PAIN PAIN AND MORE PAIN

I've never been in proper pain Devon cat but I think I can imagine what it feels like. My wife does suffer and it wears her out.

I am still going along nicely, 3 years after they said book your funeral.

Get your results, find out their plans for you then you will be in a position to know whats what.  Hold on in there, of course you are unhappy but matters can turn round as you've said. Rooting for you. Xx

Sorry to hear about the pain. The palliative care team have helped me. They are good at ,managing pain. 
I take regular patacetamol and zomorph but just take the oramorph for breakthrough pain which works well for mr. It is good to know the oramorph is there if pain gets bad. It does not work for as long as the zomorph which is slow release.

think of you x

I'm so sorry to hear about your pain  it's hard to get side swiped just when you thought things were more stable.

I'm on twice daily zoromorph, paracetamol and oramorphine for breakthrough pain. My GP has said if I'm needing regular oramorphine the zoromorph needs to be increased. I've also been told that the palliative care team are the best people to help manage intractable pain, and am hoping to hear from them tomorrow.

Pain like that is exhausting, debilitating and it sucks the life out of everything. Luckily although it can be a red flag it's not necessarily a reliable indicator of prognosis. I was admitted to hospital a year ago for pain management and it worked really well. Good luck, I hope you'll get some relief and reassurance from your team. Xx

Oh 

I'm so sorry to hear of your nightmare pain. I'm on breakthrough pain which I had never heard of before in my life but my goodness did it help. I've read the previous replies and I too think you'd be helped by a palliative care team. 

I can empathise with you regarding pain. I have unbearable amounts of pain many, many times a day, so bad that I have to rest dozens of times a day. Even just going to my garage and back leads to an excessive pain. I'm on a high dose of morphine, I can't take any more or I risk not.being allowed to drive or function daily as a normal human being.

However, cancer pain is constant, my pain goes away when I sit down but my heart sinks when I read about your pain. My heart goes out to you Devon Cat

Tvman xx

Hi  have you got any hospice involvement? They have specialist pain management teams as well who might take you in for a few days and get you sorted or provide advice on the phone. Pain is awful, I currently have horrendous post op pain, just a week of it so far and it is wearing me down. I really hope you get a review and some sort of relief soon

Nicky

Hi tvman can I ask what dosage of morphine you are on please. I have constant bone pain and have been prescribed zoromorph and oral morph and also gaberpentin for the pain, I’m not driving as I think this is probably too much to be safe. I would appreciate your opinion. Tia rose

Hi Devon Cat & Everyone, Pain is a terrible thing to live with. I have been living with chronic pain for years. Let's  just say it has been getting worse in recent years and the Pain Team through up their hands in surrender. Eventually I contacted the Marie Curie Hospice I had originally been referred to but hadn't been there for a while. At that time I was on 90 msg slow release morphine twice a day plus 20 msg top up of quick release Morphine during the day as often as I needed it but was still in pain. I had tried all the regular painkillers and a lot of the specialist nerve painkillers like Pregabalin, Gabapentin, etc etc but nothing worked. Also my stomach was getting upset and I have liver problems so my oncologist had suggested not to take too many tablets!!

Now I'm on patches that I change once a week, I started off with Bute's Patches but soon reached the maximum I could take. Now I'm on Fentanyl Patches and they are working for the pain, however they make me so tired, I could sleep all day. I use two patches at the same time, of different strengths so if I know I am "doing" something that week I leave one off, then put it on after the day I am busy. It is the only way it works for me.

Please Devon Cat don't stop telling them how bad the pain is, there are several different things they can try, so don't stop complaining until they have found something that works for you. I waited far too long. Good luck!

The prospect of pain worries me so much that I have already been referred to the palliative care team. I spoke with the doctor, and when she heard that I was currently managing my pain with a few cocodamol a day, she completely lost interest. 

Still, it's a comfort to have them there and aware of me, ready for when I need them. 

My father in law died of liver cancer a couple of years ago and he had zero significant pain throughout. I'm praying for a similar outcome. 

Anyway, huge sympathy and much love to those of you who are suffering. If you're not receiving palliative care then please demand it. Pain and symptom management is what they're there for.

Stuart x

Hi Devon cat, I hope they have managed to get on top of the pain for you! If not please keep asking until they find you some relief!

 Hi All,

I'm not sure if this is going to be useful or not as I have not completed it but felt bound to let you know about it.  I have just started reading "Mindfulness for Health, a practical guide to relieving pain, reducing stress and restoring wellbeing" by Vidyamala Burch and Danny Penman.  It is a book with a CD of guided meditations.

I was interested to look at meditation as a way of reducing anxiety and this seemed like a good place to start.  However, Vidyamala Burch adapted this particular programme to deal with her own chronic pain having been left in a wheelchair after a car accident.  The other author suffered a hang gliding accident and was also struggling with pain.

If it works it is not going to be a quick fix as there are eight meditations and you are supposed to do each one for a week before moving onto the next one.  I am only on the first meditation and still to decide if this is for me.

One of the things that convinced me to try it is that they work with local GP's and Pain Clinics and take referrals from them.  I have put a link HERE to Breathworks, the organisation which provides these workshops, which gives you a bit more information about who they are and what they do.

If anyone else has tried these meditations or attended on of the workshops I would be interested to hear how they got on.

All the best,

Gragon xx