This is my first posting, but I know there is a lot of knowledge here, and I really need to draw upon that right now…

I am virtually certain I have Complex Regional Pain Syndrome (CRPS) / RSD in my right knee. My symptoms closely match those of CRPS, and four doctors have been unable to explain the unbelievable, debilitating pain, and the other symptoms I've been experiencing for almost five weeks. My family is so desperate for an answer to my debilitating knee condition that we're willing to travel to see someone, if they're gifted, wherever they are, but would prefer closer to our area – southern Appalachians - given my inability to tolerate much travel. Background:
1) I’m a 49 year old male

2)Hiked 50-60 miles over a one month period mid-July to mid-August, with a $15 Velcro brace on my knee, with virtually no discomfort whatsoever, and those were strenuous hikes in national parks

3)Mowed my yard for 90 minutes with a riding mower upon our return. That night, my right knee swelled, looked bruised, and was unable to bear any weight. I am 100% certain I did not injure my knee, or any other part of my body.

4) Went to walk-in sports ortho clinic the next day. They ordered an MRI which showed ‘patellar displacement disorder’, very mild arthritic changes on the back of the kneecap, and mile remnants of an ACL tear over 20 years old, which never required surgery

5) Fluid was removed from knee, and a steroid injected. I was told I’d likely be off crutches in 5 days. I was prescribed physical therapy and 5mg hydrocodone (which didn’t come close to touching the pain)

6) Still massive/constant pain, persistent edema of the knee area, unable to bear much weight, intermittently much warmer (or sometimes colder) to the touch than my left knee, intermittent purple discoloration (as if it was badly bruised, which I’m 100% certain never happened), pain always present but it is always worse as the day progresses. After work days involving more walking/standing (with my crutches), my knee is very noticeably purple and bruised looking. I’ve lost much sleep due to pain, even after taking prescribed opiates. I’ve been sweating in a general sense much more than normal during the day. My right leg looks differently colored than my left, a friend said it looks ‘atrophied’, I’ve developed 5 half-inch unexplained and relatively small ‘wounds/bruises/legions’ on my right leg below my knee. Even the incidental rubbing of light khaki pants hurts my knee, as does a fan on low setting. Thankfully, little to no physical activity is required for work, but even walking down the hall with crutches really hurts, and the pain is starting to distract my focus and effectiveness at my job (high level of intellectual activity and focus required).

7) ER visit due to orthopedist's fear of infection (pain, very red, inflamed), but none found

8) Saw my family doc who tested for gout and for rheumatoid arthritis, with negative results for both. No diabetes. Did cycle of prednisone with no apparent results.

9) A complete artery/vein ultrasound of both legs was negative.

10) Examined by very reputable knee surgeon, who found nothing remotely suggesting surgical intervention is needed. He suggested it was due to inflammatory arthritis or RSD/CRPS, and that he’d refer me to a rheumatologist for a consult. The surgeon said my presentation “doesn’t add up to him”.

11) I’ve been seeing a great psychologist for the last 5 years, who specializes in pain issues, and he’s thinking it may be RSD/CRPS as well, and has treated/is treating patients with that diagnosis

12) Physical therapy regained some range of motion, but still little capacity to bear weight and can’t straighten my leg

13) Still on crutches, now for over 5 weeks. My PT has never seen anyone, in 20 year career, diagnosed with patellar displacement disorder who presented with this much pain

14) I had an "incident" at physical therapy last week. On a recumbent exercise bike, with zero resistance, I was to do 5 minutes of simply moving my legs, at a snail's pace if needed in that circular motion. After 2 minutes and about 5 revolutions, the sharp pain was so much I couldn't continue. After 'recovering', I was doing a different, zero resistance, absolutely most basic range of motion exercise, and after about one minute was suddenly hit with what I think was the single worst pain I've ever felt in my life. I screamed, almost passed out from the pain, was starting to hyperventilate from uncontrolled breathing...it was a mess. It felt exactly as I imagine a red-hot nail would feel, hammered into the top of the bone below my kneecap. Truly unbelievable pain.

15) Currently, I absolutely cannot drive, as the brake pressure is too much. It's so frustrating that no one even knows what's causing this. Even the weight of holding my leg up while on crutches hurts my knee, and I can’t tolerate much weight on it.

16) I am largely incapacitated while home; trying to rest so I can tolerate work. My wife has to drive me to work and anywhere else, in addition to caring for our 10 year old daughter. She has to do so much more around the house, as I’m unable to assist. Mentally, the pain is really becoming unbearable, and didn’t respond well to 7.5 mg oxycodone 2-3 times daily. Now I have 10mg oxycodone up to 4 times a day, and that has helped some. Am concerned the gabapentin is/may impact my cognitive functioning at work.

17) Went to a follow-up with original ortho doc, who, even before I brought it up, said it may be Complex Regional Pain Syndrome. Said to try Gabapentin - 300mg at a time, three times a day, while awaiting specialist referrals

18) I have appointments with three new doctors this week: a pain management doc Wednesday, an out-of-town Rheumatologist Thursday (set up by my father-in-law who's a retired pediatrician, so we can at least see someone until my local appointment on 11/9), and a Neurologist Friday. I’m optimistic I’ll have much more info after those visits. I hope so, since the constant pain is hard to tolerate, as is the lack of a diagnosis. I NEED a diagnosis, so I can know what my treatment options are, and I can feel like we're at least addressing something, somehow. My lack of improvement, and actual deterioration in some ways, has me tremendously stressed, as it does my wife and 10 year-old daughter.

19) One other issue which may well be relevant is that I had a vasectomy about 5 years ago, and during the procedure felt a sharp pain. I proceeded to have almost 4 years of massive testicular/scrotal pain. I was able to work (barely), and otherwise found some relief by being horizontal, in addition to many medications. I had to see an internationally-renowned specialist 4 states away on 6 occasions, where I had – in no particular order - nerve blocks, cryoablation, denervation of the spermatic cord, a vasectomy reversal, and finally, an orchiectomy (one testicle removed). After the orchiectomy healed, I finally achieved pain relief of very nearly 100%!! I was told that my healing from each of the procedures was much slower than normal, and involved more pain that was typical. I enjoyed nine months of feeling re-born, as I was finally pain free. That’s when our hiking trip happened, and here I am, debilitated by pain once again. I’m wondering if there’s a connection between the Post Vasectomy Pain Syndrome I developed, and my current issues. Most CRPS/RSD seems to result from surgery/trauma. I overused me knee hiking, but never actually ‘hurt’ it. Mowing the lawn with the riding mower set off my current symptoms.

I’ll post updates after these visits, and GREATLY appreciate your time in reading this, and welcome any input you can provide.
Jonathan