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DH perscribed Fentanyl patches for back pain and knee pain

(18 Posts)
sleepy2grumpy Sun 03-Apr-16 23:31:18

I'm not sure what I'm asking for with this thread but I feel I'm at my wits end and I don't know where to turn.

DH is 55 and has has terrible issues with back pain and he had done for the last 7 years. To cut a very long story short he injured his back at work, slipped 3 discs in his lower back and over time they have totally disintegrated, its now bone on bone and causes him horrendous pain. He has been told that surgery is not an option by several consultants as the area is too large and it's too much of a risk.

Then a few years later he has slipped the discs at the top of his back which rendered his right arm and hand useless. He experiences pain in his right shoulder, forearm and has pins and needles in his right hand most of the time. Slowly this pain has got better but not completely.

He finds it impossible to walk without being in pain, he looses the feeling and gets numbness in his legs and feet and he describes it as having flappy feet. Sometimes he cannot feel if he needs the toilet and gets scared that he's wetting himself, luckily he hasn't. He has to sit down wherever we are for a few minutes until he gets the feeling back. Then he walks another 50 feet and it happens again.

Walking anywhere takes us a long time. He has a very odd lumbering walk when he does walk. Now, and I think because he walks oddly his left knee is packing up and is due to see his consultant in a couple of weeks time.
Since he became virtually immobile, from being a very fit man he has become Type 1 diabetic and suffers with SVT's.

His GP has prescribed him a long list of medication, for his heart, diabeties, statin and the painkillers are as follows: ibuprofen 1200mg daily, paracetamol, codeine. (In the past he has had tramadol, naproxen, gabapentin, amiltriptyline) He has also been on the Butrans Morphine patches for a while and since his knee pain he had been on the maximum dose of 50 mcgs occasionally 55 against his doctors advice but he couldn't cope with the pain.

The GP sent him to a pain management clinic but they didn't help and just before last Christmas the doctor there signed him off and said that they couldn't help him any more after he had had the accupunture that was offered to him which didn't work and he's had aprrox 6 epidurals for pain relief which only worked for 3 weeks max at a time. This was very upsetting for him.

He has recently had an emergency appointment with his GP because the pain has been so severe and his GP has changed the Butrans patches to Fentanyl patches. Within a week he has gone from the 12mcg's to 25mcg's and he feels they are not working.

He's so down and depressed, and our 4 yr old DS is very understanding with him but you can see in his face he wants to be up and about doing stuff with us that he just can't physically do.

Everything I do and say or suggest is wrong and I get shouted at so I've learnt to keep my mouth shut and I'm finding it all too much to cope with. I (let alone DH) cannot see a light at the end of the tunnel.

Every day the pain is getting worse and worse.

I don't know what to do, what to say to him or who to turn to. He's taking all these prescribed drugs that are only taking the edge off all his pain.
How long will this continue, will he ever be pain free? What more can I do to help him?

I've suggested a wheelchair or mobility scooter and he might be coming around to that idea slowly. I have managed to get him walking with one crutch using his good arm which has been some help.

Has anyone got any ideas, are there any charities that might be able to help? Are there any other options?

Sorry for the long story that was supposed to be short.

MatildaTheCat Mon 04-Apr-16 09:26:25

Firstly massive commiserations to both of you. I have an isolated back injury which causes a lot of pain and sciatica and that's bad enough. I've also got a knee issue. For me the knee was a problem from further back and although I've been told it needs replacing I've actually had enough pain relief from injections to avoid that so far. Knee braces etc can be useful as well.

Your dh sounds as if he has been referred to all the usual people and yes, they do sign you off when you've tried everything they have on offer. Did he do a pain management course? I had some benefit from that and was introduced to Mindfulness which I quite like and also Alexander Technique which is useful. Best of all I've been able to have regular psychologist appointments which have really helped me at times. Who else can you tell that you've been thinking about death a lot?

Re the fentanyl patches, I'm not surprised they haven't helped yest since he hasn't switched to an equivalent dose of the Butrans, in fact he's on a lower dose if I remember correctly. There's a table Here.

We have a long running thread for back pain support, either of you are most welcome to join in. He's tried many things but support can be comforting. And yes, I agree about using a scooter of whatever it takes to get out there and carry on living. It's not what we wanted but better than the alternative.

lougle Mon 04-Apr-16 10:47:24

"Re the fentanyl patches, I'm not surprised they haven't helped yest since he hasn't switched to an equivalent dose of the Butrans, in fact he's on a lower dose if I remember correctly."

0.4 mg Buprenorphine is equivalent to 10mg morphine. Whereas 0.1 mg fentanyl is equivalent to 10mg morphine. So transdermal fentanyl (Duragesic) is much stronger than transdermal buprenorphine (Butrans). The only reason that your DH isn't at an equivalent dose is because he's using 55mcgs of buprenorphine when the maximum dose is 40mcgs per day.

Transdermal patches are usually reserved for people who don't tolerate oral medicines. Is there any reason why they haven't tried modified release morphine (MST)?

MatildaTheCat Mon 04-Apr-16 11:06:42

Sorry, I wasn't suggesting that fentanyl and butrans would be prescribed at the same dose which was why I added the link to the table which demonstrates it more clearly.

PancakesAndMapleSyrup Mon 04-Apr-16 11:20:57

Try asking for oxycontin as well as the patch? This is what i was on previously also baclofen which is an anti spasmodic bit like diazepam but tbh im taking both the baclofen and diazepam and have been for years. Also ask for a referral to the Royal United hospital in Bath they offer a residetial course 3 - 4 weeks long and have family accomadation if needed. It used to be the royal hosp for rehumatic diseases they are complete pain specalists and are pioneers in the specalism. Have you tried hydrotherapy?

sleepy2grumpy Mon 04-Apr-16 12:20:03

Wow, morning, I wasn't expecting any replies to my post but this is just wonderful. It's certainly given me a bit of a much needed lift. I need to ponder these replies and I'll get back to you as soon as I can. (I'm just waking up after getting home from work at 730am). Thank you wonderful people. smile

PancakesAndMapleSyrup Mon 04-Apr-16 16:41:38

Also if gabapentin didnt work there is anothee called pregablin and lastly an antidepressant which also is used for pain is called duloxetine.

festivehopeandfrolicks Mon 04-Apr-16 16:57:47

He's not on any "nerve"drugs at the moment.opoids are a bit crap at the nerve aspects of his pain (and it sounds like he has some). Can they look again at gabapentin /prevailing /noritryptiline etc.

festivehopeandfrolicks Mon 04-Apr-16 17:01:22

It is crap though and there is so little support. He probably will be in pain "for the rest of his life" to some extent but it is worth tinkering with meds as they can benefit from being switched around. Honestly some of my nerve meds are anti depressants at larger doses and I reckon I get some beneficial affect that helps me keep going.

MatildaTheCat Mon 04-Apr-16 19:21:51

Pregablin and amitriptyine have helped me more than gabapentin. The patches were, well patchy in their delivery as well. I'd have a couple of days with reduced pain and then several needing top ups. From what you say, though he could discuss other oral options with his GP.

As above, it's unlikely he will be pain free. However his quality of life could probably be much better. I think it's like a jigsaw, finding the bits that fit or help a bit and setting aside those that don't.

Having said all that, I don't shout or get bad tempered with my family vey often. As awful as pain is it is not an excuse to upset everyone or behave badly.

sleepy2grumpy Mon 04-Apr-16 22:16:07

Thank you all for your replies. All of your knowledge and experience is invaluable to us and we have felt quite upbeat today. We have been feeling so alone for such a long time but now with your support and company it doesn't feel so bad. Thank you.
DH's pain hasn't been as bad today so maybe the strength of his patches is finally working along with his new crutch, and if his consultant can sort his knee out or at least do something with it then that's part of the problem taken care of, so we've just got to grin and bear it until his appointment.

Matilda I am sorry to hear about your troubles with your pain, but I'm glad you can manage with the injections to avoid a new knee. I have ordered a new more substantial knee support for DH, he has worn one before but it was just a small sports one, but we have to play it day by day depending on the swelling. So we'll see how that goes and its not a great expense if it doesn't work.
DH hasn't been offered a pain management course, we didn't know they existed. I'm not sure DH would go for the Mindfulness but I've heard great things about the Alexander Technique and I've mentioned this to him so he's writing a list of things he's got to tell/ask his GP.
I'm glad that the psychologist has helped you, that maybe of some help to DH.
Thanks for the link to the patch doses. That has been an enormous help to me as its tricky to fathom out the doses of the different drugs, and now we know. We stupidly thought they were all the same...I should know better, but the GP only gives us the bare minimum of information.
I've found the other back pain thread and I will be joining shortly, I obviously didn't know it existed as I would have originally posted on there. I'm a dippy dew drop sometimes.

lougle Transdermal patches are usually reserved for people who don't tolerate oral medicines. Is there any reason why they haven't tried modified release morphine (MST)?
I have talked this through with DH this afternoon and we don't know the answer to this. He has never been given the option, the GP just put him straight on the Butrans patches, oral medicine was never mentioned. Could it be because he's on other oral medications for heart and diabeties? Or does this not matter?

Pancakes I will look up oxycontin - what is it? How does that help? Are these meds working for you? Are you having many side affects?
We didn't know anything about Royal United hospital in Bath, it sounds like something we could look into. Have you been there and was it a success? Do you think they would take a referral from Lincolnshire?
DH loves the idea of hydrotherapy, he has never been offered it but I've asked about today and we have a hydro pool locally - who knew?
I wasn't aware of any other drugs available like gabapentin and I think we should look at the other drug you mentioned, duloxetine. Thank you for your advice.

festive From your message it seems obvious that DH should be on some kind of nerve drug, so why this hasn't been looked at again I don't know. Sometimes I feel that DH has just been written off but with your help and information we have got the power to fight and put our foot down a little bit more. I'm pleased you are managing on your drugs and thanks for your post.

We have got a lovely long list of ideas, suggestions and different medications to work through, we have today been overwhelmed by your support.
Thank you everyone flowers

lougle Mon 04-Apr-16 22:22:01

Lots of people take Morphine with heart conditions. My concern with the morphine tablets is that if your DH is using multiple patches against doctor advice, would be be likely to take more morphine tablets than he is meant to? Opioid drugs are powerful and high doses can give lots of side effects without necessarily bringing any better pain relief.

sleepy2grumpy Mon 04-Apr-16 22:36:45

lougle It would always be a possibility to overdose on the tablets, as DH never blinking remembers if he's taken his tablets or not, even though I put them all out in a dossett box. But the gp doesn't know this. Maybe we should stick with the patches, as long as he doesn't put them on his back I think we are ok. He uses an electric heat pad on his back which, I read on the leaflet that came with the packet, not to expose the patch to heat as it'll release the drug more quickly resulting in over dose.

PancakesAndMapleSyrup Tue 05-Apr-16 22:52:56

Hi Op, oxycontin/oxycodone is a synthetic slow release morphine based drug. Its one of the strongest available. Ive not had side effects bar feeling dopey when starting on them but got used to them quickly. Its a good pain releiver however its horrific if you miss a dose you feel awful within hours of a missed dose and highly addictive but you can come off them slowly. but for me pros outweigh the cons. Ive had a spinal fusion with cage in/around my spine and have fibromyalgia, so all over body pain! (Also have had 2 knee ops). Hosp in bath will take referrals from all of the uk BUT you must have seen a pain clinic locally first so get referred and you will have to push push push to get an appointment!. I havent been but been reffered and heard good things!!
Pregablin is a slightly different form of gabapentin. Ive been on both. Pregablin is an anti epileptic drug so for nerve pain acts as a suppressant. Max dose is 600mg daily but is apparently no more effective than 300mg.
Hydro is super just little things like walking around in the warm water and stretching feels wonderful!

PancakesAndMapleSyrup Tue 05-Apr-16 23:03:36

Also a stronger patch than butrans is Transtec i have taken these also at the same time as the oxy but am now off the patches.

PancakesAndMapleSyrup Fri 15-Apr-16 00:55:36

Any update OP?

sleepy2grumpy Fri 22-Apr-16 08:48:59

Sorry on the delay, we are on holiday at the moment and I haven't checked MN for a while. DH went to GP who refused to up his dosage on the patches. GP gave him Codeine perscription again which he's taking but he's getting terribly constipated so he's on the Laxido too, which sometimes works and sometimes doesn't. GP refused to send DH to hospital A&E (DH finding his knee pain unbearable) as he is "already in the system". His knee is so swollen and tender and just recently his hip on the same side is getting painful. So we popped up to our local Red Cross office and they have lent us a wheelchair for our holiday.

sleepy2grumpy Fri 22-Apr-16 08:55:26

I'm not really sure about DH's back pain, he hasn't complained about it for some weeks now, I assume the knee pain has taken over. I'm sure that you'll all understand how one problem leads to another then another and another. We get the feeling of "what next?" a lot.

Thank you for your concern pancakes, it means a lot to us. How are you getting on?
Still we are having a nice holiday although with limited mobility.

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