Undiagnosed severe pain

Posted by notgivingup17 @notgivingup17, Jun 27, 2021

Hi, I’m new on this site. I’ve been suffering from severe pain that started after I sprained my ankle in 2017. It never really healed the pain has spread to my legs, buttocks, low back. and I can tell every time I use my muscles the pain goes to that area than I start to loss muscle tone. I had a lot of test done all negative. MRI showed a calcified herniated disc L5-S1. I had surgery, I’m in my 4th Wk and I still have the same pain. It’s spreading to my arm, shoulders, upper back and now I have burning tongue syndrome but I know it’s from the nerve pain. Anyone have these issues?

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@notgivingup17

Well I sprained my ankle I think it was late 2016 saw my primary because it wasn’t healing at that time it just would swell once in a while. I ask to go to physical therapy but he wouldn’t send me, he said I would need to be in a car accident. It gradually worsen through out the day. I started feeling weird sensation like water dripping on my calf, the blanket on my feet bothered me and eventually crawling sensation. Finally I went to a orthopedic/ spine doctor had a MRI done, he said I had a bulging disc L4-L5 than said I needed a EMG and PT. I was afraid of the EMG from hearing other people. I got a 2nd opinion from a surgeon he said I should try PT and maybe a chiropractor. I tried PT it didn’t help the pain spread to my other foot and calf and sometimes in my hands. I was still trying to exercise. After that my buttocks muscles got so tight they wouldn’t relax. Than the pain went to that area but with lots of prickling and muscle pain. By this time it was 2018 I had the EMG done it was negative. Went to several chiropractors and start seeing a pain doctor. So far no meds or chiropractor worked for me. In 2019 I saw another surgeon he sent me to a musculoskeletal neurologist he did a lot a of blood test and small fiber skin biopsy all negative. My surgeon did another MRI of my whole spine and this time I had a herniated disc L5-S1 and problem in my cervical which he said he would keep an eye on my cervical spine since I’m having more buttocks, legs and feet problems I should have the herniated disk surgery. I told both doctors it all started with my ankle, but they didn’t seem concerned about it. So I had spine surgery but I don’t feel much better and it’s spreading. Everytime I tell them I feel it in my arms or going up my sides the surgeon said I have issues with my neck. I did have a whiplash in 2007 that I never got treatment for. I’ve been researching and I’m praying it’s not CRPS. Sorry for the long story. Thanks for responding.

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I just posted this morning on the very same topic of pain following trauma to ankle/foot, and yes my neurologist finally diagnosed CRPS, referred me to pain specialist but I refused a needle in my lumbar region: my neurologist had wanted a pain block but not to spine (I have enough going on within the lumbar region and spinal stenosis, so not eager to have anything intrusive done to my back). So I did not go through with the pain specialist's solution. Yes, he had ordered MRI of spine and yes, it showed what I already knew from having had issues for several years with spine, that I had pretty much what you were diagnosed with. But burning nerve pain in my left foot/ankle and sides of leg are just a constant 24/7 pain level range of 5 to a high of 8. My gait has been negatively affected as it feels like my weight is being placed at the ends of the leg bone where it meets the ankle. Entire ankle/foot/achilles/ heel and top of foot is affected. Neuropathy in rest of foot, including toes. So overwhelming having to deal with all of that, now just over 2 years. The first foot orthopedist had refused to order an MRI, insisting at each subsequent follow up visit "Let's give it another six weeks." Well, I reached the end of my patience and firmly told him that MORE had to be done, so he reluctantly acquiesced and ordered a nerve-muscle conduction study which showed that indeed there WAS trauma-related damages. He ignored a written request for appointment to discuss test results and for him to acknowledge need for MRI. So I left him and sought a top-notch neurologist who read the conduction results, took one look at my affected areas and said that I did indeed STILL had inflammation (one year post the fall!) and immediately ordered an MRI!! Yes, it revealed that indeed there were signs of scarring/healing from "prior traumas to the areas." And his testing of my nerve responses revealed even more so that I was quite accurate and justified with symptoms/issues that I experienced. So I had gone a whole year without proper attention by that first foot orthopedist, with delay of medical course of action! My neurologist knew I did not want to return to that doctor (nor the medical group) so he referred me to a colleague at a private practice (I'm so grateful for my insurance!) and he was incredible! Complete opposite of the first foot orthopedist. Bottom line: I agreed to injections into the ankle areas (not so painful when administered but dang it was INTENSELY painful when anesthetic wore off!). Ordered very-defined PT (I had a round of PT months before, ordered by my outstanding primary but hadn't improved) and this second round did not help much either (I feel it was due to the therapy center changing therapist for almost each session and being assigned one in particular who was so unsure of what he was doing). Pain still persisted, intensified, so I returned to that private-practice foot orthopedist but he determined that there just not more than he could do, so sent me back to my neurologist...and I was told that there was nothing more that he could offer either. Made me feel so depressed hearing that from two specialists...
So here I am with diagnosis of CRPS, feeling pain after more than 2 yrs after the fall and injuries, and not having any idea who to turn to. That's why I posted this morning, asking for advise/recommendations from members who may have similar experiences.
I posted this info as a reply to your post because I connected to what you wrote about your situation/experiences. Your post is dated June 2021, the month and year of my horrible fall, and I hope that in the two year interim you have been able to attain some relief. Perhaps you can share with an update. I'd really like that!😊

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