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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: Apr 27 4:59am | Replies (349)Comment receiving replies
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.
Replies to "I was diagnosed with CRPS TYPE 2 three years ago. I have been through all meds..."
@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
@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
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@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