Just wanted to join in this thread......
I don't have any experience but I do know what its like to be in pain.
Wishing you all sucess with any up coming treatment/surgery and pain relief.
Thanks Diana,I really do hope it works and takes the pain away.My surgeon has said I might not get the movement back in my hand.A couple of days ago I noticed that my eyelid has drooped,so that might be permanent too!
I will be in hospital for a week then I'm going to stay with my Mum until I recover,so as soon as I get access to a computer I'll let you know if it has worked.
All I can say is it worked for my pain--and my constipation by the way which was due to spinal compression! I do hope all goes well for you-- its a little scary having spinal surgery, but my experience was all good.
Cheers, Diana x
Thanks for the reply Diana-I'm having surgery on the 4th August.My C7 vertebrate has collapsed putting pressure on the nerve which is causing my pain.They are going to remove the tumour and pin above and below vertebrate.I will have to wear a collar for a few weeks afterwards.I so hope it will take away the pain and reduce the need for all the meds I'm taking,which give me no quality of life at all!
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.
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.
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.
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.
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
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?
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.
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.
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.
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.
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.
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
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?
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.
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.
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!
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.
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
Jane I know we all react quite differently to these drugs. Have you tried oxycodone? I feel totally different on this to how I felt on morphine. It made me feel ill - don't really know how else to describe it. On Oxycodone I feel more myself, the real me. I am on 40mg a.m. and p.m. of oxycontin (slow release oxycodone) plus 25mg of amitriptyline.I also have some fentanyl lozenges & oxynorm I can top up with but so far only needing it now and then. It has been suggested I double the ami but am loathe to as I sleep 10hrs at night on it! I have reached the time in which they say you notice the difference with the nerve block if it is going to work for you. I hardly dare hold my breath but today is the best I have had in a long time. Am I just a bit slower at reacting I wonder? (hope even).
I find the pain is there usually regardless of how much or how little I do, but getting about outside finishes me off after a few minutes so I have acquired a mobility scooter so that I can get about when I feel like it. Never thought just window shopping could be such a treat 🙂
Well the collective wisdom of pain experts isn't doing much for us is it? I'm so sorry Dawn that your nerve block seems not to have worked. Alli: really hope the hospice can sort something out for you.
Me: well I'm OK if I stay indoors, sitting down...but whenever I go out and try to walk a few yards my pain starts up again..always bad enough to make me feel grumpy, weepy and irritable, and at times just nearing the threshold of what I can tolerate. So I'll be on the phone again to hospice nurse in the morning. Last week they told me there awas an alternative to amytryptiline I could try. I'm currently on 75mg amy, 20 mg morphine morning and night, top up oramorph, paracetomol, and 8 mg of dex..a lot of tablets...maybe if I just did cold turkey the pain would go??
Hope they are sorting out the pain control meds for you. If only one size fit all worked life would be so much easier for us! I spent 5 days in the Marsdens palliative care ward a couple of weeks ago to try and sort something out, but then arranging the nerveblock negated that! It is now 6 days since the nerveblock and it is looking like it hasnt worked for me :(.
Hi Dawn and Jane,
I am in my local Marie Curie hospice at the moment while they try to manage pain.Can't explain now as I have to go.
Love Alli x
Dawn...that sounds horribly tough and I do hope it works well for you so you don't have to consider it again.
Alli...pacing the floor all night...I so hope you can get some relief.
My own pain is less intense today though still restrictive...I managed little walk to local shops without arriving back in agony. I'm hoping the steroids may be working. I'm seeing a pain consultant from local hospice on Wednesday...fingers crossed.
How are you finding the oxycontin is working for you after the morphine. I was surprised at the difference I felt between the 2. Up till today I have been on 80mg 2x morning and evening. Then I can take oxynorm liquid for breakthru pain. Some days I feel I dont need so much and other days I cant get enough of it!! Today after the nerve block they have handed back control to the patient :). He has reduced it to 40mg a.m. and p.m. with as much top up as I want. Then if the nerveblock seems to have worked I can reduce the night one to 20mg and they will adjust the a.m. one depending on how I feel.
The nerve block procedure was tough. They inject local anaesthetic into the area around the vertebrae they are aiming at. In my case it was L2/3 but he was unable to find a gap between the 2 discs to insert the needle with the steroids. This was the senior registrar, but in the end the consultant scrubbed up and took over. He couldn't find a gap either so they went for one in the thoracic spine and eventually after much prodding and poking found a small gap. He said that I appear to have no gaps between most of the vertebrae now - which would account for my shrinkage! I won't know if it has worked for a few days yet so have fingers and everthing else crossed.
Would I do it again? Not sure.
I don't think I can stand it anymore.I was in and out of bed all night pacing the floor in pain.I finally broke down yesterday for the first time since being diagnosed 16 months ago.
Dawn - Morphine hasn't worked for me either and it made me feel sick for the first two weeks of being on it.Now on 15mg Oxycontin tabs twice a day,Oxynorm liquid when I need it and 3 Gabapentin a day.Also take paracetamol in between.I'm sitting here with 3 Lidocaine patches dotted about my arm and shoulder and none of it is working!!
I had radiotherapy to C7 and T11 vert but Onc says it obviously hasn't worked-great hey!!
I'll let you know how it goes with the TENs machine tomorrow....please please work!! Having a bone scan on Thursday and a CT on Friday to.
and thanks to all of you for your comments. As I said in my first post I have had extensive bone mets since 2002 and have stayed relatively pain free over that period. I had rads to upper spine and one hip some time ago which helped but recent rads to lower spine and other hip did not help. Ena I found that I started treatment for the mets with pamidronate and it wasnt until i had about 3 lots that I noticed relief of the initial pain but I have stayed with that particular bisphosphonate as it has kept the mets stable for so long. I did spend 5 days last week in the Marsden - they have a palliative care ward. About 2 months ago I agreed to join a trial comparing why some patients reacted well to morphine whilst others did better on oxycodone. I drew the morphine arm and wasnt happy about that because i had 3 months of that last year and felt so ill on it. But I persevered for a month then I couldnt stand it any more so the trial nurse agreed to switch me to oxycodone. I did feel a lot better in myself on that but had to have the initial dose increased quite a lot. I also take amitriptyline at night. Not sure if this helps with the pain but at long last am free from the spasms I used get which were quite bad. They suspect some of my pain is being caused by the bone mets and some by the pressure being put on a group of nerves along with a prolapsed disc. I am hoping the nerve block tomorrow will work and will certainly be reporting back. I really sympathise with all of you suffering pain from bone mets - it is tough! I think that if we agreed to the amount medics would like us to take we probably would be reasonably pain free but I prefer to live some of my life out of my bed!
I have been very interested to read these posts and also upset by them.
It worries me that we all are suffering so much pain, and like Jane says, if the pain is so bad now what the hell will it be like further down the line. I presume one is just knocked out on morphine.
Since bone mets were found in January this year, I have had a lot of pain, particularly in my spine. Radiotherapy to my upper spine has eased some of this pain, but the pain in my lower spine cannot be reduced at all. Not by using my current medicine of Ibuprofen, Paracetomol and Oramorph. Finally, this week, in order to get an urgent MRI scan I was admitted to hospital for a couple of days. It turned out not to be the suspected spinal cord compression but just an increase in cancer in base of spine. After some persuasion I am going to be given radiotherapy to the area.
But all this scares me - the pain is preventing me lead any kind of normal life, cannot sleep properly and the so called Macmillan pain experts can't seem to help.
What can be done..? I have recently given up the Ibandronate trial as the waiting for an hour each morning was not working for me. I have since had one lot of pamidronate and do hope this may help pain relief.
Anyone who manages to be pain -free with bony (or otherwise) mets, please post and say how..
Yes thanks Belinda.
I'm on the phone to my hospice nurse in the morning to try to see a pain consultant. I have no faith in TENS machines I'm afraid though...but might get desperate enough to try.
It is so frightening and restricting being in pain...I was hoping to have some reasonably well time off chemo. Cancer wise my spread is so much less than others but the pain is grim. The fact that this is not being easily sorted does not increase my confidence in the promises hospices make about managing pain at end stage. I can't help felling quite angry abut this though I know they all think they are doing their best.
Dawn..I think you are going to be our pioneer on the nerve block...good luck.
Thanks for the info.I see a Dr who specialises in pain at my local Marie Curie hospice.I'm seeing a physio there on Tuesday to try out a TENs machine.I started taking the Oxycontin yesterday but I'm still not getting any relief yet.The lidocaine patches aren't working either.I did have a brief moment,when I went to bed last night,when I was pain free but woke up at 6am in terrible pain again.
I agree with you Jane-it does make me feel miserable a lot of the time and I don't know about you but I just need to be left alone because I feel so agitated all the time.
Let us know how you get on on Monday Dawn.
Hi Jane and Alli..a couple of friends benefitted from having a short hospice stay..just a few days..where the staff were able to try some different meds and when doses had been adjusted they did get some considerable pain relief..apologies if you've both already tried this..just thought I'd mention it as hospice staff seem to have so much more knowledge of the various drugs. A friend with very severe bone mets pain has had some relief from ketamine..I know it's a really strong drug but she's had some relief and is taking holidays and getting out and about again.
Here's a tiny bit of info..there's lots on the web about it's palliative use. But again apologies if you've already looked at or tried this drug.
An old drug with a new role
Ketamine has been around for about 30 years and used by anaesthetists as a dissociative general anaesthetic. It activates the limbic system and depresses the cerebral cortex, producing profound analgesia, slight respiratory depression, cardiovascular stimulation and amnesia. The protective reflexes are maintained. Ketamine is an N-methyl-D-aspartate (NMDA) receptor antagonist.
It is because of the unique properties of ketamine that this drug has become of interest to palliative care physicians who are always on the lookout for drugs to assist patients with severe and sometimes difficult to control pain. It has particularly been looked at in the so called 'wind up' phenomena where there is a progressive increase in dorsal horn neuronal response to rapidly repeated, identical noxious stimuli. In clinical terms it may mean that simple touch input is converted into a painful sensation called allodynia. It can also mean that a painful response to any given painful stimuli is magnified (hyperalgesia) and prolonged. The 'wind up' appears to be mediated by the NMDA receptors and can be reduced by ketamine. It is very resistant to opioids and neuropathic agents.
Hi Jane and others
Sorry to hear you are in so much pain. Lisa had awful pain in neck, shoulders and back of head and took all the drugs that all of you say you are on including the steroids which helped a bit but she still had awful pain at times where she couldn't even think straight. She did get some relief however on a TENs machine when she was in hospital. It made such a difference when she had it on. She had to have it moved around but any relief was better than the pain she was experiencing.
I know you've been in bad pain for a long time and really hope the nerve block may help. I'm also interested in hearing others' experiences.
Over the past couple of weeks my own nerve pain in shoulder and arm has got worse and worse and I now find it difficult to walk more than 10 yards without getting bad pain which at times borders on the agony. My zomorph and amytrptyline have both been increased and I also take oramorph...all to little effect. On Friday I started a course of steroids..a daily dose of 8mg of dex after breakfast..they think this may reduce swelling. My pain is caused by neck nodes and chest nodes which are now quite large, swollen and trapping nerves.
I'm pretty miserable with it all. I've had two short breaks recently and want to plan other trips but don't feel I can until pain under control.
Hope your pain improves Dawn and Ali..this is one heap of cr*p (oh don't get me on constipation and the joys of French suppositories.) At least the steroids counter the sleepiness of the other drugs.
So sorry that you are in pain.
I've got mets to my upper spine in two places and the neck ones are causing me to have terrible nerve pain in my shoulder and down my arm.
I've been on MST(slow release morphine)Gabapentin and Oramorph for weeks now and none of them are working.The pain is unbearable sometimes.My Dr has now prescribed Oxycontin tablets and liquid and lidocaine patches so I will see how I go with them.I've not heard of nerve blocks,so will look them up.
I have had bone mets for 7 years now and although they are pretty extensive to all areas of spine, skull, ribs, collar bone, pelvis & hips, have given little trouble until the past year. I have found it very hard to accept that I need to be on opiate pain meds now which are giving some relief. It is almost laughable that I need stimulants as well because the opiates make me so sleepy I need something to keep me awake. On Monday I am going to have a nerve block to the lower part of my spine and wonder if any of you have experience of nerve blocks. It seems they dont have that great a success rate with only around 30% getting relief that lasts for several months.