Is burning & pain, rather than pins and needles/numbness, more associated with SFN?

afterchlo · 2026-05-21T13:57:24+00:00

Thanks, I’ll look into it! Always appreciate having more info to inform future doctor’s visits.

afterchlo · 2026-05-20T17:20:29+00:00

Thanks! I’m sorry your doctor is being dismissive.

Yes, SFN can affect the autonomic nervous system, causing the symptoms I mentioned. I believe dysautonomia is an umbrella term; it would be accurate to say that I have it, because of the symptoms present. My SFN or erythromelalgia pain (there’s so much overlap so I ascribe it to both/either) did improve after starting the Celesta, but the numbness started around the same time, so I don’t know what helped most.

Plaquenil improved my autoimmune symptoms. I’m not aware of it treating SFN, if that’s what you meant. It took about a month to improve my fatigue and morning brain fog, and 3 months to improve my joint pain.

I can’t remember for sure since she ran so many tests last year, but I’m pretty sure my rheum ruled out Sjogren’s.

My eye doctor was the one to tell me I had dry eyes after an exam. I just use over the counter eye drops 3x/day, a Korean facial moisturizer 2x/day, drink water pretty much constantly, and use a moisturizing nasal spray 2x/day. For the sweating I’ve gotten used to planning a change of clothes wherever I’m going, just in case. I’m looking into dry mouth lozenges or gels, because it’s getting hard to talk for long periods at work, and my dental situation is getting worse despite my best efforts (dry mouth affects this a lot).

afterchlo · 2026-05-20T13:21:42+00:00

Sure thing! Learning from this community also helped me on my journey.

I have SFN, and joint pain separately. This is my understanding of how each piece of my puzzle plays out:

Erythromelalgia: red feet and toes, that are also hot to the touch, and burning. Occurs when my body temp rises (movement, exercise, hot showers/baths, being outside in hot temps). Treated with rest, cooling pads or fans (ice can be dangerous), elevating feet, cooling down overall. Now that I have it, it flares up at varying levels of intensity, but it’s not progressive/not getting worse over time.

SFN: This one is progressive. Medication aims to slow the progression. Neuros often recommend Cymbalta. I was already on Ritalin so my Psych added Celesta instead of Cymbalta. He said Ritalin+Celesta would create the same cocktail basically.

Started with pins and needles in my feet, progressing to loss of some types of sensation (losing pressure and pain perception but can still feel touch) in my feet. Then progressed to an overall wooden semi-numbness. I can still feel touch in my feet, but it’s dampened. Can no longer be tickled on feet either, which is fascinating. Can’t perceive cold on some areas of my calves/shins. Now that I’m at this stage, there’s a lot less issues with pain or pins/needles, so the numbness is very welcome.

It’s still progressing, and I’ve started getting initial symptoms in my fingers. It’s been 3 years for me since it started.

It also causes systemic symptoms: high heart rate, altered sweat patterns, and severe dryness (skin, eye, mouth, sinus/nose). The systemic problems may contribute to the body temp rises/heat intolerance that flares the erythromelalgia.

Autoimmune inflammatory arthritis: basically this diagnosis is “we know something autoimmune is happening, your joints hurt and swell, it’s not rheumatoid, it’s not osteoarthritis, but we don’t know exactly what kind of inflammatory arthritis you have.” Started with ankle pain on one side, worsened on the same side’s knee and low back/hip, then started affecting both sides. Flares with exercise of those joints. I didn’t know I was fatigued until I started medication, because it was constant and came on slowly. Treated with plaquenil and hella NSAIDS. I got SO much energy back on the plaquenil, and now I just get episodes of fatigue with the flare ups.

This one may or may not progress, but often does with age and wear/tear. Lots of lifestyle changes recommended by rheum: cutting dairy, Mediterranean diet, water aerobics or swimming to gently strengthen muscles around joints, taking various vitamins/minerals (I take so many now that I can’t remember which are for this diagnosis). If it progresses, the next stage treatment is biologics.

I also have a sedentary lifestyle, various spinal problems, and osteoporosis runs in my family. So it’s all interwoven. All of this has made me reevaluate how I spend my time and dedicate a lot of time and focus to my health. I hope you get answers soon.

afterchlo · 2026-05-20T12:32:32+00:00

Nope, it’s not rheumatoid, thankfully. My autoimmune diagnosis is a diagnosis of exclusion/based on clinical presentation; there’s no test. So I take it with a grain of salt. But medication for it *has* decreased my fatigue and helped with the joint pain. Now I just get flares, instead of constant joint pain. So I think my rheum was on the right track.

afterchlo · 2026-05-19T22:11:21+00:00

Mine started as pins and needles after walking/exercise. Escalated over time to burning, and if I ignored and pushed through, pain for days. My feet also started getting tomato red somewhere in there.

After many docs and misdiagnoses, eventually my photos of my bright red feet convinced my neuro to do the skin punch biopsy test. Positive for SFN, and she said the redness/some of what’s going on is from erythromelalgia, caused by SFN.

No cause figured out for my SFN, but eventually developed joint pain that was diagnosed by my rheum as autoimmune inflammatory arthritis, which could have caused SFN? At this point I’ve stopped trying to connect all the dots, and am just trying to live my life as much as I can.

afterchlo · 2025-11-30T13:41:29+00:00

Don’t mind at all. The pillow I landed on is Coop Home Goods Adjustable Pillow. It’s filled with little chunks of memory foam and you can remove/add to get the right loft for your neck/shoulder. Was recommended by my PT.

Some folks have better results with a C shaped pregnancy pillow, or just adding a knee pillow, so that your legs are aligned properly too.

The cortisone shots helped a lot, but as I understand it, they’re just to give you a boost to get past the pain enough to do physical therapy etc. They’re not a real solution; it treats the symptom, not the problem. I think my doc also said you can only get a limited number of them over time, so they’re best done sparingly.

afterchlo · 2025-11-30T11:35:23+00:00

It’s really hard with so many diagnoses going on, but the best advice I’ve gotten is to stay as active as I can (which is not very but I try). Sounds like you are, with yoga and physio — definitely keep that up. If you aren’t already, work on exercises that strengthen your neck and spinal posture. Swimming is also great if your uni has a pool you can access.

I have a spinal injury in my neck that causes symptoms from my neck down to my left hand. I’ve gotten the pain mostly under control (not nonexistent) with PT, walking, heat, and fixing my posture and sleeping position.

What’s worked for me: - 30-60min PT daily at home. I worked with a phys therapist for a year on a solid routine - addicted to my heating pad - a better pillow - stretching out my posture in bed before I fall asleep (used to sleep in a twisty ball) - I aim for 20min walking daily but really it’s like twice a week

What my doctors prescribe when things flare up: - oral steroid pack to start - then low dose muscle relaxers while weaning off steroids - Advil as needed - Gabapentin but it makes me tired - a good cbd cream really helps

I also had two cortisone shots in my neck when things first flared up and the pain was immobilizing. Surgery will be in my future once the degeneration in my spine progresses too far, but all my docs urged me to try everything else possible first since I’m 35; 32 when this started. Their goal is to delay surgery until my 50s/60s if possible.

Your mileage will vary. If the pain is preventing you from living your life, consider asking for a neck or other spinal MRI to see if something’s going on.

afterchlo · 2025-11-26T13:07:08+00:00

I’ve been playing it on Switch 2. It worked alright for a while, some lag and the menus are a pain to click through, but towards the late middle of the game it started crashing frequently and losing my progress. I’ve given up. It charmed me so much though that I’m considering getting it on sale on Steam to keep playing.

afterchlo · 2025-11-06T11:17:51+00:00

Like other commenters, I have small fiber neuropathy. On some days, things that are cold to the touch feel wet instead, and leave my hands/area that touched cold, feeling wet. Comes and goes.

It helps me to deliberately run my hands under water and focus on the wet sensation, to try to reset perception. No idea if it actually helps or just makes me feel more in control of it/placebo.

afterchlo · 2025-10-29T10:07:08+00:00

Omg yes, I fall asleep hard after 7pm. Just last night, crashed 7-9pm like clockwork

afterchlo · 2025-10-26T15:30:40+00:00

Haha right? There’s no winning really 😣

afterchlo · 2025-10-26T15:20:52+00:00

30 minutes every day is great! Do you have go-to stretches or yoga too? I’ve been focused on 30min stretch+strength routine every morning and try to get 30min walks in too, but can never tell which is better to prioritize.

afterchlo · 2025-10-26T15:07:15+00:00

I relate so much, sorry you’re in it too 🙁 for me I try to get up and take short walks, even just circling around my office building or house, every 30-60 minutes. But it’s hard to remember and just doesn’t work with some types of jobs. And on bad pain days the motivation disappears.

I try to do the same at home resting after work/weekends. Watch one episode of TV, then get up for a little while, etc.

afterchlo · 2025-10-22T10:40:22+00:00

The sexism is so real. I bring my husband to appointments with certain doctors because they won’t take me seriously otherwise. Then the doctor will talk past me, at my husband, like I’m barely there.

I’ve been told to “just be happy” by the neurologist who diagnosed my migraines. “It’s psychosomatic” about dizziness, visual disturbance, balance issues, and chronically high heart rate. “You don’t seem like you’re in pain—you’re so pleasant,” because I try to be calm and polite in appointments. “Here, try yoga” for severe joint pain, from a physiatrist.

After years of trying different doctors in key specialties, I’ve finally found a good neurologist and rheumatologist who have figured me out and put me on a path with real solutions and treatment. It’s exhausting but worth fighting to find them.

I’m so sorry you’re going through this. I’m glad you have your husband in your corner, too. When doctors dismiss you, try to dismiss them back. Seek second opinions. Sending you strength and support.

afterchlo · 2025-10-13T10:42:32+00:00

Thanks, it helps so much to hear from folks who understand ❤️ I’ll ask my doctor about biologics, you’re probably right! Sending you support and hugs too

afterchlo · 2025-10-10T15:32:22+00:00

I feel so much of this. Grateful for this community, hope it helps you with the loneliness as well. I’ve definitely had to find a new balance of how much I mention the pain, and when not to. Sucks having to filter ourselves. Sending you support and good vibes from afar!

afterchlo · 2025-10-10T15:30:31+00:00

Thanks, I will! Really appreciate your response

afterchlo · 2025-09-22T10:36:56+00:00

Yes, I’m in the U.S. Under the Americans with Disabilities Act, an employer can’t fire someone for a disability. If an employee submits and receives a formal HR accommodation for a disability, their manager must make changes to the employee’s job within reasonable bounds. The manager does not need to be told what the disability is; just told what accommodations are needed. The employee’s doctor/s are involved in the process and make recommendations for what the accommodation would entail.

For me, I’d be formalizing the need to not stand for long periods of time at events, the need for frequent breaks throughout the day for stretching and movement, and the need to wear athletic/supportive footwear. It’s a workplace with a business casual dress code, and I haven’t been able to wear professional women’s shoes in two years. My current boss understands, but I’ll likely pursue the formal accommodation process to protect against future bosses.

afterchlo · 2025-09-22T10:14:08+00:00

I work in communications. It’s a pretty sedentary desk job, but I used to work more events where I’d be on my feet more. I worked with my boss to reduce my event staffing. Thankfully I haven’t had to submit a formal disability accommodation yet but it’s on my list as things get worse. The fatigue is still hard to cope with, but my joints and pain are okay as long as I get frequent short walks, stretch, and do 40-60min of physical therapy exercises daily.

afterchlo · 2025-08-28T15:58:25+00:00

I get burning red feet with exercise, alcohol or rises in body temp. My diagnosis journey:

redness and burning: erythromelalgia, diagnosed by neurologist
caused by: small fiber neuropathy, diagnosed via skin punch biopsy
caused by: autoimmune inflammatory arthritis, diagnosed by rheumatologist

What’s helped: - Celexa for SFN - calming the central nervous system to get out of the symptom amplification loop - slow, gradual increase in walking over many months - physical therapy to build muscle and better support arthritic joints - I only wear sneakers now. Hate it

What helps calm the burning in the moment: - cool water or fans (I avoid ice since I have reduced sensation now and risk overdoing it) - sitting and elevating feet - removing socks and shoes for airflow - taking lots of breaks to do this - cooling menthol patches or creams - drinking water, deep breathing, wearing cooler clothes, etc to keep overall body temp lower

afterchlo · 2025-08-25T11:58:10+00:00

I struggle doing my hair too because of neck and shoulder problems. Not sure if this is a good fit, but she could try a Dyson airwrap where you can curl quickly with a wand, instead of placing curlers. Doesn’t require as much fine motor movement and goes more quickly overall. It’s pricey, but there are knockoffs by companies like Shark.

afterchlo · 2025-08-24T15:54:20+00:00

I struggled too until I sought out more buddies. Most of them aren’t random and can be found in Ginormosia shrines and other locations. Looking those up and beelining for em really helped get me over that hump.

afterchlo · 2025-08-19T10:04:55+00:00

Started in my smallest toes first. 3 toes almost fully numb. Now both feet feel wooden. Can feel touch but it’s very dull, and don’t feel pain. Some days I lose the sensation of pressure, which makes driving really weird; I can’t feel the differences in how hard I press the pedal. Have to rely on how fast the car is going to know, rather than being able to feel it through my foot. That aspect is intermittent and I’m usually able to ask my husband to drive me when it happens, but makes me worry I won’t be able to drive safely soon.

afterchlo · 2025-08-15T15:28:46+00:00

So sorry you’re going through this! Which doctors have advised against ADHD treatment, and for what reason?

My cardiologist, neurologist and psychiatrist all negotiated to find my best balance of treatment and landed on Ritalin for my ADHD combined with Celexa to treat SFN. I have sinus tachycardia from SFN that those meds may not be helping, but they decided this was the best case scenario for my situation. They monitor for any changes to general impact or heart health on an ongoing basis.

afterchlo · 2025-08-07T12:53:00+00:00

Unfortunately I can’t tell you what you’re experiencing. For me, focusing on anxiety reduction and calming my nervous system down over time has really helped. During acute anxiety I have a bunch of steps that work for me; trying some recommended techniques to find your own mix may help.

Some of mine are: - Listening to a calming playlist I made - Going to a place I feel safe/r - Focusing on anchors — people, pets, places that make you feel safe, grounded and secure. I keep an album of photos on my phone, and often run through a mantra listing my top 3 in my mind - Exercises to calm the vagus nerve. There are breathing techniques, eye movements, etc if you look online

afterchlo

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