Hi to all! I've had CRPS in my left hand/arm for a year now. I'm interested in learning how others cope with CRPS...what treatments they've found effective for pain, insomnia, depression (due to coping with this illness and its consequences), and regaining limb function.
I'll share my experience: Last year, my pain was more bearable with a combination of nerve blocks, acupuncture, biofeedback, edema therapy, and mindfulness, and I had some functional improvement with OT & PT (including mirror therapy). I also found it useful to see a pain psychologist. I would recommend trying this type of integrated program if you have coverage. Although I was never completely without pain, it was at lower levels a lot of the time, and I felt like I was making progress. Plus, the practitioners all knew a lot about CRPS, so I could ask all my questions and get a lot of support.
Sadly, this year, my deductible is so high that I can't afford medical care or therapies. I'm only taking topamax, which takes the edge off somewhat and is thankfully cheap at Costco, but I have much more pain, stiffness, and depression than last year. I'm guessing it's because I'm not able to have any therapies. I am able to do my OT & PT exercises on my own, but have no guidance, and most of the other treatments are not "DIY".
I've tried everything to get over the insomnia, even a sleep hygiene class and sleeping pills, but no luck. The pain wakes me up even through sleeping pills. Does anyone have any advice or solutions?
Also, does anybody have experience with adaptive technology, to compensate for not being able to type with both hands? I can't type or do much of anything for long with the left hand, which affects my ability to work. I find voice recognition software glitchy and slow to use, but maybe some are better than others? I've also heard there are handwriting to text programs. Anyone have feedback on these?
Oh, and how do others explain CRPS to friends and family? I'd love to hear that.
I just keep hoping for this to go into remission...I'm sure you're all in the same place.
Thanks for reading this & please take good care of yourselves.
Hello @daybyday and welcome to Connect. Thank you for introducing yourself to the Chronic Pain members. We have quite of few members who have talked about CRPS, or some call it RSD. Here are some specific discussions centered around some of the diagnoses you shared with the group that you may want to check out:
- After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN
- RSD/CRPS: http://mayocl.in/2nJPDog
- Insomnia, nothing seems to help, http://mayocl.in/2nB6pkW
- Long-term depression, http://mayocl.in/2nU395X
@daybyday, if you are replying by email I reccomend clicking on the above links, then you will be taken to the full discussion to read through and also to share your experiences with the members talking about the subjects you spoke about. We look forward to hearing more form you on Connect.