Maybe I should see a neurologist in addition to the pain doctor to help me with these decisions. It looks like the approval for payment did not happen in time, so I think the test appointment will be pushed back.

I see a lot of bad rap about the actual surgical implant, but not much about the test. Have any of you done the SCS test? Tell me about your experience with that, because that is what is next on the menu for me.

This has to be one of the worst possible things that can happen to a person... I have so much pain in my upper thigh and back now, it has definitely spread and it is just too much to handle sometimes... it's like your pain tolerance is forced to go up through days and days of nerve pain beatings, but at the same time, the affected areas become more and more sensitive, touching one area causes a chain reaction in the whole string... not fun.

If I were you, I would get a second opinion from a neurologist. They are more educated on nervous system issues like rsd than pain management drs. PM drs are actually drs of anesthesiology. It can't hurt to get a second and maybe third opinion.
I never got the SCS trial even because my neurologist and gp were so against it. My pm dr pushed for it for about a year but I said no and finally started seeing another pm dr who pushes exercise and gives me meds to help me with my rsd pain. He is more conservative and tries to even keep pain meds to a minimum. I like him much more than the other dr.
Some people have liked the SCS but it wasn't for me. Everyone's different. You have to make your own decision, and whatever you decide, I hope you feel better soon. My thoughts and prayers are with you. From your friend, Renee.

Everyone has offered important things for you to consider and you are wise to do research and talk with many people before making this decision. For me, because of all the spine surgery and illness I have had, the spine surgeon did not want the pain management doc to do the SCS - too much risk of infection and risk of RSD spread. I have put my energy into exploring less invasive ways to cope with the pain - meditation, aquatic therapy, yoga, aromatherapy, pacing my activity level etc. I wish you all the best in making your choices.

Middle of the night, pain spiking, so I will be brief.

You mentioned the electric shock like pains that at one point doubled you over.

At one point, they were so bad with me, I didn't think I was safe driving, because I thought they would make me pass out. Baclofen has made a huge difference for me, with those shock pains. You might ask about trying it.

Thanks all, I am going to see a spine/neurology doctor who specializes in CRPS/RSD, my case manager found him and has worked with him in the past, and she is setting it up for me. The SCS trial did not get approved in time anyway, so it is pushed back. I have more time to research and consider it now, and I think it will help to get advice from this new doctor who has worked with many CRPS patients.

About Baclofen, it is one of the only medicines that helps me, but not so much with nerve pain, it helps with the spasms from muscle atrophy, and it doesn't make me fall asleep like other muscle relaxers. I did pass out from the pain last week, that is why I went to the ER. It hasn't been much better since, I got close to that level of pain today. I definitely do not feel safe driving lately.

So sorry you are going through so much, CRPS is a horribly condition. My daughter has been fighting for almost four years. We leave in the Chicago area and traveled to NC to see Dr. James North. I would highly recommend you see him. He does impatient K treatments and is very knowledgable with SCS too. Good Luck to you.

Good luck with the specialst. Let us know what treatment options you learn of. It is hard to find a doc truly knowlegable about CRPS.

I will look into that doctor, thank you for the advice!

Here is a picture I took this morning... looks even worse now after the walk I just took. I had my first complete break from taking painkillers last night for the first time in months, an am going through hell right now. The pain gets much worse in the evening, so I felt the full fury of it last night. Thank God for clonazepam, or else I wouldn't have been able to sleep. I don't like the side-effects of painkillers (currently on norco), they usually outweigh any relief I get, in the long run. They affect the mind and my digestion in a very unpleasant way for me, especially when your system is craving them...

Sometime in the next few days, I'll upload a "progression" of the CRPS with the images I started taking in June when it become more visible and when I got my diagnosis.

Attached Thumbnails

 

Feeling so helpless today I barely even know what it is like to not be in pain anymore. It is so hard to feel desperate for any relief at all while keeping your rational mind intact and thinking clearly. Is there any chance that this is going to stop spreading or go away? It has creeped into my back for sure since I got that sympathetic nerve block injection. So scary... this past year has been a nightmare of pain and anxiety, but all too real. Everyday I wake up in the morning and the pain is still there, it just won't go away... I am close to a breakdown, trying to hold it together...

Attached Thumbnails