[Hope Star]

Hello Everyone,
I am new to this so I hope I am not repeating a previous post - I am working through them all slowly. They are really useful.

I have CPRS following a lumbar spinal fusion 18 months ago. I have had numerous nerve blocks including a sympathectomy and have been on Gabapentin, Amitriptyline and Tramadol for all of this time. I had a lidocaine infusion about ten days ago and it still has't made any difference even though I was convinced it would work. I am terrified of an SCS as I hate anything to do with electric shocks. has anyone got any advice as to what worked for them?

[Russell]

Hi Hope,
I'm going to jump in to welcome you to the forum.
You're right about this site being helpful. Lots of friendly folks with lots of info or just to be listened to. Like a lot of people here I'm in and out so it might take awhile to get answers.
As far as what works for me, I'm doing aboutb the same cocktail as you except I also do Cymbalta.
The docs in my case have found a good mixture of meds to keep my pain under control which is about all that be done.
I hope you find answers and relief...

[Dysautonomic]

I'm on a day : lyrica 900mg, 10 mg nortrytaline, , vit d, 30 mg mirtazapine ( for depression- helps get a few hours sleep, heavy sedative), 2 x 20 ug/h butrans patches that get changed each 7 days. I have also been having stellate ganglion nerve blocks done in my neck every 3months (help a bit but only for few weeks......which is better than I nothing) although last time they tried to fry end of nerve with radio waves, it was agony & had to be aborted. Next up SCS for discussion end of March.......after 13 years with the disease I got POTS, for which I take beta blockers......which help with anxiety and stabilise me a bit. It has been a long dark journey so far with constant pain. I would like to know about SCS good/bad So I can make informed decision. Anyone try ketamine or lidocaine patches.


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[Littlepaw]

Welcome Hope,

I am glad you found us and are finding some helpful info. So sorry for what you are going through. Bummer on the infusion! Thanks for sharing that.

Everyone is different and people's response to meds changes over time so definitely talk with your doctors if your current regimen is not working. It just takes management unfortunately.

I am on nortriptyline, Vit D and a supplement called PeaPure from the Netherlands that is a fatty acid that is supposed to affect mast cells and inflammation. Don't know if it's related but my inflammatory markers are pretty much zero. I find relief with acupuncture. Certainly this is not an option for all and I am lucky to have a great practitioner. I can really tell when I skip going.
Seeing a pain therapist made a huge difference. Dealing with loss and anxiety related to this illness has given me a more positive outlook. Feeling less panicked and scared has brought my stress level down which can only be a good thing. This therapist did hypnosis and EMDR for pain and trauma from injury. Very helpful! Going to a pool regularly is a godsend for me as well.

I am now looking for a doctor who will try low dose naltrexone and just picked up a new topical with ketoprofen, ketamine and gabapentin. My pharmacist was very excited about this particular combo. For some reason my neuro does not want to try naltrexone, thinking it was a controlled substance. However, pharmacy says it is not, anyone can prescribe and it is inexpensive.

Don't give up on new options, there are a lot of things to try. For general info I recommend a video by Dr. Pradeep Chopra called CRPS Diagnosis and Management" from 2014 on YouTube. Sorry I don't have a link. Plenty of good info in there on treatments and a non-doomsday approach.

I hope you find relief soon and am sending Healing Love,
Littlepaw

[Darcyreid]

Here is the YouTube link of the presentation Dr. Pradeep Chopra gave at the 2014 annual RSD Foundation meeting. It's long, but you can take it in bits. In it, he talks about what has and hasn't worked for his patients, including medications, Ketamine infusions, supplements and diet.

http://video.search.yahoo.com/video/...%2Cv%3Av&&tt=bHere is the YouTube link of the presentation Dr. Pradeep Chopra gave at the 2014 annual RSD Foundation meeting. It's long, but you can take it in bits. In it, he talks about what has and hasn't worked for his patients, including medications, Ketamine infusions, supplements and diet.

http://video.search.yahoo.com/video/...%2Cv%3Av&&tt=b

[Hope Star]

Thanks Russell for your welcome and reply. Glad your doc has found a cocktail that works for you.

[Hope Star]

Hi Dysautonomic, I used to be on Nortriptyline but my Pain Specialist changed it to Amitriptyline as it makes you very sleepy and my sleepless nights have reduced dramatically - its only when my pain is really extreme that I can't sleep and it has made me feel so much better. If you are having trouble sleeping it might be worth a try (I take 50mg a night). Good luck....