CRPS - anyone suffering with complex regional pain syndrome

What does Celine Dions illness have to do with AA? Or crps

The symptoms and lack of any real treatment. I am going through the same gyrations for muscle spasm pain.

My wife has had CRPS for 18 years having tried all the usual meds, sympathetic blocks, IV Ketamine continuous infusion x 6 days, acupuncture, chiropractic treatments and more. Has anyone tried Calmare scrambler therapy? If so what were the results? Thanks

Welcome @socalfp, I know it must be hard for your wife having had to deal with the CRPS for 18 years and not finding much relief. There is another discussion on the Calmare scrambler therapy that you might want to read to learn what others have shared:
-- Hope: Starting Calmare scrambler therapy:
https://connect.mayoclinic.org/discussion/hope-1/

Is your wife considering Calmare scrambler therapy?

Are there any suggestions for swelling and burning pain relief from CRPS? Im newly diagnosed (left foot) and waiting for an appt with therapy and pain dr.

Momoffour, my name is Finny4606. I was diagnosed with CRPS about 3 years ago, in both legs, and it’s very painful every single day. Then I was referred to an orthopedic familiar with CRPS, and he said I was misdiagnosed and he referred me to a spine specialist and he said I needed spine and back surgery but it’s no guarantee that the surgeries would provide pain relief, maybe giving 30% relief, I am waiting for the Mayo Clinic to decide if they’re accepting me. Depending on their answer, I’m thinking pain pump or dorsal ganglion root stimulator or even pain meds. Good luck.

When doctors disagree, it’s important to pin down why each one thinks it’s a particular diagnosis and identify how the disagreement could be resolved. . It’s also important to insist on being a part of that conversation and to ask the physicians to probe more deeply why the diagnosis is being made or changed before being asked to make decisions about which treatment to have.

In my daughter’s experience with cancer treatment at Mayo, the Mayo team did exactly that. In my other daughter’s experience with CRPS in California, it has been a lengthy and difficult process.
But while we needed to nudge the conversation into existence, we did learn quite a bit. For example, an orthopedic doctor with knowledge of CRPS ordered a triple phase bone scan to determine her CRPS diagnosis in combination with her objective symptoms and her description of pain.
For spinal conditions, perhaps a doctor might order a CT or MRI scan to see whether there is a condition that aligns with symptoms and type of pain. But however they determine a diagnosis, that should happen with a reasonable and reliable degree of certainty before recommending how to treat your condition .
There might be other tests or clinical examination that should be done if there are other diagnoses under consideration.

In addition, treating CRPS might take a different path than treating a spinal condition. The placement, for example, of a spinal stimulator makes a big difference as well as the type of programming used. With CRPS, some physicians use DTM programs (targeting glial cells) instead of standard programs used for spinal conditions.
I hope you can find a clinical team that can explore your questions and resolve this with you soon.
Best of luck.

That’s very good 👍 to know.
May be worth getting a second opinion, I am currently totally disabled from my waist down, i believe now it attacked my upper body with 2 heart attacks, before my pelvic area and hips all began to hurt. Now the pain is in my left leg, and butt. My PCP said I was suffering from CPS, which I never had heard of, and that all my other pain was from Fibromyalgia. I told him I didn’t believe it because a CT scan showed that I had Pelvic Congested Syndrome, and my PCP still refused to believe the results? I requested a repeat scan that showed me to have very rare condition called Nutcrackers Syndrome, and a rare ischiofemoral hip impingement that is Most likely causing my severe pain. He is agreeing with me on following up with an expert for this Very Rare Condition. I’m also following up with a Neurosurgeon to rule out other things that could be causing this crippling condition, I have had L5 -S1 fusion and C4,5,6 fusion 2005, 2007., no problems with any of those but I am hoping now they can resolve this problem. If anyone else has any knowledge about these conditions please let me know what treatment they did if any to relieve pain

I have had CRPS for 23 years. I have it on the right side of my body. I take Cymbalta, Gabapentin, 600 mg 4 times a day. I now have a cream that can be used every eight hours. It’s a combination of ketamine+baclofen+cyclobenzaprine+gapapentin+lidocaine+lipoderm. You have to get it at a compound pharmacy. My doctor recommended it and it is wonderful! It relieves the horrible burning and hypersensitivity. The gabapentin helps with the burning also! You have to talk to a pain doctor about these meds. My osteoporosis doctor is the one who recommended the cream. It has helped me a lot with the burning. What kind of pain does your daughter have? The doctor told me that my legs would have atrophy, but that has not happened. Your daughter needs to stay as active as possible so her limbs won’t do that. I had to go on disability at age 46 and that was horrible but I had no choice. I also have a very cold foot that requires constant heat 24\7. It’s hard to deal with but it’s not taking me down. I am also on a opioid for spondylosis in my neck, but it doesn’t help with the CRPS.

What is DTM programs? Thank you.