After three operations on my neck for stenosis I have suffered with intense stinging pain in my hands for the past three years.
Tramadol has no effect, I was allergic to morphine patches and I have so far resisted taking anti depressants as I am concerned about side effects. Has anyone any pain relief suggestions and has anyone tried sativex or hypnotherapy? Any answers appreciated.
Sorry to hear you're having such a hard time. I have peripheral neuropathy in both feet and the doc has put me on an anti-epileptic drug. It works really well but I did feel a bit stoned for the first few days! I'm also on a tricyclic anti-depressant for cervical spondylitis and fibromyalgia and it also helps with the nerve pain because it numbs the nerve endings.
I'm not saying they'll work for you but it's something to discuss with your doc.
Good luck, I hope you can find something to help because nerve pain is horrendous!
Best wishes
Lou
Nothing in a pill works for neuropathy unless you want to become a zombie who can't be bothered to complain about the pain and doesn't feel very well. I have it in my feet and legs mostly that gets worse as I walk but also in my hands which I can ignore most of the time. You have to realise that this pain is not there to protect you from anything. It has no purpose at all so reject it. Focus on it and try to make it worse, see how bad you can make it then pull back and try to diminish it. Then own it and give it a colour. I use orange and then imagine it turning blue, once it has all gone blue I make it smaller until it becomes a little blue ball in each toe.
I don't care if it is Self hypnosis or imaging, it works for me, but it's a technique I developed over time so I hope it works as a starting point for you to find your own way to live with it instead of it being something that upsets your life. before you try any drugs do a baseline test on a few areas of your personality. Find something that makes you laugh, find a puzzle that is a challenge but you can do, find the best and the worse of things and then compare how you feel and what you can achieve after you start the drugs. It helps you to decide if they are worth it.
I agree with you about the drugs although I would like to try sativex which is canabis in a mouth spray and can be prescribed by a neurologist but they are reluctant because of the cost.
I am waiting for an appointment at a pain clinic to try hypnosis. I've tried magnetotherapy which has not worked.
My main attempt to divert my attention from the pain is reading phycological thrillers on my kindle. Thanks for your advice.
Ketamine is a very dangerous drug and not prescribed for neuropathic pain as far as I know. sativex has been recommended for multiple sclerosis and research suggests it could also be effective in reducing neuropathic pain too. My neurologist is willing to prescribe it once it has been authorized in France. It is available in the U.K. and just like smoking canabis it can give pain relief.
I tried ketamine and became a head with no body and was off my face but in an unpleasant way for a few hours until I returned to my neck. it was respite perhaps but not worth it. I've tried cannabis and medicines made from it as I was a patient at a trial clinic in Camden that has only recently closed. It got me nicely mashed but did nothing for the pain. Perhaps even highlighted it. Also tried nabilone, flipping heck is all I can say to that one.
MDMA works for me and gives me back a natural flow to my movements but I couldn't go round feeling like that all the time and you can't be doing e's in your 50s its undignified.
If you build up a tolerance to ketamine or opiates and develop cancer you will have no pain control options at your clinical endpoint so I would say save them in case you really need them
Well you are a cheery soul with lots of negative advice. What is MDMA and nabilone? Just returned from my fifth session of magnetotherapy in a pain clinic in Avignon with no effect whatsoever. Have an appointment for hypnotherapy in two weeks time and if that doesn't work perhaps I should take your advice Ydontujust die!
Is my advice negative? Taking drugs to blast away your personality just for a bit of pain relief seems negative to me. I've had 30 years of experience and I've tried them all in the past. Hoping that the next drug will end your pain is junkie mentality. The truth is harsh sometimes but that isn't my fault. All I am trying to say is that when you accept what you have to work with and stop craving something that doesn't exist it lets you get on with your life. It doesn't stop me asking about new drugs every now and then In the hope that something can turn off the pain but leave the lights on. I think I've said all I have to say on here now so you won't have to be offended by me any longer. I only joined this to see if anyone had anything useful to share but it's all about drugs and transferring the blame to doctors for failing to have a magic pill. I hope you don't become a victim of Mr Cameron's benefit cuts. I went from a large 2 bed flat to a rat infested unheated derelict hovel miles from anywhere and now he's going to take my car away with his murder measures and PIP, the benefit that anyone capable of independent living cannot get . But fighting against this has given me purpose, and that has done more to make me forget about the pain than anything else has.
Sorry to hear your living conditions are so miserable in Cameron's Britain. Fortunately for me I live very comfortably in France so I have nothing to complain about in that respect and yet living with intense pain day in day out still is a blight on one's life and sometimes it is hard to stay positive.
I too have resisted taking mind altering drugs but for some people they seem to work. It's a question of trial and error I suppose. The important thing is not to give up hope. I wish you luck.
Hi Suzhayes,
I'm sorry you have had chronic pain for so long. Its mot much fun and only people who have experienced truly know how debilitating i can be. I'm in Australia and have been reading a few posts from this forum as I am interested in the Expert Patients Program that your NHS runs. I've seen a few Youtube video's on the program and its participants. It looks really positive and I wish we had something like that here in our Medicare system.
I am studying Social Work part-time and am really interested in doing something similar here in Australia. If you don't already know about the program - try and google it....there are a few really positive video's from chronic pain participants.
I've had chronic pain for 10 years, since my daughter was 6 months old. Its a neuropathic pain that affects every part of my body, except my head! Where there is a bone and tendon sheath, there is pain and tenderness. I have Crohns disease and the doctors believe I had a secondary inflammatory response to a medication I was given for the Crohns disease - bummer.
Long story short, there is nothing that can be done as what remains is a neuropathic pain cycle. I am really interested in the books published by Dr Norman Doige on Neuroplasticity - on how the brain is not a hardwired organ that cannot change and rewire itself. He has two books published.....have a look on Amazon.
Over the years I have taken many opioid type medications and they have given me much relief, however, as we know, we do build up a tolerance and they no longer become effective.
I have a terrific Pain Specialist. He is a Professor that teaches at a University and works in Rehab and Pain management. I suggest you find the best specialist you can find or afford. Talk to people in the 'pain profession' and ask them 'who is the best person to look after me'. I found that having a good team of doctors is so important.
I am currently taking a medication called, 'Physeptone' here in Australia. It is low dose Methadone and it has really helped. I am also reducing the dosage and hoping to have stopped it by the end of this year as I am doing really well, pain wise. I believe this medication stops any psychological/physical cravings you can get from other medications and has helped me to manage my pain better. I've been taking it for about 18 months. Its not a common drug here but I do think it has helped me and reduced my pain levels to ensure I can continue with study and life!
I'm not sure if I have been helpful, however, my advice would be to ensure you have THE BEST medical team you can find. People who are up on the latest research. Find a medication that suits you.....doesn't mean you will be taking it forever. And, try to balance your life so the pain does not take over. Then, with your medical team you maybe able to reduce your medication or even stop it.
Good luck. And, ignore people who are not positive or helpful. They are projecting their problems onto you.
Cheers,
Cheese01 
Many thanks for your very informative and encouraging mail. I will follow up the references you have suggested. You seem to have been dealt a bad card but you sound very positive and not at all self pitying. I try very hard to keep up my morale but sometimes the pain makes me cry although perhaps that emotional release is needed.
I live in France where the health service is excellent but there is no magic cure for neuropathic pain. In two weeks time I will have hypnotherapy at the pain clinic so I am hoping that could help.
Good luck and wishing you well.
Yes, the pain really get you down and a good cry can help. I've certainly had those moments. Call it whatever you like, but, like I said, until you've walked in our shoes you have no idea how relentless the pain can be and a good cry can release tension. And tension will make the pain worse.
The hypnotherapy sounds really interesting.....I've always wanted to give it a go but as I live in a rural area I've never found anyone that can do it......let alone someone in a pain clinic.
All the best, can you let me know how you go? I think you could be onto something. Hang in there and don't worry about having a 'walllow' from time to time. We are not super human and no one had chronic pain as a plan for their lives. We need to be able to release our emotions, let go sometimes. I don't think that is self pity, I think its sensible to release the tension and be kind to ourselves. Nourish.
Take care and I really hope you receive some relief from the hypnotherapy
Dear fellow sufferer, so good to communicate with such a lovely person who is so empathetic and supportive. Friends and family are sympathetic but they can't really feel the pain nor would one wish it on anyone either.
I will certainly keep in touch and let you know how the hypnotherapy works out. The doctor at the pain clinic is a bit doubtful that it will be effective because French isn't my first language. Still worth giving it a try. All the best to you.
Hi there,
I'm from Australia too. May I ask you who is your pain specialist? So far I haven't had a good team behind me.
I have neuropathy too and it's really effecting my functionity. Would really like to find a good pain specialist!
Hi there,
Just wondering who your pain specialist is? As I am struggling with neuropathy? I live in Australia too.
Hi Bunce,
I would recommend Prof Milton Cohen at St Vincent's Hospital (Private) in Sydney. You would need a referral from your GP as usual. I believe he may do a public clinic on Fridays, you would need to check it out.
Ph: 02 83826487
Suite 401
Victoria St
Darlinghurst NSW 2010
He is a Rehabilitation and Pain Specialist. I travel 6 hours to Sydney to see him, I've seen a few 'specialists' over the years, and I find Prof Cohen looks at things a little differently and treats you with respect and as an intelligent human being!
Sometimes he says things you don't want to hear but you know deep down he could be right
If you are willing to try a slightly different approach then he could be the guys for you.
Good luck
How would y describe his approach? Thanks for the name of your specialist. I how I can get in soon!
Do you find physeptone helps with burning in the feet? Thanks!
Hi Cheese01, I have made an appointment to see Dr Cohen. Is he up on all the latest medication?
Hi Bunce,
I don't have burning in my feet so I can't say what would help that, or what your condition is. Prof Cohen is really the best person to talk to.
Physeptone tends to be prescribed for Neuropathic pain - its not common, and as its methadone based there is stigma around it. Which I'm sure, if you're a pain sufferer, you would understand this. As I live in a rural coastal area, I need to ensure the chemist orders it in as it doesn't have a long shelf life.
I'm glad you got an appointment to see him. Everyone is different and it took me a few appointments to 'connect' with him. I hope you like him, however, there is no guarantee's as we are all so different.
But I always find honesty about everything is best....he's seen it all. I found him very thorough in my first consultation. He checked everything. He has a soft, kind manner and I find he listens to me....which is refreshing! I feel he looks at his patient as a whole person and treat accordingly. Not just another pain sufferer - he likes to know that all areas of you life are going well...and if not, he'll make suggestions.
I go with a list of things I'd like to discuss so I don't waste the opportunity. The first time I saw him I actually emailed him my health history, which he was able to read beforehand and so we saved a bit of time in the consultation. His secretary would have his email address if you wanted to send anything to him beforehand.
As I live so far away from Sydney, I did these things to ensure I got as much from the consultation as possible.
In regards to medication, if he doesn't know, no one will. He is a Professor and teaches medical students at Uni of NSW (I think).
A good book to read is by Dr Norman Doige called 'The Brain that Changed Itself'. Have you heard of it? I think its really interesting and is the future of how we'll treat chronic pain.
All the best
Diabetes - Neuropathy
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