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    I am now at my wits end about this dreadful illness. I have tried so many medicines and homeopathic treatments that I can’t remember some of the names of the ‘drugs’.

    I know some sufferers have contemplated suicide as the only cure and I can understand why. Any thoughts please on your own situations.

    Helen H

    HI Olive

    but I know(first- hand) how constant pain can make you feel you can’t take it any more. Most of us on here live with long term persistent pain. I have had constant pain for nearly 7 years, and a lot on here have had it a lot longer than me ( my husband around 15 yrs).

    Disturbed sleep is something that is one of the things that make life feel dreadful. I don’t know if your GP could prescribe you Amitriptyline, but we both find it really helpful, as it will get you to sleep when you’re in pain, and you can start on a very low dose.

    If you jump on the PAIN RELIEF section you will see that Jan has put together a range of ( non- drug related) ways to help with coping.

    I am both a crafter and an artist, and I find I can get lost in my creative work. Music or audio books are also great for distraction.

    Sorry I don’t have all the answers, just know that you are not alone- so many of us DO understand, and are spending today in pain too.

    Take care


    Hi Olive, I have been in pain for about 23 years, with nerve pain , nerve pain/damage is a difficult one to treat, and only drugs like Amitrityline , gabapentin , lyrica ,tapentadol and others along this line, also a wide range of injections and nerve ablation, in my experience normal pain killers and opoids do not touch nerve pain. and the only one i can take without adverse reactions or can tolerate is Amitriptyline. nerve injections ect didn’t work for me or were very short lived.
    Also been down that road of depression and suicidal which I tried counselling which sorted out some childhood issues I had , but later after doing CBT 1-1 for a year and mindfulness helped me mentally to deal and cope with what was going on. I think nerve pain is the worst type of pain.
    Helen has already given some advice for which I to use art and crafts to help, I found that a Tens helps me to carry on with bad pain. it doesn’t take it away but helps mask it. But by talking to others in a similar position found that what meds and alternative treatments work for one doesn’t mean it will work for you. It’s a case of trying it all to see what methods work for you best,
    But your in the right place to talk about your issues and problems, as this site also has helped me by talking to others that are in the same boat and truly understand what living with pain is about with empathy. The biggest and hardest part is Acceptance, acceptance that this is how you are and find ways to deal and cope with what your going through and to live alongside your condition in a non judgemental way and a kindness to yourself. and not keep having mental battles within, as this can make your pain worse, also with mental issues too.
    On this site there is such a wide range of people with different issues but bring us all together by one thing, Pain, we all have our individual ways of coping , so put it all together have more info than any GP surgery can give sometimes they learn from us. I had phone call one day to come into a pain management group to try and tell them how I cope and its not he end. and they have know got a CBT course within their management program for people who want to try, and believe they are now trying to roll it out across the country.
    As Helen says I don’t have all the answers But You are not alone and isolated and you have my empathy as it’s not nice thing to live with, but you can cope and manage and still enjoy your life take care and best wishes. Lee


    Thanks everybody for your help. About Amitriptyline, I was put on this for depression long before the Shingles broke out.Also prescribed have been Nortriptyline, Gabapentin, Tegretol (the latest, side effects horrendous) and others I can’t remember.
    I have had more success with Homeopathics-Vitamin B, Olive Leaf Extract, Aconite,and currently Lysine which help more than chemicals. They regrettably only work on a temporary basis until the virus finds a way back. I asked my doctor if he would re-prescribe Acyclovir which is the only drug I know that fights the Herpes virus. He said the NHS will not allow this medicine on a long term basis (anybody know why?)
    Meditation also takes the pain away but it comes back a few days later even worse.
    I really have given up hope of finding a lasting solution.As my doctor says I have a ‘friend’ for live!


    Hi Olive , amitriptyline is a anti depressant so for this is prescribed in larger doses, but for nerve pain Ami works best at lower doses between 10 -60 mg anything higher is no good, and is for depression. Acyclovir is for when you get shingles and herpes virus sometimes in form of creams ,tablets ,liquid and is not provided for long term use after the infection, as it don’t work. only to fight active infections not what is left over side effects of the infection , hope this makes sense. Lol your Dr is right but a cruel pun. a friend for life. look at it like a friend and don’t keep fighting it,Be kinder to yourself as it’s not yours or any bodies faultthat your like this, as I have already mentioned above. it will make you see life in a different perspective and you become appreciated in the little things that makes you happy. It took HelenH a few years before she realised what I was going on about through the help and tools you learn from Mindfulness. don’t try it by yourself as you won’t get it, you need guidance, to help you understand, take care and best wishes. Lee


    Hi Olive, sorry forgot to mention, that long term usage of acyclovir can cause other damage to your body and blood system, and in some people death. that is why its only used for shorter periods and not long term usage.also that there is no evidence that it works after the out break has cleared. hope this helps. Take care and best wishes, Lee


    Lee. Thank you for explanation about Amitriptyline and Acyclovir. It certainly helps to know why certain pills are not used as it means you can eliminate those from the list of possibles. I am not decided whether to pursue the Tegretol as even the smallest dose is frightful (headaches, dry mouth and dizzyness/unbalance) and you are unsafe to drive. I’m due to report back to my GP in a couple of weeks so I should try
    to take a few more of them to prove their worth.
    I am still taking Lysine which does have some scientific evidence as an anti-viral remedy and certainly it does make an improvement overall. My shingles/PHN outbreak is in my head (all over) so it is nigh on impossible to use creams/skin treatments. Does anybody have experience of Acupuncture as a ‘cure’? I have considered it but it could be an expensive mistake.


    Hi Olive, it’s a case of how you feel as an individual as whether you take or try something, if the tegretol is causing you horrible side effects that you would rather deal with pain than cope with the effects of a certain drug , does it work for you or not. As I dont like being to spaced out and zombified so I choose not to take certain drugs as for some of them I just cannot tolerate or have adverse reactions to. even if it did work or not . its just how you feel whether to have a go or not. nothing wrong with trying something then change you mind later. you got to feel comfortable in taking something. Personally I wouldn’t read to much into side effects of a drug as every one is different and its a case of if it works for you without to much problems. like Ami gives me a dry mouth and i have put on a stone but that is minor to me as it works for me and i sleep better.
    As for acupunture I tried it once with no effect.but some I now even a couple of sceptics into alternative medicine. and it works for them great but they do have to keep going back for more to get relief. I have only known one person to end up in hospital after acupunture he kept being sick.SO my advice is to look around and get an accredited one with good reviews.Or ask if your GP can refer or recommend one for you. I have in town where i live, and he is supposed to be really good, he is chinese and runs a family buisness Chinese medical centre and even trained a couple of local GP’s. sometimes depends what it is, but some I know have had one or two sessions with him and it’s worked for them and never had any more trouble. Hope this helps somewhat. I’m all for alternative treatments and use them alongside medication. All I can say is try it if it works Great, you have found something, if not try something else. Let us know how you get on . take care and best wishes. Lee


    I’m late replying to this and I hope you’ve found some relief by now. I just wanted tos ay if you do try acupuncture, make sure it’s by a well trained therapist, particularly in Chinese acupuncture if you can. I’ve come across several people doing it after only a short course and in t he wrong hands it can be dangerous. I Once had an NHS pain consultant insist he was trained ( yes a 2 week course) who made me far worse. Have you tried Bowen therapy? It works in a similar way but with rolling movements on the skin rather than needles and it’s very powerful. A good therapist will tell you at eh start hat if 3 treatments don’t help, they won’t do any more so you know you are not wasting your money, Try to find a therapist but same applies, check qualifications.

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