Hi everybody! I'm reaching out as a mom of an amazing young woman (18 years old) who has suffered with widespread CRPS since she was 10. She has undergone inpatient rehab x 6 weeks and again for 2 weeks over the years utilizing the "Sherry" method-bootcamp-hell but, although she would initially show improvement, she has always relapsed. We have done it all: PT, OT, she tries to exercise every day, gabapentin, ibuprofen, flexeril, and oxycodone 20 mg 4-6-x daily. The meds arent working, the exercise isnt working, and she is miserable. I feel we are at a crossroad. She is getting more tolerant to the opioids, but in this day and age, I fear that she is going to be unable to recieve the opioids, and she will be in deep trouble then. Hers the question. Does suboxone work for the extreme pain that is CRPS? I'm worried it wont be enough. I also worry that she will be labeled an addict, which she definitely is not. If this med is tried and if it fails, I fear it will effect her ability to recieve opioids later. The anti-opioid environment has us all very frightened. I gratefully await your input.
Question created 8 months 3 weeks ago
I'm 19 going on 20 and have done Dr. Sherry's program 2 times as well. I have had RSD for 8 years now and go through bad flares at times. Right now I'm on Pristiq which doesn't seem to help, and no opiods once so ever since they can cause issues long term. I spin 4 times a week and able to walk but have issues with tremors, incontinence and vibrations now. I would suggest looking into a pain program for young adults that does the ketamine treatments and stimulators. Suboxone is an ugly drug and one can become addicted as well, don't want your daughter to have issues long term. I would try a neurologist as too. It is best to stay away from opiates since they don't help RSD pain once so ever. No drug inpatient could EVER help me.
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asked 2 months 2 days ago
My name is Chris, I was injured annoy 5 years ago and was diagnosed with Crps in my right arm a lititle over a year later. I have had several surgeries, injections, tried many medications, done PT, OT, hypnotherapy, pain clinics, a spinal cord stimulator trial and more. I am currently on suboxone 8-2mg (that means it is a strip you out under your tongue, the entire strip is 8mg but it can be separated in 2mg sections). I am also in about a 6 other medications, but suboxone is the only opiate. Now, for me this medication is not touching my pain even a little, however I am extremely tolerant to medications and my body metabolizes them faster than most people. I did have to go through a detox center/program before I switched to suboxone, but that might not be the case with your daughter as I was on a lot of high dosage medications, and a few that they specifically make sure are out of your system before you can take suboxone. I was on a fantanyl patch, so I needed to be off of that for 3 days at least before I could start suboxone. I wish you and your daughter the best and I will keep you both in my thoughts, best of luck and fell free to ask any questions that I may answer (obviously I can't give medical advise) as I would be more than glad to help!
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asked 5 months 4 weeks ago
Hi, my name is Sandy and I too have widespread CRPS. I had a traumatic injury and subsequent surgeries. I have tried so many medications, using a lot at one time completely messed up bodies functions. What I did with the help of my doctors was to come off a lot of the medications and just keep it simple. The biggest thing was the opioids. I too, was taking it every 4-6 times a day. I back off to taking it at bedtime and as needed during the day if the pain was intolerable. My realization was that I will always be in pain and the CRPS is here to stay. It's hard mentally to do this but I found that when I did need to take the opioids they were more effective. I hope this helps and I wish your daughter good luck and thank you for being a support system for her. Sandy
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asked 8 months 1 week ago
This is a reliable site relating to your question
More, most important in your daughter's case, especially with regard to her age, is to rule out any organic cause to her CRPS. Central( brain), spinal cord and local lesions, endocrinopathies( thyroid, adrenal, and ovaries), metabolic, neoplastic,- vitamin deficiency, autoimmunity, toxin exposure, alcoholism, organ dysfunction and diabetes, blood vessel disease, hemoglobinopathy, sarcoidosis, and chronic infections, reaching down to celiac disease perhaps, may cause it. This is crucial because etiologic treatment would be likely, and thus the possibility of weaning your daughter off narcotics.
May your daughter be well.
Dr Hana Fayyad, pediatrician( Maria Jasmine Freeman, author of The Cross Of Menopause-Immolation).
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asked 8 months 1 week ago