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How do you deal with it?

Jun 22, 2015 11:23 AM

I've had chronic regional pain disorder for the last 9 months! I got diagnosed about 3 weeks ago! But how do I live with this pain all the time?? Someone please give me the answer!

Jun 22, 2015 4:13 PM

GNCRPD, I don't have the CRPS but I do have chronic pain from multiple issues & medical conditions like fibromyalgia, Sjogrens, DDD osteoarthritis, and migraines (naming a few). The hardest thing is accepting the pain as ever present, it's not going away, it will ebb & flow, so I adjust my life around it.

Pain has been present in varying degrees since the mid-nineties in my spine and knees. And it has been aggravated by the issues above and then some since 2008-2009. It will remain part of my life so I've learned to listen to my body's signals, to rest when I need to, to stop doing something that is too much to handle, to take breaks between activities when possible, and not overdo it just because I feel better at a particular time. I've adjusted many ways of doing things, like sitting on a stool to prep for cooking or when drying my hair, wearing support gloves for my hands, taking slower steps and avoiding stairs when I can. On days I can't do anything, I rest without guilt. My right hand and arm is throbbing so badly I'm about to put my gloves on, though I mostly wear them in winter for warmth. I purchased a coccyx pillow to help relieve pain on my tailbone when sitting, especially on hard chairs or less padded chairs. Besides rx meds and voltaren gel, I use heat pads or ice packs if needed. I purchased a neck & shoulder wrap that can be frozen or microwaved and it covers a large area. But I also stuffed a tube sock with white rice, tired a knot in it, and it can also be frozen or microwaved.

There are many on here with the CRPS, and everyone is dealing with chronic pain. Many have had suggestions that I've taken (gloves), so I'm sure you'll have lots of support and ideas. For me, my biggest contributing factor in helping me get through the pain is my faith in God. Not everyone feels like I do, and many others do. I still pray for everyone, so I'm adding you to my prayer list. I hope through this community that you'll find a way to get through too! 🙏🌼

Jun 22, 2015 5:47 PM

I have CRPS too, and the pain is awful, have you tried Kava Root and Magnolia Bark? They really help me. There isn't really an answer when it comes to CRPS, or any other type if chronic pain.
Do you have the allodynia (pain from things that should not cause pain) yet?
I use a rice box as desensitization therapy, but it usually helps earlier on.
Good luck finding a medication to help.
I've tried: Ibuprofen, Gallium, Ginger, Tumeric, Albuterol inhaler, Iodine, kava root, magnolia extract, menthol, Codeine, kratom, alcohol, DMSO, LDN, Magnesium, potassium, Dextromethorphan, thyroid, lemon balm, dandelion, Benadryl, Gabapentin/Neurontin, Pregabalin/Lyrica, Zyrtec, horny goat weed, vitamins, caffeine, and pseudoephedrine.
I'd recommend avoiding: Tylenol/Acetominaphen (there's evidence to suggest that Tylenol makes CRPS and nerve pain more permanent), milk, and sugar/artificial sweeteners.

Jun 22, 2015 9:13 PM

GNCRPD I have been dealing with my chronic pain since 2001 when I was hurt on the job. It has not been easy,I take prescription pain meds,and nerve pain, I also use over the counter rubs for pain relief,and roll on's.I also use a rice pack made with just plain white rice. I heat it for 3 min then get in bed and put the pack on it usually last for a couple of hrs. Then I cling to my faith in God. Will be praying for you

Jun 23, 2015 5:12 AM

Thank you all I will definitely try some of these ideas! It's really getting to me at the moment with more bad days than good, and now I have found this I don't feel so alone anymore! I love the help and advice everyone gives its really giving me strength so thank you all so much! X

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