Also have you considered a knee walker rollator device? I wish I had used one at the beginning to keep myself on my feet.

Last year I bought an adjustable bed which has helped me get better rest, helped the swelling far better than elevation with pillows & additionally has helped my eyes. I developed huge swollen eyelids that were beginning to impede my eyesight to the point an eye surgeon recommended surgery. I am lucky I refused, because within a few months of sleeping with my upper body slightly elevated all the fluid build up left my lids.

I am convinced that some of our CRPS agony is exacerbated by sluggish lymph. I use a mini trampoline to bounce my feet on.

You might be able to find a person to give your wife lymphatic massages.

There are 4 members of my family with CRPS. Three are on disability and one should be (me), but I still try to do what I can to earn a little money at my desk. I don't have a lot to add, as I have tried and tried many therapies and so far, can't say that anything specific helped me. Likewise, I take various medications, but can't say anything is working well for my CRPS. I am writing because of the family members I have with CRPS, three of us are still active (that doesn't look the same as active with non CRPS people, active for us is usually confined to our houses mostly). There is one who went to bed and never got up. He got huge in the belly and everything else shrunk to nothing (arms and legs). He is doing worse than the rest of us (I believe it's because he went to bed one day and never got up again). He grew bitter, then angry, then suicidal, and is a mess.

I do things around my house as much as I can, but I don't accomplish what others do in the course of a day. I have a small career, and do desk jobs mostly. This keeps my mind and body active enough to feel like I have a piece of life happening. 22 is really young and I am so sorry to hear this has started for her so early. Your commitment to her is amazing and I am grateful for you !!!

In the USA, doctors don't agree on how to treat CRPS. Even at the large teaching hospitals, their protocols are vastly different, with none being touted as "the cure or a great treatment" for CRPS. The doctor I have now is willing to try various things to attempt to help me, (he is an anesthesiologist), but so far, nothing sticks..... Ketamine is very expensive, with a course of therapy running around 12k. My doctor says, as do many teaching hospitals, that it's results aren't stable enough to say that it truly helps CRPS patients. Also, those treatments must be repeated, and 12k a pop is ultra expensive, so for me, we've decided against it at this time.

I am being told by my doctors that a body in motion stays in motion, so their goal for me is to continue to work for mobility and function, whatever that looks like for me. I am in an electric wheelchair, but I get up and down sometimes through the day and move as best I can in it so that I stay in motion. I hope there is some way to get your wife up and moving some, so that she can participate in life to any degree. Laying in bed works for a while, but I know my mind, and it wouldn't be long until my thoughts and perceptions got the best of me.

It helped with pain but I discontinued after 3 days due to side effects. I would still try it but be a little leery...for me it was insomnia, anxiety and great relief...for 3 hours. Then the pain came back with a vengeance worse than before.

Just wanted to update since I had recommended it earlier in this thread. Based on that experience I went back to hydrocodone for now.

I wish you the best.

I am in Belgium.

What is wrong with standard treatment in Portugal, that you aren't "following" that?

I get gabapentin (900mg 3 times a day) for the pain together with buprenorphine pain patches and sublingual tablets.

I have this in my legs, fully, and hands/shoulders/fingers.

In my legs (diagnosed 3 years too late) it is chronic, nothing can be done.

I totally understand not getting out of bed; before I got the pain medication I was in there 24/7. Now I do bedrest until 10-12AM, so half the day. It is still quite unlivable but the pain medication helps a huge deal!

It is atrocious.

My arms aren't yet disabled, as my legs are, and for that I get calcitonin treatment.

I have had bisphosphonates (for recalcitrant RSD/CRPS) as well -> for the legs).

I have had all common EU treatments, even went the Dutch route with Lysomucil 600mg 3 times daily (anti-oxidant treatment). Never touched the DMSO however, too dangerous in my book!

Anyway I wish you the best of luck, because this is a horrible disease and a rare disease to top it off. Not all doctors are even aware this exists. So you have to look for a doctor that understands and has done research on it.

Good luck!

Good luck.

I have to believe more exercise is needed. I know how hard this can be but even bed exercises can help. At such a young age the lack of exercise isn't quite so catastrophic but it will catch up with her in the long run.

I've found Ginkgo biloba to help with pain and make the gabapentin more effective. I take 60mg in the morning and 120 at night.

This is a tough condition and it seems to affect us each a little differently. But it seems most of us come to deal with it a little better over time. Being young gives her an excellent chance for a remission.

I was 23 when I had my car accident. My CRPS is chronic and has led to a disability; both legs affected. Being young has nothing to do with going into remission or not.

It depends on how this is treated. And treatment is necessary. And then again, sometimes treatments don't do a thing. Also something to take into account.

I was young. I am 46 now and am still stuck with this thing!!!

I have to agree with the above recommendations to try water therapy. If you have access to a warm water pool (usually associated with physical therapy offices here in the US) try that, if not maybe try walking in a local pool. You can use a flotation device to aid in balance and to take some pressure off of your legs.

With CRPS if you don't use it you lose it. It is very important to do range of motion exercises and some weight bearing activity daily.

I have a friend in France that put an infrared sauna in her home because using it really helped with that burning, cold ache. She found that the relief lasts longer than a heating pad.

I also tried Scrambler/Calamar therapy and didn't get any lasting results. What works for me is injections during a flair and ketamine every three months. The problem with ketamine is that it's dose-dependent and there is no consensus on what dose is the best. For me, ketamine alone did not work. Once my doctor added lidocaine in with the ketamine infusion my pain was dramatically improved. I get 500mg Ketamine and 100mg lidocaine infused over several hours every three months. I recently tried 250mg ketamine, 100mg lidocaine, and a steroid. That dose didn't work as well for me. I know many providers use a significantly smaller dose. Finding a good pain doctor that either knows something about CRPS or is willing to learn is really important. It has taken me almost seven years to figure out what works for me. Don't give up.