Other Reflex sympathetic dystrophy

[Broken Dahlia]

Hello everyone, just got a new diagnosis for the pain I've been in and thought it could be helpful to others here.

I had a tibial plateau fracture in January and had surgery to repair it that included a plate, rod, and screws. I started physical therapy two weeks later and it has been a roller-coaster ride. My pain did not subside the way it should have, and I had physical symptoms- my ankle has been swollen for months and my foot turns dark purple if it is not elevated. I also couldn't stand to have anything touch the bottom of my foot- it bounced off of the floor at the slightest touch. My system got so worked up when anyone touched it that I started thinking something traumatic had happened involving my foot and I had blocked it out. The physical therapist I saw said it was just healing and I just needed to work harder and "push, push, push" through the pain. I told her I thought my delayed recovery was related to PTSD and needed to take something to help my nerves, like gabapentin; she disagreed.

I saw a podiatrist for a problem with my healthy foot, and she immediately decided that I had RSD, also called Complex Regional Pain Syndrome. She took a picture of my foot because it was so dark and mottled, also cold and clammy. She prescribed Lyrica and recommended a new physical therapist. The change has been dramatic, both with my leg and my mood. I have been feeling happy!

Hope this could help anyone with pain that isn't getting better, even if tests say that you are fine. This is a real physical problem- it is not in your head.

 

[joeylittle]

Side note - they had you in PT that soon? I had an orif surgery for a tibial plateau fracture, and did not go into PT for 6 weeks, besides the stuff to avoid clots and other recumbent, simple things. I'm so sorry you went through that - and very glad you got the right diagnosis!

So, the podiatrist was able to diagnose it basically on sight? Did your surgeon ever help? (Just very curious)

 

[Broken Dahlia]

Side note - they had you in PT that soon? I had an orif surgery for a tibial plateau fracture, and...[/QUO

Hi Joey, yes they try to get you started as soon as possible, it was horrible. They had a physical therapist come to my hospital room before I was released, but that was mainly to learn how to use a walker.

The surgeons were not helpful at all; one told me that "life is pain" and that he didn't like my helpless attitude, two weeks after surgery when he prescribed therapy. The other one hardly looked at me when she ordered weight-bearing, but did tell me that if I didn't aggressively work on my range of motion that she would be happy to put me under and do it for me. My primary didn't look at my foot but he did prescribe hydrocodone and tylenol3.

My podiatrist is wonderful; she felt my skin and could tell by the temperature. She is married to a trauma therapist, an LPC. I almost left PTSD off of the intake but am glad I didn't because apparently the two go hand in hand.

Physical therapy is awesome now. I walk in an anti gravity machine every session which I love. It is the only time I can walk without my walker and I can go fast enough to work up a sweat. Next week I will start aquatic therapy and I have heard good things. I might even get my own portable electro therapy device.

I'm sorry to hear that you have gone through this- how long ago did you break it? How long did your recovery take? Does it ever end? Obviously I'm curious as well!

 

[joeylittle]

My story is just opposite to yours - my break was sept of 2013. After surgery, it was learning to use the walker, transfer in and out of wheelchair, the fun stuff. But I didn't start any physical therapy til 6 weeks. Then it was pretty straightforward. Altogether, it was 7 months from break to walking without crutches or a cane. I never had any trouble with my feet.

My surgeon was incredibly good. It was a fluke - he was the dr on call in the ER who was qualified to diagnose off X-ray and ct scan. I came in with the break around 4pm but they couldn't find him til around 10pm for some reason. He came in, told me super fast what it was, that I needed surgery, probably wouldn't walk normally again - and I was so stressed I burst into tears.

It was like he remembered he was talking to a person. He slowed down, explained everything, and told me he wanted to do my surgery.

I find out later that he's an award winning spinal surgeon. So, I kind of lucked out on that.

I'm sorry your experience has been so hard. But once it's working again, it becomes almost good as before.

 

[ShodokanJenn]

I have CRPS following 23 operations on my leg due to a sever, recurring infection. I'm sorry you have to deal with it - I know how much it hurts.

 

[Broken Dahlia]

I have CRPS following 23 operations on my leg due to a sever, recurring infection. I'm sorry you...

I am so sorry that you have had to endure so much pain. I hope you get a break from it. How do you cope, if that is not too personal?

 

[ShodokanJenn]

Not too personal at all.

I take hydrocodone and gabapentin for the pain. When I have flare ups, I take dilaudid, but try to really limit that. I do a lot of muscle relaxation, and use heat and ice. I find that it's better if I stay active. I also take naproxen daily to help with the inflammation.

 

[Broken Dahlia]

Not too personal at all.

I take hydrocodone and gabapentin for the pain. When I have flare ups,...

Thank you, sounds like what I've been doing. Do you have a pain management doctor? Is there any way to prevent flare ups?
I'm nervous about talking to my primary about this; he doesn't believe that fibromyalgia is a real condition and seems to be a bit behind the times-this seems a bit different, but I'm not sure. I've seen him for 10 years, though, and am afraid of being invalidated by a new doctor. At least he believes that I have PTSD and realizes the impact it has.

 

[ShodokanJenn]

My family practice doctor is the one who prescribes my pain meds. I have to sign a pain management contract that says I won't receive pain med prescriptions from anyone else, and that I agree to random screenings and pill counts. My symptoms are reasonably controlled with what we're doing, so I haven't gone to a pain specialist. If this stops working, then I will because this is about the extent of what my doc is comfortable doing.

Staying active has made the biggest prevention measure. I'm sorry your doctor doesn't believe in fibro - I've seen people suffer so much with it. Scary as it is, it may be a good idea to find a new doc.

 

[Broken Dahlia]

My family practice doctor is the one who prescribes my pain meds. I have to sign a pain managemen...

I tried pain management once; he refused to help me once he realized that I smoke pot and reported me to my primary. I know that sounds dumb, just quit, but it helps with my depression. So I have stayed out of fear. Guess I will have to try something new.
What kind of exercise do you do? I used to run and miss it but I can't do that anytime soon. Thank you for sharing, you are the only person I have met who understands this.

 

[ShodokanJenn]

I'm sorry that the pain management doc refused to help you. It's so frustrating when that happens. I once had a doc refuse to treat me in the ER when I needed stitches, because it was self-inflicted and "I brought it on myself." I ended up having to call my family doctor at home and he came in and did the stitches.

Exercise - I do stretches three times a day, and gentle strength training every morning. I do martial arts every night. The martial arts aggravates it but I love it too much to give up. I can run about a block before it hurts too much to continue. I also roller-blade. It is low impact and gets the circulation going and my heart rate up and gives me a big endorphin rush, which all help with the pain.

 

[Broken Dahlia]

I'm sorry that the pain management doc refused to help you. It's so frustrating when that happens...

Wow! You sound like you really do stay active. I did notice a difference when I did some cardio, but it is hard to figure out how to do at home without specialized equipment. Physical therapy exercises strengthen and stretch, but I need the endorphins. Maybe I'll try rollerblading when I'm able, I liked it when I was a kid!