Do I really have RSD?
 

Hey guys,
My name is Taylor and I am 21 years old. I was diagnosed about 6 months ago, after my third ankle surgery. My ortho doc recommended me to another doc, who i see now. I also went to the Cleveland Clinic to get another opinion. They all say I have the symptoms of RSD, but how do I know for sure. I mean something is clearly wrong with me :P but my leg looks completely normal. The pain has moved up to my hip, and I have all the other common symptoms. But I have no skin changes, or swelling. This makes me question if I was diagnosed correctly because I hear and see that that is one of the main symptoms. Does anyone else not have any physical appearance changes? or no any tests to help diagnose me for sure.

Maybe I am just having a hard time accepting that I truly have this, but sometimes I just wonder if this is whats truly wrong with me. I hate that its so invisible, it makes me feel like I am crazy.

Hi and Welcome!

So sorry you had to come and find us but there is good support and plenty of understanding. First of all you are not crazy - your nerves have been thrown into overdrive by trauma and nerve healing is slow. CRPS diagnoses are hard to accept, one because nobody wants one and two because when cases are not florid it can really be hard to be certain. It is great you don't have autonomic symptoms but that seems kind of strange to me. Are they a thousand percent sure there isn't something else causing your pain? CRPS is a diagnosis of exclusion. With 3 surgeries behind you there could be any number of things going on. If you have CRPS then you have CRPS but make sure there is nothing treatable first.

I posted some info under the heading Nerve Injury Resources a few days ago. That is always something to consider post-op or post-injury. There is also some great general CRPS info for Dr. Pradeep Chopra at this link. http://youtube.com/watch?v=s3LKhOZ8mAM
He gives lots of tips on treatment and therapies. He is Non-doomsday and fairly conservative.

Keep moving and working on gentle consistent exercise. Get in the pool if you can, Aqua therapy is the best! Get support, therapy is helpful in dealing with the changes, sadness and anxiety and can help you learn ways to manage the pain. Decreasing stress is good all around. Be gentle with yourself, this is not your fault. Give your foot and ankle lots of lovin' through gentle massage and skin care this helps the nerves re-organize and helps your attitude towards your injured limb. And be realistic, this goes for your doctors too. Recovering from serial ankle surgeries is harder than recovering from one. The changes in mechanics can take a lot of time to settle and remodel. Keep working at it. Healing takes time, trial and error you WILL make improvement. 80% of CRPS sufferers do!

Sending Healing Love, Littlepaw :hug:

hey, thank you so much.
I had my first ankle surgery at age 16, then 18, then 20. with all my symptoms that I do have they can't think of anything else that is wrong. I would love for it to be something that is treatable, but of the 3 docs i have seen, this is what they keep saying and can't find any other issues. but like i said, my leg looks completely normal.

Doctors tend to lean towards diagnoses in their specialty. Sometimes it can be helpful to try a different discipline. I have had really good experiences with PM&R, Physical Medicine and Rehabilitation as a specialty. They have a different approach and a strong emphasis on mechanics and functional improvement. A lot of people here also see neurology. What is your pain like?

my pain is constant, aching and stabbing pain, and it also feels like it is burning on fire but is cold at the same time. it is sensitive to touch, socks, showering etc. I also get random feeling of muscle spasms where it feels i am literally being stabbed.

Is the whole leg that way or just one area? If there is a scar neuroma at your surgical site it could cause the same symptoms but they might be fairly localized.

the burning pain is more localized to my ankle/foot, however achy-ness and stabbing pain has spread up to my hip. what is a neuroma?

A Neuroma is formed when a nerve is either partially or completely cut. Think co-axial cable with the fascicles of the nerve being the individual fibers inside the bundle, there can be many of these in major nerves or just a few if a nerve is small. When a nerve is injured it tries to reconnect, if it cannot do this due to scar tissue or too much distance it will just create more and more axons trying to reach the target. A neuroma is big bundle of theses axons tangled up on themselves like a ball of yarn. They then just start to fire all by themselves in the chaos. Very painful. My nerve was only partially torn inside its sheath and it still went berserk sending out axons. I had burning, stinging, electric shocks and after a while deep shooting pains that went up my calf well above the cut nerve's territory. Mine was on a named nerve branch, but they can even form on the tiny cutaneous branches that get cut in surgical incisions.

I would be suspicious of pain that seems to stay all in one nerve track no matter if it goes all the up to your hip. Pain that goes all around the limb is involving more than one nerve path. You can find good charts for nerves of the leg online which may help you localize your pain if it can be localized.

So sorry you had to come here to find us, but it's a very encouraging group of people. My son is 13 and had ankle fractures and surgery last September and was diagnosed in December with CRPS. Little paw is right about the pool, it's the best place for therapy, because it doesn't hurt nearly as much to move and walk in water. And it relieves anxiety that is partly caused from all that boyish energy building up inside with no outlet. :D Do they have you on a vitamin regime yet? Magnesium helps with spasms, Vitamin C with pain, etc. Also, lots of stretching and massage may help with the spasms. It can take a couple months for the vitamins to start making a difference, but they do help. And no, you're not crazy. Not everyone has the same symptoms. For my son, the color changes only appear when he's cold or is dangling his foot. Other times it looks normal.

Those are the only time mine changes colors too! but how do you do water therapy? I am almost out of PT visits for the year. Is it in OT or something different? and no I have not tried any vitamins.
thank you so much!

Specific water therapy exercises will depend on what you can tolerate, but can include walking, swimming, sitting and "pedaling", marching, lunges, walking backwards, step-ups (if the pool has wide stair steps vs. ladder) etc. Does your physical therapy place have a pool? Your doctor should be willing to write the script for aqua pt. They can get you started even if you don't have many more visits left for the year. Then if you have a local YMCA or other public pool, like at a gym or recreational facility, you can use that for therapy. I just pulled my son out of formal pt because he's used 20 of his 30 visits for pt for the year, and they moved him from the pool to the gym, which he wasn't tolerating well yet. We go to the local YMCA. They have a therapeutic (warm) pool and also a 0" depth entry pool. The nice thing is that he's been able to walk in gradually shallower water as he makes progress. If you ask your physical therapist, they should be able to give you some direction as to exercises you can do in the pool even if it's not at their facility. The important thing is to keep moving it.

Others can weigh in on vitamins that are helpful. These are what my son's doctor has him on: Omega 3 (for inflammation of nerves, even if there's no visible inflammation), multivitamin, Vitamin C, Vitamin D, Vitamin B, and a script for a liquid magnesium. There's other threads on here with more vitamin info, too.

Do you have temperature regulation issues? (If you aren't noticing it, it doesn't mean it's happening.) Strange sweating? Any strange hair growth patterns? Changes in skin texture? Shiny skin? Changes in your nails?

These issues don't have to be constant. They can come and go at various times over the years. They can be limited to a very small area, or they can move body wide.

Absolutely explore EVERY possibility. Get opinions from doctors with significant CRPS experience.

Just curious, what did they stick in your ankle? and where and why?

my foot either feels like it is frozen or on fire, but no visible skin, nail, or hair changes. And its some kind of new brace, i know its made of plastic. My ankle joint was very loose, and it felt like it was popping out of place, so they put it in to stop that from happening. It limits my range of motion but only a little bit.