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@faithwalker007

Thank you so much for welcoming me into the forum. I've never been good at this kind of thing. I will say that it is easier for me to talk about this stuff than my husband. Maybe it's because he has never been officially diagnosed with anything, in particular, that is causing his excruciating pain every day other than his repetitive surgeries. No one will even give him a reason why he is always needing surgeries over and over again. I don't blame him for being frustrated and angry at the medical world. I never gave up until I got an answer. It wasn't one I liked...CRPS Type 2 isn't something anyone wants to hear. Who wants to hear they have the most painful condition on the planet? Right?
But James (my husband) has been suffering for eight years and no doctor (and their has been many) has a clue why. He has neuropathy in his feet (no diabetes), carpal tunnel in both hands, shoulders that pop in and out of place, hip and back pain, severe leg pain...the list goes on and on. My heart breaks for him just as his breaks for me.
Our life is the nightmare that nobody wants.
We don't fight it alone, but believe me, I wish he had answers for at least a part of his struggle to survive.

Switching to a new pain doctor is a scary experience and I will be praying for you, Karen. I want to do it as well. Right now, we have to travel 2 and 1/2 hours one way to mine every month and the provider I see has no clue about CRPS. She sees me for 10 minutes and asks ME what I want to do. She tried to give me oral Ketamine last month because it "worked with a diabetic neuropathy patient." She said she'd heard Ketamine was helpful with CRPS but to do my own research and let her know if I wanted to try it. I called my neurologist and he didn't recommend oral at the dose she wanted to prescribe. He said that for my condition and pain level only IV infusion in a clinical setting over a period of two weeks would be effective due to my migraine history and epilepsy.

Please keep me posted how it goes with your appointment! I'm praying. Thanks for the contact.
Renee

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Replies to "Thank you so much for welcoming me into the forum. I've never been good at this..."

@faithwalker007 , I commend you for being cautious, and for discerning the difference between good doctoring and what sounds like inept or tentative doctoring. I understand how frustrating and discouraging it is to be unable to get a prognosis or even a diagnosis. I feel the same way, and one of my sisters spent close to ten years and saw a string of specialists, hearing one diagnosis after another, only to find out that none of them were correct. I pray that God will lead you to the right person who will put together James's problems and symptoms and have the Spirit's wisdom.

Blessings,

Jim

@faithwalker007 When you say that his shoulders are popping in and out of place, it sounds like it is an issue of overly tight muscles and fascia in the chest and neck. A lot of doctors are not familiar with treating this with myofascial release which is a gentle stretching with physical therapy. It may be something to look into and try to see if it helps. There can be layers of tight tissue preventing normal movement and causing nerves to be compressed resulting in pain. I do MFR for thoracic outlet syndrome and it has relieved my pain. Low back pain can be caused by overly tight hips, hip flexors and the psoas muscle that attaches to the spine and pulls on it. MFR can help a lot of physical issues. It may be able to help carpal tunnel, and sometimes thoracic outlet syndrome (which I have) is misdiagnosesd as carpal tunnel because the symptoms overlap. My TOS was missed, and I also did have carpal tunnel. I also wanted to add that surgeries cause scar tissue in the fascia and make it tighter. The fascia is a web extending through the entire body and if you already have tightness, adding surgical scar tissue will make it worse. You may want to look for an expert level MFR therapist to help. You can search at this link. https://myofascialrelease.com/find-a-therapist/

Here is our discussion where you can find information and links and some info on TOS.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/