What do you do...

...when your doctor cries and tells you that he doesn't know how to manage your pain anymore?

I had a review and refill appointment with my PM today, and that's just about what happened. I'd told him by email already about all the problems I've been having, and he knew about me having been in hospital. He sighed and asked me "What are we going to do with you, huh?" and I said that I hoped he could tell me that. And he said quite openly that he was so sorry, but he didn't know anymore. I rather blunt honesty than false hope, but it's hard, and I'm devastated. Other than going overseas and doing the 'ketamine coma' which wouldn't be an option for me due to my ketamine sensitivity, I've tried everything, done everything.

I can't talk the pain meds I need anymore because of the effects on my stomach. As I told him, I struggle even to take BT meds now, because they just make me so unwell that it's barely worth it.

I left the consult in floods of tears and he actually came out to check that I was okay. He spoke to Mum rather than me, but took her aside to tell her how sorry he was and how hard he had tried, how hard he was still trying, and was in tears himself.

I'm over this guys. Every day is seems to bring more sickness and more pain, and I don't know how to keep fighting anymore :(

Oh my gosh Laura, I sure feel for you hon. I have been in the same position several times, with doctors telling me we have tried everything and there's nothing more we can try for the pain. I too have left offices crying. Like you, I know it is devasting to hear but i too would rather be told the honest truth. Your doctor is hurting as bad as you are as he wants to help you in the  worst way. I too have tried ketamine and it had no effect. I wish there was something i could do to help you. In my case, since there is nothing that can be done, I have been working very hard on just accepting that this is the way it's going to be. It's not easy. I know that you too are doing the best you can with your complete body pain that you have. It can't be easy. Let me know if there is anything i can do to help you. You can email me anytime you want. I'm here for you.

Big gentle hugs and healing vibes sent your way.

Suzane

So sorry you're going through this and I hear you and empathize with your pain problem.  I would probably faint out of shock if one of the many doctors I've seen cried for me--not getting good care right now.  I have no answers because I have never been given any either.

Laura,
I also think that giving you the pain medications via the baclofen pump is a great way of lessing the side effects and the stomach issues caused by the oral meds. They are given at a much lower dosage, and delivered through the canula in the spinal cord already.
Do you have a large teaching hospital near you? If you do, find out what PM doctors are using the pumps there and make an appointment.
I know that CRPS is so difficult to live with, and there were times when I wanted nothing more than to die , rather than suffer one more minute, but that's not the way either.
There is hope, as dim as things seem right now, hang in there.
Sandi

White Beard and Sandi - I've had my Baclofen pump since 2008. I also have bupivacaine via the pump. Part of the problem getting other medications via this route is that I have VERY poor tolerance for most opiates, and also that my baclofen requirement is so high that it's not really possible to introduce another medication into my pump 'cocktail'. Believe me, if it's a valid option, we've looked at it :(

As for Teaching Hospitals - we don't work the same way as the US, but my PM doc is either the head or senior member of rehab and pain management across several places, including one of the biggest hospitals here :( As the saying goes, what (and who) he doesn't know probably isn't worth knowing.

Sandi, I'm sorry that you know what CRPS pain is like. The problem - I think I'm not making myself clear, 'cos I'm not feeling well and it's hard to explain across internet - is that obviously you can only have X amount in the pump, yes? My baclofen requirement is so high that even reducing by the tiny bit we did to get the bupivacaine in there caused some compromise in the management of my dystonia and took me from needing refills every 8 weeks to every 6 weeks. When he investigated for me some time back, his estimate was that putting morphine in for example - which I don't handle at all well orally, and gave me only marginal relief when we tried intrathecal, would take me to needing refills about every 3 weeks. He's over an hour away and I don't handle car travel.

Thank you for the hugs...need them more than ever round about now.

Laura

hi Laura,
Okay I understand there isn't enough volume space available in your pump to add inthrathecal pain meds right now. When are you due for a replacement of the pump? If you have the smaller pump, they can replace yours with a larger pump and then add the intrathecal meds. Morphine is only one of the meds that can be used in the pump. Fentanyl, dilaudid, and some others are now able to be used in them as well.
It might be worthwhile investigating replacing the pump size you have now, for one with a bigger bladder, not necessarily a bigger pump.
Have you ever heard of a group called pumpsters? It's on Yahoo. I wouldn't normally recommend checking out another group, but in your case, they are all people who either have the pump or are planning on getting one and there is a wealth of knowledge about all of the pumps, the meds that can be used in them, and pain management for conditions like yours. It might be worth checking into, you may find out something that you and your doctor aren't aware of that might help you. That of course, doesn't mean that you should leave us, but to give yourself a new hope .
Hugs again,
Sandi

((((((Laura))))))) I am so sad you are going through this. I am not sure what the next step is, as it sounds like you have already tried everything. Is there any chance they can try the N-J tube just for meds rather than feeds?

I just don't know what to say. I understand why you are so devastated. You have already been through so much, it just doesn't seem fair.

Dear Laura, Thank you for the welcome.

I certainly didn't mean that you should be doing more than you already are in being hopeful and or accepting. Who am I to say what you "should" be feeling, and I'm sorry if I came across that way.

What I was trying to say, not very well, is that when someone told me I needed to accept my illness, I lost all hope. And I was afraid that when your doctor said he didn't know what to do, you had lost hope too.

I really couldn't live without having hope that my health might get better or I'd at least just feel better and I became very depressed. Fortunately hope seemed to find me somehow, some way. I don't really know how because nothing on the outside world has changed for me.

But it's a juggling act to hold both acceptance and hope at the same time. That's the tricky part and my wish for you is to find some hope again. And I probably better leave it at that or I'll insert foot in mouth again. ;)

From re-reading your post, I don't think your doctor has given up. He just doesn't know what to do at this point. He sounds like a wonderful doctor who really has your back. But he did make a mistake when he told you he didn't know what else to do. If my guru/doctor had ever said that to me I'd have been totally devastated too. That's only because I respect him so highly and you must feel the same way about your doctor.

Years ago I went to a very large University teaching hospital with a pain clinic that has a excellent reputation as does the doctor, I mean he's the best of the best. He referred me to another renowned doctor/clinic for the neuropathy. Point being this doctor understood that another doctor might be more helpful for me.

Is there any possibility that your doctor, as good as he is, might know someone who could be of more help with an area of your health condition? Sometimes it's really hard for doctors to admit that another person might know something they don't.

Imme

I'm sorry Laura. I hope that I didn't offend you, I was only trying to help.
I'll butt out now.......
Sandi

Laura,
There is no need to apologize. I can be a bit thick sometimes and in my attempts to help, it seemed that I only frustrated /worsened things by having to have you explain things several times. I am the one who needed to apologize.
NO worries, I just hope that they can find something to help, hopefully medical advances will move at lightening speed so they can offer you something other than all that you have already tried.
As I said before, I do understand the pain levels, and frustration and feeling overwhelmed by the lack of progress in getting something done to ease the pain.
Hang in there Laura and don't worry about me. I'm not upset at all.
Hugs,
Sandi