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We want to hear from you: please tell us about your experience of the online community.

I need your advice! Should I build a pain solution platform?

SF100

I've wrestled my way through 1000+ books, blogs, doctors appointments and other resources to try and find a method to reduce a number of pain complaints that developed over 3 years ago. I found the difficulty to filter out what is relevant in a world of available information, the often limited support / knowledge of medical specialists and difficulty in keeping an overview of what I've tried and read about absolutely exhausting, while dealing with the pain was exhausting enough. I would like to prevent anyone from having to go through the same.

I am considering building a platform, and I need your feedback to let me know if there is a need for this! The platform would comprise the following features:
- Canvas with overview of causes and treatments of (chronic) pain, with short descriptions that are backed by scientific literature
- Curated resources database of apps, books, online courses (with upvoting by users)
- Triage through x questions that filter out irrelevant information
- User log, with a treatment log (what have you tried and with what effect) and pain diary (which complaint, when and triggers)
- Doctor report, with a summary of your complaints, historical timeline and what treatments you've tried (plus an explanation to the doctor about pain and that it's not "all in your head")
- Community of groups with similar complaints and trying out similar treatments

It would be great if you could share your thoughts and / or other forums where you are participating in. The more feedback the better! Thanks in advance.

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Comments

Tori_Scope

Hi @sf100

Welcome to the community!

Am I right in thinking that you're looking to get some informal feedback at this stage? What would you do with any feedback provided by our members?

I've moved your post into our research and opportunities category, as that tends to be the only category into which we allow this kind of content to be posted.

SF100

Hi @Tori_Scope,

Thanks for your comment! Absolutely correct, I'm looking for informal feedback that allows me to take a decision whether or not to pursue this idea

You can ofcourse build everything in theory, but I'd like it to really be of great value to everyone in practice!

Tori_Scope

No problem, thanks @SF100

Best of luck with the project!

Cartini

woodbine said:

My conditions aren't pain related thankfully but if they were I would ask my GP to refer me to the pain clinic at the local hospital.

I wish my surgery would refer me to the pain clinic, their mantra at the moment is physiotherapy, physio, physio, physiotherapy

Cartini

woodbine said:

@Cartini have you tried another GP at the surgery?

@woodbine,
I have a different GP for every appointment; the only consistency between them is their push for physio. I have an appointment with a different GP this Thursday, one who specialises in muskuloskeletal conditions.

Cartini

Johnmduk1 said:

@Cartini no disrespect to gp have you sought a second opinion?, also u might try one of these private diagnostic clinic which can xray part causing problem

@Johnmduk1,

I had an MRI scan a few weeks back and this resulted in a diagnosis of lumbar spinal stenosis (arranged by the physio specialist at the surgery). It`s in my records, but whether all Drs are aware is another thing.

I have a phone appointment this coming Thursday with a musculoskeletal Dr, I`ll see what he / she has to say.

Alanh

I just get told that I need to re-programme my brain as I am not really in that much pain and to keep going slowly. I believe this is utter rubbish with my Fibromyalgia and M.E.

Cartini

Alanh said:

I just get told that I need to re-programme my brain as I am not really in that much pain and to keep going slowly. I believe this is utter rubbish with my Fibromyalgia and M.E.

I had my appointment with the musculoskeletal Dr and he more or less said similar : "it isn`t really pain, your mind just thinks it is". I`d like him to chat with my brain when I`m bent over double trying to relieve the crushing pain at the base of my spine.

One thing he did do is prescribe 15mg of Meloxicam a day. Time will tell.

L_Volunteer

The whole "it's in your head" vibe is the thing that annoys me the most living with chronic pain. I live with fibromyalgia. Thinking of you all!

Rachel10876

I suffer with pain 247 there is no relief for me at all but I wish there was I am on a lot of medication for it too. This is my daily struggle. Which is really pushing me to my limits. X

SueHeath

Just joined this thread - i have my own theory lately, as i have been waiting for different appointments or things to start happening with the hospital - with each appointment between two hospitals, i have noticed it's a years wait for every thing, the doctors just seem to be jollying me a long "keep taking the tablets" and "Keep moving" x

chiarieds

Hi @SF100 - altho your aim is admirable, I would suggest that much of the work has been done by those in the medical field. I refer to NICE's guidelines about chronic pain published in April 2021. Please see: https://www.nice.org.uk/guidance/NG193 This will, I hope, continue to evolve, as personally I can't see how fibromyalgia for example can be considered primary chronic pain ('in which no underlying condition adequately accounts for the pain') when there's research suggesting why fibro sufferers experience pain such as here: https://pubmed.ncbi.nlm.nih.gov/33409721/#article-details

Whatever we think, our GPs & specialists will follow these guidelines, & canvas for changes as their knowledge about different conditions evolves, such as with the ME association, which I read about a while ago. There's also concern about the current NICE guidelines in relation to fibromyalgia: https://fmauk.org/latest-news-mainmenu-2/articles-1/1444-fma-uk-statement-on-nice-guideline-changes

It can also be difficult to be objective when looking at the vast amount of medical info available, e.g. even looking at a medical database & finding relevant research that has been peer reviewed, & where there's no conflict of interest, or which is a reputable journal in which it may have been published? This, on the whole, should be left to the medical experts.

As many will attest, even with the best will in the world, our Drs may still advise treatments where 'trial & error' is still a factor; we're all individuals, & what may help one person may not help another even with the same condition. This is why we need to discuss pain with our Drs who know our medical history. And I would suggest this rather than giving an 'explanation' to a Dr about pain as I fear this approach could alienate the very person from whom you're seeking help. Keeping a pain diary however is an excellent suggestion which could prove helpful. Also a brief history about complaints could be made by the patient themselves.

On a practical note, there are some reputable website's that give resources about living with pain, e.g. from the Physiotherapy Pain Association: https://ppa.csp.org.uk/content/links-people-living-pain

SueHeath

chiarieds said:

Hi @SF100 - altho your aim is admirable, I would suggest that much of the work has been done by those in the medical field. I refer to NICE's guidelines about chronic pain published in April 2021. Please see: https://www.nice.org.uk/guidance/NG193 This will, I hope, continue to evolve, as personally I can't see how fibromyalgia for example can be considered primary chronic pain ('in which no underlying condition adequately accounts for the pain') when there's research suggesting why fibro sufferers experience pain such as here: https://pubmed.ncbi.nlm.nih.gov/33409721/#article-details
Whatever we think, our GPs & specialists will follow these guidelines, & canvas for changes as their knowledge about different conditions evolves, such as with the ME association, which I read about a while ago. There's also concern about the current NICE guidelines in relation to fibromyalgia: https://fmauk.org/latest-news-mainmenu-2/articles-1/1444-fma-uk-statement-on-nice-guideline-changes
It can also be difficult to be objective when looking at the vast amount of medical info available, e.g. even looking at a medical database & finding relevant research that has been peer reviewed, & where there's no conflict of interest, or which is a reputable journal in which it may have been published? This, on the whole, should be left to the medical experts.
As many will attest, even with the best will in the world, our Drs may still advise treatments where 'trial & error' is still a factor; we're all individuals, & what may help one person may not help another even with the same condition. This is why we need to discuss pain with our Drs who know our medical history. And I would suggest this rather than giving an 'explanation' to a Dr about pain as I fear this approach could alienate the very person from whom you're seeking help. Keeping a pain diary however is an excellent suggestion which could prove helpful. Also a brief history about complaints could be made by the patient themselves.
On a practical note, there are some reputable website's that give resources about living with pain, e.g. from the Physiotherapy Pain Association: https://ppa.csp.org.uk/content/links-people-living-pain

Your BACK !!!!!

armandd

SF100 said:

I've wrestled my way through 1000+ books, blogs, doctors appointments and other resources to try and find a method to reduce a number of pain complaints that developed over 3 years ago. I found the difficulty to filter out what is relevant in a world of available information, the often limited support / knowledge of medical specialists and difficulty in keeping an overview of what I've tried and read about absolutely exhausting, while dealing with the pain was exhausting enough. I would like to prevent anyone from having to go through the same.

I am considering building a platform, and I need your feedback to let me know if there is a need for this! The platform would comprise the following features:
- Canvas with overview of causes and treatments of (chronic) pain, with short descriptions that are backed by scientific literature
- Curated resources database of apps, books, online courses (with upvoting by users)
- Triage through x questions that filter out irrelevant information
- User log, with a treatment log (what have you tried and with what effect) and pain diary (which complaint, when and triggers)
- Doctor report, with a summary of your complaints, historical timeline and what treatments you've tried (plus an explanation to the doctor about pain and that it's not "all in your head")
- Community of groups with similar complaints and trying out similar treatments

It would be great if you could share your thoughts and / or other forums where you are participating in. The more feedback the better! Thanks in advance.

Good luck.

jinnty

Hello, I think this would be a good idea, especially for people new to pain, as I know when I was first hit with my pain, I learned off an older gentleman that I knew how to “accept “ it and roll with it. I really think a book explaining about chronic pain and the different types of pain would be great.