Recently diagnosed with RSD, following knee surgery.. I had a lateral release and reconstruction of a ligament to try and prevent recurring patellar dislocations...I have suffered numerous dislocations since childhood, in both knees..I finally had to have surgery in March, followed by manipulation under anesthesia in May.. After months of PT, with little improvement of my ROM, my Dr. Informed me that I have RSD.. I have been walking "stiff legged" since March.. I'm unable to bend much at all.. I've had numbness around my ankle that seems to be spreading, with burning and tingling.. My skin around my ankle looks blotchy and bruised.. Hypersensitivity to touch and temp, with pain that starts mid thigh and goes down to my foot.. I've noticed my toes going numb, and itching? I still have swelling, and it looks and feels like my knee cap is "frozen" to the side..my Dr. Told me to stop PT, for fear it is keeping my knee aggravated.. Put me on neurontin, hydrocodone.. Told me to go about my daily activities, as if I can do anything!! Said if it doesn't get better on its own in 6 mos, another surgery may be necessary..I had to do my own research on RSD, and from what I understand it can be very debilitating..I tried to get a 2nd opinion, but two different surgeons wouldn't see me.. I tried scheduling with a neurologist, but can't get an appt. without a referral.. I called my Dr. Back to voice my concern, and was told if it got way worse, to come back in.. If not, take your medicine, and we will see you in 4 weeks.. I'm extremely depressed, tired all the time, and don't feel like getting out.. I can't walk far, it's hard to drive, and I hate being stared at everywhere I go.. I don't know what to do next?? Sit and wait? Demand that my Dr. See me sooner? Get a referral to a neurologist? My main priority is to be able to walk again.. I can handle the pain.. Well, for now, anyway.. Unless it becomes way worse.. HELP! Thanks in advance!

Hi and Welcome,

I am so sorry that you have come to join our club, but you will find support, info and companionship here.

It is important to learn about RSD from a reputable source. There is a lot of misinformation out there. 80% of people improve over time per Dr. Stanton-Hicks at Cleveland Clinic. RSDS.org is a good source of info and I am perpetually recommending CRPS specialist Dr. Pradeep Chopra's video "CRPS Diagnosis and Management" which is available on YouTube. It has loads of tips on treatments, nutrition and therapies.

I find your doctor situation concerning. Why wouldn't the other two surgeons see you? Are they in the same practice? not wanting to get involved in someone else's procedure? Getting a second, follow up opinion to your surgery could be very important. There needs to be certainty that something did not go wrong in there that needs to be addressed in order for you to heal. Have you had any post-op imaging, MRI, ultrasound, etc.? Make sure everything is as it should be and nobody left their car keys in there . Your doctor can order this, just call if you have not had any and ask for it to be done before your next appointment.

What type of doctor are you seeing? If they do not routinely treat CRPS then get in with someone who does. Options are neurology, Physical Medicine, or the most likely, Pain Management. You are very early in this process and that is a good thing, but I don't see an advantage in waiting. You can start rule out testing and imaging with your doctor now and if nothing in there is a problem then get on with more specific treatments with a specialist. keep in mind too that you are not that far out from surgery. post-op swelling of the normal variety can take months to resolve and can put a lot of pressure on nerves in the meantime. This alone can cause some itchy, numb, achy sensations. CRPS will make the swelling worse. Be sure you elevate adequately.

Exercise and PT is recommended as one of the number one things to do for CRPS. The fact that you are not progressing with it is another reason to make sure everything is okay in there. In the meantime, you might find swimming helpful. It is the place to be when you can't walk properly. It will help with swelling, strength and circulation.

On depression, it goes hand in hand with chronic pain and illness. What happened to you is traumatic and a loss. It is hard getting through that. Get support if you get stuck. I waited too long to find a therapist who dealt with chronic pain and traumatic life change. Silly me! She was a tremendous help to me with sadness, anxiety and coping skills to deal with pain.

Come here when you need info, to vent or get a virtual hug. You are not alone. There is always someone around.

Sending Healing Love,

I'm sorry this happened to you. I have CRPS in my knees too and it was SO frustrating to not be able to walk. I hope they gave you crutches or some other assistive device for the time being. Sounds also like your doctors may not be the most expert at caring for CRPS. Neither were mine. Here's what I found out that I wish my doctors had told me at the beginning:

DO NOT ICE. On some level my intuition always knew this but I ignored it to listen to my doctors telling me to ice. That was a mistake and made me feel worse.
Move it around in the ways that you can. I know moving is probably scary right now, and kinesphobia (being scared of movement) is really common with this. Unfortunately, the only thing that hurts more than moving is not moving. Like littlepaw said, the pool is a really super helpful way to work out stiffness. The first time I did the pool I just held the wall and took the world's slowest steps in the water for about 30 minutes. It was amazing how much my limp reduced after I did.
I personally have found that kinesiology tape has significantly reduced my pain, swelling, and stiffness. There isn't research on this yet, but anecdotally from myself and a few others it seems to work.
ASK FOR HELP. This was really hard for me at the beginning, but I've found it's a brave thing to do. Let others help you with tasks and ease your stress.
Reduce your stress where you can. I personally sniff lavender and watch movies. Do what works for you!

Thank you so much for your kind and encouraging words! I really appreciate your response! My surgeon is supposed to be one of the best in Little Rock.. I have a follow up in about 3 weeks, and will definitely take your advice and ask for some type of follow up imaging.. I'm concerned with the fact that I'm not doing any kind of PT right now.. Although, it often left me in tears, barely able to walk.. The places I have called for a second opinion refused to see me, saying I was in a 90 day global billing period with my insurance.. Whatever that means?? It just seems that unless you've been through this, it's hard for people to relate.. I've had people say it's all in my head.. That I'm just afraid to bend my leg, as if it's my fault that it hasn't healed.. My husband and I keep fighting, because he gets frustrated that I feel sad and depressed.. I feel like he simply doesn't want to hear about it, and thinks that it is no big deal.. Thank you for the resources, I will definitely check them out! Hopefully I will have answers sooner than later! I hope things are well with you!

Hugs to you!!

tlaymon

Thank you so much for your response, whiteaa.. How are you doing with walking and range of motion? It's crazy how you mentioned the ice.. Before I was diagnosed, the last few times I went to therapy, I noticed when they tried icing my knee, I couldn't stand the cold! I had to take it off, it was so sensitive.. I will definitely try swimming! I'm hoping for some answers at my next appt.. It's frustrating that he wants to take the "wait and see" approach.. I can't imagine going 6 more months like this.. I'm trying to stay positive.. I know things could always be worse.. I find it strange that he gave me very little info about RSD.. I pretty much had to research it myself.. Red flag, maybe??

90 day global means that your insurance paid a flat rate for your surgery and follow up appointments for the 90 days since your procedure. All care at your surgeon should be covered during that period. Perhaps others in the same specialty can't get paid during that time? I am not sure.

definitely try getting in the pool. It will be easier than walking and will get you some much needed gentle movement for that limb.

This is absolutely a big deal. It is hard for others to understand and they are often frustrated, scared and potentially not coping great either. Don't feel like a woosie. Surgery of any kind without complications is stressful and anxiety producing. Why the heck wouldn't you be having a hard time? Having your mobility taken even temporarily is enough to put most people into overdrive. It is hard in the beginning. Be kind to yourself, knowing that you are doing the best you can right now.

With a combination of no ice, prescription NSAIDs, KT tape, pool, and physical therapy, I am proud to say that I have regained my range of motion and ability to walk without a limp (I can even do stairs now!!!). There are still some things I can't do, like grocery shopping, kneeling of any kind, lunging or squatting, but it helps to focus on the gains instead.

Wait and see does not sound like a good plan to me. CRPS is aggressive and I think it is important for us to be aggressive back to avoid spread and worsening of symptoms. Part of the problem with doctors treating this condition I think is that it's so rare and every scientific study I have read on it pretty much concludes with "meh...idk maybe". I think you doing research is a great thing and you should keep doing that and advocating for yourself. As much as our culture treats them like it, doctors are not magical all-knowing wizards. If you disagree with the treatment, let them know and tell them what you think is appropriate. And your body is wise! Listen to it!

When my feet were burning hot I used ice and continued to use ice, because it supposedly would help with the pain and swelling. I think I did some serious damage to my limbs.

I wish I had known about DMSO at the beginning of my CRPS journey, unfortunately by the time I purchased it my CRPS had turned cold and DMSO is not usually effective for cold CRPS. If yours hasn't turned cold, you might want to research it.

I found relief from swelling using a Bowen Therapy technique I found on YouTube. It sounds crazy, but it worked for me. Basically, I wrapped special washing crystals in a cotton cloth and tied the cloth to the swollen area for about 8 hours. My husband could not believe it when I showed him the wet cloths. Using this technique I no longer needed ice to relieve swelling.