Chronic pain - article

Such a good read, re: Chronic Pain and the NHS. And he's a man. If he were a woman, he'd really really really be fobbed off.

https://www.theguardian.com/society/2023/jun/17/my-wife-was-annoyed-i-couldnt-do-chores-or-hold-the-baby-even-the-doctors-were-fed-up-with-me-my-life-with-chronic-pain?CMP=oth_b-aplnews_d-5#comment-163132714

Such a good read, re: Chronic Pain and the NHS. And he's a man. If he were a woman, he'd really really really be fobbed off.

https://www.theguardian.com/society/2023/jun/17/my-wife-was-annoyed-i-couldnt-do-chores-or-hold-the-baby-even-the-doctors-were-fed-up-with-me-my-life-with-chronic-pain?CMP=oth_b-aplnews_d-5#comment-163132714

Heh. Just last week I was told "sorry, you have EDS so there's nothing we can do to treat the CRPS-like pain you're going to live with for the rest of your life." All while I fight to get ILR.

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I’ve never been “British” when it comes to pain. I will never understand the boasting that someone “always avoids medicine”.  I had two unmedicated childbirths when my birth plan was eensy weensy and 1. was “epidural at first opportunity”.  Oh well, as I’m well past having kids I can sort of try to get over it.

Cancer has been a rude awakening all around.  Three vertebrae in my spine have been effected, two were eroded and the third the opposite with a build up of bone.  The spine procedure I had in February has brought some relief.  But I did start taking a slow release morphine as recommended by my oncologist and pain manager (through palliative care).

I’ve been surprised how uneven the spectrum of pain medicine is.  The surgeon and radiologist brought in an anaesthetist even though they normally manage sedation themselves due to my “high levels of pain medication”. A good friend who is an anaesthetist told me I was on f-all of a dose a morphine…. I’ve since learned I really was on an extraordinarily low dose  I did increase my night dose a bit as it became necessary.

A couple of weeks ago, ahead of a trip with just my husband and myself, I went to the GP about terrible vertigo.  Of course, several weeks after an urgent set of scans to see if the cancer had spread to my brain. My GP suggested it was pain meds causing my issues. I told him I was informed I am on a low dose. He agreed but said some people are sensitive to any drop.  I followed his recommended experiment of taking my slow release morning and night…. Day 3, all vertigo symptoms were gone.

I was so relieved but also nervous regarding dependency.  My GP, who is always cautious with prescribing, gave me lots of reassurances.  I have said I’d like to taper down as I don’t want dependency and he recommend speaking with my pain manager if I genuinely decided I want off.  Reiterating my low dose and quality of life.

It’s an odd position for me. I’ve never wanted to get a trophy for not taking medication.  Yet, I don’t want to be dependent. 

This whole circus of my body is a minefield.  I hate it!  It’s awful to admit that until you experience it, you really have NO idea.  Hugs to all who suffer and frustrations with access.  It’s not overly fun when they take you seriously.  But it’s better than being blown off!  I hate the head tilt and sympathetic nods I get from doctors when they look at my letters or scans.

I’ve never been “British” when it comes to pain. I will never understand the boasting that someone “always avoids medicine”.  I had two unmedicated childbirths when my birth plan was eensy weensy and 1. was “epidural at first opportunity”.  Oh well, as I’m well past having kids I can sort of try to get over it.

Cancer has been a rude awakening all around.  Three vertebrae in my spine have been effected, two were eroded and the third the opposite with a build up of bone.  The spine procedure I had in February has brought some relief.  But I did start taking a slow release morphine as recommended by my oncologist and pain manager (through palliative care).

I’ve been surprised how uneven the spectrum of pain medicine is.  The surgeon and radiologist brought in an anaesthetist even though they normally manage sedation themselves due to my “high levels of pain medication”. A good friend who is an anaesthetist told me I was on f-all of a dose a morphine…. I’ve since learned I really was on an extraordinarily low dose  I did increase my night dose a bit as it became necessary.

A couple of weeks ago, ahead of a trip with just my husband and myself, I went to the GP about terrible vertigo.  Of course, several weeks after an urgent set of scans to see if the cancer had spread to my brain. My GP suggested it was pain meds causing my issues. I told him I was informed I am on a low dose. He agreed but said some people are sensitive to any drop.  I followed his recommended experiment of taking my slow release morning and night…. Day 3, all vertigo symptoms were gone.

I was so relieved but also nervous regarding dependency.  My GP, who is always cautious with prescribing, gave me lots of reassurances.  I have said I’d like to taper down as I don’t want dependency and he recommend speaking with my pain manager if I genuinely decided I want off.  Reiterating my low dose and quality of life.

It’s an odd position for me. I’ve never wanted to get a trophy for not taking medication.  Yet, I don’t want to be dependent. 

This whole circus of my body is a minefield.  I hate it!  It’s awful to admit that until you experience it, you really have NO idea.  Hugs to all who suffer and frustrations with access.  It’s not overly fun when they take you seriously.  But it’s better than being blown off!  I hate the head tilt and sympathetic nods I get from doctors when they look at my letters or scans.

They will only prescribe me a low dose of short acting opioid, so that means I get 3-4 hours a day where I can function a bit. The rest I want to cry from the pain being so intense. I was referred to pain management specifically to improve that and they said no. My foot swells and turns purple if I don't keep it elevated, along with the intense nerve pain. If I drive 30 minutes (to somewhere and home) the pressure from the pedals means I'm non-weight bearing for the next few days while my shoulders and wrists get increasingly painful, or I fall from the combo of loss of sensation on the soles and intense pain on the top/side. I haven't been able to wear socks or shoes in a year. Trying to find a wheelchair accessible home that we can afford is like a needle in a haystack.


There is a lot of fear of opioid dependence because of the media - but when used in a setting like palliative care it is very safe. Yes, you will experience symptoms when you stop, but will the pain also be unmanageable? Would recommend switching to an easily tapered dose when you do want to come off to minimise those side effects. But also think about the quality of life they afford you, it's just like any other medicine. I don't really develop tolerance to them so you may not either  - I've been on the same dose for 3 years, it's just my needs have changed and they won't adjust them now. (I don't want stronger, I just want long acting so it's consistent)

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Hugs all around.

There must be a more middle ground approach. In the US, something like dilaudid (hydromorphone) seems to be relatively easy to obtain. In the UK, it's strictly reserved for palliative care.