First, let me explain how it all began. In January of last year a man broke into my home while I was sleeping. I woke up, approached him and was immediately attacked by him. I'm a big guy, so I fought him (successfully) out of my house and onto the street in front of my home. My then live-in girlfriend called the police, who showed up shortly and arrested the individual. I was only in my pajamas, so I had no shoes on and suffered considerable damage to my poor feet! They were bashed and bruised, and I had a displaced fracture of a pinky toe. I also had a considerable amount of blood from that individual make it's way into my mouth (I'm not a violent person but I will say I at least delivered that jerk a serious beating!).
Within a month the weird nerve pain set in. My feet would ache and burn -- and it was worse at rest. I was in nearly constant pain, and my world quickly took a tumble down the rabbit hole. I lost my girlfriend, quit my job, stopped playing sports -- at 28 years old I felt totally crippled. Doctors couldn't tell me what was going on, so I theorized that I had somehow contracted some sort of horrible neurological disease and that I was on the fast-track for intractable, chronic pain. I felt like life had been yanked right out from under me.
Ugh – sucks. Suuuuuucks!!!!! Been there. Never more alone then there. Here is better than there.
That’s a way more impressive story than most of us here though
Fast forward a year and I finally saw an amazing pain specialist in Seattle. He quickly diagnosed with me "sympathetically mediated pain." He said I'm borderline CRPS, but he actually thinks I haven't yet hit even stage I of the disorder. For this I am immensely grateful. He said he "hopes" we can beat the pain into remission by aggressively treating it -- the hard part is -- aggressively treating it involves quite the medical roller-coaster ride.
That leads me here, as I'm frankly feeling a little lost and unsure of my prognosis. I've got a few questions I'd like to ask each of you:
1. I'm 28, young and healthy despite my "sympathetically mediated pain". I've actually recently started exercising again and noticed a benefit, so I'm going to continue to do that. I used to love to run -- which I've tried doing again, but sometimes it actually seems to hurt more. Am I doing damage by running "through the pain" -- should I look for a more low-impact exercise routine?
To me, the Move It Or Lose It Rule applies. This, however, is one of major paradoxes of CRPS. Overdoing it will send pain levels through the roof. Not doing anything makes it hurt worse, as you’ve already discovered.
No one can say if this is “classic” RSD/CRPS any better than your doctor. If it is indeed RSD, you caught this thing at what appears to be an early stage and at a young age. The fact that it sounds like things haven’t progressed beyond the original site in the past year and has “stabilized,” more or less, is a very promising sign.
I personally would go more low impact. In addition to what Bram has described, walking will give you all the benefits, get you outside, and likely result in less pain and more healing at the early stage. But it’s on you, Toe! Do what YOU think benefits you.
2. My doctor says I'm early stage since I only have pain, some vasomotor instability, and increased sweating in my feet. Does this sound accurate to you guys?
Yes – those are some of the more pertinent symptoms. But stages and symptoms vary bigtime. I’d say you’re still in great shape though. For reference and comparison’s sake, here are mine copied and pasted from my old pain journal (in no particular order):
1) Constant deep burning pain average level 9 out of 10 when dependent (foot down). Pain level highest in entire foot but also in Achilles, calf, and lower hamstring.
2) In dependent position, bloodflow pooled up entire limb until right leg from the knee down turned a deep shade of purple.
3) Insomnia. Pain level increased at night.
4) In elevated position, pain level decreased to 7 out of 10.
5) General swelling along entire foot and ankle.
6) Intermittent electric shock type stabbing pain.
7) Scaliness/skin flaking.
8) Skin temperature 5-10 degrees hotter.
9) Constant sweating.
10) Intermittent muscle spasms.
11) Loss of motor control.
12) Extreme sensitivity to cold.
13) Extreme sensitivity to “sharp” touch, i.e. fingernails.
14) Extreme sensitivity to unexpected touch.
15) Sensitivity to bedsheets.
16) Sensitivity to ceiling fan.
3. My doctor's treatment plan is the following:
6 lower lumbar sympathetic blocks (3 in my right, 3 in my left). I had my second block yesterday and it totally knocked out the pain for a whole day. Today the pain is back and at a 3-4 (better than usual). That leaves me pretty optimistic.
He wants me to take Cymbalta and Lyrica. He says it should provide immediate relief and help get my nervous system back to the proper state. I'm a little worried about side effects? Anyone here taking these? What has your experience been?
Pain psychology to help treat the underlying anxiety and depression accompanying this mess, as well as teach me pain coping skill and resolve any degree of pain which may be created by my (poor) emotional state.
What do you guys think of this treatment plan?
My experience was similar.
When I was first diagnosed, I went to a CRPS/RSD specialist at a teaching hospital and he recommended the same regimen of lumbar sympathetic blocks. At that point I was already making some steady progress on my own with self-directed physical rehab, major dietary/environmental changes, desensitivation techniques, meditation, and mirror therapy.
My original doctor and team would not write me a PT referral until I started the nerve blocks to “get the pain under control first.” The specialist at the teaching hospital said the same. I really wanted guided PT ASAP but it was not in the cards. So I had to go it on my own.
My choice was to not undergo the blocks since my instinct told me that my case of RSD resulted from the popliteal nerve block that was done as part of my ankle surgery that resulted in RSD in the first place. So… I may have had an extreme personal bias towards the general medical establishment at that point
As far as drug regimen goes – that is highly individual. Antidepressants were prescribed but I elected not to proceed with them. I went on gabapentin and narcotics. The narcotics relieved the pain at first but more and more became necessary to achieve any effect. Gabapentin didn’t do anything for me and insomnia was a side effect of both.
I felt the intuitive need to wean off of both and did so over the course of several weeks. Quitting narcotics was a very tough business
Second point: I view the physical “cause” of RSD (and many of our physical ailments, for that matter) as the excess production of free radicals from an original trauma site. Then they’re free to circulate throughout the bloodstream and wreak havoc on the rest of your body. The impact depends on the initial state of the immune system, which can be compromised without our knowing due to a wide variety of stress factors. I know thought I was in a great state of health prior to developing RSD, but looking back I know it was just the outside physical shell - inside was another matter.
Regardless – I believe that the best option for remission or cure is to eliminate those free radicals from the body so it can what it does naturally and start to actually heal itself.
There’s a former poster on here and some other sites named VICC that had it right from the start. I love that man.
My early treatment protocol medication-wise was based on the following study (and lots of other research):
http://www.rsds.org/pdfsall/treatmen...ee-radical.pdf
99.99% pure grade DMSO mixed 50-50 with vegetable glycerin on the site 3-5x daily for 90 days, and NAC 600 mg 3x daily for 60 days was the protocol I used. If I was later stage, I would be looking into hyperbaric oxygen therapy. And deep levels of meditation.
4. What do you guys think my chances are of beating this thing into remission and getting my life back? Will I ever truly feel 100% again? Do you guys know anyone who has beaten this bad boy?
Toe I Love your attitude and the answer is a resounding yes. All I wanted when I was first diagnosed was to find SOMEBODY that had beaten it. You gotta really look hard to find that.
This time last year, I couldn’t walk. I am now blessedly 100% RSD symptom free, and have been for 7 months. I don’t call it “remission;” I call it “being in good health.” I feel a major difference in the thoughts that result from those two descriptions. (I also feel that consciousness causes reality and not the other way around, so I've learned to be very aware about what I think - consciously, subconsciously, and unconsciously. But that's a whole 'nother ball o' wax.)
Back at it - I do have lingering nerve damage in the top of my foot, but it is just mild numbness and has been gradually going away over time. Them thangs have taken a looong time to regenerate.
5. Anything else you would suggest to me to help get over this / cope with this?
This ain’t your standard medical advice and I am certainly not a medical professional so take any input from me with a grain of salt. Shoot me an email at PaulEndrum42@gmail.com any time you want to talk or vent.
I also echo a LOT of what Bram says above. Plus she’s friggin’ articulate and caring and upbeat and really knows her stuff! She could turn out to be one of those people that beats the whole thing despite what she says, even a couple years in
And Renee. Renee is one of a kind and I’ve seen her reach out and comfort so many people in the short time I’ve been on here – her own pain be damned. One day her heart is going to encompass the entire world and heal it all at once. Fact.