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dori2o · 9 February 2013 at 8:49PM

sunnyone wrote: »

Many people get relief with a combinations of therapies, it takes time to find your individual cocktail but it worth it for the relief it brings.

I was diagnosed before it became common practice to prescribe neuro painkillers, I was prescribed massive doses of ordinary pain killers at first
So was I. I went through the whole paracetamol/Ibuprofen, Co-codamol, Co-dydramol thing, for 3 years. After that I had steroid injections, and after that I went to a pain clinic where they started on the stronger opiates and other combinations.
and while thay helped with my spinal and pelvic pain they did nothing for my RSD so when I was first prescribed gabapentin and diazipam the change was amazing, it didnt last but I got relief for the first time and over the years I have found the right drug/therapy combination to help me (it needs tweaking regularly to keep it affective, about twice per year in the past few years)
Then you are one of the lucky ones. There are as many who cannot find a combination as there are who do.

My next step is not medication based, it is surgical, Spinal Cord Stimulation, if I can get the NHS to fund it.

I was toatlly isolated at first, I felt like the only person in the world with RSD, this changed with the internet and veI talked to many, many people with the condition since then and most people do find some relief, the degree of relief varies from person to person like everything else.
You are right, I get relief, but only about 5% with medications.

Like you say the response to medication differs from person to person.

Just because you havnt found something that works for you dosnt mean that many other people with the condition havnt, maybe if you read a few real fairy tales it would give you a more positive outlook which will increase the chances of you finding relief.

I don't need to read fairy tales, I read fact.

try reading 'Saving my Knees' by Richard Bedard. Very good read for someone trying to overcome pain.

Try also reading ' Why Zebras don't get ulcers' by Robery Sapolsky, 'The truth about chronic pain' by Arthur Rosenfeld, 'Opium for the masses' by Jim Hogshire

Listen to the airing pain podcasts. Very informative with interviews from leading experts in the diagnosis, treatment and control of pain.

If they don't interest you how about reading some of the fascinating medical research papers. The one I have just finished reading was on Mindfulness-based stress reduction for Chronic pain management. An excellent paper which showed good results in the trials which were based over 4 years, interestinglt better results in pain relief were found in those patients who did not take medications with the Mindfulness therapy.

Then there are the various papers available on the internet which prove the benefits of using cannabis for treatment of chronic pain (see this one in the Practical pain management journal), both with and without THC. Synthetic cannabinoids faired afr worse than the real thing, yet there wasn't much difference between the results for the cannabis with or without THC.

If you have CRPS this will interest you

Don't preach to me about what does and doesn't work.

I've been there, tried it, bought the t-shirt.

Everyone is different. Not everyone reacts the same to any medication. Not everyone reacts to combinations of medications the same. Not everyone gets the same amount of relief, not everyone experiences relief.

One of the reasons for that could be this, in the US plans are underway to genetically screen patients with chronic pain conditions for the deficiency of these enzymes, as it may be a completely pointless exercise to start opioid therapy.

Taking into account previous experiences of how long it takes the UK to catch on, these tests may be available in the UK in 10 years or so.

sunnyone · 9 February 2013 at 9:47PM

dori2o wrote: »

I don't need to read fairy tales, I read fact.

try reading 'Saving my Knees' by Richard Bedard. Very good read for someone trying to overcome pain.

Try also reading ' Why Zebras don't get ulcers' by Robery Sapolsky, 'The truth about chronic pain' by Arthur Rosenfeld, 'Opium for the masses' by Jim Hogshire

Listen to the airing pain podcasts. Very informative with interviews from leading experts in the diagnosis, treatment and control of pain.

If they don't interest you how about reading some of the fascinating medical research papers. The one I have just finished reading was on Mindfulness-based stress reduction for Chronic pain management. An excellent paper which showed good results in the trials which were based over 4 years, interestinglt better results in pain relief were found in those patients who did not take medications with the Mindfulness therapy.

Then there are the various papers available on the internet which prove the benefits of using cannabis for treatment of chronic pain (see this one in the Practical pain management journal), both with and without THC. Synthetic cannabinoids faired afr worse than the real thing, yet there wasn't much difference between the results for the cannabis with or without THC.

If you have CRPS this will interest you

Don't preach to me about what does and doesn't work.

I've been there, tried it, bought the t-shirt.

Everyone is different. Not everyone reacts the same to any medication. Not everyone reacts to combinations of medications the same. Not everyone gets the same amount of relief, not everyone experiences relief.

One of the reasons for that could be this, in the US plans are underway to genetically screen patients with chronic pain conditions for the deficiency of these enzymes, as it may be a completely pointless exercise to start opioid therapy.

Taking into account previous experiences of how long it takes the UK to catch on, these tests may be available in the UK in 10 years or so.

I was prescribed several books by the pain clinic and I have been given/bought several others, thats how I came across alternative therapies and they have saved my life, I was suicidal in the begining because nothing would touch the pain.

I wanted my leg chopped off, it was that or suicide.

Some of the books are full of success stories which I found a bit patronising at first, you know the type a man with a bad back learns to pace himself and he feels so well he decorated a room.

Everyone is diffrent which is why everyones cocktail of drugs/therapy is diffrent, there are so many drugs/treatments available everyone can find some relief if they keep trying.

A negative attitude hinders treatment, a positive attitude goes a long way in pain managment.

I will always be in pain, I have come to terms with that and I can live with it so long as it is at a managable level.

sunnyone · 9 February 2013 at 9:54PM

I am currently using the mind full way to beat deppression, its difficult for me because it comes with a CD and Im deaf so I cant use that tool but Ive read the book three times and Im learning the new management tools within,

The tools contained in the book are used to treat pain too, my pain clinic psycologist is helping me to work through the relaxation techniques and shes pretty good so I hope it dosnt take as long to learn them as it did to learn self hypnosis because that took years to perfect. But it was certainly worth it, it makes life much more bareable.

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