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CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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stantallusa | @stantallusa | Feb 10 11:38am
In reply to @barbbielor "I was dx by a trip to the ER with burning foot pain. I was at..." + (show)
@barbbielor

I was dx by a trip to the ER with burning foot pain. I was at PT at the time and they called the ambulance. It was a result of foot surgery. About four years later I found a pain management specialist who was very familiar with CRPS. I also have Small Fiber Neuropathy dx by two biopsies taken from my leg. It's hard at times to distinguish one from another. My trip with care has been spinal cord stimulators - one implanted in 2012 , another 2018, currently I am on Low Dose Naltrexone and that is taking a lot of pain away. Before that I have had sympathetic nerve blocks that have helped with the rest of pain LDN hasn't helped. The next step for me is RFA of the nerve he blocked.
I too had been without help until the third pain management doctor passed me on. I received a phone call from my current doctor asking me to be his patient. That was 12 years ago. He took me on because he feels everyone deserves the best care and he likes a challenge! I pray you may find that right person.

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Who was that DR. What town. I am 75 years old and have been trying to find a DR that could or would help me. Never have received a call from a DR expressing a desire to help me

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1 reply
barbbielor | @barbbielor | Feb 10 12:03pm
In reply to @stantallusa "Who was that DR. What town. I am 75 years old and have been trying to..." + (show)
@stantallusa

Who was that DR. What town. I am 75 years old and have been trying to find a DR that could or would help me. Never have received a call from a DR expressing a desire to help me

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I live in the Capital District of NY. Albany ,
Saratoga Springs area. He was the second doctor who asked me to be his patient. 15 years ago I was going to an osteopathic clinic when the director asked me if I would be his PCP patient. He has told me he will stick with me until the end. He will even make house calls if needed which is a big deal as I live in Albany, NY and his office is in Pittsfield, MA! Both of these doctors are the same age as my older son so they will be around to care for me as needed.

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3 replies
BeBold | @bebold | Feb 10 3:12pm
In reply to @cincin3 "I’m wondering how you get a diagnosis of CRPS? I’m 4 years into undiagnosed chronic pain...." + (show)
@cincin3

I’m wondering how you get a diagnosis of CRPS? I’m 4 years into undiagnosed chronic pain. Have been to 3 Ortho, Rheumatology, pain mgt, 3 different PT’s, and a chiropractor who have all ended up passing me on to someone else.

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I got it after back surgery and was diagnosed by my neurosurgeon in 1979 within 12 hours of surgery with Causalgia. I didn't know at the time that diagnosis was difficult but at the time there was also zero treatment. I've basically spent my entire life on crutches. And as I turn 69, it's gotten worse and worse after covid so now I'm looking at a wheelchair. That's feeling very difficult. Agjng, live alone, and spreading CRPS. Scared sometimes.

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stantallusa | @stantallusa | Feb 10 8:03pm
In reply to @barbbielor "I live in the Capital District of NY. Albany , Saratoga Springs area. He was the..." + (show)
@barbbielor

I live in the Capital District of NY. Albany ,
Saratoga Springs area. He was the second doctor who asked me to be his patient. 15 years ago I was going to an osteopathic clinic when the director asked me if I would be his PCP patient. He has told me he will stick with me until the end. He will even make house calls if needed which is a big deal as I live in Albany, NY and his office is in Pittsfield, MA! Both of these doctors are the same age as my older son so they will be around to care for me as needed.

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Damn. Good for you.

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mmorley | @mmorley | Feb 11 4:28pm

Thank you for sharing helpful info on treatments for chronic pain. I deal with 3 types...neck, bladder, and upper abdomen. I'm going to ask my drs. about the possibility of CRPS and Nero Chiropractic as possible treatment. My neck muscles never healed well after Cervical fusions years ago for herniated disks and I have daily headaches and neck pain. I have Interstitial Cystitis (chronic bladder pain), and now experiencing upper abdominal burning (not in stomach). We must pursue every avenue in our quest for comfort. This forum is new to me and I find it helpful to hear other people's stories and support to be heartwarming. Best wishes.

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martyo321 | @martyo321 | Feb 12 6:32am
In reply to @barbbielor "I live in the Capital District of NY. Albany , Saratoga Springs area. He was the..." + (show)
@barbbielor

I live in the Capital District of NY. Albany ,
Saratoga Springs area. He was the second doctor who asked me to be his patient. 15 years ago I was going to an osteopathic clinic when the director asked me if I would be his PCP patient. He has told me he will stick with me until the end. He will even make house calls if needed which is a big deal as I live in Albany, NY and his office is in Pittsfield, MA! Both of these doctors are the same age as my older son so they will be around to care for me as needed.

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Can you send me the name of that Dr in Pittsfield.
My brother was recently diagnosed with CRPS. He lives in Monterrey but until his illness worked in Pittsfield. It would be much appreciated

Thanks
Marty Hirsh

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1 reply
martyo321 | @martyo321 | Feb 12 7:09am
In reply to @barbbielor "I live in the Capital District of NY. Albany , Saratoga Springs area. He was the..." + (show)
@barbbielor

I live in the Capital District of NY. Albany ,
Saratoga Springs area. He was the second doctor who asked me to be his patient. 15 years ago I was going to an osteopathic clinic when the director asked me if I would be his PCP patient. He has told me he will stick with me until the end. He will even make house calls if needed which is a big deal as I live in Albany, NY and his office is in Pittsfield, MA! Both of these doctors are the same age as my older son so they will be around to care for me as needed.

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My brother was recently diagnosed with CRPS. He lives in the Berkshires and until recently worked in Pittsfield. If you can give me the name of this Dr. I would be most grateful.
Marty Hirsh

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barbbielor | @barbbielor | Feb 12 7:54am
In reply to @martyo321 "Can you send me the name of that Dr in Pittsfield. My brother was recently diagnosed..." + (show)
@martyo321

Can you send me the name of that Dr in Pittsfield.
My brother was recently diagnosed with CRPS. He lives in Monterrey but until his illness worked in Pittsfield. It would be much appreciated

Thanks
Marty Hirsh

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His name is Stephen Kisiel, DO. He is with Berkshire Osteopathic Health. He has healing in his hands!

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martyo321 | @martyo321 | Feb 12 11:36am

Thank you so much for the info.
I hope everyone on this website heals and goes back to a normal life.
I have numbness in both feet
I get good tips on that chat group.

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shalombendavid | @shalombendavid | Feb 14 6:55pm

have you researched calmare/scrambler tx? it is non invasive, non addictive and no side effects. thousands of folks like you have been helped.

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