1. < Chronic Pain

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....

Interested in more discussions like this? Go to the Chronic Pain Support Group.

mfmteam | @mfmteam | Sep 10, 2020
In reply to @jesfactsmon "@mfmteam Hi there mfmteam, my name is Hank and I saw your post when it was..." + (show)
@jesfactsmon

@mfmteam
Hi there mfmteam, my name is Hank and I saw your post when it was over in the neuropathy discussion but did not have time to reply then. I do not know anything about CRPS. I know you are new here and just thought I might pass along my experience on Mayo Connect back in January when I was new here like you. What I did then and what you might want to do is, just keep up with all of the posts in this one discussion, at least at first. That way you can get a feel for what people like to discuss and the kinds of things they focus on. When I first got here there was a lot I did not understand about how to get around and some of the technicalities of how it is set up. I did not post at all for a couple weeks as I was mesmerized by all the stories of various people.

Just know that you will become more comfortable in a little bit of time. This forum is a wonderful way to connect with people and learn a lot you might not have heard before. You are in a place of maximum support and acceptance. There are good people here, almost exclusively. I hope you find some folks that you can share experiences with and maybe start to look forward to your times that you are coming here. My very best to you. You have found a caring place. Hank

Jump to this post

Hank thank you so much for taking the time to respond. I appreciate it very much! I’ll take your suggestions!

REPLY
mfmteam | @mfmteam | Sep 10, 2020
In reply to @missbiss "Hi my name is Sheryll I have CRPS too I am always itchy have rashes I..." + (show)
@missbiss

Hi my name is Sheryll I have CRPS too I am always itchy have rashes I take antihistamines and topical jells such as magnesium jell or tch jells

Jump to this post

Hi yes I did these hives come as soon as there’s bad pain. I was at Drs he moves my leg and within 2 min the pain goes to 15 then I call them hot spots where nothing can touch me then hives start. It’s horrible. And the “ Charley horses “ are so violent they wake me up in tears.

REPLY
2 replies
missbiss | @missbiss | Sep 10, 2020
In reply to @mfmteam "Hi yes I did these hives come as soon as there’s bad pain. I was at..." + (show)
@mfmteam

Hi yes I did these hives come as soon as there’s bad pain. I was at Drs he moves my leg and within 2 min the pain goes to 15 then I call them hot spots where nothing can touch me then hives start. It’s horrible. And the “ Charley horses “ are so violent they wake me up in tears.

Jump to this post

I call those “vice grip bone contortions” I understand it’s tough to explain to anyone who doesn’t deal with this

REPLY
1 reply
mfmteam | @mfmteam | Sep 10, 2020
In reply to @missbiss "I call those “vice grip bone contortions” I understand it’s tough to explain to anyone who..." + (show)
@missbiss

I call those “vice grip bone contortions” I understand it’s tough to explain to anyone who doesn’t deal with this

Jump to this post

I’m sorry I fell asleep with heating pad on leg. Omg they are so violent and was reading that it may mean that my CRPS is chronic ! I also get hives as I said anyone here with Type 2 crps from injury ? I really appreciate you responding!

REPLY
2 replies
missbiss | @missbiss | Sep 10, 2020
In reply to @mfmteam "I’m sorry I fell asleep with heating pad on leg. Omg they are so violent and..." + (show)
@mfmteam

I’m sorry I fell asleep with heating pad on leg. Omg they are so violent and was reading that it may mean that my CRPS is chronic ! I also get hives as I said anyone here with Type 2 crps from injury ? I really appreciate you responding!

Jump to this post

Thats me!!

REPLY
georgiey1 | @georgiey1 | Sep 11, 2020

1,m married 66 yrsa my wife suffers from migrains for over 40--50 ,years. what do you have to help her. she never complains. God Blessher. I love her dearly

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 11, 2020
In reply to @georgiey1 "1,m married 66 yrsa my wife suffers from migrains for over 40--50 ,years. what do you..." + (show)
@georgiey1

1,m married 66 yrsa my wife suffers from migrains for over 40--50 ,years. what do you have to help her. she never complains. God Blessher. I love her dearly

Jump to this post

@georgiey1 Hello. Does your wife see a Neurologist?

REPLY
Faithwalker007 (Renee) | @faithwalker007 | Oct 24, 2020
In reply to @mfmteam "Hi yes I did these hives come as soon as there’s bad pain. I was at..." + (show)
@mfmteam

Hi yes I did these hives come as soon as there’s bad pain. I was at Drs he moves my leg and within 2 min the pain goes to 15 then I call them hot spots where nothing can touch me then hives start. It’s horrible. And the “ Charley horses “ are so violent they wake me up in tears.

Jump to this post

I’m so glad I’m not crazy

REPLY
Faithwalker007 (Renee) | @faithwalker007 | Oct 24, 2020
In reply to @drp985 "Anyone have full body RSD. I know there are not that many with full body and..." + (show)
@drp985

Anyone have full body RSD. I know there are not that many with full body and that there are no Doctors that understand what that means.
I’m looking at a stem cell therapy. Like to do it a Mayo but can’t contact anyone. So I guess it’s going to be Vanderbilt.

Jump to this post

I have progressive CRPS Type II and it has gone from my ankle to both legs, back, shoulder, and hands. I’m avoiding saying full body because I want to blame that on osteoarthritis and ibd. Lol

REPLY
Faithwalker007 (Renee) | @faithwalker007 | Nov 7, 2020

I was diagnosed with CRPS TYPE 2 three years ago. I have been through all meds and have a DRG Spinal Cord Stimulator from Abbott/St. Jude implanted that handles approximately 20-25% of the pain load.
The only thing left to relieve pain that my pain specialist can use is opioids due to other disease states - epilepsy and associated migraine, IBD with small intestine involvement, asthma, osteoarthritis, drug allergies/ADRs - and, in my opinion, sheer ignorance of the disease.
In addition to being a patient, I am a disabled and a registered although inactive pharmacist of twenty-three years, losing my ability to work as of four years ago at the onset of extreme pain in my right knee due to deterioration and severe osteoarthritis at 48 years of age before my total knee replacement which led to Causalgia.
Now for my QUESTION! Lol
My pain SPECIALIST does not use the Mc Gill Pain Scale to gauge my pain level when I see her at my monthly Pain appointments 3 hours away. The clinic uses the 1-10 “Physicians Pain Assessment Tool.”
The ride to the clinic itself skews this test.
I’m in “ER” level Pain by the time I arrive and I can barely control my breathing much less my brain. My Service Dog, Bo, almost refuses to allow me to answer the check-in pad. My vitals reflect this pain as well.
I need some advice on HOW to answer this scale. I don’t want to LIE but in this day of OPIOID PANIC, I’m jeopardizing the only method I have of making my life bearable.
My Pain Specialists (the clinic) have already tried to reduce my Opioid dosage twice when it should be increased.
I spend my days in my recliner because I can’t walk, stand, lie down, drive, or work.
I can no longer write my Christian Fiction books or help the community I live within and love as a pharmacist.
If I continue much longer threatened every time with the care I’m supposed to trust, I don’t know 🤷‍♀️ what choices I’ll have to make in the future.
Another fact? My husband is disabled as well. He’s has 39 surgeries and is MY caregiver now. Our roles have been unfortunately reversed.

REPLY
3 replies
View MoreView Less
Please sign in or register to post a reply.