Telegraph - ‘Hurting all the time is not an option’: The alternative paths to ease chronic pain

[desquinn]

From this telegraph article (behind paywall )

"But while the new emphasis on trying natural treatments is broadly welcomed, both Quinn and Dr Peacock voice concern that some sufferers might worry. “I know that a lot of people with chronic or persistent pain will be concerned by these Nice guidelines as they fear they will be taken off medication and not offered self- supported pain management by health professionals trained in helping people with chronic/ persistent pain,” Dr Peacock warns.

Quinn agrees. “There is a large part of our society that are constantly in pain and not able to fulfil their potential that will and are continuing to suffer. When guidance takes away an option that is benefiting some without replacing it then they will feel slighted. We need a renewed focus on chronic pain and research that will give choices to our community rather than restricting them.”"

[Makie-Uppie]

I have tried all the alternative treatments from acupuncture to aroma therapy some worked a little bit (acupuncture). All of them seemed to become ineffective very quickly which has led me to believe there effect is mostly psychosomatic than actually of merit. I have met medical professionals more interested in making a name for themselves, the latastest trendy fad or the equivalent of the Flat earth society. The simple fact is most of the tablets work to control pain and allow a lot of people to function who otherwise would not. True they had thier disadvantages but generally these are outweighed by the benefits. As to the cost it should be compared to the cost of the NHS, DHSS and any other S having to provide support for people who can no longer cope with thier existence.

[desquinn Partner Volunteer FMAUK Trustee in reply to Makie-Uppie]

to be critical it is more that the alternative treatments may be placebo rather than being psychosomatic but there is some evidence for them in some and our unknown sub groups may be at issue.

Also saying pain killers just work is not right, There is plenty of evidence of their potential and actual harm and their failing efficacy over time. Add to this that there is also the case that they can replace the source of pain in some cases and actually cause it or amplify it.

Its a complex situation and few easy answers and its quite clear I do not agree with some of the NICE guidance but it is not all wrong either.

[Makie-Uppie in reply to desquinn]

Nothing ever is, but some people who are in control seem to operate that way, either yes or no. When this is applied to people with their varied physiological and psychological differences it just does not work. the one size fits all approach is often forced on the majority by people who just don't get it.I was jus told by experts that I was saying just wasn't true by others a liar and a cheat. It was not until they stopped deciding and actually did a detailed examination it shifted to wondering how I was actually standing up.

But still I have people in positions of authority making decisions for me without even consulting myself or my medical records. Like I always say you have to walk a mile in someone's boots before you know if they fit or not.

The one arching fact behind all of these decisions is the need to save money, all well and good until you have a system were huge companies extract massive profits and give nothing back, bar a few pennies to charity.

I have no doubt that there are always partisan interests in all aspect of life and these are supposedly curbed by the law but this goes round in circles and the only people who suffer are those that actually need help.

what really worries me is when a medical (higher than a GP) professional recommends homeopathic remedies, this belongs back in the middle ages. No wonder the anti vaxers and and the lunatic fringe are gaining ground.

[Bananas5]

David tried auricular acupuncture. some years ago with an holistic Doctor...he was also a highly skilled surgeon.

It appeared successful for a few weeks but wore off. Repeated treatment did not work.

The holistic Doctor also used many alternative medication at a high cost. If any had helped we may have stuck with it longer.

In days of yore conventional acupuncture used to be provided by pain clinic. Not these days so....the cost is far too high for most patients.

You can't stop conventional medication, if it works, without providing a good prescription based alternative

x

[desquinn Partner Volunteer FMAUK Trustee in reply to Bananas5]

from what I understand the evidence used on the trials around the acupuncture advice was on dry needling and about fibro and nick pain. From what I understand their is a significant difference from acupuncture to dry needling. Does read in the comments as if it is selective bias on the trials and focussing on reducing cost and using treatments that are not harmful. Bit of my cynical voice coming through perhaps

[Bananas5 in reply to desquinn]

Yes 2 procedures using needles but there the similarity ends. One is thousands of years old...used on animals who can't tell you how they feel...the other a modern fad..

But that's my own opinion

x

[desquinn Partner Volunteer FMAUK Trustee in reply to Bananas5]

I do not know enough to know what I am talking about. But did not like the ability of NICE to extrapolate in that situation but rule out good quality evidence that was relevant elsewhere.

[Hidden in reply to desquinn]

Im not sure about the new nice but can u explain in laymans terms wats happening with meds? I fould opiod meds helped me with fibro pain and duloxotine was like hell on earth comming off that i nearly sectioned myself yet this is one of the main tablets prescribed for fibromyalgia yet was the worst tablet ive ever taken as well as amitriptyline, this is evidence based on my experience?....that pain meds are better when needed for example flare ups...

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

hope this helps

image of FAQ on nice guidance

[Hidden in reply to desquinn]

So my doctor will stop codiene? Is that correct also have you heard rad of microgablin a new med for fibromyalgia thank u x

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

as it says above no meds should be stopped that you are already being prescribed but the may have a conversation. microgablin is in the same family as gabapentin and pregabalin and is not prescribed for fibro normally.

clinical trials have been done but it has not received a license for fibro anywhere yet AFAIK. pubmed.ncbi.nlm.nih.gov/312... - "Conclusion: While both mirogabalin doses were well tolerated by most patients and showed potential for reducing pain associated with FM, the primary endpoint of significant pain reduction in patients on mirogabalin compared with placebo was not achieved in any of the three randomized controlled studies."

[Hidden in reply to desquinn]

Thank u for that... Much apreciated

[Cat00]

My experience of fibromyalgia chimes with the NICE guidance anyway. I've been on most of the opioids at some point. Gabapentin, Pregablin, morphine and it's derivatives it's only when I had to come off them I realized they hadn't been doing anything. I tried acunpture, physio , Bowen therapy, myofacial release, none did anything for me. I was on anti-depressants for years again nothing. They only thing that helps me is exercise. I've had therapy of various types for 20 years none dealt with living with chronic pain. I was told by the NHS that my problems were too complex for CBT and that they had nothing they could offer. In the end I tried a "living with chronic pain course" from the local buddhist centre, which I had to pay for myself which I think did help me to come to terms with my painful exsistence. I was eventually referred to a pain clinic, they tried even stronger opioids, injections and patches, these didn't help either.

I'm much better not taking anything, I'm still in chronic pain but at least I'm not damaging my internal organs and having side effects such as weight gain etc. It's hard to imagine life without being in the vicious cycle that opioids induce. The pain relief you get often is a consequence of your bodies addiction to these meds and the pain of withdrawal can interpreteted as your fibro getting worse without them.

[desquinn Partner Volunteer FMAUK Trustee]

everyone has a different path and exercise, pacing and mind health are all things that are good for fibro, Just a clarification on the above "Gabapentin, Pregabalin" are gabapentinoids i.e. Anti-epileptic drugs and not opioids.