Hi Everybody,

I am new at posting to this forum but have been following the occasional discussions since June when my Orthopedic Surgeon first suggested that I might have CRPS.

In January of this year, I had surgery to fuse both the subtalar and the tibiotalar joints in my right ankle. The surgery resulted in a non union on one of the joints and because of that, I am still unable to put any weight on my right foot.

I was officially diagnosed with CRPS, in late July by my pain management specialist, but by the time I had my first appointment with him, it had already spread throughout my entire body. On my good days, I feel like I have a bad sunburn on my shoulders, neck, upper back, arms and legs. On bad days, all I can do is sit on the very edge of the couch, try not to touch anything, breathe and hope that the meds will help.

I am now taking 600 mg Neurontin 3 times a day, 50 mg Elavil at night and 10-325 Norco as needed, which on days like yesterday was too much. I don't like taking the Norco as it does very little, but very little is better than nothing.

Yesterday, I saw my PM. Since the meds are doing so little for me, he asked me if I would be willing to try a lumbar sympathetic block. He also recommended I see one of his colleagues for a second opinion, to talk to him about the possibility of the blocks and the possibility of a spinal cord stimulation device. I am also seeing a 3rd specialist outside of this office on my primary care physician's recommendation.

This is where I am looking for advice from everyone here. I know that the blocks can help, especially if done early on. At this point though, will I have any benefit with a lumbar sympathetic block, which is only treating the original site, or am I already too late for that now? What are the chances of this causing more problems for me everywhere else?

Looking for your experiences...

Hello and welcome aboard. Hope you are having a less pain day today.
For me, I was told that the block will not help me. 10 years Crps2. However, there are others that this has worked, is still working.
With that being said, I am happy to hear of second opinions and extra doctors evaluations; sounds like you've got a great medical support....
Please with whatever decision you make, keep us updated. Successful or just venting.
Keep up the fight.

Hi and Welcome,

I am glad you found us but so, so sorry you have to be here. It is terrible that you are going through so much and having symptoms spread.

Literature on blocks is variable. They are not curative. Some will find relief and some won't. I think it is really up to your own comfort level. You are not so far out in this process that it seems too late for something to help. Maybe calming the area will help the nervous system overall settle down. I would ask what they put in the injection. Steroid mixed in will carry the results longer than pure anesthetic. I have even read of a small amount of ketamine being given in the injection.

Have they mentioned a possibility of trying infusions of ketamine or lidocaine? Sometimes alpha blockers are used. There are current trials for neridronate going on and the locations have become pretty numerous. They could try oral steroids to knock down inflammation. There are a lot of options. I found better relief with tramadol than other pain meds. Keep trying new things, just be methodical so know what was what.

What has been said about your non-Union? Ongoing pain contributors need to be addressed if at all possible to give you the best chance of recovery.

Please take care of yourself and don't give up hope. Improvement may come very slowly and with tremendous dedication on your part, but it can and does come. Get in a pool to exercise since you can't weightbear and keep on top of any gentle range of motion you are able to do. It all helps in the end and will help you feel better overall. I spent nine months on crutches and the pool was my savior for swelling and other aches and pains for body mechanics gone whack.

come and let us know how you are doing and when/if you decide to pursue blocks so we can send good vibes.
Sending healing love,

Thank you Enna70 for the quick support!

Littlepaw, I see your posts quite a bit and figured you would chime in at some point. Thank you as well for the quick support and information. Having spent a lot of time reading through the RSDHope website, I was already aware of the neridronate trials, but at this time, there are no trials going on in my area. I will keep looking though. They are bound to come to Detroit eventually. As for the Tramadol, it works better for me than the Norco for some odd reason, but it gives me unbearable headaches.
As for the non-union, the Ortho that I am seeing wants to try calming the CRPS imflamation down figuring that it will allow me to gradually increasing my weight bearing and might help the bones fuse better. The other option that he mentioned was the use of a bone stimulator which he is trying to track down for me as we speak. As far as keeping it moving, That is the issue my PM is having. Since the ankle is completely fused, There is no ROM that can be obtained in my ankle. That along with the fact that this 13+ year old injury caused a slight loss of motion in my toes back then, there isn't a whole lot of movement that I can do. I do have a short list of exercises given to me by my PT that I attempt, when the pain allows, but that usually causes a severe flare that lasts for a week to 10 days, which is getting me nowhere. My PT wants to help, but my insurance limits PT to 90 consecutive days so I am left with trying to do things at home. Trying to use a pool is tough. I wouldn't dare taking the chance of using a community pool and the only people I know that had one are my parents. They sold their house that had a pool 2 years ago to retire 3 hours outside of the city. I wish it was closer because they moved to a nice peaceful area with a sandy beach, but I have a hard enough time riding in the car when my husband takes me to the doctors office 30 minutes away let alone trying 3 hours.
The idea of ketamine has not been brought up yet but my Ortho has brought up the possibility of lidiocane. He was supposed to bring that up with my PM but I think we both forgot. Guess that's another thing I will ask about.
All the other information that you brought up are great information to ask my PM next time I go in.

Sorry to hear about the range of motion trouble. I feared that was the case. Bone stimulators are helpful. My mother had one for a major spinal surgery. I wouldnt give up on the pool as it might be one your best resources for movement. I found even swishing around in there with a buoyancy belt helpful for swelling and circulation. I know it is hard getting back and forth. Could you check YMCAs, gyms, community centers or even sometimes assisted living/retirement communites for one with kind of quiet hours off-time that you could go? Often they will allow a pay per visit situation. Especially if you are on crutches.

If you are burning through PT hours without much gain on land they could maybe order aqua therapy at a nearby center or hospital pool.

Be sure to check out Dr. Pradeep Chopra's video on youtube "CRPS Diagnosis and Management" for two hours of tips and treatemnts from a rational, well regarded specialist.

I hope you find relief soon!

Hi Purplefoot,
I don't know that I have many suggestions at this point, especially since you have many complications. Only 4 months in I would usually say the lsb's were worth a shot (literally), but with full body developing so rapidly I don't know. The good thing is it sounds like you have a full team of doctors with 2nd and 3rd opinions lined up. Hopefully they can offer you a full range of options to choose from. The Chopra video is excellent if you haven't seen it, as far as reviewing what options are out there and his opinion on each. Just wanted to welcome you this is a wonderful group to be a part of. Hope to be seeing more of you. Mama mac

Thank you mama mac
Your thoughts about having them done 4 months in, even 6 month in, are exactly what I thought, and is why I finally decided to reach out to everyone here to here there experiences. Seeing as I am already about 8 months into when I first recall having symptoms, and the fact that this is spreading so aggressively, I wasn't sure if they would help or not. Last night, it did dawn on me that if nothing else, if they can give me close to 2 weeks or more relief at a time, I think they are worth trying in an effort to strengthen my right leg and get off these crutches, even to just to get back to a cane.
As for the Chopra video, I don't remember seeing any of them yet. I will definitely check them out.

Link to the Chopra video https://youtu.be/s3LKhOZ8mAM Beat wishes, mac

welcome purple. sorry you have rsd but this is a great group to be a part of because you will get plenty of great advice, caring and support. i have had rsd/crps I for almost five years and tried blocks the first six months. they didn't help much. i am on similar meds as you are now. gabapentin (neurontin) 600mg 4x daily and strong pain killer but with 5/325mg instead of you 10/325mg taken as needed. i don't know what elavil is but also take antidepressants and antianxiety meds to help me deal with the constant pain from rsd. as for scs i don't want to even consider that unless its a last resort. my neurolgist and gp said not to do it and my pm said to do it. i decided not to do it because i was told there could be complications like infection if i tried it and i didn't want to take the chance on getting worse or getting spread if the odds of it helping were like 50/50 if that. i am not a dr but this was my decision. everyone is different and has different opinions and what works for one doesn't always work for the other but the meds are helping manage my pain for now so i'm sticking with them. i hope you find something that helps manage your pain better soon. maybe you need to increase the neurontin (gabapetin) and pain killers. that helped me. let you dr know that if you want to try it. sending soft hugs your way.

Thank you mama mac for that link.
Thank you RSD ME as well

Elavil is a brand name of amitriptyline. From what I have read, it seems to be used most commonly as an antidepressant but also works well for nerve related pain.

When I met with my PM Tuesday, he increased both the Elavil and gabapentin to the levels I am at now. So far, my pain levels have decreased since then but that has happened the last time I had an increase in my prescriptions for gabapentin and amitriptyline before my pain levels jumped back up again. Maybe that means that we're getting somewhere but I don't know. All I can say is that I am not enthused about the idea of any procedure being done whether it be LSB or SCS or anything else, so I hope that meds can help get me to at least a bearable level for a reasonable amount of time

From what I have heard so far, including scanning through older posts, it doesn't sound like the blocks give enough relief for long enough to make them worth while. I am still hopeful that someone might chime in and say otherwise. I realize that everyone is different, and if there is some sort of success story from it, I'm willing to at least try.