I am wanting to know peoples thoughts about producing a magazine based around Chronic Pain, and the associated conditions. I suffer from CRPS myself, and am wanting to start to produce a magazine for Chronic Pain sufferers that has articles about new techniques, clinical research, and also has patient stories from other sufferers to help to highlight what people are going through. This would be a way to share experiences so that others can learn and empathise with the journey through chronic pain.
The magazine would be free to download (not just limited to pain sufferers, but will be available to a wider audience to help to highlight different conditions), and I am just posting this to gauge peoples reactions, and to find out whether they would be interested in reading such a magazine, and how long you think it should be. I don't want it to be too long so that people get bored, or too short to that people think it doesn't cover items properly.
Any comments are gratefully received.
Thanks
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Ru55ell
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I used to get the paper version of Pain Concern./ Pain Matters. And this brilliant site "Healthunlocked" has many different topics concerning Health. Have you checked the Communitities list out to see if CRPS is on the list? Otherwise you could perhaps add it to the list. thinking more about a download magazine. It sounds good in principle and it will be interesting to see what other peeps think.
Thanks for your feedback Rosepetal60, the forums here are great, and there is a lot of information, I just think at times it would be great to compile it all together and have something that people can read through and keep so they can easily find and access it at a later date, even to print it out so they can take it to discuss with their pain doctors.
Think it may have been to do with price. Not that it was expensive. It wasn't. But maybe I had to economise at that particular time. But As I remember, I did subscribe for several years. and I have still kept a few copies for interest.
Thinking further about the magazine, I always looked forward to reading it when it came through the letter box. Have you read any of the Pain matters mags ?
Hi Rosepetal60, I have got a few copies that I'm reading through yes, and I find it informative, but some of the articles don't always hit the point for me. I want to create something similar, but keep it free. I think it's good that you can keep copies for future reference which is why a magazine format is good.
Great idea!
My thoughts having read many show and tell type mags ( my sister ran off with my half brother) are:
1) factual rather than sensational
2) raw honesty, no extra emotional tension
3) No outwardly negative attacks on established NHS depts
4) Quality rather than quantity
5) Interview the researchers as well as publish their research
6) balance between conventional and alternative therapies
7) interview gp's and other health professionals
8) overall positivity
9) monthly meditation link
10) benefits system
11) healthy eating - readers given different recipes to review
To keep it fresh it might be good to explore each issue
1) a condition
2) 2 true life stories using different solutions
3) gadget of the month
4) readers poetry, prose or short story, art or photography competition on given subjects, voted for by the readers
Not sure how you would keep it free and you might need a lawyer on board to check you are not getting into expensive trouble.
But start small although I wonder why the magazine format rather than a professional blog where you can post relevant articles as completed rather than having the pressure to have a few things ready at once. More reader interaction with a blog too.
Thanks for that great feedback. I was already thinking along the lines you identified to include, I have been a member of many forums, and have noticed that a lot of people have lots of great advice, but there is no overall co-ordination of the advice, which is why I was thinking along the lines of a magazine rather than a blog or forum. I would get the advice from the readers, and then make into an article where I would interview health professionals, and also find out about any research etc... This way the articles would be kept in a positive way that readers could read and take the positives from.
When I go to see my GP (quite often a different one each time) they are more often than not unaware of the issues and research going on, and I have even been sat in a consultation whilst my GP is on the internet 'googling' advice. I think it would great if I could cover a condition or an aspect, and people can then use this to go along to their GP and discuss where possible research into the condition is taking place, or new techniques that have been found to combat certain conditions.
You are right in saying to start small, so long as readers get on board and interact with the magazine it will grow bigger.
I have an idea of how to keep the magazine free, and it is something that I am passionate about. Chronic pain sufferers have a lot to deal with, and I want to be able to give a form of support that should be free. No-one has asked to have chronic pain, and they shouldn't feel penalised because of it. Plus if it's free there's a lot more chance other people will read it and start to understand that chronic pain in itself is not just one condition, but lots and lots. It will also help to highlight the difficulties faced by many of us, and even if that means a few extra people understand these conditions, then I feel the magazine will have achieved far more than the support for chronic pain users that I initially intend.
It's true about the GP's and also some hospital consultants. It's surprising how little information is known by the medical profession. Especially when you have to see a consultant for any other condition, and you spend 10 - 15 minutes explaining your current history, but that's another issue that can't be solved by the magazine. (unless they read it!)
I think it is a wonderful idea. If it is your passion and you are up to it, I say go for it, if you already have not. I only found this site tonight. I am a 64 year old woman with Chronic Pain from several conditions and I still have to work. I would love to get a magazine like this and have it in some kind of "order," as you say, so it would be easy to find things, whereas on sites it is a bit more difficult. I am still finding things that are new to me but have been out there for a few years. Your magazine, especially new treatment options and ideas would be a good source for anyone with chronic pain. I live in the United States. Somehow I think this may have many people on it from all over the place. I cannot remember if you said your magazine would be downloadable or not, but that would be a great idea.
Yes it would be really helpful to also know if you are on a postcode lottery I.e some drugs are available in some areas not others it would be good to know if a drug is helpful in pain relief especially if it is backed up by research it could then be possible to put it forward for consideration to authorities that don't currently prescribe it
Thanks Sheryl4659, that's one of the intentions of the magazine, to highlight what works, and also if there any clinical research going on, and the outcomes of research that has been held in the past. I have been involved in a clinical research study myself, and I have done some promotional material to highlight how important clinical research is to finding new techniques and methods in combatting conditions. The problem that researchers face is the stigma of a 'trial' and getting the information out to patients that research is taking place.
Hopefully with this information it can be used to try and end the postcode lottery of medication, as the results and information can be shared nationally (and globally if it takes off to that extent) so that authorities can be made aware of the positive outcomes of medication.
Interesting idea. Have concerns because what is quality data from medical sources can be very unreliable. Why is this? Patients selected for clinical trials are carefully selected. Patients treated on the results of those trials are not so carefully selected. Trials are short lived and do not record the long term additive nature of drugs. Patients with a health disability are on drugs for periods far longer than what has been tested in trials. There are side effects if you come off drugs you have been on for a long time.
There is a need for each patient to be given the tools to investigate their own health disability. This is at present non existent. There needs to be education of patients by the medical profession of how the body works in respect to their health disability. This has not been forth coming in many cases.
I'll stop at this point so that you can reply on the points mentioned above.
Thanks johnsmith, I have to disagree slightly with you regarding the research. The research I undertook in no way affected the treatment I would be given, I was not carefully selected, I was selected on the grounds that I had already consented to undergo the procedure having been told that there was no definite guarantee with the outcome. I do know however that some research does have very specific boundaries for patients they consider suitable. The point about including research data, is that other patients can be made aware of the research that is being undertaken within a specific arena, and then they can be more informed about potential treatments.
Also the research I was involved with lasted for a period of two years, I have only recently left the research programme, and I know this research is going to continue for at a year or so beyond this to gather the data from the remaining people involved. As with any type of device or drug different people will react in different ways, and it is through research that more can be understood about each type of treatment.
I fully understand your points, but the magazine I am proposing will not just focus on research, but it will cover a whole variety of issues so that patients and sufferers can be more informed about what is going on around them regarding their conditions, and it will contain information from patients and also healthcare professionals so that the story given is balanced and fair.
I hope I have managed to answer your points, and to re-assure you the magazine will not be sponsored by any type of research programme or health professionals, it will merely be a platform where different information can be obtained by patients and sufferers of different conditions.
Just to go back to the treatment I have had, I have been told that there is no information regarding how human tissue reacts to the device I have had implanted, but it through research that this information can be gathered and obtained.
Thanks for the reply. It was most useful as it showed that I still have to work on setting out the wording for what I am trying to say.
Currant trials consist of many people taking part. The results when statistically plotted produce a Gaussian curve of some sort. A patient's response can be anywhere on that Gaussian curve. So the proposed treatment, based on the trial results, for the patient may not be the best treatment. The treatment may even do the patient damage because the patient may belong to a group of people who the trial showed negative effects on.
This is why there is a need for a patient to be able to investigate their health disability over a long period of time. A friend of mine (a statistician) will be asking questions concerning this at a conference towards the end of August. I have a number of University researchers who hopefully will have looked at this sort of question when I see them again in September.
Hi Johnsmith, I understand a bit more now about what you are getting at. I totally agree that patients need to understand their health disability to be able to make informed decisions regarding their treatment and healthcare plans. It is through reading about other peoples experiences that they can then look to other (sometimes dissimilar) conditions and treatments so that they can find something that helps them.
I believe that by having information collated together in an objective way will help other sufferers question the treatment they undergo, which will lead to them having a far more informed choice of treatment.
I still believe research has a positive impact on the future of how conditions are understood and can be treated. It may be that one patient has an adverse reaction to a drug or treatment plan, that leads to a breakthrough in the understanding of the causes of certain conditions.
I also believe that having a smaller research group can skew results when those people have been 'carefully' selected, by having a large research group that covers a broad range of a particular condition will give better and more accurate results. The best way of obtaining a broad research group would be to publicise any potential research and allow sufferers to put themselves forward for research in an informed way.
In essence I think we are both thinking the same, although our articulation may be different when written in these posts.
The magazine I am proposing will allow people to read around subjects, and give unbiased informed information, that individuals can read further on if they want. I would never recommend anyone to undergo treatment based upon a magazine article, but having knowledge means you can have an informed conversation with healthcare providers to ensure that all avenues are open to be explored. I know from my own experiences, being informed has made my journey through pain treatment a lot shorter and I have felt far more in control of the path I have trodden.
I wish your statistician friend luck in getting a positive outcome from his questions, and that the way research is undertaken and viewed can be changed so that it encompasses a broader group, and becomes less stigmatised so that more accurate outcomes can be gained. It is through this broad range that patients can be put less at risk as there will be a lot more data available to determine whether a treatment is going to be effective or detrimental to a patient.
John, there is no reason why you can't do your own research these days. The internet is full of information.
Join pintrest and search your condition. Search pain. Loads of easy to follow pictographs.
You can join many medical paper sites and download trials, discoveries new treatment methods.
I understand some info on the net may be dubious, but the more you gather, the easier it is to get a common thread and build a reliable picture.
I've learnt alot about body function and brain controlling body function from alternative therapists. They have a huge understanding of pain and it's pathways, how the body functions in good and bad health, how negativity can add another layer of pain.
I recently discovered I feel different pains in different brainwave states by doing multi brainwave meditations. In my normal awake state I feel x group of pains, in another, not identified if it's beta or delta, I feel pins and needles all over my body moving in waves. I get this sensation sometimes by itself.
Does that mean my brain is automatically changing brainwaves to give me a break from the norm
Or
Is the other brainwave kicking in because it has been agitated by something I have done?
Either way, brain power is fascinating, how it affects your body good and bad, how it is generally ignored by the NHS as a tool to revovery.
Thanks for the writing. You are asking the right questions. Getting the answers to these questions in regard to my own body can be very difficult.
A reliable picture from the internet is difficult when what you doing is trying to blaze your own trail. A lot of the stuff I am doing is not on the internet. I am having to invent the words develop the explanations and bend a lot of people's ears. I rely a lot on other people pointing out the errors in my explanations and thinking.
William James (1842 – 1910) bother of Henry James the author proposed a theory. Emotion is determined by the movement and is controlled by the brains movement centres.
The brain is a very efficient living computer. It is constantly generating nerve impulses which can cascade into consciousness. These impulses are totally random and so the results of these impulse can be totally random. This is the conclusion I have come to noting them using Mindfulness and meditation techniques over the last 30 plus years.
Buddhist monks of the Forest Thai tradition refer to the thoughts as they come so will they go. Experience of the Alexander Technique has shown me that it is possible to turn a particular muscle behaviour into a habit. And it is possible to note a destructive muscular behaviour and change it to something less destructive. This particular muscle behaviour has thought patterns and emotions associated with it.
It is a chicken and egg scenario what came first the muscle pattern or the thought pattern or did they just appear together as the result of some random thought pattern. Human motor Control 2rd edition by David A. Rosenbaum ISBN 978-0-12-374226-1 is a book worth reading. I got my copy off Amazon.
Nature has published an article on the micronome and brain states.
The interplay between the intestinal microbiota and the brain
John, you are so right. If you take it to cellular level, every cell in our body is created to do a certain function. When they get renewed, the new ones follow the blueprint exactly.
Each group of cells make a structure, muscle, bone, blood etc. The cells work together maintaining the structure and it's funnction.
Disease and illness comes along and the affected structure compensates. When it compensates a new blueprint (2) is written and this becomes the new normal.
In the short term the brain recognises something is wrong and alerts our attention, with pain, malfunction.
We try and repair it with medication, exercise, rest, but because we are not re writing the blue print back tomit's original state, the blueprint no2 then remains normal.
With your muscle habit retraining, this is what you are doing, trying to get back to the original blueprint for each affected cell in your muscle.
You can control your body at cellular level if you are taught how to do it, by just using your brain.
That is powerful.
Positive thoughts change the chemistry in the body too. Saying affirmations everyday, visualising, being thankful, your healthy body will make changes too.
I do so get fed up when I hear medics saying there is nothing more to be done, because anyone can start positivity training.
Hi johnsmith and zanna, you have both identified that pain, and pain responses can be 'trained' by positive thinking, and also by being trained to deal with pain in an educated and controlled way.
I have heard so many reports of people who have engaged on a pain management programme (they are either done as in-patient, or out patient attendances over a period of weeks) and the outcome they get from it is varied. I have a suspicion that the outcome is linked to their engagement once on the course.
As part of an M.Sc I have done I looked into brain waves, and being able to harness them to control devices for people who are unable to use their limbs. The research threw up a lot of interesting facts about how the brain works, and how it can cope and re-adjust itself given the right training. I am not professing that pain can be trained out of people, but the way it which it can be controlled can be far better when people have a positive outlook on life and things in general.
I know thinking of certain situations and how I'm going to manage and certain people (their attitudes towards pain) can affect my pain levels.
I chose a non medication journey because I want to know how my body should work, find a way to improve my life. It is hard work and often felt like no improvements were happening. But perseverance pays off.
Relaxation helps slot of pain too. It's natural for muscles to tense up with injuries, and that tensing can cause pain. Be ready for the wave of fatigue when it is eventually released. Certainly won't have problems sleeping that day!
There are lots of factors that don't help pain, I currently work in a high stress job, and that combined with the fast pace of how things can change at work are major factors in my pain management. Relaxation is important, and there is a lot of pain medication that works by relaxing the muscles, which in turn reduces the pain.
The pain management programmes concentrate on educating people to identify what triggers their pain, and what they can do to reduce these triggers. Also breathing and relaxation techniques to help to lower the (perceived) pain.
I have neuropathic pain, which doesn't have a physical cause apart from the my nerves have become damaged and so they fire off pain signals even when the affected area is brushed by something as innocuous as a feather.
If we could bottle the release of tension that causes the fatigue we could make sleepless nights a thing of the past!
Its things like this that I want to be able to bring to the attention of others to see if they can learn something that will help them. Even if others pick up on something that enables them to reduce their pain levels to enable them to sleep better then I feel it is a worthwhile venture.
Not All trials are short lived Dr Goebals first asked for Funding for 1st stage Immugloblin trials in 2005 trial completed 2008 second stage funding received 2015 he believes 3 rd stage won't be funded/completed until 2020 and will not get go ahead if agreed until 2022
I am very interested. I have DDD and other issues and contacted a doctor via Arthritis Today magazine who obtained funding for research in this area. Got a very informative answer back almost immediately. Unfortunately for me I will too old to benefit, but as this condition can be heredity my children and grandchildren may benefit. It was just so good to have this contact. Recommend the magazine too, as it gives information about who has funding awarded to research what specialty.
Thanks valerie8502, I aim to provide an informative magazine that covers a whole variety of issues, and hopefully it with it being free it will appeal to others who can then learn of certain conditions.
I know how hard it is to function every day when faced with chronic pain, and I want to provide a way to keep people informed from one main point of contact (the magazine) I hope you can find a way to help control your pain levels and that you have many pain free days!
I get a paper edition of the Osteoporosis magazine but I'm often thinking of cancelling it because it's the least of my health probs and it is so limited to Osteporosis. Which of course it would be but I've sort of lost interest in it. I rarely visit the nos forum either these days.Think this magazine idea of yours is a good one but feel it could be quite hard work for you. you would have to be careful not to let yourself become stressed. As we all know stress makes pain worse. But equally it could be enjoyable . I look forward to seeing more thoughts and comments.🌹
I know what you mean Rosepetal60, I am conscious of the amount of work that it will take, but I also think it would be therapeutic as well. I enjoy finding out information about my condition as I find that helps me to stay positive. This type of information could help others stay positive with their conditions too.
I am currently working in a high stress job, (although at the minute I am working part time due to my recovery from surgery) and I have broached the subject of being able to reduce the stress in my current job, but my employers are not sympathetic to this and don't understand the effect that stress has.
The more feedback I am getting I am realising how much people would like to see something, which has inspired me to be able to use my skills in positive ways, and also I would be more in control of the stress, hours worked etc... whilst being able to give something back to other sufferers.
In time if the magazine grew enough, I think it would be good therapy to involve other sufferers so that they could work on and contribute to the magazine, (I will always welcome contributions from sufferers to the magazine) which would then allow it grow further but not add too much extra work onto my own workload.
I totally agree with you Zanna, the phrase pain suffer, does isolate individuals and give a negative impression. A lot of people I have spoken to who manage pain don't want to feel isolated from their community, they want to be active and part of their local community. Being able to describe people in a positive way, and in a way that makes them and the community feel together should be encouraged, and I would welcome any suggestions to start the ball rolling to think of a way that people are happy with to be described.
There is a market I think for a pain magazine that can cover the different aspects of pain,you need to relate to pain associated with Arthritis and then pain associated with fibromyalgia etc.
I think generally that if you put a magazine out covering different types of pain and conditions it will be appealing to a large audience. Also it could actually help people who only look at things that can help their condition. It may open up ideas to try a treatment usually used for another condition and so on.
People may also find comfort in reading another person's take on how they deal with their own situation at home ,work families etc.
Thanks formula1111 That is the aim and purpose of the magazine that I am going to be producing. I have found that a lot of people can find comfort in the stories of others, and relate to it.
One of the big barriers with any chronic illness or disease is that at times it can feel you are treading the road alone. Not all families and friends are supportive, and that only makes things worse. Being involved in a facebook or online community is good, but very often these are restricted to people who have a similar condition. I find that by having a broader view will enable people to see that they are not on the road alone, that there is support out there, and how much is being done (and can be done) regarding a condition. (even giving options to explian and explore treatment options that can then be discussed with a medical professional.)
At the end of the day if I can produce something that is free to download and read, and has a broad range of content then it is more likely to be read and picked up by families and friends too, (and maybe healthcare professionals?) which will help with the understand of chronic conditions. At the end of the day people who have these conditions want to remain as active a part of their local community as possible without any 'stigma' being involved.
I see a lot of the posts are from a year ago and getting closer as I keep reading. I was wondering if you got your magazine up and running yet? I would love to read it!
Hi bettyfl, being honest I've not got it up and going just yet, but it's something that I am still wanting to produce, and maybe keep the format in an easy to digest way.
My next move will be to find out how people would consume it, would it be consumed in one go, or picked up and read at 'coffee time'
I would also want to include everyday people as contributors to help build a community type magazine.
Any format would be greatly appreciated. We all need to find out as much as we can. You could do a blog, a real magazine, an online book, anything. I would love to be someone to help contribute as a person in a community type magazine as you said. I have plenty to say with about nine years now of endless searches, treatments, medications, and still searching for an end to this horrible pain. Thank you for replying!
Let me know when you get it up I will be launching a CRPS Global Awareness Campaign shortly using facebook and youtube. I can put a link on them for you
Hi Kevscar, I'm interested to hear about your campaign, I am also in the process of producing an animation to explain what CRPS is. I am aiming to make it 30 seconds to one minute long. If you need any help with creating any animations or videos please let me know. I can make my animation available to you if you want.
Hi Ru55ell The video is here still got to put credits and contact page at the end
That magazine would be great if you can keep people with chronic pain updated on existing and new pain relief treatments.
I Think it’s a really great idea!!!!!! I’m sure a lot of other people do too. I haven’t seen many if any more exist, Go on give it a go I’m sure a lot of people will be only to glad to help you out..
Yes I agree that a magazine with new research and articles would be easier to navigate than a network for me. I would definitely download it and what we don't hear often enough is a positive stories from people who have got rid of their pain, which would be very helpful. Keep us updated.
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