Am I right or wrong???

[darrenseuk]

So over the many years and different treatments I have tried for CRPS, I made a decision this year to reduce my medication.

In November I hurt my back and I kept hurting it because while on so much tramadol I lifted my wheelchair when I should not have. I could not feel myself hurting myself.

As the years went on, I kept asking for increases in medication to cover my pain. Until I reached the legal limit of tramadol. Where could I go once I reached the top?

So this year I decided that it was time to start feeling again and handle more of the pain than covering it. I am not under and false hope that my pin will not increase or magically disappear. I know by reducing my meds I will be in more pain.

At the beginning of the year I was taking 600mg of tramadol a day. 200mg over the legal limit. My Doctors had to quickly drop my dosage but I did not want to stop there, from taking 8 pills (50mg) tablets, I am now down to 2.

Yet the pain is worse and I can feel it more than ever, I feel a lot better than being “doped” up all the time.

I am also trying pregabalin for the first time and noticing the dehydration that I used to get with gabapentin. Does anyone else get these side effects?

I am making these changes as when people ask me how it effects me, I forget. Once I have a pill to cover it, I forget the bad parts. I forget how my hand feels like I just slammed it in the door ALL THE TIME. Like I have needles in my leg that hurt when I walk, at first after a few steps now all the time.

As a wheelchair user, I have maintained my independence and by reducing my meds it means I can still drive.

Am I mad at taking on the pain levels again or should I go back to taking all the medication. I genuinely want to hear from people on both sides. Have you taken this step and how did you find it? Are you med free and still need free? Did you attempt it but go back to medicaton? I reserve no judgement on anyone’s choice, we all have our own journey and I want to hear about yours?

[Poppy_Ann]

HI Darren,

Like you I take Pregabalin along with several others and yes it does give me dry mouth but as far as I am concerned the dry mouth is much better than the pain, when I feel a little better I cut down on how many I take, not that I think I will ever be able to stop I cut down so when the pain is bad I have something I can take to cut the extra pain down.

The thing about pain medication is that they are not made to stop pain but to cut it down to a level you can stand and still have a life, for me the pregabalin is one of the minor items I take my main items are

Dihydrocodein 120mg twice a day these I never try to cut down as the only time i tried I was in so much pain I could not even get out of bed, my next main item is Morphine sulphate as and when required but I take as little as possible and the minor items are Nefopam 30mg 2 X 3 times a day also I take these every day, Amitriptyline 50mg 2 once a day at night these let me sleep and without them I get zero sleep no matter how long I go without them and last Naproxen 500 mg which I hate taking as they are like horse pills and I struggle to get down and a couple of others to help with other items even taking all of these I still consider myself able to drive (on the days I can stand upright)

Good luck finding the correct level that treats the pain and dose not leave you like a zombie.

Regards Poppy Ann.

[cyberbarn]

The understanding of what is pain and what causes it has come on in leaps and bounds in the last few years. This, like any science, is always moving forward, building on what has come before. The sad effect of this is that they have realised how they treated pain in the past might have actually been making things worse for people, not better.

For instance the opioids were tested in patients with cancer at end of life, and then they just rolled that out across the board for everyone with pain, not taking into consideration that there are different kinds of pain that need to be treated in different ways.

So I don't think you are mad, I think you are doing the right thing. Many people are doing this now with the help of pain clinics. There are also GPs like Dr Chris van Tulleken who is working with people to help them give up drugs. Have you seen episode one of his documentary? youtube.com/watch?v=kBVCFDA...(Not working as expected?)

Someone else who has done so much work on pain is Prof Irene Tracey. She isn't just an amazing researcher, she is also a good communicator. Have a listen to this: bbc.co.uk/programmes/p03hv43v

So I wish you all the luck and support to get your life back again! I hope you enjoy it.

[luckyjim]

I believe your pain meds strategy is absolutely spot on. Trying to eliminate your pain leads to all the problems you describe. A pain sharing regime, from my experience, is a good way forward.

Good luck

Jim

[darrenseuk in reply to luckyjim]

Thanks Jim.

Tomorrow I start an 6 week group activity course where I hope to pick up some new strategies or at least a refresher on old ones.

I’ll try anything to find something that works. Now my back is nearly back to normal I will be going back to the gym.

It’s all a learning journey I guess