Help!!!
 

Help! I have bilateral CRPS type 2 in my arms from botched rib resections w/scalenectomys. I have it for 8 years now and it had finally "settled down" that I only dealt with bad pain from it unless I flared. I deal with both the burning and coldness. 8 weeks ago I chose to have surgery on my worst side for my scapula because I had serrates antior palsy, so it caused my scap to not function well and it winging out bad and it was no longer in the correct spot causing it to rub down on muscles and tendons and causing a great deal of pain. I knew the risk of it potentially spreading. I was stuck in an immobilizer for 6 weeks with no use of my arm at all and even now out of the brace im not aloud to move my arm in or out and im on a strict restrictions, cant lift anything under a pound and can only work towards lifting my arm to 90 degrease. Ive been in PT since the 8th and thankfully my PT went and took classes on CRPS and learned more about it before I started so that way she was fully prepared so we could hopefully have successful surgery.

It was a major surgery I had done, he had to make 2 incisions, 1 on my bicep close to my shoulder and more towards my axilla to remove half my pec major and another back at my scapula where he drilled 2 holes to attach my pec major. For the first 3 weeks post op I could tell I was in a CRPS flare because of I could see the goose bumps and the color changes, I just couldn't feel it because of the post op pain. Well it had went away until about 2 weeks ago I could tell I was on the verge of starting one and by last Wednesday I went into a full blown CRPS flare with the flaming hot burning (atleast that's what we are hoping). It is so bad right now that when my PT just touches my arm I go into severe spasm, yesterday I switched to being very cold and in 90 degree weather it felt like I was in 30 degree weather and so she couldn't do what my ortho protocol is and she tried to work on just getting my circulation moving again and trying to calm down the flare (it didn't work). Because my CRPS has now spread from surgery its now affecting my original CRPS areas and causing it to stay in a super bad flare. At this time I don't know if this is my new baseline or not.

Because of ive delt with CRPS and complications of my 2 previous surgeries for the last 8yrs im already on 75mcg of fent, oxy, soma and other meds. I told my PT I thought about going to see a Dr near me that treats CRPS patients with ketamine to see if I can try and get some relief. However she is worried how the ketamine will affect all my other issues and basically has asked me to hold off a year to see where my new baseline is and how much progress I have made with this surgery. I cannot stop PT at all because the tendon will stop working and the surgery would have been a waste and I didn't go threw all this for nothing. Is there any suggestions anybody has to help with the pain? I remember what it was like for the first 3-4yrs dealing with this horrific pain but at the time nobody had diagnosed me yet with CRPS until I went threw my symptoms with my neuro. I also wasn't on the the heavier and high dosage of meds yet, so right now I feel like im out of options. I was thankful the CRPS had finally "settled down" to just bad pain unless I flared, which for the most part I was able to avoid as long as I was careful and avoided PT. The pain has been so bad it has caused a big increase in my seizures as I have epilepsy. Anybody have any suggestions? If this is my new normal ill have to find a way to live with just as I have been doing over the past 8yrs. This is also a warning for anybody who is considering surgery, be prepared that it could and most likely will get worse. I don't regret having my surgery done because we have high hopes that I will end up being able to have a full functioning arm within time. We know this surgery is hard on a normal person, let alone a person like me who has multiple issues and its a rare surgery to begin with. My pcp manages my meds, is there anything I go to her and ask her to try? Thank you!

Hi,

I am so, so sorry to hear what you are going through. You must be so exhausted and scared. :(

While it sounds like your PT has your interests at heart being concerned about ketamine and your other issues, they are a PT not an MD. I would let the doctor make that call with your input. There is no point in having your pain out of control for a year and developing that much pain memory. Perhaps it is possible to alter what your baseline is going to be. A post-op flare is a flare, not baseline.

Obviously, I don't know what specific complications PT is concerned about but doseage may have a lot to with it. Some protocol are fairly intensive, the ketamine infusions I am receiving are not, only every two weeks and a sub anasthetic dose for an hour. We are building the dose slowly to therapeutic range to ensure I tolerate everything fine. A stellate block might be an option as might a round of oral steroids. Some people get lidocaine infusions. Go see the pain specialist and broaden your options. It never hurts to get information. There may be something yet that could alter the course you are on.

Sending healing love, :hug:

Hi tos,
I am sorry for your fight. I'm at a lose as far as what meds to suggest.
But after reading your post I had to chime in my sorry...:hug:

Im just exhausted. Being 25 and dealing with this since I was 17 it just makes me wonder what my future is going to be like.

Because of the way the tendon needs to graft I can see why my PT is hesitant for me to try the ketamine right now. I just don't know what else to do.

You can always just go see the doc, find out what the options are that won't interfere with your tendon healing properly and go from there. That way if you decide you want to go ahead with a treatment you have someone on board with you. I have not heard of a contraindication between ketamine and soft tissue healing/remodeling. That is something I should look at. Again there are multiple protocols. I am only treated for an hour, no restrictions after except no driving for 24 hours. I am allowed full range of motion.

There should also be several options besides ketamine available that wouldn't cause a problem with your surgery or PT. Being more comfortable may actually help the overall situation and allow you to rehab even better.

Hang in there! :hug: