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Lower Leg Symptoms Remain a Mystery After 17+ Months
Hi everyone!
I'm hoping to connect with others who may have experienced something similar or have suggestions about what else might be worth investigating.
For over 17 months, I've been dealing with unexplained, progressively worsening lower-leg pain. It originally started in one leg and eventually developed in both. The pain occurs both at rest and during movement, so it isn't limited to walking, exercise, or physical activity.
Despite extensive testing and evaluations, we still haven't found a clear explanation.
My symptoms include:
Lower-leg pain: Significant pain, tightness, cramping, and tenderness, including at rest.
Swelling: Lower-leg swelling, sometimes accompanied by burning or numbness.
Involuntary foot spasms: Persistent spasming involving toes 2–4, as well as the side and bottom of my foot, that continued for approximately five months. My big toe also occasionally twitches involuntarily.
Unexplained bruising: Bruising on my legs and arms, particularly after walking or physical activity, without any obvious injury.
Skin changes: Certain areas of my legs repeatedly become red with small white spots when showering.
Persistent skin discoloration: I underwent compartment pressure testing in June, and approximately four months later, the outline of a regular Band-Aid used during testing is still visible on my leg.
Testing and findings so far:
X-ray: Soft tissue prominence along the anterior tibial region.
Lower-leg MRI: Abnormal enhancement involving the tibialis muscles, with the radiology report suggesting possible myositis or denervation.
Ultrasound: Edema identified in the lower legs.
EMG: Normal.
Chronic exertional compartment syndrome (CECS) testing: Negative (June 2026).
Lumbar spine MRI: Unremarkable.
Bloodwork: Largely normal, although CRP has been elevated.
Eosinophils: Historically elevated for years. I currently take Nucala for eosinophilic asthma.
Additional medical history:
I have a history of lower back pain and SI joint dysfunction. An SI joint injection provided significant relief for my SI-related pain, but the unexplained lower-leg symptoms remain.
I also have POTS, eosinophilic asthma, and rapid dumping syndrome. I've been evaluated for possible MCAS and hypermobility/hEDS.
I've also experienced significant gastrointestinal symptoms, including vomiting that required hospitalization. I'm unsure whether any of these conditions or symptoms are connected to what's happening with my legs, but wanted to include them in case they're relevant.
My biggest questions:
Has anyone experienced a similar combination of progressive lower-leg pain at rest and during activity, abnormal muscle MRI findings, swelling, involuntary foot spasms, unexplained bruising, or persistent skin changes, despite a normal EMG and negative compartment syndrome testing?
Did you eventually receive a diagnosis? Were there additional tests, specialists, or conditions that helped connect the dots?
I'm particularly curious whether anyone has experienced abnormal muscle MRI enhancement suggesting myositis or denervation despite otherwise largely normal testing.
I'm not looking for a diagnosis from the group, just hoping to hear about others' experiences and potentially find something worth discussing with my medical team.
Thank you for reading!
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Sorry you are going through all of that and hope you find some answers so you can get better. Ok, I am no doctor, but my wife has had some (but not ALL), of the same issues over the years so I just have a quick question. Have you havd a RA Factor blood test?
@insanepain yes! All bloodwork normal for the most part. My only abnormal bloodwork has been elevated C reactive and high eosinophils for years which are now normal thanks to medicine. My dad has RA, so it was on our radar. I'm so sorry your wife is going through some of these!
Have you tried Prednisone...
I put this into AI and this is the answer that it gave. may be of help, may not. don't know was just curious,,,
.Given your detailed medical history, the most critical underlying clue connecting your symptoms is your history of historically elevated eosinophils alongside systemic features like elevated CRP, abnormal muscle MRI enhancement, easy bruising, skin changes, and severe GI symptoms. Your presentation strongly points toward an eosinophilic-driven systemic vasculitis, most notably EGPA (Eosinophilic Granulomatosis with Polyangiitis), formerly known as Churg-Strauss syndrome.
I was going to say that you need to see an orthopedic surgeon for a diagnosis on a nerve impingement exiting your lumbar or entrapment in your sacroiliac joint. However, when you mentioned the POTS I think you should go down that rabbit hole and see a specialist and join a POTS support group. I know someone else with POTS and they have all these divergent issues and find it hard to accept a diagnosis of POTS. So look them up online and see if others in that group can be of support for your issues. I’ve had all of your leg and foot issues however, my MRI showed various compromises in my lumbar spineand sacroiliac joints. The orthopedic surgeon was the best place for me because of that. I floated around for 20 years until I found a good orthopedic surgeon. Some of the things you spoke about with the bruising and the legs and the Band-Aid thing is just what happens when there’s not good circulation, you are an exercising like you used to and you lose your muscle tone as you age. It’s just normal aging. For people with POTS it’s hard to diagnose what is normal and what is part of the syndrome that’s why the support group is really helpful.
ntwigs09 (@ntwigs09)
At 75 years old, my personal experience with leg cramps appears to be overuse, over time. Decades of driving a commercial vehicle have left me with a tendency of have what I call "restless leg" at night. I still get that almost every night but it's more annoying than anything.
Being small and having to tweak out my body to reach the throttle and clutch (to hold in the clutch for long periods of time), being in the proper position to shift and utilize all the other gadgets required in a large truck, have left me with SEVERE CRAMPS when I drive old, improperly maintained trucks. For a long time, I dealt with my feet cramping, but standing and working out my feet, most of the time, got rid of those cramps.
However, recently, I drove the worst trucks I have ever driven in my life! All the cramping in my feet and legs became severe. I would wake up in severe pain. It was so bad that I compared them with bear down labor pains and I would cry out!
During this time, I did discover Magnesium 250 mg. I take it close to bedtime and believe it has helped in relieving the severe cramping. Also, quitting the activity that causes your severe leg cramping is a must. I still get manageable foot cramping from overuse while walking, etc.
In my case, the cramping comes from overuse of driving old and poorly maintained equipment. There could be other "overuse" causes like standing and walking for long periods of time. I still get that.
Am sure there are several other serious diagnoses for the problems you have described. I am not a doctor but after reading your list of test results, to me, it almost sounds like a potential combination of problems going on. Personally, I wouldn't overlook potential side effects from medications, in all of this. I wish you the very best in resolving this issue. Good sleep and low stress are essential to good health. Health issues can consume us, make symptoms worse, and over time and take a toll on our health.
Just FYI, something to be aware of, when I had my lumbar mri, Tarlov( meningeal) cysts showed up at my sacral bone but the radiologist didn’t even mention it. You can see it glowing large on the images but evidently they are taught in medical school that these are incidental findings and should not cause any symptoms.
Recently, in the past few years there is growing supporting evidence that these have been sometimes found to cause sacral and leg pain and bowel and bladder dysfunction
https://tarlovcystsociety.com/more-than-just-a-cyst-understanding-comorbidities-in-tarlov-cyst-disease/
I have buttock, groin and pelvic pain, bowel and bladder dysfunction and pain and weakness in both feet and legs. It’s worse when sitting on the toilet at night, evidently they can swell when lying down and cause symptoms when you go to sit.
In just a few minutes my feet go numb and when I stand I need support and then heavy pain sets in but resolves gradually in about 20 minutes. The aching and weakness is otherwise general and I don’t typically notice it too much. With chronic pain I hurt all over all the time so the pain fluctuates a lot. Walking is very challenging. I usually don’t walk far and when I need it I use a wheelchair.
I have a neurosurgeon referral at Vanderbilt as that’s my nearest expert med center.