Does It Ever Stop?

[LOEYRN]

I have been Dx'd with RSD after 4 surgeries after severely breaking my ankle January 24th 2008.

My question is, does the pain of RSD ever stop? I am stunned by the 24/7 constant pain. The pain center I am going to has me on pain medicine, and Keppra....I am not seeing a huge difference. I am a RN and used to helping to relieve peoples pain - I am so disappointed that my own can't seem to be relieved.

I have had a ton of SNB's...PT, and now they are talking about SCS. I don't like the feeling of a TENS unit - the vibrating sensation about drives me nuts.

Has anyone any words of encouragement here? Does it ever stop?

Loey

[RSDgirl35]

Loey,
I wish I could give you more encouragement than what I'm about to say! RSD does have the possibility of remission. Mine went into a semi-remission for 3 years. The earlier it is diagnosed the more chance there is of remission. After 5 years of having it though, there is less than 1% chance of it going into remission. Hopefully it will for you, but if it doesn't there are meds you can take to help. Usually, however, they only make it so that you aren't screaming and are able to do basic things such as make yourself a meal.
Good Luck! We all need it!
Jessica

[helloariel]

Hi,

I am so sorry to hear about your ongoing pain, I have been there and can wholeheartedly sympathize. I was dx'd with RSD in 2003 after a minor ankle sprain during a really stressful divorce. Doc thought maybe I had an un-noticed fracture when it wasn't getting better until PT did sonogram therapy and within hours my ankle had swollen hugely and gotten all hot and crazy CRAZY pain so I wanted to chew my leg off at the knee... that's when I was sent to an orthopedist who immediately dx'd RSD. I frequented this group a lot back then, and found it very helpful. I happened to come back to the BrainTalk community today looking for information about brain cancer, and thought I'd drop by this group and say Hi! when I saw your message.

I'm here to tell you that it is possible to recover (go into remission? maybe... only time will tell) from RSD. It took about 8-9 months of medication (elavil was good, that anti-seisure medication whose name I forget was AWFUL), lidocaine shots by the spine, lots of physicial therapy (I hated TENS, personally, it made mine worse), swimming, accupuncture, and 2+ hours everyday of yoga & meditation, positive visualization, and chi nei tsang therapy (I actually credit this more than anything else with catapulting me into recovery - you can check it out here: http://www.chineitsang.com/cnti/Welcome.html) before my pain went signifigantly away.

Once I started the accupuncture, yoga and chi nei tsang, I realized that the lidocaine shots actually caused worse rebound pain than not having them in the first place, so I stopped doing them, then weaned myself off all the crappy medication before I really started feeling normal and good again. It was huge and important to me to really believe and embrace the idea that my ankle was OK, that the insanely awful pain was a mistaken message from my confused nervous system, and use it, use it, use it - literally "walk through the pain" into wellness. Trusting my body to be able to heal, and visualizing health and wholeness was a daily meditation for me which I believe really helped (continues to help!)

For the last 5 or so years, RSD has been nothing more than a minor irritant that flares up in certain circumstances. Things that I know can still kick it off: driving in cars that vibrate (my old VW Golf, bad; my new Audi, awesome - I can now drive anywhere without flaring!), excessive stress (esp. combined with not getting adequate sleep), not exercising regularly (desk job makes that difficult, but I try to remember to stand up and move around whenever I'm on the phone, etc), and getting sick (like flu or colds) all by them selves or in combination will start my ankle feeling "weird" and if I don't pay attention and work to avert it, will turn into pain & inflamation in no time. It no longer panics me when it starts to ache again, because I know if I take good care of myself, breathe a lot, do yoga everyday again (I get lazy when things are good!) that in a few days or a week the pain and tingling will receed again.

I know the stats are not good for people dx'd with RSD (my doctor calls me her "RSD poster child!" LOL) but I promise you it's not impossible to recover.

Peace,
Ariel