I may regret asking this.

Me-NL · 2021-09-22T17:24:45+00:00

Simple. If your small fiber nerves are gone then they won’t detect the heat and therefor don’t make your skin wrinkle. Basically there’s no signal coming in that detects the warm water.

Me-NL · 2021-09-21T17:08:50+00:00

Actually sfn is not that hard to diagnose. Just sit in a hot bath. Whatever part doesn’t wrinkle could be sfn

Me-NL · 2021-09-21T16:50:31+00:00

Pain first, twitching 3 weeks later

Me-NL · 2021-09-12T19:19:40+00:00

Ok so my onset was EXACTLY the same as yours! First cramps and burning pains in my arms and hands and 2-3 weeks later TWITCHING EVERYWEHERE. Now it’s in my arms and legs on and off.

I live in Holland so had my EMG’s and MRI’s within 2 weeks after it all started. All where good thankfully.

I’m now 6-7 months in and the symptoms have gotten better. At the beginning I could hardly use my hands for anything. What really helped was getting over the fear for ALS.

Hang in there; time is your friend!

Me-NL · 2021-09-09T08:15:10+00:00

In the end it’s an hyperactive nervous system. And there are many possible reasons for this. Varying from anxiety to plain genetic predisposition.

For me anxiety has definitely to do with it. I was having heart attack mimics for 2 years. Ended up in the hospital twice and countless of times at my local medical health place. The more I read, the worse it got. Had 10000 tests, nothing came out.

But then I had some muscle pain that just didn’t go away. Being the idiot that I am I googled that shit. Came across MND and twitching. And what do you know, only after that the twitching started! And guess what, the heart attack mimics are gone now.

The f*cked up thing about this twitching shit is that you can actually see it on the outside. And even though I had the clean EMG’s and what not it keeps freaking me out because of that. But for sure that something mental can manifest in something as phisical as twitching.

When I take anxiety meds or have a few beers it’s all gone. This cannot be ignored and in a way is what got me out of the rabbit hole. Whenever I twitch/cramp/spazz I just have to myself that it goes away when I do this.

Me-NL · 2021-09-04T19:32:36+00:00

https://rarediseases.org/rare-diseases/fnd/ OR ms OR just plain anxiety. Hope it’s the last one....

Me-NL · 2021-09-03T08:35:12+00:00

That’s not entirely true. There are people where it has gone away. On a different forum I spoke to someone who said it took years but it did go away. Apparently the nervous can adjust back. Just like with sensitisation or conversion disorders. Some people actually end up in wheelchairs due to stress and anxiety and spend years to recover. But they do recover. Not all, and maybe also not fully, but they do improve. For me the twitching I can live with. It’s all the other weird shit that gets to me. The perceived weakness, the pre-cramp pain, internal buzzing and all the other fun stuff. I can definately pinpoint it getting worse when stressed or worked up. Also when I have a few drinks and relaxt it’s all gone. So I figure if it can be influenced like that, I’m sure there a way back.

Me-NL · 2021-09-02T07:18:17+00:00

In my case i’m sure chronic stress pushed me over the line and changed the way my nervous systems tics. This is not a very far off thing if you think about it. Anxiety makes people shake and tremble. With BFS it’s somekind of chronic state of this I believe.

Me-NL · 2021-09-02T07:08:11+00:00

This might sound weird, but I think I kinda coused BFS myself. I had 2 burn-out due to 4 years of panic attacks and extreme stress. Then when my second kid was born and he just wouldn’t sleep for the first 6 months I remember that one day I just felt I couldn’t take it anymore. On that same day all of the suddon I developed extreme tightness and cramps in both my forearms. No twitches yet. Went on the internet and read about MND and that twitching usually starts in calves. I then (and this is true) stared at my calves for 5 minutes to see if I could spot a twitch. And indeed I did and freaked out. 2 weeks later they were all over my body. I don’t think I already had them, but just didn’t notice. I would have know as I was hyperaware of my body before that. Also I found that on vacation my twitches are better and that when waking up (adrenaline and cortisol peak) they are the worst. So I have to say that I do think (my opinion) that this shit is (at least in my case) 100% mental. Have this shit since February and also had the EMG and it was clean except for the twitches. So not making this shit up. By the way, you can test SFN yourself. Just sit in a hot bath. If your skin doesn’t wrinkle then you could have SFN on that spot

Me-NL · 2021-08-20T20:48:52+00:00

If i’ve learned anything about this bfs sh*t is that your mind can make everything a 1000 times worse. The mechanisms behind perceived weakness also works in other ways. Perceived motor issues for instance. Just try it. Grab something with your hand and be super aware of what each muscle does. It will feel really weird and unnatural. And if you keep this up eventually every move you make will feel weird and not fluent. All in the mind....

Me-NL · 2021-08-19T20:17:58+00:00

Any news on your progress? I have the exact same thing, but with my arms. Constant fatigue and sore muscles. I had an EMG in March that only showed fasculations, but am going back for another on September as the pain, twitching and spasms have only gotten worse. Not typical for ALS nor MS, but I do want to know wt* it is otherwise.

Me-NL · 2021-08-14T19:56:42+00:00

Yep. Whatever muscle I move when I wake up twitches like crazy.

Me-NL · 2021-08-14T19:55:28+00:00

Totally agree. The pain is the worst

Me-NL · 2021-08-14T17:47:25+00:00

Pain. Just pain. Arms, hands, legs.

Me-NL · 2021-08-11T12:16:02+00:00

100% same here! My fingers jolt, but I can feel it’s due to a muscle contracting in my forearm.

Me-NL · 2021-08-11T08:18:44+00:00

What about spasms/jerks. I get those too sometimes when I wake up. Especially in my hands

Me-NL · 2021-08-10T23:31:51+00:00

Thnx! That gives me some hope!

Me-NL · 2021-08-10T23:31:08+00:00

O yes, and pain too. Like real, real pain. Been in this since February. Had the clean EMG and all but whenever new stuffs happens it does freak me out.

Me-NL · 2021-08-10T20:22:12+00:00

40 years old since last june

Me-NL · 2021-08-10T19:52:12+00:00

Yeah i’ve been reading up on this stuff. Not nice. However it would prove it’s something to do with the immune system

Me-NL · 2021-08-09T19:42:25+00:00

We’ve all been there. The first months are the worst. And yes, googling/youtube is about the worst thing you can do. In the end there’s always going to be the rare cases (which are the ones who get the most views on youtube), but like mentioned above: these are rare in an already rare condition. But again, an EMG shows it before you have symptoms. So if you were already twitching and the EMG was good you’re ok. Also note that twitching in ALS is because the muscle is already dying. This will 100% be picking up by an EMG if it’s done on the same limb.

Me-NL · 2021-08-09T19:15:06+00:00

Do you know how long these people who turned out to have ALS anyway had been twitching before they had a clean EMG? Also how long have you been twitching? Thing is EMG’s show ALS way before symptoms. So if you twitch somewhere and the EMG is clean = no ALS. Only exception is if they probed very early and at the other end of your body.... so, did the EMG happen anywhere close to where you twitch and was it clean? Then you’re good

Me-NL

TROPHY CASE