The puffiness might be clogged lymph nodes, they aren't draining normally.
Check out some videos on you tube , or ask PT about it , if they know how to drain lymph nodes.
https://www.google.com/search?q=drai...+nodes&tbm=vid

Here's a good one for neck/chest Lymph Drainage (the image is distorted @ some points)
https://www.youtube.com/watch?v=U7fVE7x35xU

Dacello,

I can't answer why you might have the swelling. There are so many possible contributors, lymph, blocked circulation, there is even such a thing as neurogenic edema...I know it can make things so uncomfortable.

Some people find relief from swelling with epsom salt soaks or epsom salt lotion. I understand not wanting to use ice, it can aggravate nerves and cause muscles to contract but you might do okay with cool packs. I put gel packs in the fridge (not freezer) and use those when I have swelling. I have also had good response from getting in a pool and just swishing around. Foot surgery and CRPS both cause swelling so this has been an ongoing thing for me and the pool has been an absolute godsend. You may also be able to do more in there comfortably. If you can get into a salt water pool you might get added benefit from that too.

Vit C 500mg daily might not be a bad idea right now to help reduce inflammation from free radicals. Those can get out of hand in inflamed soft tissue.

As much pain and motor difficulty as you are having I would lean towards getting a second opinion as soon as you can while still seeing a doctor you are interested in. Let the office staff know exactly how much trouble you're having. When I had my nerve injury I developed a lot of atrophy and once I let staff know about it I was worked in pretty quickly (less than 2 weeks) to two different super-specialists for peripheral nerve that were hard to book with. Sometimes it takes a treatment coordinator to do this instead of the regular scheduler - just ask about urgent work-in.

How does one distinguish between CRPS and TOS?

You know I have wondered about that as there are things you mention that do seem to encompass both. CRPS can be caused by trauma, a pain contributor or in some cases arise spontaneously. It makes sense to me that it would be possible to have both, as pain from TOS could set off a cascade of nerve issues.

The caveat here is that CRPS is a clinical diagnosis given after everything else has been ruled out and no other reason for the pain is found. It is a diagnosis of exclusion which is why adequate workup is so important. Nerve entrapment is a big mimicker of CRPS and I imagine that TOS could be too. The most important thing you can do is make sure there isn't a mechanical issue that needs to be addressed. CRPS outcomes can improve greatly when the cause is removed.

Some people with CRPS choose to have sympathetic blocks done to see if their pain is sympathetically mediated but there are risks and these are not as popular as they used to be. Neuroleptic pain meds like gabapentin and nortriptyline along with gentle PT are frontline treatments. Oral steroids are also helpful in early stages. That may be an option for you to address some of the inflammation as there is precedent for using them with nerve inflammation ie: optical neuritis, etc. I took two rounds of prednisone 10 mg 3xdaily for 2 weeks early on for CRPS symptoms and it did help scale things back.

I think you are on the right path and while it is certainly worth raising the issue with pain management or a neurologist you should still pursue possible causes for your symptoms and treat accordingly. In the meantime keep taking good care of your self and see if a med option (sometimes it take a few tries on this) will get you more comfortable so you can more easily move forward.

Have you had your shoulders and posture assessed?
Reason your scalenes could be tight is because if you have forward head posture, of any sort, the scalenes automatically become super tight.

Hi Akash,

I have indeed has this problem, but have been fixing it. I think I have too much lumbar curvature which makes my ribs flare. However, I barely can do any exercise to fix anything. It flares me up. Simple shoulders back does it. My pt says it's not that bad either... Maybe she is wrong. I stopped trusting too much. Finally - I've been on the floor for about a month trying to relax them...

Can you try something passive like PEMF therapy that acts for pain relief? I have used it in the past and found it useful as an adjunct to reduce inflammation. I really don't mean to pry but am in the same boat here and do wish there is something out there to help. You are absolutely right a highly arched lower back will contribute to your issue. IMHO, its a common sign of TOS'ers, I have the same issue. I believe its due to tight lats and a rotated pelvis.

Then one more little question Littlepaw, because I haven't found this anywhere. Are CRPS symptoms positional? In other words, does the pain subside when you lie down or change positions? Does the color of the limb change depending if it's hanging down or at heart level? Do you feel almost no pain when you wake up? Or is it always there?

Hi Dacello,

CRPS symptoms can definitely be worse when the limb is in a dependent position. Some people will have pain all the time and discoloration all the time. Others though, self included, have pain when the limb is down and discoloration when the limb is down. My own foot looks just beautiful in the morning and usually feels pretty good. End of day is typically the worst for me. If I kept it up all the time it probably wouldn't complain at all.

Keep in mind it is normal for even healthy limbs (feet/hands) to go a bit dusky in dependent position and then normalize with position change or movement. Both my feet did this before I had any problems but now the left one is worse and has to be elevated to fully resolve.