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Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Apr 4, 2017
In reply to @daybyday "Hi to all! I've had CRPS in my left hand/arm for a year now. I'm interested..." + (show)
@daybyday

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.

Jump to this post

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.

REPLY
pat3316 | @pat3316 | Apr 4, 2017

Hi I am Pat3316 and I am glad to be part of this group. I have been dealing with serious back pain for nearly a year. I look forward to reading others wh have similar problem and what they have found helpful.

REPLY
2 replies
goodtime376 | @goodtime376 | Apr 4, 2017

Hi all, I'm 4 months into medical marijuana use for unremitting osteoarthritis pain not relieved by the usual anti-inflammatory meds. So far I've had mixed results. I believe the the health care industry needs to learn more about the formulation of this product. The measure of pain mitigation is related to the combination of THC and CNB and amount used. It comes in different forms. In N.Y.doctors have to be certified to prescribe it. The 4 hour course is available online. My best relief is achieved by using 2 1T/1C capsules at bedtime and 20T/1C tincture drops at least twice a day plus 600 mgs of ibuprofen as needed. If I have to do anything that requires extreme mental acuity, I refrain from using it. It does make me a bit foggy. The benefits are not worth the cost but it until Big Pharma comes up with something more effective, this is it. I also have PT twice a week for balance and pain.

REPLY
3 replies
daybyday | @daybyday | Apr 4, 2017
In reply to @pkindron "What is CRPS?" + (show)
@pkindron

What is CRPS?

Jump to this post

It's short for complex regional pain syndrome. An older term for it is reflex sympathetic dystrophy (RSD). It is a rare disorder of the nervous system, typically triggered by an injury like a broken bone or a sprain. The nervous system continues to feel pain even after the injury has healed, and the affected body part becomes swollen and extremely sensitive to touch, goes through changes in color and temperature, becomes sweatier and hairier, and becomes stiff and can atrophy. There is no cure but some people go into remission, especially if they are diagnosed early and start PT/OT right away. It's not well-known - I'd never heard of it before my diagnosis.

REPLY
daybyday | @daybyday | Apr 4, 2017
In reply to @daybyday "Hi to all! I've had CRPS in my left hand/arm for a year now. I'm interested..." + (show)
@daybyday

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.

Jump to this post

Thank you for the links! I'm trying to reply in the forum vs. my email.

REPLY
daybyday | @daybyday | Apr 4, 2017
In reply to @pat3316 "Hi I am Pat3316 and I am glad to be part of this group. I have..." + (show)
@pat3316

Hi I am Pat3316 and I am glad to be part of this group. I have been dealing with serious back pain for nearly a year. I look forward to reading others wh have similar problem and what they have found helpful.

Jump to this post

Welcome!

REPLY
daybyday | @daybyday | Apr 4, 2017
In reply to @goodtime376 "Hi all, I'm 4 months into medical marijuana use for unremitting osteoarthritis pain not relieved by..." + (show)
@goodtime376

Hi all, I'm 4 months into medical marijuana use for unremitting osteoarthritis pain not relieved by the usual anti-inflammatory meds. So far I've had mixed results. I believe the the health care industry needs to learn more about the formulation of this product. The measure of pain mitigation is related to the combination of THC and CNB and amount used. It comes in different forms. In N.Y.doctors have to be certified to prescribe it. The 4 hour course is available online. My best relief is achieved by using 2 1T/1C capsules at bedtime and 20T/1C tincture drops at least twice a day plus 600 mgs of ibuprofen as needed. If I have to do anything that requires extreme mental acuity, I refrain from using it. It does make me a bit foggy. The benefits are not worth the cost but it until Big Pharma comes up with something more effective, this is it. I also have PT twice a week for balance and pain.

Jump to this post

Thanks for the info! My doc doesn't think it will work for me, but a friend is considering it for neck arthritis and I'll tell her some of your thoughts.

REPLY
greenjean269 | @greenjean269 | Apr 4, 2017

Good Afternoon, My 88 year old Mom is the one with chronic pain and some dementia. She has arthritis and a torn rotator cuff that makes her ache. She shuffles through the house not picking up her feet - I don't know if that is due to the arthritis, lack of movement or what. She is on hydrocodone in the am and pm. She says it doesn't work. I feel so bad that sometimes she just groans when trying to move. She sleeps a lot - says it hurts less when she doesn't move but understands if she did move and exercise a bit it would help. Rock and a hard place. We go in in a week to re-assess pain meds and I would like her to see a pain specialist or pain clinic. We lost our favorite Gerontologist who understood the dementia and was so wonderful.
Wow. How's that for a first post?!

REPLY
2 replies
donna2078 | @donna2078 | Apr 4, 2017

hi . ive just been told I have superior mesenteric artery syndrome. plus I suffer with abdominal pain daily... so glad I found this site , as ive been told its a rare disorder and a little scared by it all , as im normally fit and healthy

REPLY
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