I'd never heard of RSD before and here I am. I'm trying meds and nerve blocks. Now deciding on spinal stimulator. Would like to know if you have tried the spinal stim if it was helpful and which ones you have tried.
Maybe I'll know something that can help someone else- I hope so!
thanks

Hello and Welcome Hotfoot,

I am sorry that you had to come join us but you will find understanding here. We all know how difficult it is, especially in the beginning. I can't speak to the SCS but recent studies advocate for its use earlier in the course of CRPS than was thought in the past. You'll find a sub-forum for SCS under the Medications and Treatments page where you may be able to find feedback on different models. There is also a search feature for the entire forum.

I hope that you get help with meds or nerve blocks. I am a firm believer in starting with the least invasive options first and going from there. Also if you have not had adequate work up or imaging advocate for it. If there is a treatable cause for your CRPS or something else mimicking CRPS like a nerve entrapment or unidentified stress fracture then treating can make a big difference in your outcome.

Hold on to hope. 80% of CRPS patients improve with time according to Cleveland Clinic specialists. Using your limb to the extent that you can without causing flare is important. If you aren't getting physical therapy it is a good place to start and aqua therapy is wonderful and has helped others including myself make improvements. Hang in there, try to keep stress down and remember to breathe. Improvement can be slow and gradual in coming but it does come.

I hope you find relief and healing soon,

Littlepaw- thank you!
I so appreciate your response and your encouragement. I've been hoping against reality that this isn't CRPS, but it is. I've been in PT for 6 months and it has helped a lot. There isn't a local pool to use and I'm not driving now. I'll check the SCS forum though, that's a good tip!
I'm going to hang onto that Cleveland clinic statistic- it seems there's so much gloom around this diagnosis and I know being upbeat helps decrease pain so I'm working on it. Ever use the protectometer iPad app? It's also a book and website. I find it useful. Thank you for the welcome and advice.

Welcome. I am sorry that you are going through this. Going through a rough patch myself at the moment...but know that we are here for you to offer support when you need it and answer any questions you may have. I hope you find a treatment that gives you relief.

Welcome Hotfoot. I'm sorry you have rsd but am glad you found this awesome group. I've tried NB and am using meds and "at Home" pt to help manage my pain now for six years. I thought about the scs early on but decided to maybe consider that as last resort if nothing else works anymore. But its a personal decision and everyone is different in their opinions of what works for them. It's something you have to decide for yourself. Just get as many facts as you can about the scs and several opinions from drs and then try to make the best informed decision that feels right for you. Also maybe check out info on other less invasive procedures to try to help manage your rsd pain better. Whatever you decide I hope that your pain starts to ease soon. Hugs.

I'm sorry that you're going through rough times now. I appreciate you welcoming me despite not feeling well. I see in your profile you've been through this for a while.
I'm hesitant to try the SCS. The blocks are pretty effective, along with the meds and PT. I'm trying to get back to work as soon as feasible.
I'm on this board to offer support also- I'm a willing ear.
I'll be here.

This response is a mixed one. I seem to have confused both your responses to me into one. After I realized it, I couldn't figure out how to fix or delete. So, embracing my imperfections - thank you both for reaching out to me. I will figure out this pain, how to connect with you caring people on these boards and I appreciate your kindness so very much.

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