Pain meds poll

[Saz94]

I am curious about this, especially because the draft nice guidelines don't say anything about pain medication.

Forgot to say in the title - if you don't have ME yourself, please feel free to answer regarding your loved one who has ME.

If there's any options I've omitted to include then please tell me.

 

[lunarainbows]

Could you make it so we can choose more than one?

 

[Saz94]

Could you make it so we can choose more than one?

Done. That was my intention but I forgot the setting!

 

[lunarainbows]

I take 3, all on prescription - Lidocaine patches, Paracetamol and Nortriptyline. I would not be able to write or use my phone without it now (especially the Lidocaine which has been a godsend, especially once I started being actually prescribed it on the NHS instead of having to buy it from abroad at a weaker percentage).

I didn’t realise there wasn’t much in the pain part of the guidelines.

 

[It's M.E. Linda]

I am more
‘my pain is usually controlled by over the counter meds’
but I selected the final option anyway.

 

[Creekside]

I did suffer from neuropathic pain, but I treated that quite well with LDN, and after a year or so, I no longer had that pain. I still may develop it when my other ME symptoms are severe, but it passes on its own.

 

[Kitty]

I sometimes take paracetamol (as well as tramadol at night), but it's not on prescription. Is there a reason you phrased it that way, @Sarah94?

Mine used to be prescribed, but the NHS has tried to stop providing medications wherever possible that can be bought cheaply over the counter in a wide range of shops. Since I only use it occasionally anyway, I didn't raise any objections when it came off my repeat list.

Although my consumption of tramadol is pretty low, I'd be very worried if it were withdrawn due to concerns about opioids. My sleep's already disrupted to some extent by pain, and it would be so much worse without something that does significantly reduce it.

 

[NelliePledge]

I don’t have really bad pain so I get by with paracetamol. I also take CBD at night.

I have low dose pregabalin on my prescription but stopped taking them 2 years ago due to side effects exceeding benefit.

If I have a flu symptoms episode the paracetamol wears off before I can take another dose I would probably take co codamol if I really had to but codeine doesn’t suit me too sedating and gives me a headache.

 

[Saz94]

I sometimes take paracetamol (as well as tramadol at night), but it's not on prescription. Is there a reason you phrased it that way, @Sarah94?

Mine used to be prescribed, but the NHS has tried to stop providing medications wherever possible that can be bought cheaply over the counter in a wide range of shops. Since I only use it occasionally anyway, I didn't raise any objections when it came off my repeat list.

Although my consumption of tramadol is pretty low, I'd be very worried if it were withdrawn due to concerns about opioids. My sleep's already disrupted to some extent by pain, and it would be so much worse without something that does significantly reduce it.

The reason I made the poll is because I'm concerned that the draft guideline doesn't say anything about prescribing pain meds.

Your paracetamol isn't on prescription, so, there'd be no worry that you might lose access to it.

(However, I suspect that this poll will under-represent the number of PWME who require pain meds, because forum participation skews towards people who are less severe.)

Oops, I didn't even realise that tramadol is an opioid, hence why it got its own category.

 

[DigitalDrifter]

Over the counter pain meds don't work on my ME pain. I use to take Gabapentin but it doesn't prevent payback, and often makes me exert myself. While on pain meds I don't feel the early signs of over exertion.

Tramadol gives me bad constipation and severe skin irritation.

 

[Saz94]

Oh... Also just realised I forgot to give an option for "I am on pain meds but it's not enough to control my pain and my doctor won't do anything more to help me"... so this is a pretty useless poll really...

 

[Kitty]

Your paracetamol isn't on prescription, so, there'd be no worry that you might lose access to it.

That makes sense, thanks for the clarification.

Also just realised I forgot to give an option for "I am on pain meds but it's not enough to control my pain and my doctor won't do anything more to help me"... so this is a pretty useless poll really...

Not at all, and making a poll is a lot harder than it looks! (I know – I've tried and abandoned the effort once I'd tied myself in knots!)

 

[Kitty]

Oops, I didn't even realise that tramadol is an opioid, hence why it got its own category.

It's described variously as an opioid and not an opioid. It's converted within the body to a substance that works on the opioid receptor*, so effectively it has a similar mode of action.


*Massive oversimplification of a topic I don't really understand!

 

[alktipping]

i take trammadol for pain caused by A S and some paracetamol for some of the more severe headaches sinus pain but in a decade of going back and forth to the doctors i never found anything that helped with the pain caused by M E . doctors seem to completely ignore that area of pain in my personal experience .

 

[Peter T]

I used to take various medication, when I still worked part time for migraine, though my impression was they only served to delay attacks, and ultimately lying immobile in a darkened room was the only solution. However they could be used to get through my days working. My migraines can occur both as a feature of my food intolerances, which I now manage well, and as part of PEM; both post date the onset of my ME.

When I was still well enough to travel my then GP was good at prescribing pain killers that like the migraine meds could be used to enable me to complete a journey. I can not remember now what I used to take.

Any other musculoskeletal pains it is normally associated with PEM, when resting seems the best solution. Pain varies but it is normally only the chostochondritis that is severe enough to be incapacitating, but as this too is a feature of my PEM, when rest is the only long term solution, being immobile in a darkened room.

Now the only pain medication I take is Lemsip which as long as the pain is not too bad helps me to get to sleep when resting in response to PEM. I wonder if this is in part because it helps with the cold/flue like symptoms that also is part of my PEM.

 

[JoanneS]

I take tramadol and over the counter paracetamol on an (as needed) occasional basis. Doesn't control pain, just diminishes it to a more bearable level. Flu like aches, muscle and joint pain are constant symptoms.

 

[Lilas]

For my chronic pain, I take each day "little" dose of amitryptiline (mostly for sleep), pregabalin and mirtazapine. If I forget the last one, I will know soon because my pain will increase. When I'm in crash, I have no choice, I have to take one dose of demerol (opioid).

NB: I'm always in pain, those meds only help me "to a more bearable level".