Treatment - morphine for severe pain

S

Sallycatherineharris

Established Member (Voting Rights)
Can I ask if anyone has been given morphine to help with their dire pain and malaise. I’m taking codeine and pregablin plus duloxetine and nortriptyline. But I’m in dire agony now nearly all of the time.

I’ve had a small bit of a friends morphine which helped me immensely but as yet cannot get anything more prescribed that i am on already.

I’m in tears almost every day. I’m in the UK.
 
You have my profoundest sympathy.

In general I am lucky not to have a significant pain component to my ME, though I did have a period of several years with bad ‘chostochondritis’ type pain associated with rolling PEM, which left me lying motionless for days on end in a darkened room. This has eased now but it gives me a hint of what life with constant pain is like.

Sorry if I am stating the obvious, but if you have not already attended a pain clinic as @Kiristar raised, it might be worth asking your GP about this. Not all GPs are well versed in pharmacological pain management, and though they do not always help there are also coping strategies that may be worth trying.

Unfortunately the NHS now puts pressure on doctors to steer clear of opioids for chronic pain. It feels a bit that this blanket response to the historic over prescribing of opioids has left a lot of people without any working alternative. NHS England says “Opioids are very good analgesics for acute pain and pain at the end of life but there is little evidence that they are helpful for long-term pain. Despite this, they are widely prescribed for this reason – opioid prescribing more than doubled in the period 1998 to 2018. This has been referred to as an opioid epidemic in the UK, similar but not at the same scale as the opioid crisis in the USA.” see https://www.england.nhs.uk/south/info-professional/safe-use-of-controlled-drugs/opioids/ . Obviously not everyone agrees with this and I wonder if a specialist might be more willing that a GP to consider the full range of options.

It is deeply problematic that there are virtually no doctors with experience with and understanding of severe ME/CFS and related conditions.
 
I have severe FM pain (x30 yrs and defined by # of body regions inputting pain signals) and managed to get my doc to prescribe low dose (5mg/day) methadone which I took for 20 years.

After I tapered off methadone in 2021, I realized it was causing some hyperalgesia.

I now use tizanidine and if needed, clonazepam, in small doses for pain but those cause dizziness or are sometimes ineffective. I guess I have to tough it out on some days while waiting for a better drug to surface. FM pain treatment medications atm lack efficacy.

the good thing about methadone is that it is not something where you need more it over time. It is used for harm reduction in narcotics addicts.

Here in the US, I think anything stronger than hydrocodone, you get referred to a pain clinic.
 
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I've been taking an opioid for about 10 years. I wasn't taking my whole prescribed dose (I'm terrified of becoming addicted to anything and then having my prescription removed). My pain was getting worse and I decided I should consider raising my dose to maximum, but then someone told me about hyperalgesia, and suggested I try reducing my dose slightly instead, and then raise it again only if reducing made pain worse.

en.wikipedia.org

Hyperalgesia - Wikipedia

en.wikipedia.org en.wikipedia.org

When hyperalgesia has been produced by chronic high doses of opioids, reducing the dose may result in improved pain management.<a href="https://en.wikipedia.org/wiki/Hyperalgesia#cite_note-27"><span>[</span>27<span>]</span></a> However, as with other forms of nerve dysfunction associated pain, treatment of hyperalgesia can be clinically challenging, and finding a suitable drug or drug combination that is effective for a particular patient may require trial and error. The use of a transcutaneous electrical nerve stimulation device has been shown to alleviate hyperalgesia.<a href="https://en.wikipedia.org/wiki/Hyperalgesia#cite_note-28"><span></span></a>
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When I reduced my dose my pain reduced, and I didn't have to take more of the opioids after all.
 
so sorry you’re in so much pain I hope you’re able to get help.

A small word of caution re pain clinic to Perhaps consider trying to connect with a local me/cfs group either on Facebook or the MEA have a list - just before you rush into asking for a referral to see what others with MECFS have experienced there as I think they are maybe not all the same in terms of philosophy and approach.

I know my local one is heavily BPS based and comments given after I asked on my local fb group came back saying they were just interested in mindfulness, exercise and deprescribing meds not giving more
 
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Peter T said:
Unfortunately the NHS now puts pressure on doctors to steer clear of opioids for chronic pain. It feels a bit that this blanket response to the historic over prescribing of opioids has left a lot of people without any working alternative. NHS England says “Opioids are very good analgesics for acute pain and pain at the end of life but there is little evidence that they are helpful for long-term pain. Despite this, they are widely prescribed for this reason – opioid prescribing more than doubled in the period 1998 to 2018. This has been referred to as an opioid epidemic in the UK, similar but not at the same scale as the opioid crisis in the USA.” see https://www.england.nhs.uk/south/info-professional/safe-use-of-controlled-drugs/opioids/ . Obviously not everyone agrees with this and I wonder if a specialist might be more willing that a GP to consider the full range of options.
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My own perspective on this is a bit different. I don't think for most doctors it is a matter of pressure, but rather a considered view based on experience and advice from pain teams. Around 1980 it was generally understood that opiates were more trouble than they were worth for chronic painful conditions like rheumatoid. We had about 500 patients with major chronic pain problems and none were on opiates. That was based on the experience of our colleagues over decades. Even codeine was considered more trouble than help - and that was based on patients' reports rather than anything.

Dextropropoxyphene started to become popular as part of distalgesic but it was never clear how useful it was. Dihydrocodeine had a fashion as DF118 but the side effects put people off in the end. The message seemed to be that once you get stronger than codeine things like confusion and GI side effects become unmanageable long term.

Around 1990 everything suddenly changed in with the appearance of pain teams who went round hospital wards 'to ensure all pain was adequately controlled'. Rheumatoid patients who were in hospital for acute problems were prescribed slow-release morphine. A range of other opioid options became recommended for us to use in routine clinics like fentanyl patches.

But by the time I retired in 2010 this policy was already being reversed - for the reasons given in the article Peter cited. The pain teams who had been so enthusiastic about opiates and who had ridiculed traditional caution in 1990 went back to that position.

It may be that some people with chronic pain can get useful benefit from opiates but rather than feeling pressured to prescribe a certain I think most doctors base their view on seeing expert colleagues say that they had tried the wider use of opiates and failed.

But it does highlight the disaster of not having a physician-led ME/CFS service, which might allow a more intelligent approach for managing pain.
 
Having had FM for nearly 30 years, I have been on most pain meds at some point. I would say that, if it is better pain meds you need, then it is a pain consultant you need to see, rather than being referred to a pain clinic. The latter tend to go for more physical solutions (physio etc). A pain consultant is usually an anaesthesiologist with an interest in pain, and will, in my experience, tend to be more willing to prescribe stronger/different meds.
 
My nephew has neuropathic pain after a thoracotomy and is under the care of pain consultant who is in anesthetist and he is gradually reducing opiates. My nephew experiences bone pain about 1 hour before the next opiate dose, which is recognised as daily withdrawal symptoms.
 
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