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.
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.
boldstag58 said:Alright, one last question: is it actually possible to experience every single symptom associated with SFN without actually having the syndrome itself? Best,
Well, if that were even a possibility, they’d have to come up with an entirely different name for whatever that other condition is. At the end of the day, all our symptoms point directly to nerve damage. It's like trying to describe a broken engine without calling it a mechanical failure—the symptoms are the reality. The only silver lining we can really pray for is that whatever is happening isn't progressive, and that it eventually just hits a plateau and stops right where it is.
Every single piece of information I’ve shared is accurate, sourced directly from doctors here in the States as well as specialists abroad. Everything prior to 2010 was essentially just an experimental phase—doctors were essentially playing detective, trying to sniff out potential causes. Since those breakthroughs in 2010, we haven't seen any real progress. Sure, they've identified autoimmune and non-autoimmune triggers, but there is still a massive, gaping hole in our understanding regarding the 70% of patients who appear perfectly healthy in every other medical aspect yet suffer from SFN. As for the timing of symptoms? Honestly, it doesn't mean a damn thing. It makes no difference whether it’s 3:00 AM or 3:00 PM; the pain is relentless regardless. None of that data is actually useful. If you look at the countless forums and Facebook groups filled with people living with SFN, everyone describes the exact same hellish experience. We’re talking about people with diagnosed severe SFN whose fingers are visibly shrinking, who struggle to distinguish heat from cold, and who might even show a normal QST or a normal initial biopsy—only for subsequent biopsies to reveal the progressive loss of nerve fibers. In my view, the gold standard for a definitive SFN diagnosis is three consecutive biopsies over the span of a year, where each successive test shows a further decline in small fiber count. We can try to comfort ourselves all we want, but I didn't start this thread just to vent. My goal is to find someone who can help me get this documented officially. I need it in black and white—including that specific photograph they include in the report—proving that I have neuropathy. I need that paper trail so I stop looking like a lunatic to everyone around me, and perhaps more importantly, so doctors might actually take action once they see the physical evidence. Right now, I'm just stuck dealing with horrific symptoms while the rest of the world looks at me, sees nothing wrong on the surface, and fails to grasp what I'm going through. It is profoundly tragic.
boldstag58 said:But what happens if you eventually get a biopsy and it comes back negative? I know there are people who exhibit all the classic symptoms of SFN, yet not a single test—not even a skin biopsy—comes up positive. You’ve already gone through the QST, after all.
I am fully aware that this is a possibility; in fact, it's something doctors are quite aware of as well. I have a friend over in the Netherlands dealing with these exact same issues. He underwent a biopsy and the results were negative. He actually sent me a photo of the report, and it explicitly states that a negative result doesn't mean you don't have neuropathy. Instead, that initial result serves as the baseline for all future comparisons. This happened back in August of last year, and he's heading back for another biopsy this August. If the nerve density has decreased compared to that first baseline, then we have our answer regarding the neuropathy; if not, then there isn't one. Ultimately, his doctors told him they can't really offer much help because this entire field is still so nascent to them. You see, SFN isn't a standalone disease—it's a symptom. It wasn't even officially recognized as its own entity until 2010. Given that in over 70% of cases there is no identifiable cause, the chances of finding a "cure" are virtually non-existent. One simply has to learn how to live with it.
boldstag58 said:Look, it’s the same mess, just my version has been dragging on for five or six months now. To be honest, I’ve been dealing with a mountain of issues for about six years that everyone just chalked up to depression. I have stomach problems, urinary issues, and heart palpitations whenever I stand up (POTS), but for the last few months, the pain in my foot has become absolutely unbearable if I stand for more than two minutes. The pain shoots all the way up to my knee. Then there's the itching in my feet after walking, and lately, even my clothes feel irritatingly sensitive, not to mention this stinging sensation in my back. Regarding what you mentioned about numbing the skin—it isn't quite as straightforward as it sounds. I’ve done my homework on that, unfortunately. That skin wrinkle test actually has a sensitivity level nearly comparable to a skin biopsy. I tested it using EMLA cream and warm water; the area numbs up well enough, but I still have my suspicions about neuropathy. I'm not sure, though—do you deal with joint issues? My knees have been aching and clicking for years. I have hyperextension and hypermobility, along with stretchy skin, which makes me suspect I might have Ehlers-Danlos syndrome. Unfortunately, here in America, finding a specialist who can actually give you a definitive diagnosis is a nightmare. The crux of the matter is that most people living with that syndrome also suffer from small fiber neuropathy. Of course, I don't know if you're experiencing those specific symptoms. I honestly can't fathom how you manage to keep working through all of this; personally, I wouldn't stand a chance, even with anti-anxiety meds. In my area, the only place to get a small fiber neuropathy biopsy is at the Mayo Clinic under Dr. Sanja Milenković, though naturally, they aren't performing them right now due to the COVID situation. I keep holding onto the hope that it isn't neuropathy, even though I'm barely functioning.
I work because I have to; someone has to cover the rent and the utility bills. There's no other way. I possess a certain level of discipline and mental fortitude—animalistic, really—so I just grit my teeth and push through. That’s the plan, I suppose: keep going until the day I drop dead. If I give up, then I'm truly finished.
dhanurx said:Honestly, you all seem to be dealing with lung issues. All this talk of neuropathy, lupus, and whatnot... it can all be sorted out simply by standing up straight (shoulders back), maintaining proper posture in your head and neck, strengthening your core through weightlifting or running, doing some sit-ups, and practicing breathing exercises. Essentially, you need to ensure your abdomen and solar plexus aren't sucking up all your energy—through overthinking, dominance, or neuroticism—at the expense of your upper organs, like your heart, lungs, thymus, and liver.
I am truly sorry if you actually believe that conditions like neuropathy or lupus can be cured just by fixing your posture. Please, I beg you, step away from this discussion. Goodbye.
Immunologica confirmed that based on my description of the symptoms, it can't be anything other than SFN. But honestly, that wasn't even the main point. SFN is just a symptom in itself; until I figure out what's actually driving it, it doesn't much matter whether I sought testing here in the States or overseas. At this stage, I really just need to learn how to manage the symptoms themselves. And before anyone suggests stress is the culprit—it isn't. It’s not like you gain ten pounds overnight, and similarly, things didn't just take a turn for the worse in a single day. However, if you look at it in six-month increments, the difference is undeniable. Six months ago, the flares were much milder and less frequent, and twelve months ago, the symptoms were strictly limited to below the knees. The progression is clearly visible.
There's nothing left to do but hope it stabilizes sometime soon. I'd really rather not end up disabled before I hit thirty.
Dana Brooks3 said:It looks like the Mayo Clinic is handling this.
I actually reached out to this clinic back in November 2019, and they informed me that they weren't performing Small fiber Neuropathy searches at the time. Even though I pointed them directly toward that specific article, they claimed they still weren't equipped to handle it. They mentioned they were currently in consultations with specialists in Italy and were hopeful they could offer those services sometime soon.
Brenda Alvarez24 said:Harold Reed4, are you still hanging around somewhere? What ended up happening with the immunologist? I know that with certain autoimmune conditions, like Sjögren or sarcoidosis, you can end up with SFN. I assume that’s treated with steroids 🤷 🤔 ... my own polyneuropathy (granted, it isn't quite the same thing, but mine is linked to SLE, and Sjögren and Lupus are essentially cousins) vanished completely once I was on Medrol. But they aren't identical, and the real question is identifying the underlying cause, so this is just me thinking out loud...
You're absolutely right on all counts. Neuropathy often accompanies sarcoidosis, lupus, and Sjögren. My lab results haven't given the doctors enough clues to provide a definitive diagnosis yet, but considering my neuropathy is systemic—affecting my entire body rather than just being localized to my feet or hands—that specific pattern is most frequently linked to seronegative Sjögren syndrome. "Seronegative" essentially means the blood work won't show positive markers, leading doctors to easily conclude that Sjögren isn't present. In reality, the only way to catch it is through a salivary gland biopsy, which can actually reveal the presence of antibodies. In over 90% of cases, seronegative Sjögren manifests initially as neuropathy as the primary symptom; the classic signs like dry eyes, red eyes, or dry mouth only appear later, and by the time the blood work finally turns positive, the damage is often already done. I haven't undergone the biopsy yet—part of me is hoping something else will surface first that offers a solution—but I suspect I'll have to face that procedure sooner rather than later.
boldstag58 said:Harold Reed4 Reach out if you're still hanging around. I actually know of a straightforward little test—or so I've heard—that serves as a reliable way to determine whether or not you're dealing with Small fiber Neuropathy.
I’ve done some rather deep diving into this particular test, and I even decided to run it on myself. As it turns out, the test isn't actually an assessment of whether one has SFN, per se; rather, it measures whether there is autonomic neuropathy (dysautonomia) present, which unfortunately crops up in over 50% of SFN patients. My fingers and toes still "prune" up normally when submerged, but that simply means my autonomic nervous system hasn't taken a hit just yet. We shall have to wait and see how things evolve as time marches on.
I’m back. A bit late to the party, I suppose. I just wrapped up an appointment with my immunologist, Dubravka Bosnić, and her recommendation was to run more tests to rule out sarcoidosis and Sjogren. Well, the blood work and chest X-ray came back negative for sarcoidosis, and the blood tests (SS-A, SS-B) along with the Schirmer test confirmed it isn't Sjogren either. Her grand conclusion? A classic "we'll wait and see." In plain English, that translates to: "I have absolutely no clue what is happening to you," though she did mention that my symptoms point toward subcutaneous nerve damage. Unfortunately, here in the US, there isn't even a dedicated Small fiber Neuropathy search in our standard medical protocols. I simply nodded, played the part of the compliant patient, and walked out. I’ve cycled through at least 30 different doctors by now, and yet I haven't received a single shred of information that I didn't already know myself. Since I posted here last, things have taken a turn for the worse—and they aren't stopping. These flare-ups feel like a potential autoimmune reaction, yet I still lack a definitive diagnosis that would actually allow for any meaningful treatment. On my bad days, my eyes become bloodshot and angry, my muscles tighten like guitar strings pulled to the snapping point—twitching so violently I lose control of my movements—and the paresthesia and dysesthesia reach such agonizing levels that even the sensation of wearing clothes is unbearable. Honestly, some days it feels easier to just call in sick than to endure the torture of being dressed at the office all day. As for painkillers, I’m taking nothing. I’ve tried everything under the sun, and frankly, none of it touches this. The only thing keeping me somewhat sane and focused is Normabel, but even that occasionally fails to stop the intrusive thoughts of slathering lidocaine on my wrists just to make the urge to cut my veins go away.
I truly, sincerely hope that you wonderful people, and everyone you hold dear, never have to face anything even remotely like this.
The symptoms started about a year ago. In that short span, I’ve gone from being a fit, happy, and deeply in love kid—I'm only 23, after all—to someone whom my own loved ones have pushed away, a person who spends his nights scratching at the walls and weeping because this pain is quite literally indescribable.
I wish you all the best. If you need advice, I’m here. If you have any advice for me, I’m listening.
Karen Campbell59 said:Just head down to the pain management clinic; every major hospital has one, and they’re staffed by actual specialists.
Well, I did exactly that, and all they did was hand me a handful of medications that haven't done a single thing for me. Their big solution? They told me I need to track down an immunologist and figure out my next steps from there...
restlessbadger2 said:Have you tried reaching out to Dr. Bakran over in Palm Springs? From what I gather, he’s one of the leading specialists for neuropathy here in the States.
I did, actually. He referred me over to the Mayo Clinic, but I hit a total dead end there. It’s been a nightmare—it started with this burning sensation in my feet, then the tingling and stinging spread until it hit my entire body. Now, I’ve developed allodynia; even my clothes feel like they're made of sandpaper against my skin.
The odds are actually quite high that someone out of a million people here has dealt with a similar issue, which means there's likely someone who knows exactly where to turn. I'm not looking for medical advice or a lecture on what this condition actually is; I simply need to know which specialist or institution to contact. This forum is full of people living with the same thing who possess that specific knowledge. I’ve already sent a private message to some of you regarding this, though I haven't heard back yet. If you aren't in a position to offer actual guidance, I’d sincerely appreciate it if you didn't comment just for the sake of it.
I’ve cycled through Tramal, Lyrica, Neurontin, various antidepressants, and even anti-epileptic medications, yet I haven't seen even a 1% improvement in how I feel.
I’m experiencing this all over my body—paresthesia, an extreme sensitivity to the touch of my clothing, and all sorts of bizarre, painful sensations. To make matters worse, nothing I take for the pain seems to offer any relief at all.
Does anyone know where I can go to get properly diagnosed with this—maybe via a skin or nerve biopsy? My neurologist and I are both leaning toward this being the culprit, but unfortunately, the clinic I’ve been visiting in downtown Chicago doesn't offer these specific tests. It’s a bit frustrating because I seem to be checking off every single symptom on the list, one by one. I would truly appreciate any leads or information you might have!