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Posts (11)

Fri, Feb 28 1:00pm · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

I'm sorry you are going through this. My daughter was diagnosed with CRPS in October 2019, she is 10. I've been corresponding with parents for several months on a Facebook Support page for parents and collected helpful information. It is very slow & painful progress as it is like learning to walk again, but here is what I've found is the best treatment in my opinion. Remember you are building a new pathway to the brain in telling your brain that there is no longer an injury and you will use that foot / leg. As painful as it is you must move/ use your foot to build that pathway otherwise it will spread as the glia cells will look for new receptors. Use your foot!! The most successful treatment is too keep moving your foot. Frequent physical therapy and occupational therapy, desensitization to the effected area. Meaning, touch with a feather, then cotton swab, eventually tissue, towel, baby brush, etc. Daily for 3 minutes, every 2-3 hours. Soak your feet in warm water. Move your foot in a tub of rice or dry beans. Sit on a yoga ball and put feet flat on padded surface or pile of blankets. Move back and forth. Swimming in heated pool. Don't give up! Small progress is better than none. We went from crutches, one crutch, to no crutches, walking on tip toe. It was hard and It still hurts her like crazy but she's are working on it. The programs that are recommended for her are pediatric intensive pain rehab programs either outpatient or inpatient/ 4-6 weeks, 9-5p where patients learn to mentally cope and move through pain, making that new pathway. Patients can go in remission!! There are programs for adults too. I would do as much as you can yourself, put yourself on a schedule to be as proactive as possible while getting more information and how to move forward.

Wed, Jan 29 7:48am · Complex regional pain syndrome or reflex sympathetic dystrophy in Chronic Pain

@overwhelmed, I am so very sorry you are suffering.

I don't think @janetpr meant it is "all in your head" as a "psychological" issue but rather the "physiological" process that takes place in the body with CRPS. Our brain is amazing but also complex, it drives the central nervous system throughout our entire body.

In CRPS, the brain makes pathways to the effected are of our body that is out of proportion to the injury which occurred. The new pathway send pain signals, in which we stop using that area, then glia cells (and free radicals) build up and the process continues, the brain keeps sending signals. By using the area, it is painful but can build a new pathway and tell the painful pathway there is no injury and try to reverse. In explaining it to others, I sometimes refer to phantom limb pain. The pain is very real, the brain is indeed sending pain signals, but out of proportion to what actually exists.

I am very open to both traditional, alternative, functional medicine and research the underlying scientific & physiologica basis for any treatment.

Nice lecture from Dr. Chopra at CRPS /RSD Conference.

My preteen daughter was diagnosed with CRPS (foot) and after weeks of sifting through medical research, abtracts, watching lectures and presentations, speaking with others I've personally come to conclusion for treating her. Build new pathways to the brain by desensitizing "moving & using" her foot. Relearning to walk again. It is a slow process, takes time and perseverance. It is also painful for her but she is improving. In fact, on days she isn't moving, the pain seems to be worse at night.

I am corresponding with other patients and parents of children w CRPS & CRPS patients all over the country and the world. Several are treating their children at Pediatric Pain Rehab Programs such as Boston's Children's, Nemours Orlando, Seattle Children's, Philly CHOP, etc. which 4-5 week daily programs 9-4p, outpatient. I believe there is a program for adults at Mayo. Still a long way to go and teaching her how to manage her disease and equipping her with tools in the future.

She is in outpatient physical therapy, PT at home ~ off crutches now but walking tip toe on her effected foot. Still painful but a little less and gaining function.
Not for everyone, but many patients respond to this treatment, retraining the brain and makes a new pathway to the brain regarding pain response.
Kind Regards.

Wed, Jan 29 7:12am · Myofascial Release Therapy (MFR) for treating compression and pain in Neuropathy

I am considering MFR for my preteen daughter who has Complex Regional Pain Syndrome (CRPS) Any recommendations for for a practitioner in the Jacksonville Beach / Intracoastal Areas?

Nov 13, 2019 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

Thank you. I'm very sorry for your pain.

Scrambler Therapy (ST) is one of the treatments I am looking at for our daughter with Chronic Regiona Pain Syndrome (CRPS) It was formerly (RSD) .

There is a physician in Bonita Springs, FL – Dr. D'Amato who does Scrambler Therapy (ST) He is well respected in the field and I believe he has actually trained some physicians at Mayo. I think Mayo is starting to offer ST but I'm 100% sure. You are right, I'm finding treatment outcomes can vary widely with patients. There is not a one size fits all with neurological issues and many times a combination of therapies.

Nov 12, 2019 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

Yes, I should have clarified. Thank you. Chronic Regional Pain Syndrome (CRPS) formally Reflex Sympathetic Dystrophy (RSD)

Nov 11, 2019 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

Look up Spero Clinic in Fayetteville Arkansas. Dr. Katinka is doing some interesting things. Also, Scrambler therapy. Watch Dr. Chopra's lecture on CRPS via YouTube. There is a link between gut health and CRPS and possible link of MTHFR and CRPS. There is hope.

Nov 11, 2019 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

Don't amputate. Surprised how many do not know how to treat this Chronic Pain Disease. Look up Spero Clinic in Fayetteville, Arkansas. Also Scrambler Therapy – Mayo Rochester and Dr. D'Amato in Bonita Springs, FL. Go on YouTube and watch lecture by
Dr. Chopra. Informative. Also articles on links with gut health & MTHFR with CRPS. Sounds like he has been treated mainly for symptoms and whole body, reason behind the CRPS. There's hope.

Nov 11, 2019 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

I heard Mayo Jacksonville may start Scrambler Therapy also. Dr. D'Amato is in Bonita Springs, FL and he is well known for his knowledge with ST.