Hello Dawn
I am really sorry that this nerve block doesn’t appear to be working for you especially after going through the procedure to have it done.
Will they admit you again to the marsden pain clinic for pain relief again?
I noticed that you were saying about Oxycontin I have that as well as a slow release twice a day with a top up of oxynorm if required but I find that the Oxycontin works really well for me.
I was given some morphine tablets instead of oxycontin and they made me feel so ill I couldn’t walk I was so dizzy and felt sick and they took two days to wear off.
lets hope they come up with something soon
Caroline
Hi Caroline
I am glad I am not the only to claim morphine makes me feel really ill! I think you can have the nerve block up to 3 x a year but I really am not sure I would want to go thru that again, unless perhaps the consultant himself guaranteed he would do it. I really felt that I started with the registrar practising his first ever!! and the consultant went and got scrubbed up and took over!! I think unfortunately when I spent the 5 days in the palliative care ward at Marsden that I was at a disadvantage as when I went in I was on the morphine v. oxycodone trial. It was whilst there that I decided I did not want to continue. So really they were not looking outside of that. This is one reason why I would say think very carefully when you agree to a trial. I had been told I could come off at any time, or switch to the other, but I was at a stage when I didnt know what would help - so in retrospect it was the wrong decision for me.
Dawn
Oh dear, this thread does make rather depressing reading. It seems as though we have the choice of not being able to lead the life we’d like through too much pain, or not being able to through the side effects of the pain meds. Some choice.
We really need that seminar on pain relief that Deidre suggested.
For those of you on Amitripyline you may be encouraged to hear that the sleepiness and tiredness from taking it does wear off. I have been taking it for a long time now and it doesn’t affect me that way now at all. (I take 40 mg)
If any of you are suffering from nausea, I have found Buccastem very good. It’s a tiny tablet you put on your gum and it slowly dissolves. Though I’m not sure if you can take it if you have liver mets.
Dawn - your window shopping sounds great!
I was being very careful this weekend not to move too much or too suddenly when one of my kitchen cupboard doors fell onto my tiled floor and made such a loud bang that I jumped violently. If it wasn’t so painful I would laugh!
Thanks Dawn for tip on oxycodone…I will mention to my hospice nurse who is ringing back shortly. She just mentioned nerve block and I told her that they didn’t come with a good recommendation…
I am less bothered by the side effects of amytrptiline and morphine (apart from constipation which I’m still bad at controlling) than by the constant pain when I try to walk…I’m getting to the stage of wondering about a scooter myself.
I’m really furious about this whole pain business. Why is it so difficult to control? I snapped at my hopsice nurse this morning…I don’t want tea and sympathy I want some drugs to solve this…and the promises of ‘other things to try’ begin to sound hollow. As I’ve said before this experience doesn’t make me feel in the least optimistic about what happens later.
Jane
Hi everyone,
Still in hospice-been there three weeks now! The good thing about it is that they let you come and go as you please-as long as you give them advance warning.
They’ve tried a few things on me in the last few weeks but now back on Oxycontin 60mg with Oxynorm 20mg/paracetamol for breakthrough and Gabapentin,which they are changing tonight for Pregabalin.I get about 4/5 hours relief after I’ve taken them all together but then have to take the breakthrough stuff.I find that the Oxynorm only works if I take it with Paracetamol.They also suggested Methadone which is supposedly good for nerve pain but I’m a bit dubious.
Sorry to hear that the nerve block didn’t work for you Dawn and Jane I hope you get some relief soon.
Best wishes
Alli x
Sorry to hear that you all have so much pain. I’m beginning to get quite a few pains I’d rather not have but it’s nothing compared to you guys so far.
What I wondered about was acupuncture. I’m sure I read somewhere that it is pretty effective. Anybody know any more?
Take care
Anne xx
Hope you don’t think I’m being daft here but TENS also?
I know they are probably ineffective compared to medical painkillers, I just wondered if they’d help with breakthrough pain. I’m interested for future reference, in case I really need to know
Anne x
The TENs machine didn’t work for me Anne.
Alli x
Had results of MRI scan and Onc said there was no sign of spread to my shoulder-which is great!She said there was Bursitis,which is an inflammation of my shoulder joint.She was also not very happy with the radiologist,who didn’t give a report on my neck,which was scanned.She said she is going to have to review this with him.
I’m still in pain and since coming out of the hospice I’m having numbness/pins and needles in my little finger,side if hand and side of arm.Going to see Dr at outpatients in hospice on Tuesday so hopefully they will give me a new regime.
Alli x
Hi Alli,
Glad the MRI brought some good news re the shoulder pain. The osteopath told me that with bursitis icepacks are better than heat to the affected area.
I had a meeting with the pain clinic consultant the other week and he reckoned the nerve block did work partially in that I have been able to reduce the meds by quite a bit. I am now taking 20mgs a.m. & p.m. of oxycontin (the slow release one) and use actiq (fentanyl) lozenges for breakthru pain during the day. I prefer these to oxynorm because my pain comes on very suddenly and they work a lot quicker. I prefer control this way than upping the oxycontin because my pain varies a lot from day to day and I just hate taking more than I need. I keep meaning to ask him or the macmillan nurse about a Tens machine - I actually have one but would like to know the best way to use it - where to place the pads and for how long and how often. I have noticed though that since having the nerveblock I get a lot more pins and needles than before. He also has said he will be happy to repeat the procdure when I am ready for it and has promised he will do it himself and make sure I am given enough local anaesthetic before starting!!! He said the norm is around 10mls but I needed 25mls.
Hope the appointment goes O.K. on Tuesday Alli.
Dawn
xx
Thanks Dawn-it sounds like you are in control of your pain quite well.I think I’ll ask about the lozenges on Tues because the Oxynorm/Paracetamol does take about half an hour to kick in.I’m on 60mg of Oxycontin twice a day and 20mg of Oxynorm.
The physio showed me how to use the TENs machine but I wasn’t getting any benefit from it.
Alli x
I was in terrible pain last night!The Oxynorm/Paracetamol don’t seem to be working anymore-I hope the Dr can sort it for me tomorrow! I’m now having trouble gripping things with my left hand-it feels so weak with the pins and needles and numbness in my fingers and arm.
Alli x
Well,went to my outpatients app and saw pain Dr,who gave me two anaesthetic injections in my arm-ouch!!They only lasted about three hours unfortunately and the pain came back with a vengeance!
Going back into Hospice-just waiting for a bed.I think they are going to try me on Methadone next.
Alli x
Oh well know ones interested!
awwww alli - don’t say that. Whereabouts in your arm did he do the injections. When I had the pain block it was in my lower spine and they had to get between vertebrae with the needle and that was the problem - they found even though it looked ok on the scans they couldnt get thru the gap with the needle. I was told then for about 30% it doesnt work at all, another 30% may get a few weeks relief and some lucky uggers might get many months! They had to go in further up my spine than they wanted but I have had some relief in that I was able to reduce my meds considerably. I will have another go when it starts to worsen.
What did they say about yours - re percentage of success and when they can try it again?
Dawn
xx
This is odd! My pain block didn’t work at all - far from it, it made things worse. Also I was told a couple of years ago now by my onc on no account to use a TENS machine. My bone mets are in my spine.
I take 30 mg onycontin in the morning (slow release) and 10 mg at lunchtime (the pain specialists say ~I shouldn’t really do this, because they don’t work that way - but I have found they do for me!) and then 40 mg at night. I also take gaberpentin and paracetamol and all sorts of other stuff for hernia, sleeping etc.
In terms of the lunchtime 10mg oxycontin, everytime I have tried to stop it I am in pain, and as the understanding of pain is such a complex thing, I’m not entirely sure why they are not pleased that this has largely cracked it for me, after all I know my own body better than they do. The other positive things I’ve done is fork out on a new bed, which has helped enormously and a wonderful chair - both of these have made a significant different to me and I was able to get a grant for the chair via my BCN.
Sorry I have not replied before, but I don’t usually look under this heading.
Take care and let us know how things go with you
It mus be awful being in this amount of pain for as long as you have been
Hi,
Just got home from the hospice-been in for just over a week.They tried Methadone for the pain but that didn’t work,so back on 80mg Oxycontin/Pregabalin.Saw spine specialist at local hospital who looked at my scans and said I’ve got a collapsed vertebrae in my neck.They have given me a neck brace to support it for the moment but I may need surgery to pin spine together.He mentioned giving me injections into my neck.I will have to discuss this further with him next week.
Thanks for replying Dawn.I didn’t have a nerve block just an anesthetic injection in my arm to numb it.
Alli x
Hi Alli,
Good to see you posting and out of the hospice at last. I read about someone recently with collapsed vertebrae in neck (cant remember where tho!) who had successful surgery and it made a huge improvement. I wonder if the injections into the neck are the nerveblock type. Mine is beginning to wear off even though it was only partially successful it was good to have been able to reduce the pain meds so much. I am still managing on 20mgs day and nite of oxycontin and amitriptyline but needing to use more actiq lozenges now. Just waiting to see if it is from overdoing things or if this is the pattern before i book for another nerveblock. This pain stuff is hard - I feel I don’t want so much it makes me sleep a lot and yet I don’t want the pain.
Celeste have you tried using the fentanyl actiq lozenges during the day instead of splitting your oxycontin. They are very quick acting. I know what you mean about a decent bed and chair. I indulged in these and they make so much difference.
Dawn
xx
I had acupuncture yesterday and didn’t get any pain until the evening.It made me feel quite light headed and woozy when I got up off the bed,then I had a wonderful feeling of lightness and relaxation.I felt better than I had done in a long time.I’m going back for more next week.
Alli x
Hi,
Dawn mentioned neck surgery-- it was me!! I had a shattered vertbra which was rebuilt with superglue and screws and did indeed make a massive difference! I needed no painkillers at all after 48 hours. However I do need them now, mainly to counteract joint and muscle pain. I did have to wear a neck brace for 15 weeks though, 24/7. This post makes for very scary reading. I cannot believe you are having to cope with so much pain. Its true that pain is very subjective and difficult to treat but that is no excuse for the lack of interest some of you have encountered. I am relatively new to this as I only found I had bone mets in February when my neck collapsed. I hope you persevere until you find the right strategy for yourself.
Diana