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

Please go see another doctor (preferably one that is CRPS knowledgable and who has seen this before). If s/he says it's not, believe her or him: it's not. Do not self-diagnose. CRPS is a difficult diagnosis as it is. You might notice symptoms, but it is up to doctors to connect the dots.

A knee is a difficult joint, in that there are lots of "systems" in a tight spot, like nerves, bone, cartilage, so what you have might need healing and might mimic all sorts of things, that doesn't mean it's RSD. It also doesn't mean that it isn't.

Good luck.

I hope someone can chime in with a doc recommendation close to where you are.

If not, go to a pain clinic. Pain clinics are very experienced with RSD!

If it is RSD your best bet is starting Aqua Therapy ASAP and if it isn't, Aqua PT will still be of benefit-it will help you keep mobile. Try mirror therapy. Again if it is RSD this will help, if not, it cannot hurt you.

I also recommend that you acquire a small pedal machine to use when sitting watching tv or doing other sedentary activities. I found this to help with blood flow.

The gabapentin helps nerve pain, but it is not fast acting, you have to take it for awhile before you have results.It worked well for me, but I found it gave me brain fog. Fortunately I was able to ween myself off of it after Low Dose Naltrexone. Google LDN and Dudley for in depth information.

I sincerely hope you do not have RSD, but if you do, be prepared for a journey "trying out" different healing modalities, because RSD is not a one cure disease for most, it is IMO a brain/body disease which requires considerable commitment to healing. I literally need to exercise every day to keep incrementally improving. I cannot over do it, either, because this will cause me to have severe RSD flares.

Doctors missed diagnosing me for nearly year, despite a classic presentation.I was diagnosed via an X-ray which showed patchy osteoporosis, a hallmark of RSD. Hopefully, you will be successfully diagnosed sooner and be treated with nerve blocks, which can put RSD in remission.

IMMHO, it's a little too soon to start talking medication, when he doesn't even have a doctor yet, or a diagnosis.

Maybe you misunderstood me.

Our new member mentioned gabapentin, so I added my 2 cents about it.

I mentioned LDN, because if he knows about before he is diagnosed he can ask for a prescription if the time comes. And for the record LDN is good to know about in general, because it helps most auto-immune diseases. Knowledge is power.

Hello Jonathan,

I am sorry you are having so much pain. It is exhausting to deal with severe pain and the frustration that comes with it. But I urge you to hold onto hope and keep searching for answers. Even if it is determined that you have CRPS, finding a potentially treatable cause for it can be a game changer as far as your outcome. And research indicates that 80% of CRPS patients improve over time. Ignore the doom and gloom out there and the bias found online and don't ever give up.

Some thoughts on CRPS vs. something else. It is true that CRPS is a diagnosis of exclusion. Nerve entrapment is the most likely mimicker of CRPS. Nerve entrapment can be difficult to find but a specialist trained in peripheral nerve surgery or a Physical Medicine doctor may be of help if you don't find other answers. The "scratch collapse" test can sometimes find entrapments as can a peripheral nerve ultrasound.

I am not sure how having a displaced patella wouldn't be extremely painful...
Is it just a little off or is it dislocated? That would show on x-ray. Either way it seems a nerve branch could be getting pinched in there, it doens't take much and one goes right under the patella. If you have a dislocation that can likely be treated with a manipulation. An orthopedist can reduce it or possibly a really good chiropractor. We had a member with longstanding pain have improvement when something wiggled loose during a foot manipulation. Just a thought, I'd ask your ortho. If you tripped during your hike it could've jostled it out of place (especially if you had prior injury). As for the mower...vibration, bouncing, bumps? Or having your knee bent for a while...

On the genital area pain. The nerve to the knee and the nerve to the genital area are not the same but they do communicate (meaning there is a connecting branch between them) When one nerve has damage or inflammation it can certainly "talk" to nearby nerves via chemical signaling that cause pain to be in a larger area. This happens with CPRS but also could be related to ongoing pain, a lot of inflammatory factors in the area or even possible centralization from your prior injury. You might also ask about whether pain could be originating from your spine.

Pain management may have some insight on how to proceed. They may also be willing to try local peripheral blocks to reduce pain and help identify if a single nerve branch is causing your pain.

I hope that your appointments go well and you find answers soon. Remember that if there is something causing this, it needs to get treated so you can get better. Don't accept having pain as an answer until options have been exhausted. You are your own best advocate, as you know from prior experience. Also, try not to overdo. Whether CRPS or injury, causing yourself more pain in an effort to get better can backfire. Keep your nervous system as calm as you can. Aqua therapy is indeed very helpful and will allow movement without so much load.

Sending thoughts of healing and recovery,

He did mention it? I must have read over that part. I don't do well with long messages on here. Sorry if I misunderstood. In any case I still think it's too soon for all that.

Finding a CRPS doctor ASAP is key right now.

Knowledge is indeed power. I don't see anything wrong with sharing what's worked for us regardless of the stage of another's journey. It can be helpful to have a little knowledge base ahead of talking to doctors about options. Personally I find hearing about things that have worked gives me hope and sometimes another direction to consider. I don't mind a member's enthusiasm about their treatment. I'm just glad something is working! Some of the latest research on pain advocates treating pain earlier to help prevent it from becoming chronic. Seeing as Tunajon is already on routine pain meds, looking at other ones that may increase his comfort, work better or reduce the need for opiates seems reasonable.

I am very sorry to hear all that you are going through. Much of what you say does sound like RSD/CRPS...but there could be other causes as well. I do not live near you, unfortunately, so cannot help with recommendations in your area for treatment. I would say that, especially if you are travelling far to see doctors, that you will want to call ahead and find out if the doctor has specifically treated RSD or CRPS before. Do a little research like searching their name and RSD or their name and CRPS.

We all know there is a big range when it comes to doctors who diagnose and/or treat RSD/CRPS. I've met many in my travels who don't know what they are talking about...either because their information is out dated or they haven't even bothered looking into it at all. Some doctors are very arrogant...some are terrible listeners...some just want to jump into surgery and are more concerned with their own interests and pocket books than their patients. And some are wonderful. It can be hard to sort out which is which until you actually MEET them and talk to them...but a starting point is to at least find a doctor who SAYS they specialize in RSD/CRPS.

My advice is always to go to the appointment prepared. When my RSD journey began it was very helpful to have a timeline with everything that had happened, including symptoms, and a list of questions and things to go over with the doctor. When you are in this much pain...it can be easy to forget to mention things or forget to ask a questions...and once that dr leaves the room good luck getting them back in. Also...if they say they don't think it's RSD...then really push to find out what they think it IS then. As others have mentioned...there are other possibilities. That said...the sooner the RSD is treated (it that's what it is)...the better the chances for remission. So if you can find a way to keep moving every day...even small movements...then that is good.

Pain killers have never been effective for me with RSD. But I did find that warm baths with epsom salts are great, ultrasound heat therapy, and TENS were the best at helping me...especially in the beginning when my pain was located in one spot. Definitely see if they can try the ultrasound and TENS (or STIM) with HEAT! If you suspect RSD then do NOT use ice as this can make the pain much much much worse.

I wish you luck in finding a doctor in your area who can help you to find the correct diagnosis and who can treat the problem. I hope that it is not RSD...but if it is then there is lots of great information and support here in this forum.

Thanks so much for each of you taking the time out of your lives to respond to me. I promise you that I will "play it forward" and share the knowledge that I am sure to gain along the way with others. However, right now I'm in a pretty bad state of mind. On Wednesday I went to the pain clinic I was referred to. I mentioned to the nurse prior to submitting my urine sample, that I'd fail the urine test. She asked why. When I replied, she said I'd receive a 'warning', and would need to have clean tests from then on. However, after providing the sample, she returned to the examination room only to state that the doctor wouldn’t see me. I was told that I needed to taper off the Xanax that I was prescribed by my physician, as well as have an otherwise clean test (which could be obtained in about four weeks...), in order to be seen. I was told that the doctor was actually doing me a favor, since if he wrote the results of meeting with me in the chart, he’d not be able to continue to see me. So, I have an appointment in 5 weeks, and must wait that long for the relief I hope he can provide. I certainly understand his reasoning regarding part of the reason I failed the test; however, I was prescribed Xanax for a reason…anxiety. Right now, I have more anxiety than perhaps I’ve ever had, and I cannot seek prescription relief to the extent my doctor prescribed. Today my wife drove me three hours each way to a rheumatologist, since I cannot currently drive due to knee pain. We got that appointment with a prominent doctor through a family connection since my local rheumatologist couldn’t see me until mid-November. He was fabulous and extremely thorough, spending about an hour with my wife and me. His conclusion was that I absolutely did not have any arthritic condition as the cause of my symptoms. He then asked us what we thought was happening to me. I said RSD/CRPS, as so many of my symptoms matched so closely to everything I’ve read about it. He looked quite serious as he said he thinks we’re “spot on”. He then discussed other RSD patients he’s seen in the past. He believes the post vasectomy pain could also be related to what I’m currently experiencing. If true, then I’ve had this for about five years, and the 9 months I was pain free post-orchiectomy was a remission of sorts. If so, then my age, and the length of time I’ve had this both work against me. Tomorrow I have an appointment with a neurologist, which is the specialist that I put the most stock in. My knee is extremely painful right now, after the exam, and after being in the car for six hours. Today was the day where this has seemed the most real to me, as I ponder my future – one where many of the things I was able to do seem as if they’re slipping away. I can’t drive myself, I can’t play with my ten year old daughter as I’d like, I can't keep up the yard, I can barely focus enough to work (even though my job does not require physical exertion, it demands tremendous mental clarity and the ability to speak clearly to groups about complex material), I need crutches to walk, and am in continual pain. I fear increased social isolation. Basically, I’m a bit of a mess tonight. I realize this comes in waves and this too will pass, but right now it’s not good. I’ll post an update after the appointment tomorrow.