Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-14-2020, 07:04 AM #1
annabanana123 annabanana123 is offline
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Default How's everyone doing?

How's everyone doing? Staying safe/healthy? I'm good - mostly just bored but thankfully still working from home so that helps a lot. It has been good for my pain in a lot of ways since I'm not constantly rushing around from one activity to the next with my son but in other ways it seems like CRPS is just getting more and more intense (or my meds are working less and less? not sure). Anyways hope everyone's doing well!
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Old 05-14-2020, 01:06 PM #2
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Nice of you to ask "how everyone is"...

I'm good overall except for the nasty OA and damage done from hip replacement.

Working with a new supplement from LifeExtension for the above issues. I'll give the 2 a 3 month trial.
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Old 05-19-2020, 07:10 AM #3
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I'm sorry you're dealing with that. I've got horrible OA in my knee from 4 surgeries and the next one I do will be a replacement but since I'm in my 30s they want to hold off as long as possible. It's a mess - celebrex does help some though for what it's worth
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Old 05-19-2020, 01:28 PM #4
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Oh dear all those surgeries. One major hip replacement in my life was TOO MUCH and then a arthro clean out of the knee in 2017 I believe made it worse. Knee is messed up from the hip surgery too. It's so alll connected. I often believe the less we do the better off we are. You are so young, did you do a lot of hard sports to go thru those surgeries? C
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Old 05-26-2020, 07:50 AM #5
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Quote:
Originally Posted by caroline2 View Post
Oh dear all those surgeries. One major hip replacement in my life was TOO MUCH and then a arthro clean out of the knee in 2017 I believe made it worse. Knee is messed up from the hip surgery too. It's so alll connected. I often believe the less we do the better off we are. You are so young, did you do a lot of hard sports to go thru those surgeries? C
I played every sport under the sun and was super competitive however what did me in was running marathons oddly enough. I felt and heard a pop in my knee and that was it...
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Old 05-26-2020, 02:58 PM #6
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I somewhat feel a sadness that this current generation has been pushed into all the aggressive sports and competition that has gone on. Not my parents generation.

My grandson who is only 20 has already dislocated his elbow twice "doing sports"....
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Old 05-27-2020, 06:43 AM #7
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I was never pushed into them but found them on my own...and loved it. I wish I could still do it but I can't anymore. I really wanted to try an ultramarathon when I got injured (a 50 mile race). There is nothing quite like the "runner's high" or the rush of endorphins when you kick the winning goal.

Now I have to resort to competitive board games and being competitive at work. Or competing against CRPS...
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Old 06-04-2020, 10:31 AM #8
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Hello, my CRPS spread to all limbs and I am pretty sure it is in my gastrointestinal system as well. I gave up trying to be the old me and I am adjusting to this less able me.

I finally accepted that if I want to do anything I have to find a new approach, like in my bathroom, if things are put away in cabinets I will exhaust myself getting them out, using them and putting them away. My husband set up a 3 tiered, wheeled open cart, so I have everything nearby to use seated, while it appalls my sensibilities, so ugly, it has enabled me to do personal things a bit at a time.

I need repeat brain surgery, but I am afraid to move forward, because the first surgery was complicated by a difficult intubation, which I now believe is due to CRPS. I have severe esophageal spasms.

Covid cut into my daily gym habit that included using a recumbent bike & my own aqua PT, plus sauna. It took me 2 years to figure out how to do it.

LDN is my only med. I go for medical botox to deal with the daily headaches. I hope everyone is doing better!
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Old 06-05-2020, 08:09 AM #9
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Biobased, I'm sorry! That sounds painful!! Mine spread too - pretty much everywhere that's external at this point. Thankfully not internal (yet). I know what you mean about having to learn to live with the new normal and accept more help than you'd like. It's hard. And even harder without being able to do our normal routes and exercise at the gym/pool. Does LDN help you as much as other treatments you have tried? Or is it just what your provider is willing to do? Curious about that one. Thanks!
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Old 06-06-2020, 04:13 AM #10
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LDN is the best. I found it myself online and sent for it from abroad, unfortunately it took me 2 years to have it doctor prescribed. I know more about it and more about CRPS than my docs-they said this themselves.

When I anticipated surgery I stopped it for awhile with no ill effect, so I continued without it for a few months, until I suddenly and abruptly couldn’t walk. Within a week of starting back up the excruciating pain was back under control. I will never stop taking it for long periods again.
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