Constant burning, pain, coldness, and muscle spasms... help!

Greetings,

I am a 24-year-old male. When I was 21, I sustained an injury to my left knee—specifically a patellar subluxation, where the kneecap momentarily slipped out of place during a fall before popping back in. The knee became swollen and incredibly painful. Following physical therapy, I underwent arthroscopy two months later to clear out a loose fragment within the joint.

That is precisely where the secondary complications began. Just as the knee pain subsided and the swelling disappeared, a sensation of burning skin emerged in the calf of the injured leg, accompanied by muscle twitching. This burning, pain, and twitching then migrated up to my thigh, spread to my other leg, and even moved to both feet. My legs burn intensely, ache, and the muscles twitch uncontrollably. Eventually, this twitching expanded to my entire body—affecting every muscle from my eyelids and cheeks to my neck, back, shoulders, arms, abdomen, and legs. This persisted for about two months before the burning sensation migrated to my arms, at which point I developed allodynia, where even the touch of clothing becomes unbearable.

I have been navigating a period of immense stress and depression because I feel utterly lost regarding how to proceed. I consulted my primary physician, who referred me to a neurologist. I underwent an EMG to check for neuropathy and an MRI of my head and neck to rule out multiple sclerosis, but everything came back normal. I also had blood work done, including autoimmune markers like ANA, which were also unremarkable.

After nearly a year of endless testing, blood draws, and bouncing between private specialists and public clinics, I reached a breaking point and decided to give up.

My symptoms remained static until, after a few months of giving up, a new issue emerged: my hands and feet became perpetually cold. Regardless of what I did or how high the temperature rose, they stayed freezing. I also started experiencing bouts of acid reflux that would flare up for a few days and then vanish for a month or more. Furthermore, the skin on my fingers and palms has become shriveled; my veins are highly visible, and frankly, I don't recognize myself anymore.

I returned to my doctor regarding this excruciatingly cold pain, and she referred me to a specialist at the Mayo Clinic. The doctor there informed me that I have Raynaud's. He recommended that I re-test my ANA levels. I did, and once again, the result was negative.

I have managed to secure an appointment with a rheumatologist at the Mayo Clinic, but the earliest available slot isn't until October 2021.

So, that is the summary of my rather complex and grueling three-year struggle. If anyone here has experienced anything similar, I would be profoundly grateful for any advice or recommendations on which specialists to contact to help expedite this process.

TL;DR

Three years ago, I injured my knee. Since then, I have dealt with neuropathy-like symptoms, full-body fasciculations, chronic fatigue, and Raynaud's. All diagnostic tests—including EMG, MRI, and blood work—have come back normal, and my ANA remains negative.

Hello,

The sheer number of symptoms you’re describing, coupled with that prior knee injury, fits the profile of complex Regional Pain syndrome quite well.

Based on what you've shared, I wouldn't expect to find evidence of a systemic rheumatic disease, though it’s impossible to say for certain without a formal evaluation.

There is some excellent literature available on complex Regional Pain syndrome. One of the more comprehensive resources is this: Patient Caregiver Education: Complex Regional Pain syndrome.

Regarding the changes noted in the CCT, the question is whether we are actually looking at Raynaud's, since that disorder can present with similar findings. If you do have Raynaud's, the real question is whether those CCT changes suggest a primary or secondary condition, or if they are simply inconclusive. Given that your ANA came back negative, the likelihood of secondary Raynaud's is slim.

Taking all this into account, a rheumatology consult likely won't lead to a diagnosis of systemic rheumatic disease, but it is still important to follow through with it.

Maria Fisher46 said:Dear sir,

The extensive array of symptoms you’ve described, especially when coupled with your previous knee injury, seems to align quite closely with the clinical picture of Caregiver education : complex Regional Pain syndrome.

Based strictly on the details provided, I suspect we aren't looking at the hallmarks of a systemic rheumatic disease, though one can't say anything with absolute certainty without a proper physical examination.

There is a wealth of excellent literature available regarding Caregiver education : complex Regional Pain syndrome. One particularly insightful resource on the subject is this: Patient Caregiver Education: Complex Regional Pain syndrome.

Regarding the changes noted in your nailfold capillaries, the question arises as to whether we are truly dealing with Raynaud phenomenon, given that this disorder can present with remarkably similar vascular patterns. If you do have Raynaud, the crux of the matter is whether those capillary changes suggest a primary or secondary condition, or if they remain indeterminate. Since your ANA test came back negative, the likelihood of secondary Raynaud is relatively slim.

Taking all this into account, while a rheumatology consultation might not ultimately yield a diagnosis of a systemic rheumatic disease, it remains an essential step to take, naturally.

Thank you for the response. I have indeed read up on CRPS, but my symptoms seem to be pervasive—affecting me from head to toe—rather than being confined to the left leg where the initial injury occurred.

The physician who performed my nailfold capillary examination mentioned that my Raynaud is mild; he suggested I undergo preventative testing, though he noted that treatment isn't typically required unless things escalate. If my condition worsens, I have the option to request calcium channel blockers. I have appointments lined up with both a neurologist and a rheumatologist in November, but facing a five-month wait is quite taxing, which is why I turned to this forum—primarily in the hope that someone here has navigated a similar path.