Weird, Painful and Worrisome… can you relate to this?
 

I must give a bit of history first to get to my question. Please bear with me.

I woke up from a discectomy (ruptured disc L5 S1) surgery with RSD / CRPS in December 2004. I woke screaming with pain my foot/toes/ankle/calf. The doc said he nicked my dura and over stretched the nerve root. “As soon as the nerve settles down this will go away”. I'm still waiting.

Neurontin, Soma, and Percocet eventually (many months later) did make it where I could tolerate water from the shower hitting my foot , my ankle not so shattered feeling, etc. (God I miss pretty shoes) Nearly a year later I am told “we think you have RSD”.

Anyway, here’s the point. Over the last year the RSD is getting much worse and spreading … significantly, rapidly. I have all that goes with it, burning, charlie horsing, lightning jolts, sweating, cold foot, spams, tremors, bone aches…blah blah blah. For many months in this timeframe it was toying with the idea of moving to my other foot (the good one), and in recent months it certainly has. It is becoming more profound in that foot/leg. Even more recently and to my horror, it is starting to move into my hands and arms and in probably the last month or so it is showing itself in my tongue, I’ve had it in random spots ALL OVER my body… including on my nose, my head, the back of my throat feels strange like perhaps it’s there too. I even have this awesome new twitch in my right cheekbone tissue under my eye. RSD on a rampage <sigh>. I swear it’s ALWAYS more profound at night, and brings new meaning to PMS. :(

I am worried that I am either headed for or already have full body RSD. Is this how this typically goes in terms of spreading? I feel like my body is just attacking me. Any insight you can offer would be greatly appreciated.

By the way, I am also a film maker / Exec. Producer of my own company. Come hell or high water, I will eventually produce a compelling piece with the hope of getting RSD the attention it deserves.

God bless the RSD worriers! :grouphug:

Vrea,

Hi it's nice to meet you.

None of us here are doctors but it sounds like it is spreading.

What is your history with a PM Doctor or Neurologist? Have you had any blocks in the past to help the RSD and the spread? That is the normal course of action when RSD is first diagnosed. I was diagnosed in 2004 also and have done many blocks, ketamine infusions(3-5 day inpatient) and medication.

As much as a hate to admit it the ketamine is what really got it under control. Ketamine and I have a real love hate relationship. I suffered greatly from some of the same symptoms you speak of the sleeping, sweating, pain, weird digestive issues, which I never had in my life, feeling of water running down my arm, what a werid feeling, etc. I have said the exact same statement "it feels like it's attacking me". But after 3 inpatient ketamine treatments I have been under control since 2009. I take very few pills at this point, back to work since Jan 2009, only PT, I go to the gym which has been a life safer. Honestly it has been by far the best form of medicine I swear. I don't know what it is about excercise or just moving on a regular basis but it does help and not just help but you feel just so much better. It was very hard to get started and try and push through but my doctor really pushed me to do it and I have been a 3-4 time a week gym person for about 2 years. There is a pediatric RSD doctor, Dr. Sherry out of PA, who believes that heavy PT, and from what I here it's quite intense, can reverse the central nervous system and in turn reverse the progression of RSD. There is also a group of doctors in Chicago doing a study using adults. It works better with children because there body and mind are easier to change.

I do still get flares but very far and few between.

Hope this helped.

Gabbycakes

It’s nice to meet you too Gabbycakes, and thank you for your reply.

After typing all this below I am about to click send and notice that it’s kind of long. Hope I don’t bore you to death with all the details….

The doc who did my original surgery was an orthopedic, big mistake in my opinion. If I had it to do over, I would have sought out a neurologist.

The Ortho is the doc who suggested it was rsd when I wasn’t getting better. He referred me to a PM doc. Within a years’ time I had to have knee surgery on the same leg with the rsd. The thigh muscle today is maybe 80% of pre-surgery in density. And the knee is still not great. By now I am on all kinds of pain killers, pain patches, Neurontin, etc. He wanted to do blocks, and honestly it was like I had become hyper sensitive to pain, and the thought of one more poke or prod anywhere in my spinal area or anywhere else was just unfathomable to me.

I would average at least one yearly visit to the ER to get the pain under control. There was a long period of denial for me. I think I was still holding onto the idea that I would get better; it’s just going to take longer than I thought. I started to back off the meds. Eventually I was able to deal with higher levels of pain, and kept the big gun drugs for breakthrough pain.

So… yeah, I’m over the denial part now and have come to accept that it’s not getting better, in fact, now I feel like we’re headed in the wrong direction… backwards. I feel like its regressing and have been actively looking at what my options are. Maybe it’s just me but the blocks just seem so limited in relief for the folks who have tried it, and I just don’t read enough positive results that make me okay with having that procedure.

The ketamine makes sense to me. I equate the brain to a PC hard drive that needs to be rebooted. From what I understand, insurance won’t cover those treatments. Has that been your experience?

I try and stay as physical as possible, really I do. At least once or twice a week I will push myself, but I must mentally prepare for the payment in degrees of pain. I mean a trip to the grocery store and that’s it. I’m done for after that. Lucky to push through to get them put away. I used to love to work in my yard, and now I will hardly be able to walk after an hour or so of that. I used to go out on shoots at work, and sometime would double as videographer. This is hours of being on your feet, and lugging gear, and a year and a half ago I stopped going on shoots unless absolutely necessary, and I no longer carry gear when I do. So the idea of a daily workout would require a lot more medication just to get through it, and maybe that is what I need to do.

Half of my calf and most of my foot are completely numb and have been since surgery. This is the original leg/foot that I woke up with rsd. When I’m active it’s like the calf muscle seems confused and just wants to contract, spasm, and incredible pain for sometimes days depending on how much I used it. The knee swells, and gets stiff…. Again, I can’t figure out, other than maybe water, how I can exercise regularly. Again, maybe I need to make more effort to do this too.

Thanks again Gabbycakes for reading and responding, and great to hear that you’re doing so much better. Good to know there is hope!

V-Rae

V-Rae,

Nice to meet you; sorry it is under these circumstances of course....

Lots of information and support here, and a good place to just "vent", as we all need to do from time to time.

I was diagnosed in 2008 after multiple surgeries in my foot. Took about a year to diagnose, and another year of research and trial and error for me to develop a management routine for my CRPS. I am luckier than most on this forum and for that, I am grateful.

Who is your "primary" doctor handling your CRPS? It is so important that you have full confidence in this person. I have seen many, many doctors......some good and some definitely not so good! Keep searching until you find the right mix of "meds" and professionals. I use chiropractic, massage and physical therapy, along with my GP, my Podiatrist, and my Pain Management Doctor.

But my life is completely different than it used to be. I used to be a competition water skier and now I train kids from the boat. Not quite the same, but it keeps me in touch with a sport that I was so passionately involved with. I used to golf and now watch it on television! And so on, blah, blah, blah. I need a full knee replacement in the other leg, and another foot surgery, but am holding off as long as I can for obvious reasons. Like you, my shopping trips are carefully planned out and working in the yard is done in 20 minute segments. We've all lost so much with this disorder.

Movement is very important, but overuse aggravates my condition. My mantra is "use but don't overuse".

I try to focus on relationships and family now, as that is what provides a big payoff to me when things are rough. Stuff just doesn't matter to me any more. I live a way more "minimalist" lifestyle than I did before CRPS.

I see that you are a film maker. What city? I had my own communications company, where we primarily produced corporate product and training videos, along with a few infomercials and commercials. I have been doing voice over talent since the 80s. We should get together on a CRPS project! It is so misunderstood, even by professionals. I agree that more awareness is definitely necessary!

Good luck!

Hi Vrae,

My RSD was so much like yours in the first and into the second year after I was diagnosed. It started in my shoulder but moved up into my neck and head (after a bunch of trigger point injections that left me worse off than ever), then down into one leg. But the sparks and random spots of flares - that was me. I know how you feel. I was terrified. I had 8 SGB and one LB during that time.

One year after my diagnosis I started lidocaine infusions and they they began to chill my RSD out. I had 8 of them, spaced about 3 weeks apart. It takes much more than just one infusion to feel much, so you can't give up after just one or two. The lidocaine was readily approved by insurance. I highly recommend it, it helped me about 30% to 40%, especially with the buring pain and shocky feeling. I stopped feeling like everything was so out of control. I got infusions of 300 mg at a time over the course of about 3 hours or so.

I am now doing ketamine infusions - they took a very long time to me to get set-up and then approved, first by United Healthcare and then by WC. You could consider starting with the lidocaine while you work on getting ketamine lined up like I did. Or skip the lidocaine and go straight to ketamine... I can honestly say after everything I have tried it's by FAR the most effective and worthwhile treatment out there. (But not perfect...)

So sorry you are going through this, I can totally relate. There are some awesome people on this board that have helped me enormously!! Keep in touch and let us know how you make out.

xoxox Sandy