Reflex Sympathetic Dystrophy Support Group

The compound pharmacy my doctors used is located in AR, although my insurance did agree to pay for 40 grams, they wanted the pharmacy to charge me close to double what the cost actually is. The cost is $1 a gram, but some compund pharmacies will attach a coupon to your file, which they did for me, and charged me $25 for 40 grams. I just phoned in another tube yesterday, 40 grams is lasting a week but so worth it!

Barb

I have used several different combinations of "pain creams" over the past 3-4 years. I use it constantly! However, I've never had a HUGE amount of relief as was described, and that is wonderful to hear! I'm so glad for relief for any of us! I did use a cream with ketamine as one component about 2 years ago but got an itchy rash so stopped it. My pain doctor believed it was from a binding ingredient rather than the ketamine, but he put me on a cream with just gabapentin, lidocaine, and prilocaine. I've tried to figure out how this can be very helpful with the way that RSD works, but can't. I guess the nerve endings are really "angry" and the ingredients do a bit of calming them down to simplify the idea.

My cream wasn't going to be paid for, either, but I was able to get on as a hardship case with the pharmacy in TX that I use, and they overnight a cooler to me once a month with 7 tubes of the cream in it- each is 900 GM. Then a smaller one is in there also. I use it alost completely up each month. I've been desperate and can't take more medication, so there are only so many things to do to bring the pain down. I'm SO happy that a cream has been so helpful!

My pain doctor gave me samples of two compounded creams last month and wanted me to call back telling him which one worked the best so he could order it for me. I actually couldn't tell if either worked at all and the second one was a day that my pain got to a 9 and I was on the floor in tears. So, if it did anything it either made me hurt more or didn't do much, because my foot was bright red and the other was partly red, and really the pain was not something I could live with long term.

I can't wait to talk to my doctor in a couple of weeks about trying this other ketamine compound, unless that was what he already gave me. That will be disappointing. I think it's worth a try for anyone!

gail

Hi Barb!

I've been out of town so just read this and first of all am so happy for you that you've had the great results!! I have to know if the results are still great and lasting.. are they? I am SO hoping yes! Anyway, let me know when you can. I'm going to ask my pain doctor in 2 weeks if he will let me try it. He's great about topicals. Anyway, so glad for your relief!!

gail

Hi Howard!

What a great website! They had great information for anyone interested in a "pain cream" and I didn't have time to find out what all else they do, but I'll go back. Thanks so much for sharing that with us. There are so many things that I would miss without this group and without your information specifically. So, thank you so much!!

gail

Hi Gail -

Yes, the "Focused Pain Relief" site is really exceptional! If you (or anyone else) didn't catch it, under the "Physicians" area, there's a page called "Studies" that has PDF-formatted copies of at least two dozen scientific papers which, as you and other have found, are quite comprehensible to educated lay folks.

In general, everyone, please always check out any "physicians" area of any web site you read! It's only organized that way so physicians needn't waste their time reading stuff they already know. I have never seen a site that blocked access to their "physicians" or "health professionals" areas. Besides, as we've all learned, we know much more about CRPS than the average physician!

Howard

Gail,

So glad you got to go away, and hope it was relaxing! Thank you for asking, my wrsist continues to feel much better since using the compound. I have also been taking the Nucynta IR and seems to addressed the pain much better than the oxycodone. It's taking much longer to get the pre auth from the insurance for the ER form. They say you must be on the IR for 30 days before they allow the script to go through. I can actally say that I have felt to most human since this horrific ordeal began!

I have been married to MY BEST FRIEND for alittle over 24yrs and have never seen him display the type of anger he has since the RSD joined our family. I now can say I have never seen that same amazing man cry tears of joy that I have seen this past week! If it never gets worse, think I could tolerate what I feel now, of course thats what I say now...lol!

Howard,

You said it the best, "we know much more about CRPS than the average physician!" I have seen 2 surgeons, 2 pain mangement drs, 2 CHT's and not 1 has explained or educated me as well as this group has in almost 2 weeks!!!!

Being a member of this group is unfortunate for all of us, that mean we qualify, but what a group! Very supportive and helpful.....and for that we are all Thankful to have such good heart people in our lives. Where we can all reach out and be understood!

Wishing all a better day than yesterday!

Barb