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....

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Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 7, 2020
In reply to @faithwalker007 "I was diagnosed with CRPS TYPE 2 three years ago. I have been through all meds..." + (show)
@faithwalker007

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.

Jump to this post

@faithwalker Perhaps explaining to your care team what you have just relayed to us here on Mayo Connect will give them insight to how things really are for you. Keep a written journal of your pain and discomfort, to show them [include time of day/activity/level and place of pain] to present to them.

Like you, I have 2+ drive each way to my specialists. By the time I get there, my blood pressure is high, my discomfort can be unreadable.

Do you think a written journal might help you?
Ginger

REPLY
1 reply
Hank | @jesfactsmon | Nov 7, 2020
In reply to @faithwalker007 "I was diagnosed with CRPS TYPE 2 three years ago. I have been through all meds..." + (show)
@faithwalker007

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.

Jump to this post

@faithwalker007
Renee, a probably ill informed question: is there a way that the pain assessment test could be done over a video call (Zoom, etc.) before you leave from home? In fact is there any way your pain assessment appointment could possibly be completely done over video so you would not have to make the horrendous drive? Hank

REPLY
1 reply
lorirenee1 | @lorirenee1 | Nov 7, 2020
In reply to @faithwalker007 "I was diagnosed with CRPS TYPE 2 three years ago. I have been through all meds..." + (show)
@faithwalker007

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.

Jump to this post

@faithwalker Renee, I have read, and reread your post many times, and it kills me. I am going to tell you many things I have thought about, and many have nothing to do with your question. First, can you afford a care giver for both you and your husband? Taking stress away from your husband, may help your pain, as well. Can you find a closer doctor, or do everything with your doctor virtually? Can you manage to watch Norman Doidge on youtube, and explore Neuro Plasticity? I have no idea if it applies to CRPS, but of course I do know, your pain signals have excellence in overtaking your brain, and need to be lowered down. Is there anything in your life that so engages you, that you can focus yourself long enough to keep your focus out of pain? I don't know if you find this offensive, Renee. I am just trying to help, as I would try to help myself. I have a feeling that if our brains cannot be changed, and how they send pain messages, all is useless. As far as what to say to you about managing the Pain Assessment Tool, I clearly have no clue. And, have you thought of Kratom? It helps pain very well, and if done with respect and care, creates no more side effects than any other medication. Love to you. If I had a magic wand, I would send it your way. LoriRenee1

REPLY
1 reply
k135 | @k135 | Nov 7, 2020

I have CRPS in my left knee - was in a wheelchair, insane pain for 2 years. I found a treatment in Italy that is now I think approved in the US- neridronatic acid - and I left Italy walking. Any of the residual pain I treat with small amounts of marijuana- primarily CBD. It’s been 2 years now and I’m walking and not in any significant pain until the weather changes. I believe that as long as you can get a leg up on the pain and keep sending the positive reinforcement to your brain that it can make a huge difference. I know, easier said than done. I read a similar story in a blog and started my course from that. Don’t give up hope!

REPLY
3 replies
missbiss | @missbiss | Nov 7, 2020
In reply to @k135 "I have CRPS in my left knee - was in a wheelchair, insane pain for 2..." + (show)
@k135

I have CRPS in my left knee - was in a wheelchair, insane pain for 2 years. I found a treatment in Italy that is now I think approved in the US- neridronatic acid - and I left Italy walking. Any of the residual pain I treat with small amounts of marijuana- primarily CBD. It’s been 2 years now and I’m walking and not in any significant pain until the weather changes. I believe that as long as you can get a leg up on the pain and keep sending the positive reinforcement to your brain that it can make a huge difference. I know, easier said than done. I read a similar story in a blog and started my course from that. Don’t give up hope!

Jump to this post

What treatment did you get in Italy?

REPLY
missbiss | @missbiss | Nov 7, 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!

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Yes I have this 3 years now and I get extreme body itch that burns all the time

REPLY
wisco50 | @wisco50 | Nov 7, 2020
In reply to @k135 "I have CRPS in my left knee - was in a wheelchair, insane pain for 2..." + (show)
@k135

I have CRPS in my left knee - was in a wheelchair, insane pain for 2 years. I found a treatment in Italy that is now I think approved in the US- neridronatic acid - and I left Italy walking. Any of the residual pain I treat with small amounts of marijuana- primarily CBD. It’s been 2 years now and I’m walking and not in any significant pain until the weather changes. I believe that as long as you can get a leg up on the pain and keep sending the positive reinforcement to your brain that it can make a huge difference. I know, easier said than done. I read a similar story in a blog and started my course from that. Don’t give up hope!

Jump to this post

I would be interested to learn more - how did you find out about it? How is it given? Period of time, multiple treatments, etc? Sounds wonderful that you got so much relief!

REPLY
1 reply
k135 | @k135 | Nov 7, 2020
In reply to @wisco50 "I would be interested to learn more - how did you find out about it? How..." + (show)
@wisco50

I would be interested to learn more - how did you find out about it? How is it given? Period of time, multiple treatments, etc? Sounds wonderful that you got so much relief!

Jump to this post

The treatment is nerodronate and it’s an infusion that you have to get over the period of two weeks. It was done in Bologna by Dr. Malavolta. Google CRPS Nerodronate in Bologna- it’s a facebook page I found and that’s how I got started. I kept emailing the doctor using google translate and they accepted me, sent me the bloodwork requirements and booked a time. The treatment was 1500 euros two years ago and i had to pay for my flight and airbnb. I will admit that it seemed to work a lot better on me than the other 2 ladies getting the treatment. Using CBD oil is nothing short of a miracle for me. I can take it and five seconds later can see the colour of my knee change from red to normal. I used to get nerve blocks and way too many pain killers and it didn’t even compare to the relief from a little CBD. Everyone responds differently to any medicine... but finding something that makes some pain go away can change the pain signals to move in the right direction

REPLY
Faithwalker007 (Renee) | @faithwalker007 | Nov 7, 2020
In reply to @gingerw "@faithwalker Perhaps explaining to your care team what you have just relayed to us here on..." + (show)
@gingerw

@faithwalker Perhaps explaining to your care team what you have just relayed to us here on Mayo Connect will give them insight to how things really are for you. Keep a written journal of your pain and discomfort, to show them [include time of day/activity/level and place of pain] to present to them.

Like you, I have 2+ drive each way to my specialists. By the time I get there, my blood pressure is high, my discomfort can be unreadable.

Do you think a written journal might help you?
Ginger

Jump to this post

I’ve tried to relay my daily pain with apps and a journal but she didn’t seem interested in what it was like. Just what it was currently. I can try again if I could figure out a way to get her to actually use it.

REPLY
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