Unexplained knee pain - I need help - please read!!

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I’ve been on crutches for almost a month, with an as-yet-undiagnosed right knee issue. I'm an almost 50 year old male.   I never actually injured my knee.  After hiking 50-60 miles in National parks on a month long summer trip, I used our riding lawn mower when we returned, and haven’t walked since.   That night, my knee suddenly swelled and was incredibly painful, unable to support any weight.  I went to a sports medicine orthopedic clinic the next morning. An MRI showed a ‘patellar tracking disorder’ as the primary diagnosis - my kneecap isn’t always moving correctly.  There was also a bit of degeneration of the meniscus, and evidence of a 20+ year old ACL slight tear.  Physical therapy to strengthen the surrounding muscles was ordered.  However, my physical therapist said that in her 20 year career she’s never seen anyone present with my symptoms – extreme and nearly constant pain, persistent swelling (for four weeks now), lack of range of motion, inability to bear any weight on my knee - as a result of that patellar tracking diagnosis.  I’ve seen both an orthopedic sports doctor (twice) and a knee specialist, and neither knows what is happening to me.  I’ve had fluid removed from the knee twice and a steroid injection into knee – with no relief.  There was an ER visit, due to a concern about a knee infection, which proved unfounded.  I tested negative for rheumatoid arthritis and gout - more bloodwork results coming this Thursday.  While walking, the mere touch of fabric on my knee hurts, as does the sensation of a fan blowing on my knee.  Next I’m being referred to a pain management doctor and to a rheumatologist, and then to a neurologist.  The last doc I saw – a very well-respected knee surgeon, said I either had an inflammatory arthritis (which the rheumatologist could possibly help diagnose), or Chronic Regional Pain Syndrome.  I’m having a hard time with all of this.  I have finally gotten my life back after 3 ½ years of suffering chronic pain (post vasectomy pain syndrome) following a vasectomy, where no doctor could specify the source of pain that was absolutely debilitating.  I’m a teacher, and other than working (which I barely made it though), I was largely horizontal, as that was less painful.  I had 7 surgical procedures from an internationally known specialist, including denervation of the spermatic cord, numerous nerve blocks, a vasectomy reversal, and finally an orchiectomy which resolved the pain.  To experience debilitating pain again is just unbelievable - PTSD from my previous ordeal adds anxiety on top of everything else right now.  And once again, no professional has yet to determine exactly what is going on with my knee.  It has been swollen for almost a month, incredible pain – keeping me up at night, even after pain meds – nothing seems to make it better – it’s always present, it appears purple after a day at work, I have greatly reduced range of motion, it won’t support any weight, I can’t walk without crutches, and a friend said it appeared somewhat atrophied.    I can’t drive my car, as braking is painful and difficult.  If I have a number of medical appointments, I can (painfully) drive my wife’s car.  Just got a six-month handicapped placad.  I can’t assist with house chores very much with crutches and an inability to bend/use by right leg.   And, my wife and ten year old daughter must watch a loved one suffer – which is draining.  What professionals should I see first? I feel like there’s a time constraint, as treatment sooner seems a key factor in recovery.   Do my symptoms even  present as CRPS?  Any help would be appreciated. 

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  • Posted

    tunajon,

         Yes they do resemble CRPS, my son has just this year been diagnosed with this horrible condition. You have the inability to put weight on your leg, the discouloration, range of motion, and appearance of muscle atrophy. The key is early diagnosis before things get even worse. You need to see a Neurologist because then you would be on the right track. My son takes Ibuprophen/Benadryl combo's to help with the swelling and he takes B-12 which helps heal nerves and it's good for you. He takes 2 Benadryl at a time and 3 Ibuprophen 3-4 times a day and the doctor has him on Lyrica. Med's are different for each person but the one thing that isn't different is the Ibu/Beni as we call it Histamines cause swelling and Benadryl is an antihistamine so that helps tremendously with swelling. My son had so much swelling when this first started with him that he was at about 143lbs and he gained up to 170lbs the swelling was so great and it happened so fast he now has stretch marks on his legs, this was gained in less than 3 months and since he is now on med's he has lost back down to 153lbs so yes get you the help you need ASAP. The sooner the better and keep us updated and let us know how you are getting along. By the way my son has those problems with wind blowing on his legs and water is terribly painful. God Bless You and keep you is my prayers for you. Stay Strong.

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  • Posted

    Tunajon,

    I'm so, so sorry to hear of your pain.

    I have had CRPS, Complex Regional Pain Syndrome, for 4+yrs after a lumbar fusion surgery due to a car collision that broke my back. I woke from surgery with my left leg twice the size of my rt leg, pain starting in my butt and traveling down my leg, into my foot and out my toes. The only way I can describe the pain is like someone pouring liquid fire down my leg and foot. I was unable to pick my leg up off the bed. I walked with a walker for a little over 2 weeks, dragging my leg and foot behind me. I was finally able to move and use my leg, but the pain did not subside. After many, many tests to rule out everything from deep vein thrombosis, to infection, my surgeon said that my nerves were mad and inflamed. I had steroids epidural injections, countless hours of physical and occupational therapy and bio feedback, I was not getting better, but worse, if possible. At 9 months post-op, I was completely fused and my surgeon had another MRI done. He decided a screw in my hardware had moved and might be my problem. So, I went back in to surgery to remove my hardware(screws and rods in back, leaving a metal plate and screws in front). This only made my pain worst, if possible!

    At 13 months, after trigger point injections, in my surgeons office, I was diagnosed with RSD, now called CRPS and advised to discuss a SCS(Spinal Cord Stimulator) with my pain management Dr.

    After much research, I decided the SCS was not an option for me.

    I continued trying every kind of prescription pain med there was. My neurologist finally gave me a sample of Lyrica and after taking it, I slept for 4, undisturbed hours of heavenly sleep! I had not slept 4 hours at one time since this nightmare has started! So, I started taking Lyrica and I needed more and more to help with the pain. I was up to 2,400 mg a day and it was helping with the pain more than anything else I'd tried. But I started having terrible side effects, one was gaining 82 lbs in 5 months. I had to get off the Lyrica! I was having every side effect. I didn't mention, but before Lyrica, I had tried acupuncture for months, massage therapy, sympathetic nerve blocks, steroid injections, water therapy, every kind of pain med on the market, pain patches.,....everything you could image, I tried!

    When I knew I had to get off the Lyrica, my options had ran out. I finally, after much prayer and research , December 2014, I had an intrathecal pain pump implanted. The pain pump has helped with the pain. It doesn't take it away completely, by no means, but as my pm dr says, "it's another tool in the tool box."

    Since 2012, when my nightmare started, the CRPS has spread to my other leg, foot and waist line. I continue to research and pray for a cure.

    Just like you, my legs are very sensitive to touch, air, heat, cold, water and clothes. My feet go ice cold while burning like fire. My legs can't stand a sheet to touch them most days.

    You're new to this so get to a dr that knows about CRPS and get ganglion sympathetic nerve blocks! Caught early, like yours, remission is possible if you get the right treatments! You may have had CRPS longer than your knee......you may have had CRPS instead of vasectomy pain syndrome and been misdiagnosis, by the symptoms you have described.

    Early treatment is the key to beating CRPS. Don't give up and keep researching and pushing your Dr's. Please don't end up like me and so many of my fellow sufferers that was diagnosed too late!

    Praying you find the right dr and get the treatment you need to stop this evil from hell!

    Browneyes

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  • Posted

    Hello, your story is alot like mine. My pain started just above my knee for no reason. It felt like going thru my leg with no warning. I was told it was pattelar misalignment and had surgery to fix it. Turned out to be a very bad move,the pain got worse.Started taking all different meds, the only thing that helped was pain meds. All they do is help to live with terrible pain.Last year my thigh became atrophy. After months of seeing different DRs I was finaly diagnosed with CRPS. But it was too late. I have been unable to do much of anything, have not worked in 7 months and applied for ss disability. If it takes too long to get diagnosis the disease becomes pemanent thats what I was told. Find a pain DR that knows about CRPS. Good Luck!
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  • Posted

    Today I went for a "follow-up" with my original Orthopedic sports doctor.  I told him my symptoms, experiences, and history, and after am exam, but before I mentioned it...he said he believes it is CRPS. He's referring me to a neurologist as quickly as he can.  It's reassuring, in a strange way, to be a bit closer to a diagnosis, so I can fully confront it. However, I hope it is not CRPS. Even though I realize remission and management is possible, I'd rather it not be CRPS.  I also know that this is just a working hypothesis for now, and will not presume it's the correct diagnosis, at least not just yet.

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    • Posted

      tunajon,

           I hope it's not either, I guess a diagnosis would at least keep you from wondering !!! Doctors these days don't think in a time frame and how much a quick diagnosis helps a person to realize what it is their facing and allows us to retain knowledge based on what the diagnosis is or that is my opinion. Some don't actually realize what kind of pain a person experiences since their not the one having the pain. Keep us informed as to what the doctors are saying and how your progress is when you get a difinitive diagnosis. God Bless...

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