Fentanyl Advice

JennaJ_2

I have only just signed up so I do apologise if I have posted in the wrong thread.

I will give some brief background.

I'm 35, married with 2 young children. I was diagnosed with an illness in 2009 and I needed medication to control the pain. I started off with dihydrocediene and the pain killer stopped working. I have had various pain killers, tremadol, morphine etc. I came to a point where nothing the doctor prescribed worked anymore, and the pain was unbearable.
The doctor suggested that I have fentanyl durogesic patches. If only I knew then what I know now

Intially I was prescribed 25mgh and they were fantastic. Although I am ill, I felt no pain. It was like being given a new life. I was told to change the patch every 72 hours but I started noticing that around 50 - 55 hours, I could feel pain. I had my dosage increased. In 2 years I have gone from being prescribed 25mgh patches to 100mgh patches.

50/72 hours I am pain free.
72/72 hours I am a zombie, I feel numb, I feel depressed. I have gone from being 12.5 stone down to 8.5 stone in 2 years. My memory is terrible. I forget most things and can't remember many things. I am very sleepy and after waking up, a couple of hours later I feel exhausted.

My main concern is that I think I have become addicted and I have found often that around 40 - 50 hours in to the 72 hour patch, I start shaking, feel terribly cold, have sweating episodes where sweat actually drips from my face and I ache all over. If I change the patch early then all the symptoms subside.

I have spoke to my husband about how I am feeling and I asked him to be honest with me. He said that since I have been taking Fentanyl it feels like he is married to a stranger. He says that I appear in a world of my own most days and that I he knows when the patch is running out because I am very snappy. I have no idea that I am snappier but my husband and family say that I am. He says that when I have changed my patch, the snapping stops

After talking with my husband,friends & family I decided to speak to my doctor. He then told me that Fentanyl is highly addictive and powerful. He says that the symptoms that I have described are those of addiction. He can't lower it from 72 hour to the 48 hour which would stop the withdrawal symptoms, but he can increase the dosage or give me medication to help with the symptoms I experience between 48 hours to 72 hours. The medication he's offered me is medication to help with addiction come downs.

I feel like my life is pretty much over. It isn't fair to my children who have now got a zombie for a mother, and it isn't fair to my husband.
Without the medication the pain is unbearable and I end up having to be sedated in hospital. Long term there is no cure for me, the illnes has no cure.

I only wish that my GP had warned me that he was prescribing me something which is additive. If I had have known then what I know now,then I wouldn't have started taking Fentanyl. Yes, I am pain free for a short period but then I start feeling withdrawal symptoms and those are terrible.

Does anyone have any experience with Fentanyl?

fluffnutter

Unfortunately, most of the powerful pain medication is opiate-based and will be addictive as a result. As you've discovered, it's in the management of chronic conditions that addiction can become a problem.

You're stuck between suffering the pain of your condition or suffering the discomfort and indignity of tolerance and dependency and I really, really feel for you.

Has your GP discussed non-drug types of pain control, e.g. meditation etc. or are these types of treatment not appropriate for your condition? Depending on why you have pain there are often ways of coping with that pain without using drugs. It's worth exploring perhaps? Most GPs will be able to refer you to a pain management clinic.

Other than that I don't know what to suggest. You could try swapping medication frequently to try to combat tolerance. You could have a break periodically. This would mean that you're in pain for a while but your dependency would sort itself out and the drugs would start working better again. Dependency on opiates can be uncomfortable - if deciding to withdraw then I'd suggest reducing your dose over a period of a week if this is possible. It will make the symptoms easier to cope with.

Go back to your GP and ask for a referral to a pain clinic. Good luck.

valk_scot

Have you been referred to a pain control clinic? There are a few GPs out there who are pain control specialists but most don't have the in depth knowledge and experience to fine tune pain control to the individual, not like the specialists at the pain control clinic do. So if you've not been referred I suggest you press for this.

Incidentally my recently retired GP (who was very experienced with pain control) said that while dependency was common with opiate based drugs there had to be a balance between being dependent on a drug and the positive benefits of taking it, medically speaking. Her exact words were that if you were going to take a drug for the rest of your life, did it matter if you were dependant on it? Assuming that there were no other negative side effects and that the drug was working well, it was fine to be dependant. If you're diabetic you're dependant in insulin after all.

There's also a thing called the discontinuation effect which kicks in when you start to taper off a long term drug. It's basically the physical reaction to a drug being taken out of your system. This is not true dependency as you don't get the cravings after this period, you're done with it. You can get this with almost any sort of drug btw, not just opiates. However, that's probably not the case in your particular situation, I just thought I'd mention it because many people think that any sort of withdrawel effects from a drug indicate dependency, which is not so.

Anyway, I see you've been back to the GP, next stop is the pain clinic I think. TBH if I were you (and I am on chronic pain medication, yes, for life) I'd be looking into a more holistic approac to pain control with the aim of trying to lessen your reliance on just the drugs to control the pain. Depending on the cause of pain you could try gym, yoga or pilates under the supervision of a physiotherapist, CBT for positive thinking, diet changes and supplements to increase your body's ability to cope with the pain. Some sort of councelling or group therapy might also help. A pain control clinic can help you access all of these. In my own case I was deeply sceptical about this approach, a year later the pain is still mostly there but I feel considerably less helpless about the direction my life is going in, and that can't be bad. The clinic isn't a miracle cure but it is a positive step.

Person_one

I'm so sorry you have such hard to control pain. Unfortunately, Fluffnutter is completely right and the stronger the painkiller required to keep you functioning, the higher the risk of side effects and addiction.

Without wishing to minimise what you're going through, I have to say that you don't write like a 'zombie'. You sound intelligent, articulate and thoughtful.

We aren't allowed to give medical advice on here, but I agree that a referral to a specialist pain team would be a good idea. Also, if there are any support groups or internet forums for people with your condition then you may find that others have come up with coping strategies you could try.

Lastly, I would look into counselling for you and your husband. Chronic illness and especially one that causes such severe pain as your, can put a huge amount of pressure on a relationship and there's not a great deal of support for the powerless spouses either. Counselling may help you both to bend your relationship around the illness and get through the tough times more easily.

Best of luck. X

Hermia

You might want to read Painkiller Addict by Cathryn Kemp. It is about her experience of getting addicted to Fentanyl and how she managed to beat the addiction. You might find it interesting, especially as she talks a lot about her experiences of the health service. There is an interview with her here:

http://www.guardian.co.uk/lifeandstyle/2012/sep/09/i-was-a-painkiller-addict