[newyorkmets]

Has anyone tried it with CRPS? I'm asking because LDN has not worked as well as I hoped, and it's been 6 months even though I've heard it sometimes takes longer. I'm getting 10% relief from it and really want more. I have a doc appointment tomorrow and will discuss other treatments like DRG, creams etc. thank you!

[CRPSbe]

Originally Posted by newyorkmets

Has anyone tried it with CRPS? I'm asking because LDN has not worked as well as I hoped, and it's been 6 months even though I've heard it sometimes takes longer. I'm getting 10% relief from it and really want more. I have a doc appointment tomorrow and will discuss other treatments like DRG, creams etc. thank you!

Has your doctor ever talked about Neurontin (gabapentin) or Lyrica (anti-seizure medications)? Those are the common medications for nerve pain.

[newyorkmets]

Originally Posted by CRPSbe

Has your doctor ever talked about Neurontin (gabapentin) or Lyrica (anti-seizure medications)? Those are the common medications for nerve pain.

I've tried both but sadly they are not for me. Thanks CRPSbe!

[Littlepaw]

Hi NYM,

Pentoxifylline presents some interesting possibilities. I had a pharmacist suggest it to me at one point but no docs interested in prescribing it. It reduces inflammatory cytokines, decreases microglial activity and also addresses microvascular changes. Sounds like something worth considering.

Did your doctors ever look at ketamine for you or possibly the neridronate trial coming up? That will probably be at multiple sites like the initial one was.

I hope you have a good appointment tomorrow!

[CRPSbe]

Originally Posted by newyorkmets

I've tried both but sadly they are not for me. Thanks CRPSbe!

Oh, OK. Just thought I'd mention them, because often it's the first thing that is suggested, as it helps many cope with the pain better.

I'm sorry it's not for you, and didn't help.

[Sophie0513]

Originally Posted by newyorkmets

Has anyone tried it with CRPS? I'm asking because LDN has not worked as well as I hoped, and it's been 6 months even though I've heard it sometimes takes longer. I'm getting 10% relief from it and really want more. I have a doc appointment tomorrow and will discuss other treatments like DRG, creams etc. thank you!

QUick Question New York Mets! This medication that you are asking about..what type of CRPS symptoms is it supposed to help???

[newyorkmets]

Well that was unexpected. Doc thinks I might have something rarer than CRPS and potentially a movement disorder. More neurologists yay! More uncertainty yay! I'm kind of tired to be this far down the road and still searching for answers, confirming diagnosises. I was also put on baclofen to see if that will stop the shaking that makes the hospital think something is going on here. Asked about ketamine cream and was told it could cost $1500, is this true? Please give me more patience

[Sophie0513]

Originally Posted by newyorkmets

Well that was unexpected. Doc thinks I might have something rarer than CRPS and potentially a movement disorder. More neurologists yay! More uncertainty yay! I'm kind of tired to be this far down the road and still searching for answers, confirming diagnosises. I was also put on baclofen to see if that will stop the shaking that makes the hospital think something is going on here. Asked about ketamine cream and was told it could cost $1500, is this true? Please give me more patience

Hang in there NYMets..
As for the ketamine cream..I'm assuming that you are talking about a compounded cream?? I just had some prescribed to me awhile back..it had Ketamine, gabapentin, lidocaine etc and it cost 140.00 for the tube.

[Littlepaw]

NYM,

Geez, let's hope if it's something more rare it at least has a more definitive treatment. I'm not arguing with your doctor of course but there are movement disorders associated with CRPS. We actually have a member whose primary symptoms are motor related.

Movement disorders in complex regional pain syndrome. - PubMed - NCBI

That said, you know I am a huge fan of an adequate workup. It is always good to have information. I don't know/remember how you ended up with CRPS or what was done to rule out other problems. Nerve conduction studies and imaging can be quite helpful. A fresh set of eyes on your case from a new perspective could make a difference for you.

I'm with Sophie on the ketamine cream. My topical has it and it's less than $200.

I hope that taking this new direction gives you information that is helpful. Turning over a few more stones is not such a bad idea. Please let us know what happens. It would be wonderful if this opens another door to healing.

[newyorkmets]

Originally Posted by Sophie0513

Hang in there NYMets..
As for the ketamine cream..I'm assuming that you are talking about a compounded cream?? I just had some prescribed to me awhile back..it had Ketamine, gabapentin, lidocaine etc and it cost 140.00 for the tube.

Thanks for the support, Sophie! I was reeling for about 2 hrs from when I posted a update but had so much stuff to get done that day I had to move on. With an appointment with the folks at movement disorders, basically another neurologist (the groups of docs I've had the least luck with), coming up in a few days - I'm a little nervous again. Hopefully, I'll have more answers then and with as few pokes as possible. I can't have an MRI done with SCS so I don't know how they'll really do much more testing other from a clinical point of view. Thanks also for mentioning the price of the cream you buy, I knew his number didn't sound right. Does anyone think it can be covered by insurance? I just want to use the cream to apply some sort of lotion to my sensitive thigh. It really needs to be desensitized and I hear it takes a long time, which I why I haven't started.