Hi, this is my first post. I had a spiral fracture tibia and fibia treated with a tibial nail (think thats what its called) about 10 yrs ago, had swelling ever since, i have had a scan and my venous system is fine that speciaist said she thinks i have lymphoedema and crps, I have seen the lymphoedema clinic doctor last week and i have lymphedema. She also said she thinks i have crps. im confused reading posts on here as i dont have a touch issue, it feels weird and tingly in prts but not painful really. walking though is very painful, especially after 10 mins or so. because i dont get severe pain and discomfort at touch could it mean there wrong? I see pain clinic next month. Thanks

Hello,
Generally, you need a neurologist who's familiar with RSD needs to do a 'clinical' diagnoses.
Since there aren't any bullet proof scans or such, it needs to be a doc with LOTS of experience, usually the cheif of neurology at a teaching hospital (University).

I wish you the best.

Also, where abouts do you live?

Near what big city?

Pete
ASB

I had knee surgery last April. It felt good for a couple of weeks and then started feeling the same as before surgery. I went back in and they scoped again to see if maybe something was missed. He cleared out some scar tissue, removed plica and shaved down a bone spur. That was two months after the first surgery. I never did feel better after that surgery. I was diagnosed in August 2012 with CRPS.

I didn't have much skin sensitivity to start with either. It was pain in my knee. Then the sensitivity gradually came into the picture.

I was diagnosed by my orthopedic surgeon who then referred me to a pain management doc.

It's so true that you don't have to have every symptom of CRPS/rsd to actually have it. I started with pain, then sensitivity. I am just now starting to notice skin blotchiness.

There are many here on this site much more knowledgable than I am when it comes to CRPS in general, but I am more knowledgable when it comes to my own body. So it goes with each one of us here....only you know what you are feeling, so you need to find someone who will listen to you and make the proper diagnosis.

Good luck.

Hi,

What Kymmie says is so true. My story is sort of similar to hers - I had a simple knee scope almost two years ago, they found acute PF osteo-arthritis, did the shaving and biopsies etc and closed up. I had terrible pain when I woke, no one understood why, I kept being told I shouldn't be in so much pain... After I had morphine things stabilised a bit and I went home after 3 days instead of my day surgery expected.

My initial symptom was pain. Horrible deep pain, no burning or sensitivity. Then after a month or so I noticed the cold skin, then blotchiness came, then heat, and burning and tacky skin, and hair and nail changes etc... My point is that this danged thing is both unpredictable and chaotic - everyone seems to have slightly different symptoms and they can change or be added to with time. There's a chart for CRPS symptoms as an aid to diagnosis, and it's all about fulfilling a criteria from each category - pain and temp changes can be enough for an experienced doc to diagnose it.

Over the almost two years, mine has spread to my foot and whole left leg, and now my left arm is symptomatic too and I have started physio on that as well. Pain, particularly when walking, is the main issue still.

My skin over my knee is still not that sensitive. My docs are always a bit surprised when they ask if they can touch my knee and I just say yeah go for it. But strangely, the skin over my knee almost feels numb now, yet where it spread to my foot, that is super sensitive. Both main areas act differently (my arm is sensitive but no heat yet), but its all CRPS. It's weird and it screws with your head

Get the best doc you can who knows CRPS, and do a lot of reading yourself, so that when you come face to face with that doc, you can tell whether they really know it or not. Always trust your own body and your instincts, and if they make you feel uncomfortable then find someone else who understands. It's worth fighting for that, because you need guidance with this, and fighting in the dark is no joke!

I'm so glad I found this place. You all get it. You know how we feel and we don't think each other is mad....well not much lol.

Take care of yourself, and good luck.

Bram.