Hello,

I was diagnosed with CRPS of the right upper extremity following surgery to remove an extra first rib, it was compressing the nerves going into my arm. Ever since I have extreme sensitivity to touch, near constant burning/tingling, numbness, and crushing pain from my neck to my fingertips. I also have arthritis in my right shoulder and Carpal Tunnel (I had to Google Carpal Tunnel. Recently I was discharged from the Army for the CRPS and have since transitioned to the VA, let's just say the rumors about how bad it is are true. 😡 My PCM said she could not fill my Lyrica prescription because the VA Doesn't carry it (lie) I went to urgent care and got it through the mail order pharmacy. However, I'm almost out and she still refuses to refill the prescription or do anything else... She had the nerve to tell me that the VA has no pain management system! I'm in the middle of a severe flare up right now, it's been about 2 weeks. It's getting to the point where I can feel the burning down my back and up the side of my face into my scalp. It's awful. I just don't know what to do right now. I'm considering going to the urgent care or even the ER but I'm afraid they're just going to look at me like I'm stupid and just trying to get pills , definitely not the case.... Anyone have any advice on what might help or what to say to help the doctors understand and help me??

Thank you in advance for any advice.

I've never gone to the ER for CRPS pain. Are you taking any pain killers? They are not super effective, but for some can help when things get to this level (Vicodin/Percocet, etc.) so if you are not already on them, the ER could give you them.

Good luck.

I am not familiar with how the system works for you so I don't know what your options are for seeing a different dr...clearly things cannot continue as they are. You need to be seeing a specialist...either pain management or neurologist...but someone who has the ability and knowledge to treat you.

As for the ER...I have gone a couple times when the pain was severe. They have always been nice to me and helped me...but I know others have had bad experiences. Bottom line is you need treatment and if the pain is severe enough that you want to go to the ER then go. Don't worry about what they think and let them tell you what they can do for you...don't just go in demanding pills or anything like that (don't think you would...but when we're in pain sometimes we're not thinking clearly).

Long term and big picture though you need to get regular, competent care. You need to figure out who can help you find that solution as I am not familiar with the VA system and what that entails in terms of seeing a specialist. First step is to find someone who can help you navigate that system so you can get the care you need. Then do what needs to be done. One step at a time.

I know this sounds impossible...but try to not stress about the stuff out of your control. Break things down into one step at a time to get the end result you need. Stress makes the CRPS pain worse...if you can calm down and think clearly...then make a plan. First...get some relief now (at ER or urgent care if you have to). Then figure out what you need to do to get to a specialist...and then go from there. It probably won't be a quick process but you'll need to be calm and patient as you go through it so the pain doesn't get out of control.

If you need ideas for what everyone does at home to help with the pain...let us know. I have learned a lot of tricks and tips here that help me manage my CRPS without meds for several years. It's not easy...but it is possible...and maybe even a few ideas will help you get through this time as you work to get to a specialist who knows what they are doing and how to treat this condition (and can prescribe the proper meds).

Take care and keep us posted on how you are doing.

You might also find answers on our TOS forum.
http://www.neurotalk.org/forum24/

How long ago was your surgery?
Was it done by a skilled TOS surgeon?
NTOS (nerve tos ) is a tricky one to recover from surgery as the nerves can become even more irritated & angry.

If VA does not have pain management they should refer you out to a provider of that...

My surgery was in September 2013. Since then everything is 10 times worse than it ever was prior to the surgery. I've decided not to go to the ER or urgent care today, I'm still in bed and have no plans to get out. At this time I am only on Lytica for pain, my old PM Dr. used to prescribe painkillers but I had to stop seeing him when l got out of the military. Prior to getting out I had numerous nerve blocks, injections etc. with no success. There was talk about the SCS but I opted not to do that for fear of making things worse. I just don't know what to do at this point. I thought the medical care we got while on active duty was bad but it was fantastic compared to the VA.

Lyrica didn't work for me, I use Gabapentin it works a lot better. I don't know if you have tried it or not, but if you haven't you should. And it's cheaper than Lyrica, so the VA should be happy.
You need more than just the Lyrica.

hi k. i'm sorry you have been suffering so much with rsd. i have had rsd for over five years and have found that gabapentin and pain meds help me manage my rsd pain a little better. i also take advil and antianxiety and antidpressants in order to deal the the long term constant pain that rsd has brought me. i see a pm dr and psychiatrist on a regular basis to help manage my rsd pain and rsd depression. if i were you i would look for a pm dr experienced in treating rsd so that you can manage your pain better. in the meantime you may want to try little things like warm epsom salt baths, heating pads, and lightweight clothing to help you cope a little better until you find a pm dr to help you. as for ers, i've been a few times and didn't really have much luck but everyone is different. i am not a dr but if i were you and the pain gots overwhelmingly bad then i would go to the er until i found a pm dr. i hope you start to find some pain relief soon. soft hugs.