Sorry, I reread my post and realized how you might think I assumed that you were getting ketamine infusions. I didn't. I was just trying to say that my treatment which happens to be ketamine infusions also does a much better job on the spread areas than the original site. Sorry I wasn't clear and thank you for responding.


Shay

Oh okay, no biggie! I thought you had indeed assumed that. And I just didn't want to be forthright on the issue.

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

Hi. This is the first time I'm on one of these forums. After 4 years of suffering, I finally found a doctor who thinks he knows what's wrong with me.

It started when I wanted to lose weight and decided to do those Insanity videos in my basement. The problem was that I wasn't wearing any shoes, which is stupid, I know, but I didn't know any better. Insanity workouts involve high impact exercise, which means a lot of jumping up and down. One move I did was going into a plan or push up position, then clapping my hands together, then fall back on my hands, if that makes sense! ha. really good for me. One day I noticed swelling in my ankle and tried resting it and stopped exercising.

Here's the worst part, I didn't go to the doctor. I have no idea why. I was lazy, depressed, and to overwhelmed to take care of myself (this is true in many areas of my health). Eventually I see a couple of physical therapists and a foot and knee surgeon. All diagnose me with tendonitis but I can tell they're really confused and not confident with that. They were shocked by my symptoms.

So that brings me to what I've been experiencing. My left foot has changed permanently. It is always a little puffy in the area below the toes and around my ankle. I feel soreness in my foot, ankle, and calf. I get aching pain and my feet kill me after walking for a bit, even with comfortable sneakers on. When my feet are elevated for a long time, they look pretty normal (only if you look closely will you see that the left is a little big), but when I'm sitting for a long time or I walk in flat shoes, they swell big time, especially my left foot. Wearing sneakers or boots do a good job of compressing the foot and swelling is minimal. Worst symptom of all has been the foot dragging and swinging out, which causes me to bump into things. I trip up the stairs and I think I have some sort of foot drop. Last winter I was walking and all of a sudden I realized I was falling. I didn't trip over anything, just fell forward. I'm also pretty vain about this stuff. As a young woman, it's pretty devastating when you have ankles that swell like crazy. I look like an old lady with edema in her legs due to old age. Really attractive. Now I'm noticing the same symptoms in my right foot and in my hands. I've been really clumsy dropping things and such.

I can't tell you the cycle I've gone through, giving up and then thinking, "There has to be a reason for all of this. What's the cause?" A couple of weeks ago I went to the doctor and laid out all my symptoms online (with Zocdoc). I wanted him to have a diagnosis by the time I got there. He told me this is the presumptive one, so here I am.

To sum up, my symptoms are:

-pain in foot, ankle, calf
-extreme swelling
-edema/pitting
-red spots when I walk
-semi foot drop
-possible spread to right ankle and hands (dropping things)

Here are some pics

Sorry for the long post. It's a scary diagnosis and I hope it can get better. If anyone has thoughts let me know. Thanks. I'm eager to hear your stories too and eager to exchange stories about our journeys.

Attached Thumbnails

       

Hi Outlander,

I am so sorry for what you're going through. We all know how hard it is getting this figured out. There is definitely a lot of emotional and cognitive bargaining that goes on. That said, there is always hope. Even if you have CRPS, 80% of patients improve over time according to major researchers.

CRPS is a diagnosis of exclusion and if a contributing cause can be found and treated it can make a difference in your outcome. If you have not had imaging or nerve conduction studies done those could give important information. CRPS could be causing your foot to turn out but there could be other causes such as nerve compression. Please don't settle for this unless all possibilities have been exhausted.

Hang in there and come visit on the main forum. You are not alone.

Outlander,

Welcome to the forum. I am so sorry to hear about your possible diagnosis of CRPS. It is a scary diagnosis, but there is hope. Please take Littlepaw's advice:

CRPS is a diagnosis of exclusion and if a contributing cause can be found and treated it can make a difference in your outcome. If you have not had imaging or nerve conduction studies done those could give important information. CRPS could be causing your foot to turn out but there could be other causes such as nerve compression. Please don't settle for this unless all possibilities have been exhausted.

I know a woman who definitely had CRPS in other areas of her body, so when she developed pack pain and was told that the CRPS had spread, she accepted it. Several months later a different doctor diagnosed a spinal infection which was treated and the back pain went away. Moral of the story: Make sure all possibilities are ruled out or otherwise you may be suffering needlessly.

With that said, I hope that you share your journey with the forum. We can learn from each other and having others who understand our pain and frustrations helps us deal with it all.

Shay

Thanks littlepaw and shay. I am going back to the doctor on 11/8 to have nerve conduction studies done. my neurologist wants me to get some blood work done to rule out other possibilities, like diabetes, vit b12 deficiency and something about tssh (not sure what that is). i also wonder if there is some ankle instability because i feel clicking in at least one ankle and when i wear the right shoes i don't swell as much. I will ask all these questions, but i'm afraid. i always think doctors believe people like us are hypochondriacs or have munchausen's syndrome because we want to get to the bottom of what's going on. i'll keep you guys updated.

" i always think doctors believe people like us are hypochondriacs or have munchausen's syndrome because we want to get to the bottom of what's going on."

Outlander,

Don't worry about that. Good doctors appreciate patients who advocate for themselves. They may not agree with you, but they should be able to address any questions and help you on your quest for a correct diagnosis and treatment. Also, don't forget that you may be dealing with more than one problem. Just because we have one disorder, doesn't me that we don't have others along with it.

Shay

Thanks for the reply, Shay.

My emg study went well, so that's good, but the doctor believes it's rsd, as he called it. When i mentioned possible spreading, he said that doesn't happen. sigh. He doesn't even know it's new name, but of course this doesn't mean he's wrong.

Anyway, i'm going to continue exercising and stretching my ankle. do you think there is anything else I can do? I figure I'll just follow tips I see online.

Hi all
I'm new here and I have had CRPS for nearly 18 years.
I'm married and live in UK with my husband and our cat Precious.
The CRPS started in one hand, spread to the other hand within a year and then in 2012 it carried on spreading to the degree it is now full body, I'm housebound and use a wheelchair to keep mobile. I have not been on any pain meds for over 11 years so I just do everything I can to distract myself from the 24/7 pain