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DRG Treatment

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Old 02-06-2018, 10:02 PM   #91
catra121
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I wish you well on recovery. I think PT for me was too much to handle, and I got worse during the 8 months I was having it... No other treatments were given at the time as they were still not sure what was wrong with me.

Then my orthopedic surgeon said I needed to quit PT as it was much too harsh for me, so he gave me simple exercises to strengthen my muscles back up. Took 2 to 3 years, but the muscles came back. I worked hard on that!

Sometimes easy does it, even if it takes a lot of time.
Pt definitely made me worse 2 years ago and PT can and will do harm to my arm/shoulder. I've tried and it just sends me reeling so I am trying to be really good about communicating any issues at all with my physical therapist. Some days we skip things if my leg or arm pain is flaring (some leg exercises hurt my hands or arms so I skipped those Monday because my arms were at a 9). But for the most part with my pain being a baseline 2 in my leg...I'm doing really well with everything except that one hip exercise (which I haven't repeated because even now almost 2 weeks later my hips still feel bruised and tender). My husband asked if I told them that I was never in shape or stretched BEFORE I developed CRPS...I told him to stop being a smart *****.

At any rate...it's all going pretty well. My shoulder pain is still a mess though. I have two new things coming from Amazon tomorrow that I'm hoping might help me put a little compression on the shoulder while I'm up and about WITHOUT causing extra pain elsewhere. I really need to find a solution for that if I want to return to work because it's great that my LEG can handle so much walking but by about the 60 minute mark of just walking without even using my arm...the shoulder pain gets so bad I start to see stars. Just a tiny bit of compression makes such a difference but so far all the things I've tried help my shoulder but aggravate something else so that the trade off isn't worth it. Doctors and therapists have been NO help in this regard so I have to find something on my own that either works or can be rigged up to help. I'm not giving up on this...I will find something to make it work.
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Old 02-14-2018, 01:58 PM   #92
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Just popping in with another short update.

PT is going well. I have gradually moved up in difficulty in most of the exercises at therapy...which would suggest that I am getting stronger. I am really happy with my progress on that front. I hope it is enough.

I have also found something that does help my shoulder some. It's a posture corrector that just happens to put pressure on just the right spot and happily doesn't cause much in the way of additional pain (a small increase but heavily outweighed by the relief it gives my shoulder...or more accurately the prevention of the increased pain from it just not being supported. It doesn't help if I try to lift or raise the arm...that is just too much and the pain goes through the roof immediately with those activities...but at least now I can walk/stand for more than an hour without my shoulder screaming at me. I plan to order several more now.

All the pieces are starting to fall into place for me to hopefully return to work soon. I still have a ways to go, will still have to discuss whether to try a second unit for my arms...but for the moment things are looking good.

On another note...I occasionally get an odd sensation in my back where the unit is. Not painful...just uncomfortable/odd. It's hard to describe...almost like a weakness or cramp. It lasts for a day and then I don't feel it for weeks. I felt it yesterday but today I feel totally fine so I really have no idea what it could be but since it's not painful I'm not very worried about. I'll mention it to the dr next week.
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Old 02-16-2018, 06:37 PM   #93
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Had a more intense issue with the pain in my back where the unit is today. It was so bad I was crying and felt like I could barely move and had to take a Norco after the Advil didn't help. Spent most of the after noon laying in bed. My husband is being amazing tonight. Picked up dinner, is reading books with our daughter while I lay on the couch, and even took her to the potty which he usually passes that on to me as a mommy job. The Norco has helped...hopefully it's back to normal tomorrow. That's twice in one week though...Will keep you all posted on what the Dr says about it Wednesday.
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Old 02-20-2018, 10:39 AM   #94
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Praying the pain in your back will go away soon. Hugs to you my friend.
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Old 02-21-2018, 05:35 PM   #95
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Update time! I had my appointment this morning and it went great except for on tiny disastrous thing (that I'm laughing about despite the pain so it's ok if you do too). I got my release back to work, no need for more PT, and Dr is very happy and excited about my progress. Wants to try the treatment for my upper body but wants to wait a while and see how things go especially with my return to work and everything and I am very happy with that plan. Dropped off my work release at my employer and now just have to wait for a call from HR to see what happens next.

So...ready to hear about my disaster? There we are, talking about how well I'm doing, what accommodations I would need at work, etc...all happy things. He asks me to get on the bed so he can take some measurements. I turn around, take one step, and trip over a small step stool that was against the bed. I crash to the floor with both knees full force hitting the tile. My chin hits the basket of the blood pressure machine. Doctor catches me under the arms so I didn't also face plant. And...I broke a nail. My right knee just stopped bleeding an hour ago (this happened 8 hours earlier). I'm going to have some real pretty bruises on both knees and my neck. It's just so...typical. thankfully (I guess) the left knee is bruised but actually doesn't feel too bad (that's my RSD leg) and the right knee is the one that hurts really bad (my "good" one). It hurts...but darn if that isn't just...typical. Real graceful, huh?

BUT despite that I had a really warm reception from my coworkers when I stopped in with my release and I am just kind of on an emotional high wi th how happy I am right now in the moment. So happy with how far I've come even though it was so much hard work to get here. I really feel like everything is going to be ok...hard work...but that it will turn out ok.

Thank you guys for always listening to me, supporting me, and understanding. I know this support is what helps keep me going even in the darkest times.
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Old 02-23-2018, 09:20 AM   #96
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Small update on my condition after my fall. Knees still hurt...especially the right one. My left knee pretty much just feels bruised at this point so it's sensitive to touch. My right knee though...I have to say...I don't want to wear pants because of how much it hurts. It's still a bit swollen and gets really tight if I sit for any time at all...but when I'm up and moving it's not too bad as long as nothing is touching it. My neck is tender to the touch but otherwise is ok.

Still no word yet from HR so I will just continue to do my exercises and laps at home.
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Old 02-25-2018, 11:35 AM   #97
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I am so glad you are feeling better Catra! I am sorry you fell though. I will pray that you will continue to feel better every day. Thank you for the updates about your progress. I hope you have continued success with you health! Hugs to you my friend!
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Old 02-25-2018, 09:13 PM   #98
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One more small update regarding the back pain from a little over a week ago...we figured out what that was. Kidney stone that I am now passing. Makes sense...given where the pain was but since that's also where the stimulator is I didn't make the connection. I actually thought I had a uti and went to the Dr. So turns out the back pain was not actually related to the DRG at all...which is a relief though kidney stones aren't any fun either.

Knees feel much better today and it's basically just the scrape that hurts now...that and the tender spot on my neck but that only is sore to the touch. So I'm on the mend and doing well. Still haven't heard from my employer yet but maybe this week.
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Old 03-06-2018, 04:40 PM   #99
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One more small update regarding the back pain from a little over a week ago...we figured out what that was. Kidney stone that I am now passing. Makes sense...given where the pain was but since that's also where the stimulator is I didn't make the connection. I actually thought I had a uti and went to the Dr. So turns out the back pain was not actually related to the DRG at all...which is a relief though kidney stones aren't any fun either.

Knees feel much better today and it's basically just the scrape that hurts now...that and the tender spot on my neck but that only is sore to the touch. So I'm on the mend and doing well. Still haven't heard from my employer yet but maybe this week.
Oooh that sounds rough. I hope you can pass it without too much pain soon.

I'm glad you're doing OK.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 04-11-2018, 12:41 PM   #100
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Had an appointment with my pain doctor today and I am scheduled for DRG surgery in 2 months for my upper body. They will use the two open ports on the unit I already have to treat my arms (one for each arm). And...they can do the trial and the permanent surgery all in one appointment which is pretty cool (and hopefully works).
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