So-called 'Palliative Care' is not all it's c... - Pain Concern

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So-called 'Palliative Care' is not all it's cracked up to be.

Herbertt profile image
Herbertt

Morphine, Fentanyl, Ordine, Endone, and Panadol had absolutely no effect in reducing the pain of a tooth extraction which had me in a hospital bed for a week.

The morphine dosages were usually 10mg, but on a couple of occasions it was 20mg ~ with zero effect.

I have a few months to live as I have leukaemia, and now that I've learnt there is no such thing as palliative care in my case, needless to say I will be making my own arrangements when the pain from leukaemia starts to make itself known to me.

Regards

Herbert

10 Replies

Hello.

I'm sorry to hear of your illness and hope you get the care and support you need to allow you a comfortable end to your life.

Regarding the tooth extraction you may have suffered a dry socket, where the blood clot falls out and leaves the nerves and bone exposed. It is extremely painful. This only happened to me once, but the treatment I received was for the socket to be packed with Alvocure. Let a dentist advise as there are other treatments too. Analgesics don't touch this this type of pain.

Herbertt profile image
Herbertt in reply to Aslan06

Thank you, Aslan06. My platelet count is very low - around '10' - when a healthy person's count is around 300. This means there's very little congealing and scabbing of blood. At no time did the dentist mention the hazards of 'Dry Socket' and that I should make sure to keep the packing he put in there tight and firm.

Cheers

So sorry to hear this precious time in your life is blighted by inadequate pain relief. I know very little about these things but have you discussed your fears with the people in charge of your care ?

Even 20mg of morphine isn't an enormous dose though large for someone who has not been on it before. When I took morphine e for a chronic pain condition I was on 160mcg of slow release daily but had 5mg of liquid morphine up to 5 time a day if needed.

Please discuss it with someone.

Dee

Herbertt profile image
Herbertt in reply to deejames

Thank you for your generous interest, Dee. I'm 74 and into my 11th month of chemo-therapy (Azacitidine), and I've been feeling really well lately. No aches or pains, and the only medications I'm taking are antibiotics to prevent bacterial and fungal infections. If there is a pain problem it will be a little further down the line.

From my reading I've learnt there's a panic on about doctors giving patients too much pain-relieving palliative care, almost to the point where it has become politically incorrect to give patients the full dosages they need.

I have a 'team' of palliative care doctors and nurses waiting for me to give them the go-ahead should pain become a real problem for me.

Thanks again

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Hi Herbert and I am so sorry to hear of your illness. I am wondering if you are getting all the help available from palliative care? As far as I'm aware you should have a team looking after you consisting of a doctor, nurse etc. Your care should be patient centred and aimed at pain control and following your wishes would be considered the most important. Aren't you getting all this?

If not I would have a word with one of your team and tell them what you want and need. They should also give you the option of time in a hospice to give you a rest and the chance to get your pain under control.

I wish you the best. x

Where are you? Palliative care is really good where I am. Take control yourself by calling your nearest hospice. They have tons of help and the facilities to deal with your condition. I find they also have a lot of influence when it comes to getting things done fast within the healthcare system. I'm stage 4 myself and they've been great. Good luck! Don't suffer alone!

Herbertt profile image
Herbertt in reply to Corrianne

Hi Corrianne! Thank you for the encouragement. You've raised my spirits.

The hospices in my area take you in for short periods where they alleviate 'breakthrough' pain that the home palliative care drugs aren't sufficient to deal with.

I was given 1 year at most because of my age, but here I am at 11 months and going Gangbusters! The doctor has now revised his original prognosis and is very generously allowing me to continue on for another 6 months or so ... (I'm laughing).

All the best

I'm fed up of patronising health professionals and booklets on chronic pain etc. I was fit and healthy until age 49 and had been RGN for 33 years. After being pass the parcel with cramping in feet, back and urine retention was finally diagnosed with transverse myelitis, that took 3 - 4 years as Drs don't listen. Now 14 years later started with sit problems with sciatica type pain but kept active but even housework was very difficult and live alone as widowed. Had MRI of lower spine which came back nad and put down to chronic pain by gp. Went to private physio belonging to spire which I paid for and fibromyalgia was suggested. Referred to pain clinic who said to do with myelitis and referred me to phycotherapist who said I didn't need her as medical problem. Now 16 months later and 9 wrong referrals by gps saw specialist who turned out to be wrong one but has been trying to treat me. After MRI of hips and pelvis finally diagnosed with bilateral great trochanter bursitis which is extremely painful. Had steroid injections but only lasted 10 weeks and they affected my skin and hair has thinning. Just finished a course of shockwave therapy which has increased pain but told that is normal. Shockwave can take 3 months to work so it's wait and see but because of delay my symptoms have progressed and extra walking has aggravated my hips and back. Good luck to everyone and don't be fobbed off with it's just chronic pain.

Herbertt profile image
Herbertt in reply to 7774

You're certainly carrying around with you a more taxing burden than I am, and I know from a neighbour of mine who for years has suffered from chronic pain, that the palliative care industry is more smoke-and-mirrors and smiling assurances than practical efficiency in dealing with actual pain.

All the best to you, 7774

Herbert. Thinking of you. Are you ok? X

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