My diagnosis after Trimaleolar fracture and dislocation

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Hi everyone,

I'm writing this out for anyone who might find themselves in my situation I the future. 

So I am five and 1/2 months out from two surgeries for my trimalleolar fracture and dislocation. I had an external fixator for three days, and then that was removed and I had ORIF surgery. 

At first everything seemed to be healing on schedule. We all know how painful and tedious the experience is, but there is light at the end of the tunnel.  So I was thrilled when the surgeon said my bone was healed and I could fully weight bear. I did ask him why, after three months, my foot ruled a brilliant red/purple when I put it to the floor and was told it would get better when the muscle in my calf regained its strength and could pump the blood back up toward the heart.

Well, all of the excitement of the bone healing was lost because it was still so painful to walk. Because every time I put my foot down, it turned a brilliant red and started to swell a bit and throb. Soon, it was just the foot and ankle, but the whole calf that turned color. Ten minutes on my feet was all I could bear before I had to put my foot up to get relief. Within one minute of my foot being up the color goes back to normal, and the heavy, throbby feeling goes away.

I was very sure that I had venous reflux. It just made sense. When I put my foot down, it turned red because the blood pooled instead being pushed back up. So I made an appointment with a Vascular Specialist. Blood clots had already been ruled out by doplar scans, but usually it is minor arteries that cause the problem.

After extensive testing I recieved a really surprising diagnosis. My blood pumps perfectly fine, so it is not a vascular issue. It's a nerve issue. Complex Regional Pain Syndrome. What?! While I have pain from my injury, it is nothing like the pain usually described by sufferers. I can put a blanket on my foot etc. And the color gets better when I put it up!

CRPS is when an injury damages your Sympathetic nervous system. Crazily enough I had been having crazy symptoms that I was blaming on perimenopause and had no idea they were related. My hair, since the injury, turned brittle and just terrible. My blood pressure was fluctuating and at times higher than its ever been. Even a slight exertin had my face bright red and I was sweating like I never have in my life. Your Sympathetic nervous system runs your flight or flight response, so if it's hyper active, you will reach that state with much less stimuli than it normally would take.

 

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    Sorry, for some reason it posted when I was not done. So anyway, I had all the symptoms except the crazy pain in my limb. Turns out three percent will present without the pain initially. It may come later or never. My doctor has been in practice for thirty years and had only seen two others that presented without the intense pain. I will say that for the first two months I felt my pain was off the charts, especially at night, but I was told it was normal and how would one know, never having broken every bone in and dislocated the ankle before?

    Basically I was told that I needed to stop babying my foot if I wanted a chance for remission. I was told it's basically fifty fifty. A week in of using my foot more than I have in five months and it is still the scariest looking colors when it is down, and now, on top of sweating and extreme flushing upon exertin, I am breaking out in awful hives everywhere I sweat. As if the broken ankle wasn't enough. Although the pain may be in the injured limb, CRPS is actually something that affects all of your body. This ankle is just the gift that keeps on giving.

    So now I am researching how to heal the Nervous System. There really is no cure. I AM wondering if several things I do is the reason I don't have the excrutiatiing pain (I definitely have pain but nothing like when the nerve was ripped in surgery and for weeks after). 

    Every day I supplement with Turmeric, ginger, garlic, black pepper and cayenne pepper. All excellent for inflammation and for the vascular system. I also have a pill phobia so through this whole ordeal the only medication I took was 8 days of ibuprofen twice per day. It has been months since I took a pain reliever.

    At the moment, besides my supplements and 'beating up the foot' as per the doctors suggestion, I am looking into energy healing, meditation and crystals to try and get my nervous system back on track.

    I will update if any of my methods are successful. There is no cure and I wish anyone who is also experiencing this the best of luck. Because it stinks big time!!!

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  • Posted

    I am so very sorry to hear this.  I am getting a bone scan in next couple weeks to test for the same thing. Although I do not believe it will be positive - although after hearing your story, who knows?  Wow.  Have you tried acupuncture?  I’ve been doing it every other week for four months, and it has greatly improved everything, including discoloration. 

    Wishing you all the best, Jennifer. 

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  • Posted

    Just got word today that I also have CRPS.  If you find any good holistic options, please let me know.  

     

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    • Posted

      Mel, I am so sorry CRPS is your diagnosis too. It's really no fun. I'm testing things every day. Meditation and a hot drink I create with coffee, regular milk, a large pinch of fresh ground black pepper, a teaspoon of organic turmeric powder, a quarter teaspoon of organic Ceylon cinnamon, an eighth of a teaspoon of organic cayenne pepper (good for arteries and veins) and a dash of ginger seems to keep the pain levels bearable. I have this in the morning and the afternoon.

      Can you tell me some of your story? The original injury and what your symptoms are now? 

      Jenn

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  • Posted

    Hi Jenn,

    I'm going to have to try that concoction! Here's my story . . .

    Sprained ankle September 2017. After 25 physical therapy sessions and continued pain, they did an MRI. Had surgery for three torn ligaments and to remove broken cartilage fragments in December 2017. The redness and burning started within a week or so after surgery and was unbearable, especially at night. The only way I could sleep was to do some pain meditation on top of the drugs. I got rid of the hard-core stuff within two weeks and did mega doses of ibuprofen.

    I kept telling the doctor about the discoloration, burning and tingling. He said it was inflammation. It never hurt to touch, and I had very little swelling (but I didn't have any swelling around the surgical site either). Went back to physical therapy and struggled with pain and walking. Insurance cut off physical therapy after another 25 sessions. When I left PT in May, I was still on one crutch. So basically I was on crutches nine out of the last 13 months.

    I started going to a medical massage therapist right away. She is a holistic healer about an hour away from me, and she worked miracles. She increased mobility, reduced scar tissue, and helped with all the other leg/hip issues that were now happening because of the immobility. I started out going to her once a week; now I see her once every two weeks. After one visit with her, I put the crutches away.

    In June I started acupuncture, and I can't talk highly enough about what this has done. After one treatment, the temperatures between the two feet stabilized and the pain subsided. She has also done electroacupuncture, cupping and taping. Last week, she gave me a TENs unit to use at home. I turn it on about five hours a day at home and at work, and I've actually had a couple hours 100% pain free - and walked barefoot. I know it isn't a treatment, but it does reduce the pain and stiffness enough for my foot to get some normal action.

    Also in June, I started going to a muscle specialist - think of him like a step-down physical therapist. He focuses on rebuilding strength in my leg and foot. He started off using mostly isometric exercises, but we have progressed to some body-weight lifts and some low-weight machines. I see him once a week also.

    About six weeks ago, I'd had enough. All of this effort - massage, acupuncture and muscle guy - is expensive, and I was still struggling with burning, tingling, and pain when walking (which meant I was still limping). Went back to my surgeon (who dismissed everything I had to say) and my GP. The GP agreed with me that I shouldn't be having as much trouble, so he scheduled a bone scan.

    Bone scan came back showing increased uptake in the affected foot. Bone scans aren't specific; they only show there is an issue, but CRPS is one reason that asymetrical increased update could occur. Went back to the GP, and he tried to prescribe me medication. I refused, as I still am not 100% CRPS is the correct diagnosis, and the thought of taking these drugs (with their myriad of side effects) made me ill. He referred me for a second opinion orthopedic surgeon.

    Went to the orthopedic surgeon on Friday. He is not convinced it's CRPS, but he also said because I have basically started acupuncture, it may be a reason why I'm not showing all symptoms. He scheduled an MRI next week to make sure there's nothing physically wrong - my sprain was really unusual, and involved foot rotation as well as the turning over of the ankle. He also scheduled me for an EMG/nerve conduction testing. He did some preliminary tests, and say I may have tarsal tunnel syndrome and a damaged nerve, which would create the burning, tingling, etc.

    So I am still without a definitive answer, but I believe this new doctor will find it.

    At six months - which is where you are, I believe - I was having way-more discoloration and issues. I have gotten better, it's just extremely slow. Again, has this resolved because of all that I've been doing? I know for a fact that the acupuncture has helped it.

    Current symptoms: fatigue! periodic redness, tingling, and burning. I feel it all the time, but it gets worse at night or if I've over-done it. My little toe has started "clawing" toward the others and I was unable to move it at all till my muscle guy worked on it. Pain deep in the ankle. Occasional red spots appear on the foot. I'm exhausted and depressed (but who wouldn't be after the year I've just had). I too had hives and itching, but I went on a every-other day course of Claritin and Zantac - which the pharmacist says is what a lot of patients with nerve issues do. There's something called mast cell activation that is common with CRPS and nerve disease.

    Hope this helps! I'm just so incredibly frustrated and want my life back.

    I am an avid yogi, so doing more meditation and yoga is a-okay by me 😃. Now to get the energy back to actually show up on the mat. I continued yoga even when nonweightbearing by modifying on my back or knees, so I never stopped. I had just completed by yoga teacher training a few weeks before the accident, which is a blessing. Because of what I learned, I'm able to modify safely. I highly recommend finding a yoga class if you've never gone before. I'm happy to help you.

    One thing I have learned is that CRPS is not well known and very difficult to diagnose. You basically have to rule out other issues, particularly if you don't have all the tell-tale symptoms most associated with it.

    I agree with your doc to use the foot! Don't baby it. Ask about a TENs unit. It may give you enough relief to be able to move it normal. I force my foot to move normal as much as possible, even though it hurts.

    Well, that was a novel 😃. Have they checked for actual nerve damage or compression?

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