[catra121]

Just wanted to pop in with a quick update from my appointment today for anyone that is curious.

The MRI results were mostly normal except for some straightening of the spine that apparently indicates I have tendinitis in my left shoulder area (which they already know). They did the skin punch biopsy...ummm...OUCH is all I have to say about that. The doctor upped the dose of the Lyrica from 75mg to 100mg and also gave me a script for Lidoderm Patches...really hoping those can help with the pain in my shoulder and at least give me some relief because so far nothing seems to be. I didn't see the same doctor as before...he was out of the office today and another guy was covering for him. I see my doctor again in 3-4 weeks to go over the skin punch biopsy results and what the treatment plan is going forward. So...not much progress but at least they're trying something. This doctor did mention possible ketamine infusions in the future...but said that of course is up to my doctor who is the expert on CRPS.

It's been a bit of a rough week for me...hoping things start to improve soon. I know if I can just hang in there I will get through all of this...but gosh it feels like it is just taking FOREVER....

[CRPSbe]

Hang in there!

[zinnia]

Thanks for the update ((((Catra)))) hope you feel better soon.
peace
zinnia

[catra121]

Thanks guys. My arm is KILLING me today...but I expected that. After thinking about it...I have to say that I still think the doctors are missing something. There are two things I have been dealing with since the fall. One is the shooting pains from my neck to shoulder down arm and into my fingers. The second (and this is the one that really prevents me from functioning) is a ripping/tearing pain in the back of my shoulder area (along the scapula) whenever I move my left arm. This is only made better by leaning back against something...this doesn't seem nerve related to me and it's not the burning or crushing pain of RSD.

It feels a lot like the shoulder strain I had a couple of years ago in my other shoulder...but worse...and it's not healing like the other did with rest. My boyfriend says it sounds like a muscle tear or like the muscle completely detached at some point and that's why it's not healing. He's no doctor of course...but he's had several similar injuries from his years in sports. But...they've never done any imagine or testing of THAT area...instead focusing on the rotator cuff and that area. I'm definitely going to discuss this with my doctor at the next appointment because yes...there is clearly some sort of nerve damage or impingement going on with the shooting pains and yes...I want that taken care of. But I also need this second issue addressed as it is the more pressing issue for me because that is what is affecting my function most of all. If the Lidoderm patches work on that area...then that would seem to add weight to my feelings that there is some sort of damage in that area that needs to be looked into.

I asked the doctor I saw this time about it and he kind of blew me off and said that tests wouldn't show anything...that it's just tendinitis. And maybe it is...but we're going on 10 MONTHS of this...so that's really not normal. I just want to know what we're going to DO about it...and how do we get me back to walking with my walker and back to normal activities?

Sigh...I'll get through this...just need to focus on the next steps. First...I need to get my new medications approved from work comp and see what sort of a change those make for me. Then...I need to make sure I go over all of this with my doctor when I see him in August.

[Littlepaw]

Dear Catra,

Ten months is a long time, it is no wonder you are frustrated. You are right, you WILL get through this. Your determination and grace inspire all of us and I know it will carry you through. Anyone would have some down days over this so don't give yourself a hard time for feeling exasperated.

I want to encourage you on your search for answers. You have lived with CRPS for some time and know well what that feels like. Keep honoring the wisdom that tells you something else is going on and keep acting accordingly.

It may take some creativity to get what you need. Different practitioners have different approaches. I have had some back/shoulder issues from time to time that have been pretty miserable and scary. This winter I spent a month with hideous pain in my mid-back, that like yours, only felt okay when I was leaned against something, completely flat or not holding up my body weight. I am not sure my PM or ortho could have even suggested much besides imaging. At one point the muscle swelling and spasm were causing nerve irritation that caused a weird buzzing sensation. I was at my wits end and feeling desperate but finally got relief with soft tissue work (no cracking) called Active Release Therapy done by my chiropractor which then allowed my back to adjust and stop spasming. After several sessions of that and some skilled myofascial release massage, I felt tons better and now it is gone.

This may not be your thing, I am just suggesting that there may be alternatives out there worth exploring that would broaden your treatment possibilities. I have also found Physiatrists (Physical Medicine and Rehabilitation doctors) to have a unique and helpful approach to injury. It might be worth exploring a consult with one of these whole body system specialists.

Keep at it. You know your body. I am sending hugs and healing thoughts your way.

[catra121]

Originally Posted by Littlepaw

Dear Catra,

Ten months is a long time, it is no wonder you are frustrated. You are right, you WILL get through this. Your determination and grace inspire all of us and I know it will carry you through. Anyone would have some down days over this so don't give yourself a hard time for feeling exasperated.

I want to encourage you on your search for answers. You have lived with CRPS for some time and know well what that feels like. Keep honoring the wisdom that tells you something else is going on and keep acting accordingly.

It may take some creativity to get what you need. Different practitioners have different approaches. I have had some back/shoulder issues from time to time that have been pretty miserable and scary. This winter I spent a month with hideous pain in my mid-back, that like yours, only felt okay when I was leaned against something, completely flat or not holding up my body weight. I am not sure my PM or ortho could have even suggested much besides imaging. At one point the muscle swelling and spasm were causing nerve irritation that caused a weird buzzing sensation. I was at my wits end and feeling desperate but finally got relief with soft tissue work (no cracking) called Active Release Therapy done by my chiropractor which then allowed my back to adjust and stop spasming. After several sessions of that and some skilled myofascial release massage, I felt tons better and now it is gone.

This may not be your thing, I am just suggesting that there may be alternatives out there worth exploring that would broaden your treatment possibilities. I have also found Physiatrists (Physical Medicine and Rehabilitation doctors) to have a unique and helpful approach to injury. It might be worth exploring a consult with one of these whole body system specialists.

Keep at it. You know your body. I am sending hugs and healing thoughts your way.

Thanks. One of the doctors I have seen is a PM&R doctor...though not a very good one IMHO. He worked out of the orthopedic office I went to for this back in December-February. He's the one who saw something that didn't look right on the ultrasound (the muscle wasn't moving the way it should)...but then when the MRI of my rotator cuff came back normal he was all, "Oh well then I guess it wasn't anything." OR...maybe it WAS something...just not something in my rotator cuff? What if the reason that muscle isn't moving right is because there's a torn muscle or tendon...I don't know...where the pain actually is??

I know I tend to be hard on doctors...I can't imagine how difficult it is for them to see patients who have RSD and also other issues. It's hard as a patient sometimes to describe and differentiate between different issues and pains...imagine how much harder that must be as a doctor who isn't FEELING that pain and is trying to sort it out on their end? Add to that for a doctor who is aware of RSD but doesn't specialize in it or keep up with the most current info on it?

Ah...well...all I can do is move forward and try to get the most out of my next appointment. I agree that many times it takes going outside the mainstream ideas and thinking outside of the box to get the relief we need. I found the best treatment for my RSD in the form of a PCP who just cared a whole awful lot. My current doctor may think she is unqualified to treat an RSD patient...but she's the only one who was able to help me after seeing one specialist after another for months. I know I'm in good hands with my current doctor...unfortunately I've only been able to see him once...2.5 months ago.

As always...aprreciate your kind thoughts and suggestions. I'll try out these new meds and the lidocaine patches and then move forward from there...