Sometimes

[nedd]

Just getting to the end of the day is

Success

Throwing this out it's a bit of a read for a foggy brain. But thought provoking maybe.

healthrising.org/blog/2013/...

[Mdaisy]

Very interesting nedd - this is a big subject to cover!

Opioids in Fibromyalgia is definitely a debate with many different opinions within the Fibro community and everyone will have their own views!

I completely understand the desperation of experiencing chronic and severe pain, so know that to relieve this many turn to strong opioids. However, long term whether they are suitable or not is a common discussion.

Reports that people with Fibromyalgia have less Opioid receptors in our brains therefore long term use of opioids may not be effective and also the benefits may not outweigh the side effects plus potentially for addiction.

I take Tramadol as per the EULAR Fibromyalgia Guidelines and do not take anything strong long term but as I say if I am in agony then a small amount of Oramorph helps take the edge off.

Post to EULAR Guidelines for Fibromyalgia 2016 below;

healthunlocked.com/fibromya...

I also know people are being refused stronger medications and/or weaned off opioids at the moment but without any medication for pain relief to replace these. I personally think nobody should be left in pain under any circumstances but understand that healthcare professional may be looking at research and wondering what benefits strong opioids actually have.

It's definitely a balancing act and this article also mentions opioid induced hyperalgesia. However, I think if they want to reduce the amount of people with Fibromyalgia on opioids, they should get educated about the condition plus provide sufficient financial resources for research to help the Fibro community!

I wonder what the survey results will be from the link on that page .... and what others think about this?

Emma

[nedd in reply to Mdaisy]

It's interesting the differing take we all have.

I picked up the bit that said

In fact, a recent study suggesting ME/CFS patients in high levels of pain tend benefit much less from pacing and coping strategies that help other patients, suggested the pain in ME/CFS may be significant than we realize. All the better, then, that researchers are looking at what really works with pain in FM(ME/CFS).

And thought, thank goodness someone acknowledges that. Because I develoved ME/CFS. Five years into my pain journey. And it has definitely had an impact on how I walk along side the beast.

The lamentable thing is, if we all had access to knowledgeable health professionals we could have conversations with them about the best way forward for US. Feel validated and heard, we may trust thier advice. And not feel that they are dishing out "one size fits all".

I have become discouraged because for me nothing works. So I am always looking out for that light that could brighten my days a bit.

So here's to

More financial resources and help for those suffering from pain.

(I have fingers toes and noses crossed)

[DanielleGemma]

This is really interesting thank you and I also really like the picture I think it is very true!

As someone who has been on both sides of this taking stronger and less strong opioids; I found that the problem is once you commit to taking opioids you severely limit the options of what you can take moving forward. I moved onto strong opioids after my last hospital stay, and it is part of the reason why I came off all my tablets. I was worrying that my body was becoming to immune to such strong pain killers and as I am only young I was really limiting what I could take in the future when my Fibro got worse!!

I completely agree with Mdaisy they are trying to reduce the amount of Fibro sufferers on tablets in general it seems with Fibro as they aren't all that successful in reducing pain; but there seems to be no additional research or help if you aren't taking tablets anymore. All we can hope I think is that Fibro becomes a bigger issue and is given more funding as we currently know nothing about it really ♥️🌻

[nedd in reply to DanielleGemma]

I think that reviewing medication and then deciding on the way forward should be our decision. Because after all they don't walk in our shoes. And we should be trusted to know what helps. But that revolves around being lucky enough to have well informed GP or consultant. Who hears what we are saying and gives the time for the conversation to take place.

I read once how much training was given on pain. Which I can't recall now. But I was shocked dot com. At how little it was.

Go well

[DanielleGemma in reply to nedd]

Yes I agree, I think the other side to this is also being trusted. I think the problem is that they don't know what you are like as a person, I know for example I was always in and out of the doctors as the strong tablets could only be dispensed so much at a time! Was so frustrating as I work full time so missed so much work for a tablet!! Just wanted to say to my GP if you can give me three weeks at a time (or whatever it was) surely you can give me two months!! I don't think that GP's really listen to what we have to say ♥️🌻

[nedd in reply to DanielleGemma]

I sometimes wonder if GP's aren't as frustrated as we are at the inability to dispense more at at time. They are restricted by guide lines. As I say it's about being listened to and trusted to know what works for us. I have never had a problem worrying about addiction, I think if something helps make the pain more tolerable. Then bring it on. But they have to give us the time to know us. To trust us.

[DanielleGemma in reply to nedd]

I agree I think for my GP it was frustrating that I could only get a 10 minute slot but I had so much I needed to talk about. I think it always felt rushed xxx