Complex regional pain syndrome

[MiniRowls]

Hi all!

I’ve had CRPS for 12 years in my leg and managed to get it under control. However last April I had an operation for endometriosis and have now been told that I have CRPS inside. None of the medication the Drs have prescribed (I’ve tried all the normal ones) work for me, so I’ve asked for spinal cord stimulation. Does anyone have any experience of this please? Or any other suggestions?

Thanks 😊

Annie

[FRreedman]

I was told by my consultants never to have an operation that was not deemed absolutely necessary, and then some, as my CRPS (also in my legs) could relocate to anywhere else in my body. I have managed to make my legs bearable, but not pain - free.

[Hidden]

Medical marijuana helps me alot.u never get rid of the pain,but it makes it so u can breathe again.

Sorry ur dealing with this😔

[S3nate]

I have CRPS in my legs as well and have thought about going for SCS, however it's and evasive operation where you might find it doesn't work for you, I have been looking into lidocaine injections which you may find to be more avalible to you and you might even get faster.

Hope this helps x

[MiniRowls in reply to S3nate]

Thank you! I’ll ask about the injections x

[Konagirl60 in reply to MiniRowls]

Ketamine IV might help as well.

[Kathy0063]

Hi Annie,

Sorry you are having to experience this incredibly complex illness.

I've had CRPS in my leg since 2009 and it's also now in my bladder following surgery. I have to have an operation under GA every 6 weeks for the rest of my life. The thought of having anything else operated on, is a big NONO.

Initially I was offered SCS but the risk of more CRPS it had to be a nono. I was having Lidocaine infusions every 3 months which were great but they are no longer allowed on the NHS. It's a nightmare. My meds are:

Zomorph 30mg - am and pm

Nortryptaline 10mg - pm

Solifenacin 10mg - pm

Sertraline 200mg - pm

Pregabalin 300mg - am and pm

The Zomorph was 40mg twice a day but with the lidocaine, I managed to reduce it to 30mg twice a day. The pain is starting to more difficult to manage again and need to increase back to 40mg twice a day. I'm not happy that I have to be more zombified but I guess the NHS aren't bothered by that 😩. Sorry for the long post. Kate

[MiniRowls in reply to Kathy0063]

Hi Kate

Thanks for the reply. I’m so sorry to hear that you’re having such a crappy time ☹️

I’m trying to avoid going back on all the meds because I don’t want to be zombified either! It’s just awful when you can’t function!!

I’m still waiting for an appointment with the pain clinic so I’ll see what they can do differently to the last time I went