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!