CRPS - anyone suffering with complex regional pain syndrome

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.

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.

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.

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!

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!

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!

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!

@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