Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome: A whine.

[cali]

Aarggh.

When I shattered my left leg (spiral segmental fractures to the tibia and fibula) I developed RSD in quick order. It will be 3 years come September.

This week I had the first x-rays of the leg in a year. I knew I had traumatic arthritis in the ankle. It's now "moderately severe". The increased blood flow in the affected limb has resulted in demineralization of the bones of my foot, leaving me with a condition akin to osteoporosis in the foot. And then there's the problem with the Intramadullary Rod that runs through the center of my tibia.

I've worked hard to get to where I am now, and stupid as it seems, it's only been over the past few months that I've come to accept that I'm not going to get back to pre-accident levels of use with the leg. I am permanently disabled. I've made a lot of changes. My diet is pretty restricted- no dairy. No red meat, I've finally reached the no coffee place after cutting back a little at a time. I haven't been eating wheat, etc. I don't mind it. It still allows for plenty of variation. I exercise for 45 minutes+ 5 days a week. I meditate 5+ days a week.

On April 8th I was feeling so good physically, that I chucked my oxycodone. For about 10 days it was workable. And then the pain started spiraling. By the time I saw my doc on April 23, I was experiencing enough pain that I had my 'scrip refilled. But the problem with pain is once it starts spiraling, it's hard to calm it, so here I am with another "can't sleep because of the pain" night.

And I may have to have more surgery. Good thing I've been working on building upper body strength.

[LiberalLoner]

1. I'm so sorry you are going through all this, sounds like hell on earth.

You don't sound whiny at all. You sound brave and determined but reaching out to your fellow humans when you are feeling the strain.

Not many people understand chronic pain. They don't know how it makes every moment in life an epic struggle, how it removes all joy. How your only goal is to just keep breathing and put up a good front for everyone else.

I understand your struggle to accept the cold hard facts. I was diagnosed with MS 13 months ago, after suffering with it for 13 years or so.

Acceptance seems like a thing that comes and goes, at least for me. Some days I accept and other days I don't and rage against the dying of the light.

RSD involves the nerves, I think? So it is physical pain greatly amplified by the nerves?

I wonder if your doctors would consider prescribing neurontin, and if so, if it would be as helpful as it is with MS pain.

You can do this, you can get through this.

[cali]

2. Oh man, nothing like someone else's perspective to shed some light on your own situation

I can't imagine having MS undiagnosed for 13 years.

RSD is neuro-vascular. Both nerves and vascular system are involved. Neurontin has been tried along with sympathetic spinal blocks and lyrica and and and.

Oddly, this stuff hasn't sapped the joy from my life; just hobbled down to the bridge and took some pics of the raging April Lamoille river. so cool. And frankly, I don't put on a front at all- except for trying not to involuntarily make noises of pain when I'm around people who will say something like "are you ok?". I prefer for people just to ignore it and people who know me well, know to do so.

My goal is to ride a bicycle from St. Johnsbury VT to Ipswich MA this summer. I won't settle for just breathing!

I'm so sorry about your MS and hope things look up for you.

Thanks for your kind and thoughtful response.

[LiberalLoner]

3. What a beautiful, strong spirit you possess!

It made me smile to think of you enjoying the beauty of the river, and your goal (which you will achieve!) of a long bicycle journey!

I hope so much the doctors can free you from pain soon. They are coming up with new miracles all the time it seems like, please hang in there.

The MS has been an adventure so far. I figure it will continue to be an adventure.

[hedgehog]

4. Whine away - that's what we're here for!

Nothing's worse than not sleeping!

[cali]

5. How nice of you to say that!

One good thing about not sleeping is that I get a lot done- particularly writing.

[fadedrose]

6. Marijuana not an option?

I don't use it, wish I did, but my MD doesn't handle it and it's a lot of miles between me and one who does. You sound like somebody who would really benefit, since it won't do things with your mind that some drugs do. I don't think I could handle the cost either...have you looked into it?

One thing helping you is your desire to learn everything and alert others to the problems we have as a nation, with some advice as to how to cure them...

Healthy people are too busy with cars, wardrobes, investments, where to go on vacation with little thought about stuff that absorbs your time and energy.

Your disability has made you a formidable tool in cleaning up many of the messes we have...

I admire you.

[cali]

7. alas, I find getting stoned unpleasant as I've aged

though it sometimes does help with sleep.

thank you for your kind words. Recently though, I've been more involved with other matters and I foresee that going on. I'm writing a book and cooking a lot; taking lots of photos and planting seeds for a garden, etc.

I do like learning (so do you, I've noticed) but there are only so many hours in a day- even for those of us who don't do a lot of sleeping.

[browniedickens1]

8. CRPS11 arm/shoulder/neck after fusion surgery

HI Cali,
I'm so sorry that you hurt! I do understand the sleepless nights.
Had trigiminal neuralgia first so was already on high dose Neurontin which helped it.
This pain in shoulder/arm/hand etc. due to nerve damage just eats into your soul sometimes.
I'm also older so not very interested in feeling high. However, we my doc changed and move to FL
things are getting harder. Finding pharmacies etc to fill scripts.
Was on low dose of oxycodone, developed allergy to generic oxycodone 5 mg sold here.
Moved to morphine, and so far it's awful To get pain somewhat under control have to take too much morphine and still live my life.
What state to you live in, and is ability to get medication any better. I'm actually thinking of selling house here and moving back to GA or some better state to get medication help. This atitude of "grin and bear it". These folks don't understand this type or level of pain.
Last year this time I was giving piano lessons.
Sorry for self pity.

[cali]

9. hi brownie.

Recognition of your pain is not self-pity. (I really should take my own advice). I'm so sorry that you're having problems with medication. You can't just grin and bear CRPS pain.

I live in Vermont which is a state that is cracking down hard on opiate drug abuse, but I'm fortunate in that I have a primary doc who knows me well.

Almost 3 weeks ago my orthopedic surgeon gave me a shot of cortisone to the ankle joint and that has provided some real and substantial relief. I am also going to start seeing a chiropractor and commencing Hyperbaric Oxygen Therapy.

I can tell you that I have found things that help with the pain. Also, I am a member of an online CRPS support group and that too is helpful.

I wish you the best of luck finding some help.