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!

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.

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

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...

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"....

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...

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!

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!

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.

That's great information - thank you!!! Did you stop before surgery b/c you can't take it with opioids? Or was there another reason? Just curious as I'm waiting on an ortho appt for what I suspect will be a knee replacement, ugh :(. But I can't walk on it and have had 4 surgeries already so...ya know...

I stopped, because it is a requirement . I assume, because it could interfere with anesthesia and possibly if opioids are needed after surgery. I am sorry to read you are facing more surgery. It’s too much. Much too much.

Annabanana123
I am struggling with 2020. Two diamonds in my wedding ring were cracked in late January. It is insured so no biggie there. I took it in for repair. They had to send it to the mfg. Then Covid hit. I still dont have it back. My TKR was cancelled due to Covid. 6 more months of this year to go, It can't end soon enough. Thanks for asking and allowing me to vent my little rant.
Barb

Who'd have thought we'd have a pandemic on our hands to top it off.

I am taking things day by day, but what else is new?

I'm sorry you're struggling so much. 2020 has been one for the record books...and not in a good way, ugh! I hope you get your ring back soon!!

I think I need a TKR but going to try hyaluronic acid injections to see if maybe they'll buy me time first.

I have not been on in ages.

My current worker's comp doc is good, but trying to get my methadone filled/covered by wc is a nightmare, so I'm back to just doing it thru Kaiser.

I'm still going through the wc claim. Had another deposition (via Zoom at least!) so that was really no fun. I have no stamina, even for Zoom, had to do it in two sessions. Now they want me to do a vocational eval. That's gonna be fun - not. They are gonna mail me a packet to do when they start the session. Supposed to take up to 4 hours. I can't do ANYTHING for 4 hours. And then they want to talk with me for 2 hours. It is supposed to be from 10:00 on for 6 hours. Yeah. I'll melt/fall asleep. So I'll have to explain, and then just stop I guess.

At least my pain is as well controlled as ever. I am even trying to use my cane at home when I can!

Maybe it is time to write them a registered, formal letter to state that you cannot do anything for that long, and a note from your doctor would probably help you lots!

I think that is the way to go rather than to just go blindly ahead with this.