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Author Topic: Living with CRPS (Complex Regional Pain Syndrome)  (Read 899 times)

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Offline fireflightsTopic starter

Living with CRPS (Complex Regional Pain Syndrome)
« on: September 14, 2017, 06:50:55 PM »
To give you some history on me, I wasn't always disabled, I didn't always have uncontrollable pain, I didn't always wake up in the middle of the night just to take more medicine to sleep. I didn't always have a hard time climbing my stairs and I didn't always have a hard time just walking a few feet. All of that changed for me on May 18, 2016. What happened to me you may ask that would change my life so drastically? I finished a set of shots in my back for 3 bulging discs and that very night, I felt so bad I was in bed by six pm. I woke up just two hours later with my hands completely asleep in the same position I have slept in all my life and never once had they ever fallen asleep. Since then, my legs have become so sensitive nothing can touch them but hot water. If cold water touches them, it sends my nerves ablaze, if the wind touches them, I hurt so much I want to cry and if the sun touches them, it burns like insanely more than normal. If my cat rubs up against them, I start to move them away and if they try getting on my lap...well let me just tell you, they can't. I have burning from my lower back all the way down to my knees. I can't live a normal life, in fact, the only places I go are to my doctor appointments and to bingo once a month with my boyfriend which usually leaves me in tears by the end of it. I have recently found a med that lowers the burning, and sensitivity to about half the range it is normally at, which gives me a slight in relief, but it doesn't take it away, I would give anything just to walk again without wanting to cry after a few steps. When my new med can't curb the burning enough, my clothes feel like sandpaper on my skin if it rubs on it, which only enhances the pain. I'm not telling you to gain sympathy, I am hoping that others with similar issues might come and help tell their stories just in case other sufferers who are just newly going through this have it. CRPS consumes your life, my sister has it, osteoporosis and now possibly RA all over her body. It attacks more women than men, but that doesn't mean Men don't get it, I do know one sufferer on here and maybe he will share his story too, I don't know, that's up to him. Many days I have to go to bed early because I just hurt too much I can't even manage to stay up. It's not an easy thing to live with, it has no cure, they can only do things to try to minimalize the pain as far as I've learned so far but I'm willing to try most things that don't involve needles since it was needles that put me into this state. So if anyone has a story of their own to share, by all means, please share it. If you want more information on CRPS there is the RSD/CRPS foundation.

https://rsds.org/living-with-crps/

Offline Al Terego

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #1 on: September 30, 2017, 06:48:39 PM »
I don't have a story to share, only hugs.

*HUG*

Offline Alive Until Dead

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #2 on: December 06, 2017, 06:42:57 AM »
I admit, I was just bouncing around E, reading stuff. I came across your blog post and.. wow. The inner strength you have. I've always prided myself on having a high pain tolerance for most kinds of pain but what you describe sounds excruciatingly crippling. I can't even entirely imagine it. I just wanted to commend you on living through it and being brave enough to talk about it! Just, wow. You're amazing. Those of you living with this, are amazing. Please feel free to share that with the others you know.

~ Remmy

Offline fireflightsTopic starter

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #3 on: December 06, 2017, 09:13:29 AM »
Thank you Al, and Remmy, it really isn't an easy disorder to live with and yes, it is excruciating. I was dumb last night and just changed around my pots and pans something anyone should normally be able to do without problem but now i'm in so much pain I want to cry and it's been like this since I finished yesterday. I didn't eat dinner because the pain had taken my appetite. And the thing is, no one can truly understand what someone like me goes through unless we share it like this. So that's why I made this, for other sufferer's like me to give their side of what it's like for them because CRPS affects everyone who has it a little differently, it could only hit a finger, toe, or an entire foot, leg, or an arm, shoulder, hip, it doesn't always attack everyone who has it at the same spots. It all depends on where they get the injury that triggers it, but it can move through the body, so now when I go have my surgery in a few months for bariatric, I will be worrying about it moving to that site and causing me more pain there as well. CRPS is a horrible condition and it's not an easy one to handle. But I try to handle it the best I can. So thanks to all who are reading this and at least getting the knowledge so if someone you know becomes afflicted by it, you can at least say "I know what it is." and realize that it's very difficult for that person to deal with.

Offline Al Terego

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #4 on: December 06, 2017, 06:07:00 PM »
My best wishes are with you, and good luck for the surgery

Offline Aiden

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #5 on: December 08, 2017, 01:14:59 AM »
Out of curiosity is medicinal marijuana something you have tried or is legal in your state? We are friends with a couple who specifically make edibles for people with terminal cancer and they speak highly of the results (pun not intended).

Offline fireflightsTopic starter

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #6 on: December 08, 2017, 05:19:51 AM »
It is allowed however without being covered by insurance and I have no money yet, plus when I so get my disability I wont still be able to afford monthly doses of it, I can't try it to see how it might help.

Online Ket

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #7 on: December 08, 2017, 05:37:34 AM »
It is allowed however without being covered by insurance and I have no money yet, plus when I so get my disability I wont still be able to afford monthly doses of it, I can't try it to see how it might help.

It's the same here. In order to get it, I must have a prescription. But I can only get a prescription from doctors that are on the state's list, and there aren't many. My insurance wouldn't cover the appointment to get the script, nor would it cover the product, which here in PA can only be tinctures or oils, no smokables. So basically, I'd have to travel to one of the big cities in order to get to an approved doctor, pay for that appointment, then travel to wherever the dispensary is (one in my city wasn't approved, even though we're the fourth largest in the state), and pay for the product all on my own. I know for sure it could help me (I could explain to you in PM if you'd like), but because I have federally backed insurance, there's no way it will ever be covered.

I don't have CRPS, but I do have severe fibromyalgia, along with several autoimmune disorders, including an arthritis, so I know somewhat of how you feel with the pain. *gentle hugs, if wanted*

Offline fireflightsTopic starter

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #8 on: December 08, 2017, 06:43:34 AM »
Ah....the sister condition, Fibromyalgia is a lot like CRPS so believe me, I know how bad you have it too Ket, my friend on here has it too and she's able to do the medical marijuana, it helps her so I know it would help you and likely myself as well, but as you are, I am on federally backed insurance, so it will never be covered most likely which means I can't afford to spend the money it would require for the doses as well, and yeah, it's only patch form or oils for me as well because I also have an allergy to smoke so I can't inhale smoke of any kind.

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Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #9 on: March 05, 2018, 11:08:39 AM »
<3

Offline fireflightsTopic starter

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #10 on: March 12, 2018, 03:03:31 PM »
<3 back at ya hun :D

Offline CaptSnowflake

Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #11 on: April 16, 2018, 05:47:30 PM »
Wow, I feel so horrible for you. I don't have CRPS, but I know just how bad it is. I learned about it when I was in my first year of medical school and the description of it just blew me away. I can remember beings a medical student, working an ER near Detroit when a man came in complaining of your exact symptoms. The doc on that night was about to send him away; his vitals were fine and they see a lot of drug seeker. Recognizing the symptoms though, I pointed out the lack of hair and skin changes to the affected area and convinced the doc to give him something to tide him over until an actual doctor's visit. A few of my patients have had this and I've seen how it effected them.

I'm glad you have found a medication that at least helps. Please don't tell me what you are taking in this forum, but gabapentin was a help to some when I was in practice. I agree with others in this forum in regards to medical marijuana; I've heard great things about CDB oil. I've also heard great things about mirror box therapy and ketamine. Probably not something accessible to you right now, but may move into first line treatment with more acceptance. I wish you strength and, when you can find it, a little solace. Thank you for sharing your story. 

Offline Mithlomwen

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Re: Living with CRPS (Complex Regional Pain Syndrome)
« Reply #12 on: April 17, 2018, 10:33:26 AM »
My mother in law also has CRPS.  It is a horrible thing to have to live with.  I am so sorry you are suffering too.  *offers gentle hugs* 

I myself have Fibromyalgia.