Newly Diagnosed & Overwhelmed
 

Good evening all,

I had originally thought I would avoid all forums as the topics can be quite depressing-yet I understand it is a good outlet & can offer great insight and support. So here goes:

I've just been diagnosed 2 months ago (after 4 yrs of pain) & just now having major flare up as I think nerve block has stopped working. I have been referred to get another however I must travel to the states and no one is willing to do it over the Christmas week bc I will be a new patient. Does anyone know if I go into an ER if I can get the sympathetic nerve block done at Hospital? I have insurance, I just can't afford to make another trip to the states. I was diagnosed in Boston and will be going to Virginia for the holidays. I currently live in the Caribbean and do not trust ANYONE down here to do this injection.

Thanks for any advice on getting this done. It would be my Christmas miracle!

hi Inpire. i'm sorry you have rsd and hope that the NB start to help. rsdhope.org and rsdsa.org may have some places listed that provide NB. I don't know if the ER would do it, but it couldn't hurt to ask. i would print out some info on rsd/crps to bring to them so they know what it is. i hope that you can find someone to help you. take care.

Docs in pain clinics can often schedule you within a few days after your first appointment if they perform the blocks in house. (You might need a referral from your doc at home, along with a prescription for the block.) If you go with a doc that uses a surgery center, it might be a bit more difficult scheduling quickly. There is also the issue of getting confirmation that the procedure is approved by your insurance--if billings is not in the US, that might be tricky to get done as fast as you need. I would NOT recommend an ER--those docs would not perform them regularly enough to do the best job. If you could get into a teaching hospital and have a spine surgeon perform the block, you'll probably get a good result (if you're still capable of getting a positive reaction.) A former doc of mine was a spine surgeon earlier in his career and his stellate ganglion blocks were vastly superior to others I had undergone.

I don't think the ER will do it...it's not an emergency type of procedure and I agree with LitLove that even if they did it wouldn't be people with a lot of experience and therefore not a great result is likely.

I would say keep trying. It's a difficult timeframe with the holiday...but if you can get in somewhere early in the week and they do the blocks in house then they may be able to get you in before you leave for the block. No guarantee...but that is likely your best option.

Good luck...I'll keep praying for your Christmas miracle. Hugs.

I'm hoping someone can see me. These pain clinics are like a fortress to get into! I understand that there has to a system but I've been turned down by every clinic I have called in Virginia. Either they are closed, they need yrs of records,they have no openings or they don't accept out of state referrals. I already hate being a patient. But being an CRPS patient is worse. There is no visible problem(thank goodness I'm in the early stages) but this doesn't mean I am not in significant pain. I almost feel I'd get more respect if I had a cast on my leg. The most frustrating part is I am a therapist in private practice by career and I'm now treated as if I have a mental illness instead of a physical condition. When will people treat this differently than conversion disorder???

Welcome Inspiretoday. :Tip-Hat:

Have you made it clear you're not looking for opiates and want a block? That might make a difference. They make more money on surgical procedures and have less risk to their license. If you were coming to California I know a few docs that would take you, so someone in VA should as well.

Inspiretoday, Sorry about your CRPS diagnosis, sorrier still that Pain Clinics are being a pain. First off, Do Not go to ER.. they're worthless, even if they know about CRPS and more than likely they don't. Anyway they won't do a nerve block since the procedure is not for life saving, best you'd get would be to be admitted and given less pain medication than you'd need. Once they had you in the hospital draining your medical coverage's money, you'd still have to wait to see whoever either was on staff or had rights at the hospital and knew CRPS. Your best bet if you can get them sent to you is to give the pain clinics those piles of records they're asking for. You should also be sure to tell them that though you live in the Caribbean you are looking for a Clinic for treatment of your CRPS on a "regular" basis. It helps if they can see more money coming in down the road.
Best advice I can give you is pretty much CRPS survival.. Going to Virginia is a good move but make sure to stay WARM! Cold is a big Bad thing for CRPS.. So second if your Dr. hasn't warned you, never treat swelling with ice... CRPS creates the swelling but it also causes problems in your body draining fluid from the swelling so ice won't help and it can cause even more nerve damage.
Next step you didn't say where your CRPS was though I'm going to guess it's a foot from your cast on leg comment. Whether foot or arm get epsom salts and take over the bathroom. CRPS responds to warm to hot epsom salt soaks.. it's not a long term cure but it will help.
Remember most of the therapy techniques you learned don't apply to CRPS, let the pain be your guide and never try and push past the pain doing therapy with CRPS that will just make it mad.
Appology for the Pain Clinics, the FDA and DEA have every Dr. that prescribes Opiates in the US scared half to death. As was already said stress to a clinic the amount of relief you received from your last block and that your main objective is getting another.
When will CRPS get treated as obvious and "normal" conditions are? Probably a year or two after they discover a 100% effective test for the condition and six months after they find a cure.
Last tips I can offer, whenever you can, raise whatever part has the CRPS above heart level; Bare your skin.. if it's in your foot wear loose fitting sandals, no socks! if in the hand/arm short or no sleeves; Friends can look but no touching! Sometimes I can't even touch my own hands CRPS can get hypersensitive.

Good Luck with your search, Merry Christmas and a low pain New Year!

The OP should try swimming in the ocean, considering where he lives, if he hasn't already. Not everyone reacts the same way, but I'm almost pain free swimming in the ocean when it's warm and calm.

Thank you all for your help. I really should make it clear that I'm not wanting any prescription for opiates! Can't take them unless I really am in pain. I will steer away from the ER and try to see someone who can at least refer for the nerve block.
And yes by the way the ocean does help! Warm salt water, zero gravity! It's perfect- accept for the sand! Ouch! I try to use it to desensitize. Thanks for advice for footwear! It is in both feet and just this week I've worn socks 24/7 bc everything hurts even me touching them.
This damn CRPS is a full time job!! I don't have time to do all this stuff in between working 13 hrs a day!
Thanks again and happy, pain free holidays!