I am in final stage of life after having SLE and APS for 25 yrs, oramorph does not work, any ideas please as pain is depressing me plse?

[John250671]

[lupus-support1 Administrator]

Dear John250671,

I understand that being in pain is depressing and I know there are other opiate alternatives. Unfortunately, it does take time when trying different alternatives to find what works for you.

I wonder whether you have been referred to see an expert in pain relief or have a referral to a pain clinic?. For example, I know that St Thomas' Hospital, London has one such clinic. You could ask for a referral from your GP and/or rheumatologist.

There are a number of Members at the LuPUS Message Board who also have experiences which requires pain relief.

At the LuPUS Message Board you can also post questions and talk to other people. Registration is free and we offer free information and free online psychological support. The forums are private, only Members have access and even bots and search engines are forbidden.

If you are interested, When you please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Feeling depressed is not unusual or a sign of weakness. Depression can result from the inflammatory process itself and/or a normal response to pain and living with lupus.

Be well!

Ros

[John250671 in reply to lupus-support1]

Hello Ros, I am getting care from lupus unit at st toms and was referred to the pain clinic who would not even consider any help until I was off of oramorph as the very large amounts I need, I was told if I could get off it then I can go on a course of some sort that they take very seriously as it costs £25.000 to do but as soon as I come down on my amount I take my muscles ache and arthritis always cripple me so I end up taking more again, I feel it's more of an addiction to the stuff now though, I have been tried on so many diff things and the best thing I found that works but it's very short term is entinox and also the occasional cannabis joint but Drs won't prescribe me them,lol. I feel I'm just past helping anymore and been told by my local hospital I'm classed as terminal but they can't say a time, thanks for you're reply, all the best, John.

[Julymoon]

Hi John,

I take Dihydrocodeine and Pregabalin for pain it takes the edge off and lasts for about three hours a time, I didn't find Oramorph very good either. The Dihydrocodeine helps with the intense bone screaming pain but also I have crawly pain/nerve tingling pain hence why I am taking the Pregabalin. I think you should go back to your GP and ask for something else, perhaps the slow releasing morphine which I found very good but my practice here in Norwich won't let me have them. Brightest Blessings to you and I wish you all the best.

[John250671 in reply to Julymoon]

Hello, many thanks for you're reply, I have used dihydrocodiene(DF118) and became addicted after 16yrs on them so I eventually weaned myself off after I was takin 200 30mg tabs a week so gonna steer clear of those I think,lol. I have tried so many different things but the only thing that helps is entinox or cannabis but it's impossible to get it prescribed. I will just keep trying the diff things the Dr tells me to, all the best and hope things are good for you, take care luvvy, John.x

[Julymoon in reply to John250671]

Hi John, yes I know the addictive side effects of dihydrocodiene also that's why I change medications every six month or so. I suppose you have tried crystals and meditation/ healing I find clear quartz and citrine in and around my living space a good cleanser of negative energies in layman's terms I feel a lot brighter having them in my space than I do without them and I meditate daily, though if I am passed my pain threshold then for me I use other less favourable methods to control my pain levels. I was once told by an Apache Indian that pain can only be harnessed when the mind is sleeping and the body still. Meditating is a skill, not easily learnt and never forgotten and if you can get in and stay in the zone I would have to say its a pretty good place to be.

Brightest Blessings, July.

[lupus-support1 Administrator]

Dear John,

I am very concerned about you and would like to be able to offer you something that might be helpful to you. If you are being treated at St Thomas Lupus Unit, surely your consultant can speak to a colleague (anaesthetist) so you can discuss your options? Coming off pain medication is tremendously difficult and you need to have some idea as to how this should be done, under supervision. You cannot be expected to simply wean yourself off high doses or even lower doses without such supervision and medical care. I don't think your GP could manage this.

It may be that your body has gotten used to the oramorph and complains when you don't give it! This is physical "addiction" ie your body needs the pain relief. Obviously, you have to come off oramorph before new drugs can be given - there are other drugs, but as I am not a medical doctor, it is not for me to recommend. Did you find that the cannabis helpful?

I do not want to pry John, but I recognise that given what you have already mentioned, that you are in distress, physical and perhaps psychological and wonder whether you are getting any psychological support.

HealthUnlocked is not that private and therefore if you want to speak with me privately, please email me here: roz [at] [lupus-support] [dot] [org] [dot] [uk]

I am a qualified psychotherapist/counsellor.

With good wishes,

Ros

[lupus-support1 Administrator]

Hi julymoon,

I don't think I have spoken with you before so:

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[Julymoon in reply to lupus-support1]

I signed up in December but as I am reclusive i rarely share an gems of wisdom, however, the problem with pain medication that John is having is something very close to me it was the reason I replied.

[John250671]

Hello all, many thanks to you, all your help is really appreciated, all the best to you.x

[lupus-support1 Administrator]

Dear Julymoon,

I respect your wish to be reclusive, but it seems to me that your capacity to share and empathise with other people is a gem.

I hope you feel more able to talk.

With good wishes,

Ros

[Paul_Heanor]

Hi John250671,

I'm the same really.... I've just had a few weeks on dyhydro-codeine.... it 'takes the edge off'... but doesn't really affect the pain that much... horses for courses I'm afraid on this one... I'm also a cannabis user which does help with the pain, but as I'm still working, I can't really use it until the evening... I've now changed my medication to slow release morphine, building up from 10mg per day and am now using 60mg per day, 30mg in the morning and another 30mg in the evening... it takes a few days to build up but the results were really good and I actually had a few days with NO PAIN!!!! I felt re-born.... as I sit and write this I'm in agony though, so I don't know if the morphine is something you build a tolerance to, just like the cannabis... I still smoke the cannabis daily, but it does have it's legal downsides unfortunately, but that's more a political issue as much as anything else. I hope you find a solution to your pain, but I would suggest giving the morphine a go for a few weeks and see how you get on... looking at most of the posts on painkillers, I think the key message is to get a GP that will listen to you. I have a new GP that is fantastic... my previous experience tends to be that most GP's tend to think that you are requesting pain killers for recreational reasons, and of course admitting my cannabis use to them just reinforces their beleif systems!!! I'm still no closer to diagnosis so at the moment its even more difficult to get someone to listen, although I've found replies to my posts on here to be really supportive... I no longer feel alone in my battles!! Good luck with it all.