Hi. Thank you for the reply.
A vascular doctor diagnosed after he tested me for Peripheral Artery Disease and a blood clot. I told him I had pain in my calf and cold/tingling feet.

I'm able to touch my leg but not use it.
When I walk on it , it just gets worse and hurts really really bad. I tried building up slowly but then the pain comes back more! I'm just so confused. I'm in a wheelchair now. I wasn't in a wheelchair for two months and here I am again. It's so difficult for me to deal with because I was a ballet dancer and a college student. All my friends are moving on and I'm just devastated. Hopefully it is something else or something curable because I don't think I can deal.

I still need a bone scan, nerve conduction test and MRI as well but my doctor is so sure I have this.

Ave you tried warm water PT? Regardless if it's RSD, if you're unable to manage putting weight on your leg, getting in a pool might do you a world of good.

Make sure you don't use any ice, just in case...

It's always impossible for us to know how skilled your doctor is at diagnosing CRPS but its something that can be very difficult to diagnose. Its important to get a second opinion from the other doctors you are being referred to along with the various tests they are proposing to do. It may still turn out to be something else but if not then at least you know. It's good that this is all in hand for you.

If it is CRPS then the absolute worst thing you can do is use the wheelchair. Even though it hurts much, much more to walk on it, you need to grit your teeth, be tough and keep doing it. Not using your leg will only make things much worse in the long run and ultimately it is likely to make the pain levels much worse too. Building it up slowly is fine but be aware that it isn't likely to make any great difference to the amount of pain you feel, at least not in the short term. It will probably still be significant. Even if you are not able to cope with walking big distances, you need to keep walking on it, even if its for shorter periods, several times a day in your home, that will make a huge difference. I don't know what PT you are doing but, again, you need a rapid referral to a good PT who has experience of the condition and expect to be working with that person for some time. If it is CRPS, the pain you are feeling isnt making an injury worse nor doing any physical damage and is something you have to learn not to fear. Easy words, but extremely hard to do as we all know from our personal experiences.

As a dancer, you will be no stranger to hard work and toughing it out through physical discomfort I'm sure. All of that determination and discipline will be invaluable to you in getting through the next phase of your life. CRPS is often a condition that very active and sporty people get so you are in good company. It is exceptionally difficult to lose an active lifestyle and feel so limited but there are people who eventually obtain a remission from their symptoms, often with intensive and tough PT and lots of determination amongst other coping strategies. It can take some time but it is possible.

If your doctor is sure it is CRPS you need to seek a referral to a good pain management specialist, preferrably with minimal delay, who can start to address your particular symptoms, probably with various medications and other interventions. I would also urge you to learn all about the condition from reputable sources like the RSDSA.org website. You have a hard journey ahead and you will need to be your own advocate for your treatment. Knowledge truly is power when you have this condition - it allows you to sort the useless doctors and PTs from the decent ones, gives you the ammunition to fight to try all the different treatments and medications that may help and gives you an idea of what different options may be out there in the future.

I was very active and sporty so I know how desperate it is to be in agonising pain, feel uncertain about the future and able to do very little. If you are starting to feel depressed about things, please don't suffer in silence, its totally normal and understandable. It is something that most of us have had to deal with along with our CRPS. You may find that getting psychological support is really helpful to you as you go through this diagnosis and treatment process.

I wish you well and hope that you get lots of useful help on here.

Abbey,

I'm going to tease you a bit......

You are doubting that your issues might be RSD because you are not currently in the severe pain that you have heard affects most RSD'ers.

You are also a young, previously VERY active and limber, woman who is now wheelchair dependent because you cannot tolerate the pain that comes with consistent weight bearing on your leg.

Helllllooooo !!!!!!!!!!!!

If you tried to live life as before, you WOULD be dealing with more pain, right ? De Nile is a river in Egypt !

Okay, end of teasing. I have to try to make light of the RSD monster and the way it affects us all or I'd go bonkers.

I'd be happy for you if you were to get lucky and eventually find out that your symptoms/issues are NOT RSD, but instead an easily fixable problem.

In the meantime, if you can start preparing for the worst and learning more about RSD management, you'll be better able to collaberate with your medical team and participate in a plan to maximize your functioning and comfort level. If you truely cannot bear weight on that leg, you'll need to be clear with your docs whether the issue is that your leg gives out and cannot support your weight or if it is pain that is limiting your ability to bear weight on it. If you are limited by pain, it is so important to ask/beg/plead for help with managing your pain so that you can attain full ROM and basic functioning. Gentle PT can start without full weight bearing and slowly advance. Maybe it's not a reasonable goal for you to 'lose the wheelchair' totally, but perhaps it could be a goal to use techniques (meds, heat, massage if you can tolerate it) to help you manage the pain so you could advance to weight bearing during PT sessions, or for short periods during the day......and use the wheelchair at other times to help manage your pain. It is critical to try to attain ROM and basic functioning. Be aware that more advanced PT, such as weight training, CAN do more harm than good in RSD'ers.

As crappy as a dx of RSD is.......that you got the dx this early in the process is AWESOME ! Appropriate medical interventions NOW might save you a lot of pain and disability down the road. If your docs are thinking about repeated nerve blocks or Ketamine treatments (to name a few) at this stage, you have a shot at remission.

Glad you found us here at NT !

Just wanted to add one thing, you can have RSD and have an underlying structural issue. You can also have RSD AND and underlying structural issue.