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Undiagnosed Leg Pain
I am looking for some help around some pain I've been having for the last two years now. Even if that help is referring a doctor or specialist who may be able to help me!
I'm 33 years old. Two years ago I was at the gym running on the treadmill and when I left, it felt like I pulled my hamstring (I've never pulled a hamstring). Two years laster the pain has traveled down my leg. I live around a level 6 or 7 pain, and have episodes that can get up to a 12 or 13 (in my opinion).
Symptoms: Deep aching on the outer, upper, part of my leg. Sharp, random pains on the inside of my calf. If you push behind my knee, it absolutely hurts. Sometimes pain on the outer, back part of my knee. The upper part of my leg ALWAYS hurts, my calf is random. But sometimes my whole leg is firing on all cylinders of pain. I have NO numbness, tingling, drop foot, or burning. Nothing above into my glutes hurt either. Only AFTER my spine injections, and it goes away.
What makes it worse: Sitting, especially for long periods of time. Bending at the waste too much. Bending my knee tightly. Walking on uneven ground. Most exercise.
What makes it better: nothing. literally nothing.
Plan of Care I've gone through: Physical Therapy three different times, SI join injection, Piriformis injection, L4 L5 Injection, Cortizone injections, knee injection. Aiirosti massaging. Not bending and resting. Gabepenton and multiple anti inflamorties. Topical treatments. Easter medicine acupuncture. Dry needling.
Tests: Two different nerve tests, came back normal. MRI of spine, pelvis, hips, femer, tibia and knee. X - Ray of the spine. Ultra sound of piriformis. There is not a single test that shows any outlier of what my diagnosis could be.
The only other symptom I have is numbness and aching in my heel on the same leg. But I have had that for a long time from running. It was not my first time running when I was injured, I've been an active person as much as possible.
I appreciate any help in advance. I'm really at a loss and feeling hopeless. I just want to get better so I can get back to having quality of life.
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Following. I have left side similar issues, but had a total knee replacement and an L5/S1 disk decompression on my left side. Pain still persists after two years. Did not have nerve pain until after TKR. Finally gave into pain meds in Dec. 5-mg Tramadol and 300 mg Gabapentin take the edge off, but I am never pain free. I was very active and still try to be. Seems worse with exercise, but making micro-improvements so keep trying. My best to you as pain and not knowing what causes it is frustrating. Some days hopeless, most days determined to get my life back!
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2 ReactionsI am so sorry. I’ve had leg pain for 15 1/2 years after a femur break but they cannot find a reason. I JUST recently had a PT notice that my TGL muscle is enlarged- which apparently can cause pain to back, knee and thigh!! And Yes I’ve told all my Dr therapist ect…. About this to no avail. I can only empathize with your pain. And I know giving up sometimes feels like the only thing to do. I have many times and then I get back to work researching. SOMEONE has the answer. Please know you are not alone. Sometimes that’s
All that keeps
Me going.
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3 Reactions*** TFL a muscle Not tgl
Hello @kmarie9o, welcome to Connect. I'm real sorry you're going through this mess, especially at your young age.
Your story resonates with me based on the range of unexplainable symptoms with no positive medical test results, and failed treatments. Ultimately, all of what you've described can be a recipe for the "cycle of pain" which is this big merry go round of pain that keeps escalating, failed meds and treatments, doctor hopping hoping for answers and getting none, while emotional and behavioral changes begin from stress, depression, hopelessness, etc. The more you hurt, the less you move then deconditioning sets in and it becomes hard to get out of the cycle. I understand how you feel, having been there myself.
Do you think you may want to apply to Mayo Clinic? It's possible a larger teaching hospital may have ideas. I'm providing the application link should you feel that might be your next step -
Mayo Clinic -
- http://mayocl.in/1mtmR63
It's hard to settle on the fact that doctors say they can't figure out what's wrong and you keep wondering if something has been missed. I myself had nothing left to rule out and Mayo denied seeing me for that reason. In my case I self advocated, kept researching, and landed on Central Sensitization Syndrome (CSS). Have you heard of it?
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4 ReactionsThank you for the words of support, everything you said was completely accurate as it relates to how I've been feeling about trying to feel better!
I actually JUST applied for the Mayo Clinic and unfortunately they are out of network for my insurance and I can not afford the cash pay at this time.
I have not heard of CSS but i am going to look it up and see if it sounds like it might be something related to what I have going on!
Yep, insurance can be a problem. I ran into the same snag. My insurance had no out of network coverage at the time. But get this, once I was denied being seen at Mayo I started thinking outside the box and digging. During my research I came across this video about CSS by Mayo Clinic's Dr. Sletten.
Central Sensitization Syndrome - Dr. Christopher Sletten:
- https://www.youtube.com/watch?v=vJNhdnSK3WQ
For me, watching this video was a light bulb moment. I cried and felt seen. I made my husband watch, and he was equally amazed at how it related to me.
Once I understood CSS and realized Mayo had a pain rehab center (PRC) to help people with chronic pain, I was all in on getting there. That meant switching insurance plans upon eligibility and paying a higher premium to have out of network coverage. I graduated the Florida PRC over 2 years ago and am doing well.
Everyone is at a different place in their pain journey, but rest assured no matter where you are - you must hold on to hope and positivity. Things will get better!
I look forward to your thoughts on the video and whether it resonates with you. You may not connect with every part and that's ok, but I sure hope it helps you in some way.
In what ways have you been managing stress over the past couple of years? Have you found any self-help tools or strategies that work for you?
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5 ReactionsAfter doing some googling and watching the video, unfortunately I don't think a lot of the symptoms apply to me, but I'm no doctor! Again, I do appreciate all the insight and support!
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2 ReactionsNo worries. As I mentioned not everyone connects with all symptoms in that video. Some people simply have back pain some people have leg pain some people like myself have many symptoms that CSS encompasses. At the end of the day now you're aware of what our central nervous system can do and you have this knowledge in your back pocket if all else fails. Do you have any large teaching hospitals or Medical colleges nearby where you live that you could apply to for further evaluation?
My knee surgeon just suggest that she thinks part of my issue may be psychiatric like CPS. I feel like I have wished, prayed and cried it away long enough - pain in knee two years post surgery. If I could walk well and did not have a numb foot, I might buy into it more. Plus I do not have symptoms except pain on my left side from my back to my foot. And, I have multiple back issues. Has anyone else has a doctor suggest this as an issue? I fear it will make other doctors not take me seriously. TIA
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1 ReactionHello @rennie. I'm sorry for your pain, and understand where you're coming from. I guess my question for you is, are you still in a diagnosis phase, or have you (or your doctors) settled on the fact that you have chronic conditions of back and left side pain, and neuropathy? Figuring out whether your situations are acute is the first step, then quite honestly, if they are not, it becomes about working on acceptance and a chronic pain-management game plan.
You mention that you don't have symptoms. Do you mean some of the CSS symptoms described in the video? Maybe you don't have a plethora of symptoms, but you do have symptoms. I went to Mayo's Pain Rehab Center and was joined in class by a variety of chronic pain folks. Granted, we did not discuss our symptoms (that is considered a pain behavior), but Dr. Sletten made us very aware that while some may have less or different symptoms than others, we were all in a similar place of needing a plan to help achieve a better quality of life. Some people, like you, simply had surgery and were left with chronic pain.
Is the Mayo Pain Rehabilitation Center something you might consider looking in to?