New diagnosis of CRPS (RSD)
 

So after 2 surgeries, and lots of pain, I a referral from my podiatrist got me to pain management doc. He says I have CRPS RSD or whatever it's called.

I understand from looking around it must be in early stages still, I don't have some of the more extreme swollen foot leg issues etc. But as the day goes by I have horrid pain swelling etc in my foot. Hard to take off shoes, socks, hurts to lay foot on bed certain ways, sheets blanket or dogs rub in it hurt.

He has scheduled me for a sympathetic lumbar nerve block to see if it helps, as I understand to see which type it is.

So any help with any information would be very helpful!

Also is it normal for it to not always hurt? Mine seems to be not as bad I'd I just don't walk... Lol yeah that's helpful for weight loss too!

Hello Brandon,

Sorry for what you are going through. It is no fun needing to be here but welcome nonetheless. I too am a CRPS after foot/ankle surgeries kinda gal. I would very much like to give you a properly welcoming post with my usual tips on where to go for info and my schpiel about making sure it's not nerve entrapment. That said it is late and I am a tired pup so I am going post the link to my favorite info video tomorrow.

For the meantime, know that 80% of people get better over time. Not everyone has all the symptoms and symptoms change. Take at look at the Budapest criteria for CRPS if you question your diagnosis. I never had crazy swelling myself. It IS normal to have swelling after foot surgeries, sometimes for months and that is uncomfortable for anyone CRPS or not. Epsom salt soaks are good for feet and light compression can help after foot surgery if you can tolerate it.

Know that you are not alone in this, there is good support here. Can you give a little more info on your procedures? when, what , hardware, etc?

Hang in there. Things DO get better.
Sending Healing Love,
Littlepaw :hug:

Sorry for the reason, but welcome to the group. I am newly diagnosed as well and these folks can give you some awsome links to check out.
My RSD doesn't hurt constantly every day, but the more I'm up and moving the more I swell and the more I hurt. I have my sympathetic nerve block on the 17th of next month to see how bad mine is and if it will offer me any relief. I already take anti-inflammatories and am being switched from norco to ms-contin for pain control.
Again welcome this is a great bunch of folks here and are always willing to lend an ear. :hugs:

It absolutely makes sense that it feels best when you're resting it, BUT that is a short term strategy. The less you use it, the more atrophy you'll experience, and the worse your symptoms will become. The trick is to find the balance of using it without over doing it, and to build up as much endurance as possible. One of the "easiest" ways to rehab will be in a warm pool.

Blocks can be used for diagnostic purposes, but they can also help decrease pain for days or weeks at a time, so that you to rehab. There are other options as well, but they are not a bad way to start, IMO.

Initially podiatrist found a huge cyst in my cuboid bone and lots of arthritis, tries a tarsometatarsal joint fusion, after a year and a half of pain after that surgery another podiatrist went in and did revision and removed hardware thinking I was having a reaction to the hardware, along with I had broken 2 of the three titanium plates...

After this second surgery in December the pain was just amplified and is worse than it was.

But yes the pain just gets worse the more I walk... Drive etc... By end of day just Aghhhhh...

Is that enough background? I can go into more detail if I need... Lol

Second surgery they put in a Pyrosphere... The last ortho I talked to wants to take it out.... Another surgery... Or not...

Hi again Brandon,

Geez. Poor foot. It has been through a lot.

I am always concerned post procedure about the possibility of nerve injury, especially with hardware in and out. I am skewed by personal experience in which a minor ortho procedure injured my calcaneal branch. My foot felt like it was made of broken glass and was worse after surgery than before. Many months later I finally saw a plastic surgeon who specialized in peripheral nerve repair. He suspected a neuroma and was right. I had a positive "scratch collapse" test as well as 40% reduction of signal on a nerve conduction study. We decided to go in - I ended up with a 3.5 hour nerve repair and neurolysis and major releif. My CRPS came after a later, different procedure. I ALWAYS believe it worth checking for nerve injury after surgeries. Sometimes they can do something about it.

On general info I like Dr. Pradeep Chopra' video "CRPS Diagnosis and Management". He is highly regarded, gives lots of info on treatment, therapies, etc. It's 2 hours long so just take it in chunks. http://youtu.be/s3LKhOZ8mAM

Also a thought for new diagnoses when the case is not super florid is the following article. "Peripheral Nerve Blocks Relieve Symptoms Mimicking CRPS"
http://www.pain.pitt.edu/paincontent/news/PMNews.pdf

This may or may not apply to you but I am for anything that potentially gets someone out of this mess. I myself have had quite a bit of relief with local steroid shots specifically aimed at reducing my scar tissue.

On sympathetic blocks, first I have not had one personally but I am not sure how it would tell you what kind of CRPS you have. Did the doc mean figuring out 1 or 2? I don't see how it could show peripheral nerve injury but maybe that's not what he meant. BTW, a "positive" response in limb warming does NOT necessarily diagnose CRPS. Anyone's limb warms with a sympathetic block. The important thing is if it brings pain relief. If it does and allows you to start rehab then great!

I am with Lit Love on the pool. I spent many months walking in the pool after my procedures and credit the water for a lot of my recovery. Non-painful weightbearing is important. I also spent time on an exercise bike and on an elliptical since that doesn't stress the heel to toe motion but does allow weightbearing. It is okay if your recovery is slow and starts out low-end. The important thing is gentle gradual increase. A lot of us get over-aggro about getting better and that can just make things worse with CRPS.

I too would have no pain if I would just sit on the couch all day and not use my foot. Like that's gonna happen. Do as much as you can but minimize flare. Go for a bike ride instead of taking a walk if that keeps you active. Maintain muscle strength in alternative ways. Remember that the foot is exceptionally complicated. You have had major mechanical changes and those take a long time to adjust to. I don't know if orthotics might be helpful for you. If some of your pain is scar related on the socks, sheets etc. discomfort you might try a topical.

I hope some of this helps. Come see us and let us know how you are doing. I hope you find relief soon.
Sending Healing Love,
Littlepaw :hug:

Welcome Brandon...

Had my sympathetic nerve block done this am. I can say the pain hasn't gotten any better today if anything my foot hurts worse, and I am having strange spasms and pain in the outaide of my upper thigh.
Anyone else? Any ideas, will it be better tomorrow... At this point not sure if I should have had it..

Sorry, but if you haven't experienced pain relief yet, I've never had it increase later.

You might consider scheduling a massage asap, especially if you feel you might be in worse shape than before.

http://www.rsdrx.com/massage_therapy.htm (Not everyone is a fan of Hooshmand and some of his info is definitely outdated, but in my experience massage is beneficial after blocks.)

Taking a long soak in a warm bath with Epsom Salts might help.