I am a new member today, and I originally posted this on the main page of NeuroTalk. A member suggested I check out this thread, so I am re-posting in here. Trying to figure out how to move around in here. Thanks! =)

Hello everyone,
Well here I am with my ongoing saga of CRPS.
I had a work injury 12/10/15 and now have CRPS in my right arm.
I call my arm New York, because she is the city that never sleeps.
She does what she wants, when she wants.
The temp of my arm is say, Alaska middle of winter...... It's always freezing cold and even the heating pad doesn't seem to help. And, I am like a piece of art work since the color change in my hand is like a mood ring.... Flesh, to pink, to purple, to freaky finger tips, to blue, to normal....
I have been seeing the work comp NP, and she has given me prednisone, which didn't help, a cortisone shot, no help, Flexeral and Ativan, they help with the spasm and sometimes I can sleep. I tried Gabapentin and tramadol and had HORRIBLE side effects. I am also a gastric bypass patients 4 years now, and I cannot even tolerate alcohol, so I think the meds are the same issue for me.
Because this is work comp, I am still fighting to see a neurologist. This has been horrible. I am lucky for the fact that each clinician I have seen have all said CRPS. But, work comp insurance company doesn't want to help with anything.
I am now in my second round of physical therapy, but I feel like an idiot. Every time she begins to work on my hand, I have tears fall down my face. The hypersensitivity is crazy and I feel like it is worse when I am at PT. They have me working in the pool, but it makes my arm feel like it weighs 50lbs and I become dizzy, feel like I might get sick and black out.
Does this happen to anyone else?? Does anyone else find the CRPS gets worse when someone is trying to help, like PT?
I am hoping this can get better and I am hoping I can see a neuro soon, especially since none of the meds they are giving me work.

I know this could be worse, so I am trying to remain as positive as I can.
Thanks for letting me rant, I am happy I found this web site because no one in my personal life can understand what this is like.

In the past , stellate ganglion blocks were suggested for the first line of defense, to hopefully shut down the symptoms.. Not sure if that is still the current suggested treatment.

You can do a search here for past posts , while waiting for members replies..
http://neurotalk.psychcentral.com/search.php
use - stellate ganglion blocks - as the search words

Hello and welcome to this part of NT!

I know that you are still fighting with workers compensation to try to get in to see the right specialists, but the sooner you get the correct treatment, the better the chances of putting this into remission.

I am glad to see that you are going through PT. That is always the best treatment. Try not to over due it. Take it at a pace that you feel like you are gaining but not causing flares.

If you are interested in learning some of the treatments that are currently being used, try watching Dr. Chopras video on youtube if you have a chance.
https://www.youtube.com/watch?v=s3LK...ndex=4&list=WL
It is almost 2 hours long, but is very informative on what is currently being used and what to avoid. Knowing some of these treatments has helped me find out which of my doctors are staying up to date on treatments, and which are sticking with treatments that are out of date and are more likely to cause more problems. Everybody responds differently to different treatments though. This is one of the problems with CRPS. If it works for one person, it may make things worse for another, if it does nothing for one, it may be the right approach for another.

Please, feel free to rant away. We are here to listen and help each other through all of our troubles that CRPS brings.

Seaglass,

Pease watch the Chopra videos recommended by Purplefoot ASAP.

Try to get on Low Dose Naltrexone. PT was agonizing for me until I took LDN. And then after taking LDN when I got to exercise in a warm pool the improvement was substantial.

The most effective heating pad has been a jade disc infared mat my sister loans me. I need the extra large size to cover the area from my back to my toes, but you might only need a smaller one. A bit pricey, but it works.

Very little medication helped me. Neurotin helped with electric shocks and spasms, but it gave me brain fog. Anti-inflammatories damaged my stomach, even at low dosages.

I found memory foam to be the very best at creating warmth, everything else is like using an insulating cooler to keep my CRPS limb ice cold.

Let me know if you have a problem with swelling.

Hi Seaglass,

Keeping your positive attitude is a big help on so many levels. And there is reason to hold onto hope, 80% of people with CRPS improve over time according to Cleveland Clinic's Dr. Michael Stanton-Hicks who does a lot of the CRPS research.

It is important to hang onto your recovery and continued care as well, like a bulldog sometimes. Identifying and treating any underlying pain contributors can make a huge difference in your outcome. Please push for any workup that you need such as Nerve Conduction Study or imaging.

I hope that you are able to get what you need soon. Keep doing the things you are able to without flare and take exceptional care of yourself. It is hard in the beginning but there is life after CRPS and treatments that help. It does take some time to find the ones that work for YOU. So keep hanging in there and come back to let us know how you're doing.

Sending healing thoughts,

hi seaglass. sorry you have rsd. i've had it for over five years now and i learned that it takes some trial and error before finding the right procedures and meds to take to help manage my rsd pain. and remember to let your pt know that ice is bad for rsd. it can further damage the nerves. it happened to me because my pt didn't know that and neither did i at the time. now i know and don't want anyone else to suffer further nerve damage like i did. just try taking it a day at a time and know you are not alone. you found a great support group here at NT. i'm sending soft hugs your way.

WOW! Thank you all for support and great advice.
I have to say I am lucky, because for this round of PT, I actually had a therapist that has experience with CRPS patients. I am moving my arm better, but I still can't figure out why the flare up happens and when it will happen. This morning for example, my hand has been fine, then 2 hours after I woke up, it just began with the pins and needles, color and temp change. I wasn't doing anything at the time, just sitting down watching the morning news.
It's strange because sometimes I feel like it is fine, then BOOM, a flare up that will last for hours on end. Has this happened with a lot of you??

CRPS seems to have a mind of its own sometimes. There are things that we all do that we try to avoid that we know will cause flares. For some of us, those flares can last for days, weeks, months. Some of those things are simple, such as what we eat. We like to indulge in those things from time to time, but we usually end up paying for it. There are times that it just shows up for no reason at all, and seems like it never wants to leave. And of course, pushing too hard, even not pushing hard enough can cause flares. You have to find an equal balance.

I too am a fellow right arm/ hand crps member, the best thing to do is to desensitized, at least the best u can. I still need soft soft clothing over my arm, I've also found when real bad shocks happen lidocaine 5% gel works awesome but it's greasy so we cover it with soft gauze rolls which I found really cheap on Amazon.com, I also have a bio brace that goes the entire length of arm that has super soft fleece inside, it was recommended from orthopedic guy who makes my inserts for my shoes. I lived in a sling for over 6 months, and they originally thought tendonitis so I was also in a brace which made mine worse. Another good thing we use is baclofen not flexeril. Flexeril wasn't working good and left me Ina fog with light headedness. It did however sleep better with it but I slept too much. Warm showers work good as long as you can attach a different adjustable shower head, on bad days a light mist, try working on desensitized get in shower with the adjustments. Always use arm as much as you can without pain, I can now almost 5 years later lift 3lbs on a good day without using rest of body for support! I once held my grand daughter against my body when she was 10lbs.good luck it sucks I know. Msg me anytime. Check the spoon theory it's a good read too.

So I have to ask, and forgive the question if it seems rude. Are you or any of you able to work??? I have no idea how long I will be out on work comp and somedays I feel like I might not have a job again. Last night I was at my sisters house, for dinner and friends that came in for a visit. My hand and arm were so cold, I was sitting on the couch with a soft blanket over my arm. It lasted about 3 hours, and worse... My sister had to cut my chicken for my, I couldn't do it.