Hi Hotfoot! Welcome to this group. I am sorry that you have to deal with RSD, but there is hope. I have never tried SCS. I heard good things from people who were helped by it, and bad things from those who had equipment failures, more surgery, more pain, and infections. I am with those who say try all the least invasive procedures first.

I was happy to see that you have been receiving PT. I know that helped me immensely. I try to use all the little things that are non-medical but help reduce the pain, simple things like moist heat, soaking in warm water, covering up even in the summer to avoid pain from breezes, using pillows in the car to reduce pain from vibrations, stretching, and relaxation exercises. The most important thing for me is to keep moving. It is actually a balancing act between resting and moving.

I have had bad side effects from many medications, but I am able to tolerate ketamine infusions which I now receive every three months. A few days of feeling loopy is worth the pain relief for me. Sorry for rambling. I just want to say that you need to try what is available and find what is right for you. There is no "one size fits all" in the RSD/CRPS world.

Good luck and remember that there are others in this struggle with you and we are here for you whether it is to try and answer your questions or just offer an ear and support.

You are in my thoughts and prayers.

Shay

Thank you Shay! I agree with doing the least invasive thing first. I'm still doing blocks and they do help me do more PT. My doc is also talking about ketamine but says I can only do day single day outpatient IVs once in a while bc of insurance. Everything I've been reading says it needs to be more- like a week of continuous infusion. If it's okay to ask, what schedule have you tried (optional question to answer though).
The gabapentin works for me but the long acting one was a nightmare. Everyone does need something a bit different I've been seeing.
Thank you for your greeting and your prayers and kind thoughts-
I'm here everyday with a willing ear also.
Hotfoot

I'm praying for everyone everyday with chronic pain

I know that some insurance companies can be difficult when it comes to paying for ketamine infusions. I had to file an appeal to finally get them to cover it. My infusions started as a 2 week out patient. (5 days; weekend off; 5 more days.) They gradually increased the amount of ketamine each day. Each infusion lasted about 4 hours. After that there was a set schedule for boosters, but because my liver enzymes were off, I had to wait for 3 months before the next one. I am now on the 2 days every 3 months schedule and my liver enzymes have been good. I can't see how you can get the amount you need in just 1 infusion every once in a while. I sure wouldn't want to receive the full dose that I get now without it being titrated up slowly. It works for me, even though I couldn't follow the initial booster schedule.

Consider getting as much information as you can about it and filing an appeal. Some insurance companies will work with you. Otherwise if you have the finances for it consider private pay and shop around for price. Some places will work with you. Where I go the private pay price is up to $275 per infusion. For me that would be $550 every three months. There is another clinic nearby that charges $1500 per infusion. Big difference is that one is a medical school and the other is a private clinic.

You probably know that it doesn't work for everyone. There are also side effects, but there are also drugs to help counteract some of those side effects. As with every treatment, there is the chance it will help or not and the chance that the side effects will be mild for you or not.

Hope some of this information is helpful. Good Luck!

Shay

Shay,
Thank you! That is really good information for me. I've been asking a lot of questions of my doctor and getting info here plus researching medical/ pain science researchers to get a lot of ideas and opinions. For now the program I'm using is working, but I like to have something thought out in the wings in case I need it!
I'm glad for you that you've found something that works for you!
Best,
Hotfoot

Yes, gathering this information ahead of time is a really wise thing to do. I do get concerned that eventually I may need a different approach and I have been pleased with my latest doctor's knowledge regarding different meds and approaches. I do appreciate this site because people share what is working for them. Your input and input from people like Littlepaw who shared the latest info on clinical trials is so important. The more we know now the better we will be prepared to make new decisions if the need occurs.

Thanks for your and all of the members' input on this site.

Shay

Shay-
I agree having alternatives researched ahead of time or just familiarizing myself with options does make me feel more in control and more prepared for whatever changes. I was talking with someone I trust about RSD being without a cure and they named off diabetes, blood pressure, heart disease etc which also have no cure. It helped me gain some perspective after a difficult week.

Little paw mentioning research studies was great because I printed studies out for the foot doctors staff this summer, but never considered it for myself! 😊

For anyone reading this thread:
I did want to add about the gralise that the part I had the biggest problem with was that because it is time release I wouldn't know when I could get relief, couldn't plan when I'd be safe to drive or modify the dose if I was in less pain and didn't want as much in my system. So it felt like a roller coaster ride. Also, the change from 2700mg gaba to 300mg gralise (going up to I think 900 by the fourth day and staying at that for 4 days) left me really under medicated and the side effects from the rapid decrease were uncomfortable. I'd recommend a slower reduction of gaba if on a high dose and I did speed up the gralise faster than the starter pack which was very helpful.

And that's all from me now, thanks for reading a long post.

Hi Hotfoot,

A word on the ketamine protocols...if you get in a bind and need something added to your routine, weekly ketamine may actually be able to help. The majority of studies are done on the 10 day treatment but there are other methods. My PM now only administers ketamine once a week at his clinic and that seems to be working for many of his patients. For me, it was the build up over time of weekly then bi-weekly, then every 3 weeks, etc that helped break my pain cycle. Now, like Shay, I only go every 3 months for a one session booster. This has been keeping things pretty under control and going once a week was a lot easier on me in the beginning both physically and financially. My cost per session is in keeping with Shay's as well. My infusions run $300.

There is such a thing as long-acting gabapentin? If I'm not mistaken gabapentin is not like a regular pain medication and is in itself long-acting. I can't make heads nor tails of this. Can you explain it to me? I've never heard of this.

Gabapentin isn't a typical pain med, you are absolutely right, but it is short acting- which is why people take it 3 times a day.
Gralise has been available for about 3 yrs, it's only brand, no generic, and you take it once daily- which can be really convenient for people. You take it at night with dinner. It's not one for one with milligrams of gabapentin, and you can't take your regular gaba pills with it, but it is gabapentin. The pill or pills of gralise actually expand from gastric secretions and stay in your stomach for the 24hrs.
The starter pack starts at 300mg and increases to a max of 1800 mg.
I hope this makes sense~
Hotfoot