Pain treatment studies and possible bias of efficacy for fibromyalgia (opinions on newer research

Lemon

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I read that opioid pain medicine, the strongest meds to help pain for functioning to feel better, are quite effective. I get there are dangers, but it’s like the healthcare system all has but given up since getting them “overprescribed “ maybe from pharmaceutical sales push, now after the major lawsuit or whatever happened from giving them to patients like tic tacs so getting many issues leading them to only be prescribed so rarely, to only end stages cancer or elderly or dying patients. I hear FM won’t kill you, much as the pain hurts and effects all aspects of living. Hard to buy it when obviously long term untreated pain has an impact on longevity. This article is on pain meds, and I think it should be done for other chronic pain including FM. I found it better than the ones just saying our pain doesn’t respond or that we need too much for any positive effects and vs negative effects not worth it- sounds malarkey. I think as an adjunct depending on the person and how it works it shouldn’t be ruled out completely for so many it could do potentially wonders in feeling less pain, therefor less miserable, and better able to live like normal? Thoughts always welcome for or against, and experiences encouraged if you have any! Here’s a piece of the article~~

“The use of opioids in neuropathic pain: The role of opioids in neuropathic pain has been under debate in the past but is nowadays more and more accepted; however, higher opioid doses are often needed for neuropathic pain than for nociceptive pain. Most of the treatment data are level II or III, and suggest that incorporation of opioids earlier on might be beneficial…”

Pergolizzi J, Böger RH, Budd K, Dahan A, Erdine S, Hans G, Kress HG, Langford R, Likar R, Raffa RB, Sacerdote P. Opioids and the management of chronic severe pain in the elderly: consensus statement of an International Expert Panel with focus on the six clinically most often used World Health Organization Step III opioids (buprenorphine, fentanyl, hydromorphone, methadone, morphine, oxycodone). Pain Pract. 2008 Jul-Aug;8(4):287-313. doi: 10.1111/j.1533-2500.2008.00204.x. Epub 2008 May 23. PMID: 18503626.
 

JayCS

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Hi Lemon - a few misconceptions here, I think...
Fibromyalgia pain doesn't have any impact on longevity, whilst opioids have a severe impact on health.
As opposed to the topic of the (old) Pergolizzi study, fibro pain is neither nociceptive (from inflammation or injury) nor neuropathic (nerve injury), it is idiopathic (= seemingly not due to anything) = centrally sensitized (the central nervous system overreacting) = nociplastic (pain apparently appearing 'by itself', no injury to be found).
So the Pergolizzi study has nothing to do with fibro pain - if at all with co-morbid neuropathic pain we may have.
As Tzadok & Ablin summarized in the 2020 review: "Current and Emerging Pharmacotherapy for Fibromyalgia":
"There is no evidence from clinical trials that opioids are effective in treating FMS, and the EULAR guidelines discourage the use of opioid analgesics. Only tramadol (a weak opioid with mild SNRI activity), administered alone or together, with paracetamol is currently supported by the EULAR recommendations and was found to reduce pain by 30%. Generally, it is believed that only short-term use of opioids may be appropriate in carefully selected patients, particularly those with severe FMS." Before that it says it was due to studies that Younger (2009 and later) tried out "competitive opioid receptor antagonist" naltrexone and found that low dose naltrexone (LDN) helps some fibromites.

The recent clamp-down on opioids being newly prescribed in the US and the UK (wasn't necessary here in Germany) was caused by docs and patients relying on opioids as being the easy answer, altho they aren't at all. Those writing a lot on this forum have all tried opioids and have seen how badly they work - how little they help, how bad the side effects are and how they dull our minds and thus prevent self-care, trigger-hunting, finding sweet spots, exercising etc., everything we find to be truly helpful. I've read a lot of people elsewhere who find it hard to do without them, but was they have in common in is that they have never looked beyond very few alternatives, they have a mindset of wanting an easy pill to quickly get rid of all problems. This isn't even possible in a common cold. Some illnesses for some people do have a miracle cure and in some diseases opioids are the only answer to date, but not fibro.
I found it better than the ones just saying our pain doesn’t respond or that we need too much for any positive effects and vs negative effects not worth it- sounds malarkey. I think as an adjunct depending on the person and how it works it shouldn’t be ruled out completely for so many it could do potentially wonders in feeling less pain, therefor less miserable, and better able to live like normal?
Well: Our fibro pain doesn't respond. Not even with high amounts (the sentence in the article is about neuropathic pain in the elderly, that may be the main misconception here). And the negative effects aren't worth it. I'm not sure why you think that sounds malarkey or biased: Why do you think anyone would be making that up, after it being such an easy gold mine and tranquillizing people, getting them to keep their feet still? Of course depending on the person and how it works it shouldn't be ruled out completely, and it isn't, e.g. they have pains that are not fibro pains, they have tried all ~100 other treatment types there are (all with equal or more evidence) and really are miserable all the same. But all evidence shows that opioids don't do "wonders" at all... And medical research does well to find something better, which is what they are doing.
 
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Lemon

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Do you think it may help to have a few in a bad flair and not take them daily or multiple times a day? Or if other medical conditions are causing problems as many have multiple issues along with fm. Sorry it looks like you answered this question already in your response. I appreciate your thoughtfulness. I just know it’s helped some people and don’t think it should be completely dismissed as an addictive drug when the medication can still help some people, without stopping the self care they do and maybe even helping them to do the self care if they’re not in excruciating pain that day just pondering options of feeling well again not trying to start a big thing over it as I do believe we’re all different but appreciate new research and hope for better things to come of it
 
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JayCS

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Hmm...... - Your questions are put it a general way and refer to exceptions from a rule that it's not healthy, but might sometimes be OK. Exceptions can be based on more social, political, legal grounds, or more individual, ethical, certain situations, times, needs.... I think exceptions should be allowed and they are allowed. And I think people should decide for themselves inside of these exceptions. But I'd encourage to not make it too easy for themselves or for others, as has been done in the past. You introduced your question by referring to the fact that it's a time of change and that this change might be a bit too tough for some. Like in other times of change, a new balance is necessary, and for the pendulum to swing and come to rest in a new situation it necessarily sometimes has to swing a bit more than to the newly agreed upon point of balance. So yes, it can be tough for some. And that's OK, because otherwise it won't change enough. A lot of people have come to depend more on opioids than is good for them, so I think it always has to be a mixture of a social consensus with individual decisions upon exceptions. But without knowing how bad the flare is, if it is Tramadol or one of the others, how much, how often, what medical conditions and personal problems are there it's hard to say. An exception to the rule means there is a rule.
I'll always dismiss and praps condemn it as an addictive drug, but I won't condemn the person/myself for trying it.
I'll accept that, but do everything I can to find, use and show alternatives. In such situations I myself tend to allow myself less exceptions, just to prove to others and myself that it's possible. Now if I generally answer your question with: Yeah, exceptions are OK, then I'm not doing everything I can, because it's too general an answer and can be misused. So I prefer to beg the question....
 

sunkacola

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Thank you, JayCS, for your excellent replies, which are better than what I would be able to write while saying all the things I would want to say.
 

Creola17

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I have found RSO very helpful. It's an oil made from marrijuana plants Originally made to cure cancer (it works) by Rick Simpson. It's a bit strong and I have to fight off sleepiness but I still function. If I have a bad attack I just take enough to sleep. I believe it's being studied in Brazil for fibromyalgia. The pain meds are nothing but bad chemicals.
 
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