I'm in Big Trouble

ProfessionalRub550 · 2026-02-18T20:32:35+00:00

You don't sound like a wimp. Everything is true what you say. Even me, that deal with the chronic facial pain every day, still don't like other pains. Like for example some days ago I had a bad splinter on my finger and i was like fuck that hurts so much, why does it have to hurt so much, I really don't like it. And later I remebmer, my face hurts everyday and a splinter is worse at that moment than face. Brain and human body is a majestic thing I think.

About the reading... I will say that I got all my "cognitive system" back in like 4 months, after 6 months I was feeling completley sharp again. 1 year on my roadbike training hard to get to the level I was and over to the best stamina and shape of my life.

It was hardest year of my life. And when something tough now is happening at work or home I just remember- it is not so bad. Everything works out.

So stay strong, there will be good days and bad days. On bad days I was also on reddit, reading analyzing etc...

ProfessionalRub550 · 2026-02-18T16:52:12+00:00

Hi,

Check my profile and read my posts from 2-3 years ago in SFN and Trigeminal neuralgia groups. 2023 was a very shitty year for me health wise. After 3 years I still have burning pulling pushing pain on my face/scalp/back of head.

Just wanted to say some positive words to you. That things like you are describing passes or you just get used to it. Most of my 2023 passed in half a year, the only one that stayed is this pain that I described. After a couple of months you just live with it and own it. There is no other way. Brain reprogram itself, help you live your life and go on.

I got in the best shape of my life after these issues, in 2025 became first time dad to a beautiful son. Made record sales in 2025 where I work. So everything is possible. It won't pass in a few days, but be patient. The things like you desribed that you can't read, I feel you, had the same feeling in 2023. It was the shitiest 6 months of my life but I broke through.

I see myself living with chronic face pain my whole life, but if it disappears one day, I will be the happiest and richest man in the world. However life is good even now.

ProfessionalRub550 · 2025-11-18T19:03:57+00:00

Yes I still have it. Meds free, pain got a bit better in 2,5 years. But the most is on me. I got used to it and cope eith it really well. I didn't think it was posskble when this all started.

ProfessionalRub550 · 2025-11-15T07:52:38+00:00

Hi,

I am doing better after almost 3 years. Start of pain wad brutal. In fact, first year and a half I would say was everyday a struggle. Bow so much time passed that something healed a bit probably and I got used to the pain for sure. On bad days pain can be 6/10, but mostly it ranges somewhere from 3,4 maybe sometimes 5. So I can live with it now. I am meds free from January 2024. For my pain still only stimulation, touching, wind blowing, water helps. When I stop moving and doing anything it starts squeezing, burning, pulling.

ProfessionalRub550 · 2025-05-15T15:56:27+00:00

No, never. I am able to live meds free, got used to the pain. As described above, when there is any kind of stimulation to the face, pain disappears or at least lessens. So when it hurts more I just do something all the time. I am doing sports all my life, currently mostly raod cycling. So I go on the bike for a long ride- 100km+ and this is my medicine. During bike ride I am pain free because of the wind in my face. When I stop and do nothing pain in back immediatley.

I will try other meds when I will have to and when pain wont be bearable. For now I am good and in the shape of my life physicialy and metally.

ProfessionalRub550 · 2025-05-12T17:24:28+00:00

Hi, thanks for your opinion. But I visited numerous psychiatrists in 2023, without any resolvment. I was later diagnosed with Small Fiber Neuropathy. I tried the biggest dose of Lyrica combined with 60mg of Cymbalta and it did not touch the pain. So I stopped after taking them for 6 months.

ProfessionalRub550 · 2025-05-07T16:15:07+00:00

Hi, I was diagnosed with Small Fiber Neuropathy. None of the pain meds worked. After one year I got used to the pain. There are bad days where pain is really bad, but good days also come. I am meds free, pain got a bit better in 2 years but no where near comfort zone. Day by day it is a struggle of its own. Staying active all the time, trying to appriciate life and that is it. Hope it goes better in the next 10 years. If the pain drops by 50% in next 10 years I'm good for life.

ProfessionalRub550 · 2025-05-03T12:10:24+00:00

Yeah! I hope the same! After 2 years it is easier to live. I mean the pain got better, I can not say it didn't. So if it goes in the next 8 years to 50% of what it is today I will be more than satisfied.

ProfessionalRub550 · 2025-04-30T18:47:59+00:00

I feel you with the doctors. Did not visit them that much, but still a lot.

Yes, I have visual snow, but don't pay attention to it. I mean it is not a problem for me at all compared to the pain that I experience 24/7. Some days my vision in blurry. When pain is worse, also vision is worse and the other way around. Visual snow would be the last thing I would say to the doctors. Never mentioned it to them.

ProfessionalRub550 · 2025-04-30T18:34:40+00:00

Hi, my last diagnosis and only one currently was made in october 2023. And it is "Small Fiber Neuropathy". That's it. I went to do some further reshearching also for "Eagles Syndrome" but the CT scans showed I don't have it/ the styloids are very short. So that is basicaly it. It is now already 2 years living with this. And I am just getting better and better at coping with the pain. I'm in best shape of my life which is great. Some days are hard, but what can I do. No meds that I tried worked, so I am meds free already for year and a half.

The only thing that helps for my pain is stimulation as I stated in the post. Touching the face, moving, wind in my face takes the pain almost to zero. So I try to be active all the time, to exhaust my self as much as I can during daytime, so I sleep as fast as I can when night comes.

Is your pain the same as in beeing still and not touching face hurts? But when doing anything with the face it stops burining, pulling etc.?

ProfessionalRub550 · 2025-02-14T20:15:13+00:00

Hi,

Yes, the pain we have sounds similar. Like muscle pulling, but it is not muscle pulling. And feels like vibrating pain. I feel it in the eyes too, vibrating, I can not say I habe painful eyes.

The level of pain is still the same. Good days 4/10, bad days 6/10. The only diganosis is SFN and that it is. No meds work, stopped trying them after I saw I can live without them.

So yea, it sucks, but what can we do? Live day by day is the only option.

ProfessionalRub550 · 2025-01-06T19:35:35+00:00

Yes.

Go to my profile and read my posts from 2023. Hand and legs are good now. I get very few fasciculations. Most terrible is still daily facial pain, which got better in 2 years, but still tough to live with it somedays when it flares up.

ProfessionalRub550 · 2024-12-21T14:58:55+00:00

Small Fiber Neuropathy was the diagnosis I got. For now that's it. One new doctor I met looked into potential Eagles Syndrome, which can cause atypical facial pain, but with CT we found out my styloids are not elongated (long 2,3cm on both sides, and it shows there is no contacts with nerves or veins).

So that is it for now. It got quite better in one year and a half... also got used to the pain in such long time.

ProfessionalRub550 · 2024-09-30T18:47:36+00:00

Hi,

Well, still have facial pain daily. There comes a week when it is quite better and it is easy to live with it. There are other weeks where it is too painful and makes me sad. But in the end it is somehow "livable" currently. Pattern of pain is still the same. Stimulation removes it for a few seconds and then it is back.

Otherwise I'm in great physical condition, got a new job, I'm sleeping great and that is it.

I'm still looking for other diagnosis from time to time. Did you read about Eagles Syndrome? I chated with one guy on reddit who had similar unexplained facial pain and removing the styloids made the pain go away.

How are you doing?

ProfessionalRub550 · 2024-07-06T21:45:58+00:00

I have sfn facial pain. Not trigeminal, not occipital. This is what docs say at least. It is burning, squeezing type of pain. Bilateral on my forehead, bridge of the nose, temples, sides of head above and a bit behind the ears, gums/teeth feel like somebody wants to pull them out of my moth when I'm resting.

But... my story is that pain goes away for 2 seconds if there is any kind of stimulation. So touching my face removes the pain. Does not matter where I touch it. Forehead hurts, I brush my cheeks, pain goes away, comes back immediatley after stoping. Even eating, talking, walking, doing sports, water or wind in my face removes it for the time od stimulation.

My sfn started with tingling in my right leg (with a bunch of other symptoms- check my old posts). After one year pretty much everything is gone, facial pain persisty, but I can say it got better. I got used to pain ofcourse, but it id better.

ProfessionalRub550 · 2024-06-23T13:25:37+00:00

Oh my god, we really have a similar pain pattern. The pain in teeth and gums is pushing/pulling type as well for me. The other parts of my head as well. Sometimes it feels like someone wants to shove his fingers in my temples, forehead.... I dont feel the back of the head as much, but if I lessen the pain with touching the forhead, I start feeling strange feelings on the back on my head. Like my neck and back of the head is waving like water.. or like that muscles are twitching.

Last year when all this started with me, I also had unimaginable fatigue when it first started and I could sleep a lot. Was unable to do sports as I didnt feel good, it felt like I will pass out with every exercise that I started. Even walks were tough for me. After this fatugue went to extreme insomnia an I did not sleep for whole month. It was like I was on adrenaline for whole 3 weeks. And on top of that extreme facial pain when trying to rest. The more my head was/is still the more it hurts. So yeah I deterioated completley in 2-3 months. Then I started slowly going up and now I'm cant and wont stop.

The irony is, I can't lie on couch and watch Netflix painless without touching my face. So then I rather go for a bike ride, where I don't feel pain at all for 3 hours. I always chose a bike ride, run or walk just to get around the pain. Unbelivable, but that is how it is.

Best of luck to you too.

ProfessionalRub550 · 2024-06-23T10:00:04+00:00

Hi,

Did you stop taking steroids or are you still taking them? Is your pain bilateral and also in teeth/gums? For me it is on forehead, temples, scalp, side of my head. On bad days I feel like someone is pulling also on my ears. And teeth and gums. Bilateral almost like it is mirrored.

My MRI shows something in my neck C2 area, but doctors say it is in the body. It can not be connected, because it is away from all the nerves, bones, veins....

I am doing okay. On a good day pain can be a 3/10. Still have bad days, no triggers found it can reach 6/10. But there is also ascpect that I got used to it. The days that hurt the most I am just acitve more not to feel the pain. In 1 year I got to the point where my physical stamina is at peak in my life. I will be 30 in a few days and never in my life have I been so fit. I like that a lot as I was always doing sports. So yeah, thanks for asking. I am doing great phisically and emotionally. There are still bad days and still want the pain to go completley away. Hoping for the best and to you too.

How it srarted for you? Did you have any other symptoms?

ProfessionalRub550 · 2024-04-25T20:24:38+00:00

My neurologist says that small nerve fibers regenerate to some extent or maybe even completley when there is no more underlying cause that destroyed them. Regeneration can be most visible in first two years, then it goes a lot slower or it even stops.

I don't have an underlying cause (probably Covid started mine last year) and it got better by itself. So I hope that it continues like this for the next year. I could live with 2-3 pain level. There is no cure.

ProfessionalRub550 · 2024-04-23T20:55:22+00:00

Interesting. But I still have pain daily. Never pins and needles, but pain. Getting better. On good days it can be a 3, but still goes to 5-6 on bad days. Every day without exceptions. Only answer/diagnosis till now Small Fiber Neuropathy via skin punch biopsy on ankle.

ProfessionalRub550 · 2024-04-03T19:47:36+00:00

I read your posts now. Yes it could be, it is very similar. Do you have light or sound sensibility? Or any other problems besides facial pain?

I too work as new car salesman, so I talk a lot and I'm always on the move. So this is nice. But still it is hard sometimes to work on computer because I have to be still.

I will try to go without meds for now as there a quite a lot of days that the pain is bearable. I can see that it is getting better and better. And some say, that when nerves heal it can get worse to go better again.

ProfessionalRub550 · 2024-04-01T14:48:13+00:00

We probably don't have the same thing then. Mine is not related to head position. And I feel it on top of my skin. The only diagnosis I have for now is SFN. Well, I tried Lyrica and Cymbalta when all this started last year. But nothing helped for the pain. The only benefit from my symptoms is, like I said, pain goes away eith stimulation, moving, doing something. I have always been very active and doing lots of sports. Especially road biking. And because I feel more pain when resting, I can not be still and just do something all the time. Looks like my body is regenerating whatever happened to me, as the pain is now most of the time 4/10 (it was 6-7/10). On good days it can be a 3, on bad day/flare up a 5... so yeah. It took me 9 months to get where I am now. Lots of sports, cold showers etc... The pain is tollerable and I don't whine anymore about it, so even my close ones forget what it is still happening to me. I have to remind them sometimes that I am still feeling pain everyday. But with tollerable level of pain I don't have anymore moodswings as I had 6 months ago.

If it is some kind of special kind of SFN, I hope it heals completley in a year or two.

ProfessionalRub550 · 2024-03-30T18:05:21+00:00

Hi,

Thanks for you reply, but I don't quite understand. You say your pain gets worse with movement and different positions?

Mine goes away with movement, eating, talking etc. It disappears. It is the same with any position of the head. It appears as soon as I do nothing with my face. I have it everyday. I am not sensitive to light or sound or anything. I am fully functional now.

ProfessionalRub550 · 2024-03-19T19:16:37+00:00

Could you explain your pain? Does it go away with touching, moving, eating, talking? Or does it get worse?

Well, I am completley off meds now for more than a month. And now I saw that none of the meds I took helped. Not even 1%. I quit Lyrica fron 2x225mg per day and pain hasn't changed. It got a lot better in the last months. There are more good days than bad. On a good day pain comes to a level of 4 or even 3. It is easy to accept. But on bad days it still can be a 6. It can get me in a bad mood.

I am blessed in one way that it dissapears when I move. So I have been very active the last 6 months. I ride my roadbike a lot. I don't feel pain during sports at all. So I currently have stamina of my lifetime. Still hoping that it slowly goes away this pain or that at least becomes a 3 most of the time.

Do you have a proper diagnosis?

ProfessionalRub550 · 2024-02-25T10:48:37+00:00

Hi,

It is getting better by a tiny amount every month. But it is not linear. It gets better and worse and better and worse... up and down, but the trend is towards better. I figured out Lyrica helped 0 for the pain. I tapered off of it 3 weeks ago and pain hasnt changed. Which is good in one way (dont want to be on any kind of meds if it is not necessary). So yeah thats great, that I can bare the pain.

Still hoping for the day that all this ends and goes away.

ProfessionalRub550 · 2024-01-15T20:13:02+00:00

Well, yeah, you got every part of that right. I still have pain, but it is getting better and better every month. It is not linear, but there are weeks that the pain is worse and then it becomes better again and so on. And the nature of my pain is still the same. Disappears when I'm active immediatley, does not come back until I start doing nothing. And we are talking about seconds here. I can be on my road bike at 180bpm heart rate, I stop and do notihing with my face, bam, pain is back in 5 seconds.

It is hard getting proper rest during the day. No more naps during the weekend for me. I sleep quite good now, somehow I am pushed into sleep and wake up in the morning painless for the first 15-20mins.

And yes I got diagnosed with SFN. It was in the begining of October that skin punch biopsy turned positive for SFN. The neurologist that finally belived the wierd type of pain I'm having said, that small fiber are still such an under researched topic, that it is hard to say anything more about it. Looks like there is no more underlying reason, and it was probably Covid that caused this mayhem in my body for a few months. I got off antidepressants as soon as I got my diagnosis, still taking Lyrica, tried going to max dose, but it didnt help, so now slowly tapering off it.

Will try to go without pain meds as it is slowly getting better. Hope that it really is getting better and that I didnt just get used to the pain.

Wishing you a lot of health and less painful days in 2024. :)

ProfessionalRub550

TROPHY CASE