Hi Jen
 

I was lucky, my doctors all three know what RSD is. I am being treated for it. Have to find those doctors who know what they are doing to relieve your pain. There is help for it if you just keep looking. Call offices, and interview by phone to see if they know anything about it. Also the local hospital may have referances for you to find approiate physician. I do wish you all the best. ginnie

New CRPS
 

Hi I am Danyiel, 34. I was stabbed in the lower arm in September 2011. All three nerves, both arteries and 8 tendons were completely transected. After months of agonizing pain I have finally been diagnosed with CRPS Type II. I'm a single full time working mother...trying to keep it together. At least now after reading all of the great info all of you have posted I do not feel totally insane anymore. Thanks:)

Hi Danyiel
 

I am so sorry an act of violence came into your life. The results with CRPS is horrible to have to endure. I have RSD in my foot and ankle so I do know some of what you are experiencing. You are not alone. People on NT do care alot. Keep strong, and know that people also pray for you. ginnie:hug::grouphug:

Thank you Ginnie:) Praying for others also:grouphug:

Danyiel, Welcome to the forum. Sorry to hear about your violent crime. You have come to the right place for help. Everyone is great here and we help each other pretty much on a daily basis.

Feel free to chirp in, rant, rave, or just ask questions.

:welcome_sign::welcome_sign:

Newly diagnosed, CRPS with severe dystonia/spasms
 

Hi all. I am 31, newly diagnosed with CRPS after a strain to my left achilles tendon while running. At the time it seemed minor, walked it off, but progressively became more painful as the day went on until I was no longer able to walk. I have always been very active and the injury stopped me in my tracks. For the fun of it, and because I have nothing better to do, I'll give you a detailed timeline of my situation.

The day after my injury I saw my PCM (hubby is Air Force) who immediately sent me by ambulance to the ER on another base (we live in Okinawa Japan which complicates things a bit) to check for a blood clot since my pain was "out of proportion to my injury"...sound familiar?? ha. Blot clot was negative so the ER told me stay off it and follow up with my PCM in a week. I was on crutches unable to bear weight at that point. Followed up and was given a boot to wear and X-rays taken which were normal. I wore a boot for 3 weeks, during which my foot swelled to epic proportions, turned all kinds of purple and red, and hurt like a you-know-what. Referred to ortho. It had been 4 weeks at this point. Leg had to be elevated AT ALL TIMES or pain was unbearable. BTW, the military does not like prescribing pain meds so I was on Ibuprofen 800 only.

Ortho said I was definitely not their problem and ordered a million blood tests and sent me to neurology. Luckily I was able to be seen the following day. Neurology said they aren't sure whats happening BUT they want to do a nerve conduction study the following week. Blood work is all normal. In the meantime, I suddenly developed severe muscle spasms and what I've now learned is dystonia. From toe to hip, my leg does whatever the hell it feels like all day long.
I come close to kicking myself in the face a hundred times a day. The pain is relentless. Seeing this, I was referred to Internal Medicine who (luckily once again) was able to see me the next day. Turns out, my file is flagged as priority---sometimes the military does things surprisingly efficiently.

IM says we don't know but prescribed Prednisone, Valium, and Neurontin.

When I went back to Neurology for the Nerve conduction study, the Head of Neuro was the one who saw me and refused to do the test knowing it would exacerbate my pain. He diagnosed me with CRPS on the spot.

7 weeks, 8 vials of blood and 9 doctors later, I had an answer to my problem.

Still not getting pain relief, hubby drug me to the ER where they gave me a mild narcotic and flexiril which did absolutely nothing, then sent me home.

2 days ago I had an MRI of my ankle. EXCRUCIATING because they basically locked my spasming leg into some sort of torture chamber for 20 minutes. MRI shows my achilles has healed nicely but that I've torn 2 ligaments in the front of my ankle because of the severity of spasms. No wonder they hurt so much!!

So yesterday I saw a new Internal Medicine doctor who was WONDERFUL. Prescribed Lyrica in place of neurontin, Elavil, Baclofen, Vicodin, told me to stay on the prednisone, exchanged ibuprofen for Mobic, Ambien for sleep issues and Prilosec to protect my stomach.

I now have a sympathetic nerve block scheduled for Aug 9, a followup with the doc on the 13th, a 2nd block scheduled for the 20th. And a TEAM of doctors--Pain Management, Neurology, Internal Medicine, and, when I can tolerate it, Physical Therapy.

Currently my swelling is 80% under control. My foot sweats like a beast, and is growing hair like something out of a horror movie. Baclofen isn't helping at this point but I was told it had to be slowly increased so I'm hoping that it will eventually. By far, the spasms and dystonia are my major concerns. I can't drive and my ankle is positioned oddly so I couldn't walk even if I were totally pain free. It's locked in place. My leg swings wildly all day everyday. The only time it stops is when I'm asleep. With two kids, this has been beyond devastating. I don't even make dinner anymore. After missing a day of neurontin as I switched to Lyrica I realized it has been working well to control the burning pain. I am able to tolerate touching it, but don't wear a sock and can't get a shoe on.

QUESTION: Does anyone have any experience with nerve blocks and dystonia or spasms? The doctors are unable to tell me what (if any) relief it will bring, and the literature I've found on it doesn't look promising. I feel very blessed to have been diagnosed so quickly and I know that's half the battle for a lot of people. I'd love to hear from anyone who has spasms or dystonia and how they've controlled it or are trying to.

Also--thank you to all the people who've told their stories. This gives me much hope!

Hi askcb
 

Welcome to Neuro Talk. Oh boy have you been through the grind mill. I do understand what you are going through. I do not have the full blown CRPS but do have RSD in the ankle and foot. I go to a physiasist. this helps the whole body. I have Volteren and another compound made from the pharmacy which has Ketamine/clonid/ gabap./imipr/mefen. These hurt to rub on but help. One required a full minute of rubbing it in. If I use too much I get a rash. However this helps along with all the other medications. My RSD came from injury too, torn ligaments, archilles, colapsed foot. Can't do surgery to correct it. Had to ganglion cysts removed which triggered the whole shebam. If you would ask your doctor about these two compounds, there may be a bit more help. I do also take a narcotic, and do my best to take as little as possible. I wish you all the best. sorry this happened to you. ginnie

Hello! I have CRPS in my leg/foot and also have some spasms, mine aren't nearly as bad as yours sound but I figured I'd give you some insight to the nerve blocks as we are somewhat close in age. I've been having lumbar sympathetic blocks done for the past several months on a monthly basis (minus one month as I didn't respond to one month's injections, I just found out the other day it was possible he missed as it's such a small area to get at). I get about 10-15% worth of relief from them. To me, that's a lot. The amount of relief varies from person to person however. What works for me, may not work for you. I get the blocks done every 3-4 weeks. Sometimes I get 2-3 weeks of relief, sometimes I only get 1 week of relief. There is some back pain from them and I do feel wiped out for about 24-48 hours after my injections. I sleep and sleep during that time, I find it's just better for me to do that. They sound worse than they are. It doesn't really hurt (if you can stand a nice deep IM injection or IV, it's a piece of cake) during the injections except I tend to get a little pressure in the pelvic region that by the time I gasp or move my head cuz it kinda hurts, it's going away and gone.

In terms of my spasms...there's nothing that stops mine...at random, I kick out or my leg goes flying into the air. Extremely painful. I've been on a variety of different muscle relaxers but nothing works for me. I can go a day or two without a twitch during my "alert" hours but I've been told when I sleep, my leg goes nuts nightly. Don't give up hope though. We are all different in what works and what doesn't work.

I wish you the best of luck in your treatments. It's not easy to have this disease but that's why there are groups like this. I've found a few support groups that without them, I doubt I'd be here today. I've been through hell and back so many times, I wonder where the strength comes from. Not just because of the disease either.

Thank you thank you for the response! I've got a good tolerance for pain so I'm really not concerned about the actual nerve block procedure, but definitely good info to know. I'm disappointed to hear that it hasn't helped with spasming although I guess I'm not surprised based on what I've read. Crossing my fingers and all of my (right, lol) toes that my results are more promising. I'm just a couple of months in and already am amazed that people are able to bear the pain for this long--by days end (usually 7pm) I'm wiped out and can't take it any more. You folks are strong!! Reading about your struggles gives me strength as well and I can't tell you how happy I am to have found such a great resource in this forum.

Best to all of you. :):hug:

Welcome to the forum. It sounds like you got to see all the dr's. in a very short time. I am glad to hear your IM gave you medications in the end, including something for your stomach.

For some reason, these dr.'s don't seem to think that all these medications tear your stomach up.

I have had lots of blocks. They give you a little anesthisia, but your awake, give you a needle in the back. If it is rsd your foot and leg may immediately to a few minutes, feel and turn bright red.

I have found I got my best results when they did them one week apart. Good luck and feel free to post.