It's official
 

I got the diagnosis today. It's CRPS! [emoji15] Ok so now they want to do a sympathetic nerve block. Thoughts, concerns, opinions, pros, cons? Help!

Hi carolina,
Doing a nerve block is par for the course. It will tell how much damage and location. Sometimes! I say that because they only work part of the times. It might help in prescribing relief. But the decision will be yours.
I got tested but it didn't work in my case. But even that told something.
Good luck in whatever you choose...

so sorry....:hug:

Hi Carolina Rose,

So sorry to hear you have joined ranks. Poop! I think the decision to have a block or not is highly personal and the literature is mixed. There seems to be a degree of controversy on whether they are truly diagnostic for CRPS or not. Do a sympathetic block on anyone and their limb will warm. Ought to tell you if your pain is sympathetically maintained though. I have read of people getting serial blocks, even 2-3 in a single week over a period of weeks. In my mind this seems excessive and like a set up for scarring on the sympathetic chain. All things in moderation. Despite the "oh my God, it's CRPS, hurry up and do something" that may be floating around in your head or the doctor's head I don't think taking a few days to look into the research on Pubmed is unreasonable. It is an invasive technique with potential complications and should be undertaken with information on board. That said, many people have obviously found relief with them and they may be just the thing for you to knock this thing down and start recovering.

I decided against one for myself but I have a problem of scarring with unnatural enthusiasm. There is an option of trying an oral sympathetic blocker (something in my back pocket). Phenoxybenzamine and clonedine are both recommended by Dr. Michael Stanton-Hicks of Cleveland Clinic as useful. Clonidine is less effective per literature but widely available. Studies on Phenoxybenzamine are positive BUT it costs a ton of money and no generic is currently available the USA. You can order from Canada with a script and the patience for it to get shipped from Mauritius. (I know this because it really is in my back pocket).

Please let us know what you decide and how it goes. I am sending Healing Love and thoughts of fast relief.
Littlepaw:hug:

Thanks guys I have a month to mull all of this over since the closest pain clinic is overbooked. The PA there was very nice and understanding and her first thought once she saw my leg, ankle and foot was RSD, the Dr on the other hand was very short and impersonal. I really wish there were Doctors close by that understood this condition and could help me with understanding it. But it looks like it's over 2 hours no matter what direction I go. [emoji107] but hey that's what I get for living the country life.[emoji191] [emoji200] [emoji202] [emoji215] . I am willing to give this a try once. But if it turns out bad or doesn't last I will be looking into Russell's group in Winston-Salem. Again thanks so much for lending an ear. I have definitely been a wreck today.

Littlepaw, wondering who wrote for phenoxybenzamine for you..
 

Hi all, Hi Littlepaw...

I tried to message you directly but couldn't figure out how to.. hope you'll see this - I'll say more about my story below, but was wondering, who did you find to write the Rx for you for phenoxybenzamine, Littlepaw? i read all the studies about it and it seems like one of the more promising early intervention treatments. I really want to try it, but the pain doc i saw wasn't biting when i asked about it.


I'm pretty willing to travel, make a million calls, spend money, etc, to try to stop this in it's tracks before more time passes. Even if it doesn't work, or if I don't actually have it, I want to sleep at night knowing i tried my best to intervene early.

so sorry we are .. all here. reading these threads has been really helpful and informative. some of the content here on neurotalk seems a bit more thoughtful and helpful than other forums i've come across.

the short version of my story is that I might have RSD/ CRPS .. I have all of the symptoms, and saw a pain specialist yesterday who said, yes, he thinks i have it.

Thankfully, i do not have the excruciating pain people talk about. I'm very grateful for this, but.. as I have all the other symptoms, terrified that that could be just around the corner if i don't act fast.

thanks a bunch for reading, and for any insight : ) < 3

Hello Haywired and Welcome,

I am so sorry you are here with us. Hopefully, it will be a short stay. We know it is scary, but even if you have CRPS there are statistics from highly regarded CRPS specialists that indicate 80% of people improve over time. The fact that you don't have pain is great and IMHO bodes positively for recovery.

Two months out from ankle trauma and surgery is not very long at all. I am by no means saying you don't have CRPS but some of the symptoms (swelling, color change) are normal post-op but don't always resolve as quickly as doctors think they should. I have seen an article for CRPS without pain, it is a thing, but those cases resolved with PT and weightbearing. Let's hope that is the case for you too! If you are not very mobile yet that could be contributing and post-op swelling can certainly aggravate nerves and make them act buggy. I completely understand the driving desire to DO something. I encourage you to start with the least invasive options first.

A PT and exercise program is imperative. If you haven't started PT yet, now is a good time. Just be sure they don't try to push TOO hard. There is definitely a sweet spot of balance. Aqua therapy is great after lower limb surgeries. I rehabbed after 3 operations that way. Start low, go slow. Biobased recently posted a great article about the effect of spending time in the water on CRPS. For myself, it was the place my foot looked the most normal when I was at my worst and really had a positive effect on symptoms.

I took two rounds of oral steroids early on at the recommended dose for CRPS (10mg 3x day for 10 days) and found that helpful. Anti-oxidants help combat the inflammation that contributes to maintaining CRPS And keeping stress down will help too. The phenoxybenzamine was impossible to find when I was looking for it, perhaps that has changed. Production had ceased and I actually resorted to ordering it from Canada. The only time I've ever done that. I did have to send a prescription for it which was given by a sympathetic doctor willing to let me try it. For me it actually made things worse because the added blood flow increased pressure in an area where the nerve is wedged in tightly. But, I have a lot of scar tissue and compression so don't generalize my response.

Hang in there and try to be patient with your body. It has been through a lot with your surgery and is still healing. That process will easily take 4-6 months, longer for complete bone remodeling if you had a break of any kind. Give yourself credit for small gains, knowing they will build over time. Improvement can be slow and sometimes requires one to pull back after overdoing to start again, but it WILL come. There is hope and recovery and healing with CRPS. I hope it finds you soon!

Come let us know how you're doing. I'm sending thoughts of relief and healing, :hug:
BTW, you'll be able to send messages after a certain number of posts.

Haywired,

I just altered my earlier reply slightly because for some reason I had it in my head that your doctor wanted to do a block. Sorry if that was confusing. You were probably wondering "what the heck". I glanced at the earlier parts of this thread and I think the details from someone else just sorta fused in my mind...

Ok I did have oral surgery and ketamine in the past week - :D hee

I've never heard of that medication being useful in "treating" aka reversing RSD/CRPS.

I have been on a similar medication; did nothing. YMMV. Of course it's different for everybody.

If you are early-stage, then the pain isn't that intense as it can get, but once the pain has a chance to "settle", you'll *feel* it, TRUST ME on that!

So the key is to get to it early.

How is your doctor NOW treating you, if I may ask?