View Single Post
Old 05-27-2019, 08:49 PM
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

Dear Tiago,

I am so sorry that your wife is suffering with this awful disease. I am grateful that she has your love and support. You will both get through this and must not give up hope. There are indeed paths to healing. It can take trial and error to find the right one. It is very frightening in the beginning and frustrating trying to find answers and what does and does not work. It's good that the gentle movements are helping.

Two of the most important things:

1. Please be certain that NOTHING has been missed in her medical workup. CRPS is a diagnosis of exclusion. And it can be caused by a treatable issue. Sometimes there is an issue creating the pain problem that can be identified and remedied. Also other issues can mimic CRPS. If imaging (CT, MRI, ultrasound or whatever is appropriate) has not been done, a thorough workup or second opinion might be in order.

2. According to CRPS specialist Dr. Michael Stanton-Hicks, 80% of CRPS cases improve over time. Odds are in your wife's favor.

Movement that is tolerable is very important. Some have found aqua therapy to be a huge help if the water is not too cold. I myself benefited greatly from it.

Desensitization of the skin with gentle touch and different textures is helpful too.

Medications other than gabapentin can help with neuropathic pain. Every patient is different and it takes experimentation to find what works. Some people have reported relief with nortriptyline or amitriptyline as well as celexa and some others.

Ketamine may be available closer to home. Madrid maybe? If ketamine infusions are given there for depression that could be a place to start. The week long inpatient protocol is not the only option. I received well over a dozen low-dose ketamine infusions (1 mg per kg) given over an hour or so here in the states. Over time, my nervous system was able to re-boot. It took periodic infusions over a year's time and some occasional boosters.

Do what you can to keep stress down. Healthy diet, mindfulness and psychotherapy with someone who works with pain can all be helpful.

For many it is a combo approach of many things that help a little, adding up to measurable relief.

My CRPS has largely resolved. I had a devastating nerve injury and a series of operations on my foot and ankle that caused it. The ketamine, oral meds, exercise and believe it or not playing piano (to get my brain to give some time to a different body part) all contributed to a slow and very gradual improvement. I still discolor a bit and get occasional stinging in a small area but it no longer takes over my entire foot or leg as it used to.

At 5 years out now, I run 5k, yes really! cycle, swim and hike. My pain doc is convinced my activity level is helping not hurting. Just know that it was a very gradual progression and I was and continue to be careful.

I am sending much healing love and soft hugs to you and your wife.
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BioBased (05-29-2019), birchlake (05-28-2019), Rain shower (06-15-2019), visioniosiv (05-28-2019)