Hello!

So happy to have found this forum! I got diagnosed about 2 months ago and am dealing now with spread to my other knee. Haven't gotten into a pain doctor yet but so far one of the most helpful things I've used has been kinesiology tape (also known as KT Tape and kinesio tape). Anybody else use this for crps/have any tips for doing it even better?

Thanks and wonderful to meet you guys!

Hi and Welcome
I am sorry you had to come find us but it is a great place for support, info and virtual hugs when needed.

I love KT tape! I get good results using it for swelling. Maybe that little bit of lift on the skin is enough to help lymphatics. The support is nice too. If you are having a hard time keeping up gentle exercise and range of motion, the pool is a great place. It helps with pain, swelling and circulation. Many of us are enthusiastic about swimming.

There is hope. According to some of the big CRPS researchers 80% of people will improve over time.

Sending Healing Love, Littlepaw

Really??!! That's great! I Assumed since I hadn't read about many ( if any) healing stories that it was a rare thing. I was reading that many people with crps actually have reduced nerve fiber densities when tested by skin biopsy. It is usually much less than than sfn patient ( average 25%vs 95%) but if crps can improve ( such a high success rate) then maybe I can too.

Does research say how long it takes to start improving?

Hi CG,

There are both positive and negative studies out there. I prefer to pay attention to the positive ones. Dr. Stanton-Hicks is a respected CRPS doctor at Cleveland Clinic. He states in an online interview "Ask the Expert, Complex Regional Pain Syndrome" on the CC website that 80% of people will get better when diagnosed early and treated with exercise and maybe a local block. I have seen this statistic multiple places. A PT review found 74% improved. Their data said most people improve between 6-12 months. I am sorry I can't post links today, challenging on iPad...

So yes, there are cases of improvement. Dr. Pradeep Chopra also says positive things about recovery. And you are right about the SFN, CRPS link, that work came out of U Mass from Dr. Anne Oaklander if you haven't seen it.

Sending hugs,

How much improvement are we talking? I am/was/stillam? an athlete and I'd like to have hope for one day returning to my higher impact sports.

It's possible! Channel that same passion that you had for learning sports as a kid into your recovery. All those same principles apply. Ask yourself not WHAT needs to be improved, but WHO is improving... and why.

As far as RSD/CRPS/whatever they call it these days, this is what it boiled down to for me:

1) constant gentle movement/ROM
2) massage/desensitization
3) diet change from acidic (inflammatory) to alkaline
4) positive physical environment (Tons of individual ways to boost this - uplifting music, get out in nature, reevaluate and let go of stressful relationships, work environment, etc)
5) positive mental environment change (meditation, visualization, affirmations)
6) antioxidant supplements like vitamin C, NAC, or grape seed extract
7) 50% DMSO applied to the trauma site(s)
8) mirror therapy
9) Service and prayer for others in a worse position than we are
10) following the Heart on the things we still CAN do

Many of these are wayyy easier said than done, of course.
All the best to you whiteaa

Couple of questions...

1. what is dmso? and NAC?

Also, I have several trauma sites. I can still move them so I don't know what I should do in PT. My back is very painful along my spine which makes sitting very painful. but I can still walk and do everything.

Thanks

What type of exercise are we talking? I have multiple injury sites but I am still mobile. They hurt and pulse a lot but they don't stop me from moving.
Should I just do any exercise? like general swimming? Also, what if you don't get a nerve block? What if it's already been 6 months and you don't have a diagnosis so you haven't received treatment?

Hi CG,

One of the problems with CRPS at a specific site; arm, hand, foot...is that there is a tendency to favor the limb and not use it properly because it hurts. The disuse exacerbates swelling, circulatory issues and atrophy as well as causing other problems from holding it in a weird way. Often CRPS results from an injury or surgery that impacts the specific limb, again creating issues. Obviously, site specific exercise won't address a whole body issue. However, swimming addresses everything and isn't stressful. Riding a bike, yoga, light weightlifting, stretching gently, walking..All of these things are helpful for body and spirit.

I would do what you can comfortably without stressing your body to the point of pain. You want your nervous system to get lots of interesting non-painful input. Today, I walked in sand and cold water. I have a nerve injury and weird sensations and pain. The walk was great because I had cold water, cool spray, hot sand, cool sand, hard packed and also squishy sand. I could get all these sensations depending on where I walked. My foot was so busy interpreting all that it just felt good and normal and didn't hurt.

I would not stress too much about the timeline. Many people come to a CRPS diagnosis late. I asked my neurologist in a panic at 6 months if I needed to really DO something about it. His response was that I was already doing everything non-invasive that could be done. I work out several times a week, take good care of myself, eat well and take medication and supplements to help my nerve stay calm. I try to stay positive and settled. It makes a difference for sure.

http://www.rsds.org/OLD/web/content/...ee-radical.pdf

My advice: do the movement that approaches what you feel you can do tolerably, and add just a tiny bit more. Walk that middle path. So if you are at 50% - then do 51%.