIA (mini stroke) and the also discovered I have 3 Aneurysms in OM1 main core through the heart. 
    The surgeons have said I am in need of a triple bypass but with my history they said I would not get through the operation and would only have a 20% chance of not being completely paralysed if I did survive.
    I won’t lie to you there are more bad days than good, the Mental Health Team asked me to keep a diary for a month, they gave me log in details and set up this Diary. I was asked to be completely truthful and swear if it help. I did use the Diary and it was obvious that they were reading it on a daily basis because sometimes there were questions on certain days that related to the matters I discussed the previous day.  
    My advice to you is get yourself on a “Pain Management Clinic” and talk openly to the person you are assessed by, they are just assessing your pains and how the medications you are using work for you. Once they have discussed the meds they will change you too ask as many questions as you want, don’t be frightened to ask anything about PN as they really are aware of the problem and all it’s quirks.  Bye for now as I am so tired and might manage to grab a hour or two’s worth of “z”s. 
  • JopecoJopeco Member Posts: 5 Connected
    Hiya gordon I am also with the pain clinic as well the meds im on is pregablin duloxetine and meds for my bladder I also take co codomol all high doses and. They dont work if I didnt take them I would be iin total agony that when my toes feels like someone has put. A hammer too them. The last time I was at the pain clinic the nurse said that I have been on the meds and treatments and there is no magic bullet and that was 18 months ago. So  the pain is getting worse but as you yoou need to be cheerful to keep the pain away thanks Gordon
  • JopecoJopeco Member Posts: 5 Connected
    Hiya sel5678 and gordon oooh excuse the punn you have been through the wars with your ailments. I need too call. The pain clinic tpo arrange for my medications . Previously I was on gabapendent but that ran its course and pain got worse been on patches chillii creams tens machines. Physio but none work after awhile I know theres no cure or magic bullet for PN I will be long dead before they find a cure :-? 
  • Gordon54Gordon54 Member Posts: 11 Connected
    We can only pray, the thing I really find helps me is meditation. I spend about a minimum of 2 hrs per day, and it helps me and I have a few friends that suffer from Fibromyalgia and they come to mine and we have group meditation sessions, I have a particular dogs charity that I like and I ask if they enjoyed the relaxation and if so can they please put a donation in to the collection tin, I don’t charge for the sessions and as I say I just ask them to put in what they feel is worth the session they just had. So far we have bought 3 Guide Dogs and subsided another 2. 
  • Gordon54Gordon54 Member Posts: 11 Connected
    May I just say I live in Kent South East United Kingdom
  • shel5678shel5678 Member Posts: 7 Listener
    Gordon54 lol me too.. Medway!
  • Gordon54Gordon54 Member Posts: 11 Connected
    That’s good, I have talked with some people and I didn’t recognise the medications they were on? It worked out that they were in Michigan USA. 
  • 111111 Member Posts: 2 Listener
    Hi, I also have neurological pain but not as bad as you, I can only offer sympathy ,empathy and prayers, xxx
  • shel5678shel5678 Member Posts: 7 Listener
    Gordon54 yeah have come across that myself... you've had a real rough time with it.. I'm lucky too that my doctor is also understanding and offers good up to date advice.. . I don't take all my pain relief everyday. It depends how intense the pain is...Hello 111 I'm sorry to hear about your experience with neurological pain. It's hard getting people to fully appreciate just how debilitating and energy absorbing it can be fighting it, even more so with strong pain relief.. if you need  a chat am usually around or will respond soon as I can.
  • sleepy1sleepy1 Member Posts: 299 Pioneering
    Hi guys
    Just wanted to add my experience of PN and say how I completely agree that it absolutely drains the life from you and it is so hard to get other people to understand what you are going through.  My feet and hands go numb much of the time but still gives me a terrible amount of pain.

    The word numb can often be misleading as people confuse that to think you must therefore be pain free.  Far from it as I think most of you will know.
    I go from one extreme to another from what feels like frost bite and shivering so much like I'm in a freezer, to then like someone chucked me on a fire. (and all the cramps, electric shocks and other torture in between).

    Done all the pain management stuff, my outlook on that is you either have to take very large amounts and like being a zombie and be able to cope with all the other side effects.  Or as Shel does........eek it out.

    Sweet dreams everyone X rosie

  • JopecoJopeco Member Posts: 5 Connected
    Hiya sleepy1 you  have just describe how I feel and what to you said regarding that frost. Bite feeling I thougt that I was the only one .my feet go so cold it feels  like I have no socks on and I am walking on ice as you said its a cold burning my finger tips are the same they are numb my hands and feet are cold .even in the summer. It be really hot day and could be cold. Inside and in alot of pain. I have been all the treatments but only mask the pain. And you have to manager it through the day until night time when pain comes on thanks sleepy1 and all that have that frostbite feeling
  • shel5678shel5678 Member Posts: 7 Listener
    Hi Sleepy1 and jopeco. I've been trying to shake the Aussie Flu for past 4 months which has caused all kinds of extreme pain levels... at one point I truly thought I'd bought my lot! I tell you what I do get more so when standing in kitchen prepping meals is top of right leg down to knee is pure ice cold numbness. Can't feel anything whatsoever ... Just ice cold and numb. I've noticed that if I don't time my pain relief right it gets out of hand and hard to rein it in.. x
  • KarenderbyKarenderby Member Posts: 2 Listener
    After suffering for 2 years and walking around like a zombie with a sore head due to pain horrible meds and no sleep ive finally found something that seens to be working for me . I came off all the tried meds gabapentin lyrica amitriptyline etc i now take b12 d c calcium and fu6sh oil  and i soak my feet in epsom salts once a day..i also have virtually cut outthe carbs . i dont know why this works but I'm  so happy that it us . I was about to give up . I could not cope with all the pain. 
  • MosparMospar Member Posts: 1 Listener
    Hi Karenderby,
    I was very interested to hear how you are getting on with your new regime having come off the tried meds,  I have been on amitriptyline and now gababentin with little effect.  I have difficulty sleeping and the general numbness, discomfort and pain seems to be creeping up from my toes through my ankles.  This seems to be particularly bad in the evening when I’m just sitting down relaxing.  It is very frightening as doctors and consultants say there is nothing they can do.
  • Nick_ButlerNick_Butler Member Posts: 6 Listener
    Karenderby said:Hi, do you really think cutting our carbs helped? I am interested as the npain is getting me down now. By the way I live in East Sussex.
    After suffering for 2 years and walking around like a zombie with a sore head due to pain horrible meds and no sleep ive finally found something that seens to be working for me . I came off all the tried meds gabapentin lyrica amitriptyline etc i now take b12 d c calcium and fu6sh oil  and i soak my feet in epsom salts once a day..i also have virtually cut outthe carbs . i dont know why this works but I'm  so happy that it us . I was about to give up . I could not cope with all the pain. 

    Struggling with peripheral neuropathy, getting me down and no end in sight.
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